Ashley's Bout with Auto-Immune Disease

November 6th

2011-11-06T11:09:00.023-05:00

Where to begin…

We have a lot of exciting news to cover from the last update
back in June. Let’s get right to it!

So dad are you working on an update for my blog, or are you going to wait for all the leaves to fall from the trees first???

We mentioned that Ashley would be going to the Cleveland Clinic to see an Otolaryngologist regarding physical issues with speech. Well it turns out the Doctor referred us to the Indiana University Speech and Hearing Clinic in Bloomington. We went there at the end of September. We’ll get back to that later. First we want to go back and recap Ashley’s summer.

Like you, Ashley had a hot summer. In Ashley’s case I am not referring to the weather. August will stand out in particular. In all areas of Emily’s Walk, Talk, Eat barometer Ashley has made
significant gains.

Ash & Em

Ashley’s bone density was tested in August 2009 and as expected, two years after being stuck by ADEM and having limited mobility she had a significant decline in bone density. This last August she had another bone density scan and we are pleased to report that Ashley’s bone density has improved. Since that bone scan Ashley has dramatically increased the duration,
distance and coordination with which she can walk on a treadmill in therapy.

The treadmill is nothing new, but now Ashley can use the treadmill in up to 3 ½ minute intervals before resting and can spend an entire therapy session (1 hour) using just the
treadmill. If you scroll down Ashley’s blog page you will find a picture of her in the treadmill taken in late 2008. She still requires the harness that is visible in that photo. The therapist still needs to keep an eye on Ashley’s stride and occasionally correct her gait, but it is a wonderful sight to see Ashley walking. If you wondered what kind of a workout it is for Ashley we can assure you she’s not afraid to let them see her sweat!

Walking off the treadmill Ashley still requires balance support. She needs reminders to adjust her posture. It’s like working on someone’s golf swing. You make an adjustment to the stance then the swing gets out of alignment; address that and then the head moves. Whereas we take all of our day to day functions for granted (they’re automatic) Ashley still has to think and coordinate the symphony of moves and limb placements to merely walk across the room.

Another tool being utilized at therapy is the Wii. Yes the video game console. There are a series of ‘games’ that involve the use of the Wii balance board. Ashley stands on the platform with a bar to hold onto for balance. In one game she is guiding a girl in a bubble that is flowing down a river. She has to lean forward to propel the bubble forward. The river curves and has folks so she has lean to each side to avoid popping the bubble on the walls that line the river. She usually requires coaxing from the therapist to lean in the correct direction, but she is getting the hang of
it. It’s nice to see technology that is commercially available that can aid Ashley’s recovery.

Ashley is doing quite well transferring in and out of the car and van. We have to take the wheelchair with us, but she doesn't have to ride in it any more.

With drinking Ashley reached a significant milestone as well. Ashley has been able to eat pureed foods and chew small foods for quite some time. Liquids were what proved a challenge. It has only been since July of last year that Ashley was able to consume enough liquids orally that we did not have to supplement her hydration with the feeding tube (which was removed last November).

With eating Ashley has been able to eat solid foods (we still watch her like a hawk) without choking. It still takes a long time to eat as Ashley slowly improves the coordination of her tongue and cheeks when chewing. Ashley has also done well with drinking liquids without a straw from a cup when it is less than half full. One challenge that remained was sipping from a large diameter straw. With a typical disposable straw Ashley could rely on the tongue alone to seal it and get a sip. With a larger straw it requires a tight lip pursing and some cheek muscles. We have a couple of large (20-24oz) cups with hard plastic straws that were very difficult for Ashley to use. We pretty much left them on the shelf; rarely did we pull them out and have Ashley try with them. One find August day at Ashley’s request we filled one of those cups. It wasn’t immediate success, but Ashley must have felt she was ready. Now we use those cups every day.

Chef Ashley stirring the chili to perfection

Ashley’s coordination with eating is also showing marked improvement. At breakfast with oatmeal she can often eat it with minimum assistance. She is able to scoop it, get it to her mouth, purse her lips and get the spoon right back into the bowl.

Ashley celebrated her 24th birthday last month and her favorite gift came from brother Miles; a Belgian Waffle Maker. Ashley has been experimenting with different ingredients and we have been the cooperative (make that eager) samplers.

Ashley was the breakfast chef when we had overnight visitors.

So let’s get back to our trip to the Indiana University Speech and Hearing Clinic. Dr. Milstein from the Cleveland Clinic had worked at the IU Speech and Hearing Clinic and after reviewing Ashley’s medical records felt that IU was better equipped to address all the issues involve with her apraxia (disorder of the brain and nervous system in which a person is unable to perform tasks or movements when asked) that contribute to her aphasia (impairment of language ability).

We forwarded Ashley’s records to the doctors at IU and even sent them a video a friend and videographer came in to speech therapy and took of Ashley working on speaking. Our appointment was on the last Friday in September which meant we got to have a visit with Miles who is hard at work on his junior year at IU.

They conducted a myriad of tests on Ashley.

They were able to insert a camera into the back of Ashley’s mouth (for short periods since this did trigger her excellent gag reflex) and we were able to view live, and in slow motion replay, the workings of her vocal cords and associated muscles, ligaments and cartilage. Good news. There was no damage from when Ashley’s airway was intubated at UVa Medical Center as a precaution when she was admitted. Secondly, as Ashley made long ‘E’ and long ‘A’ sounds everything moved as it should. They vocalcord folds moved in unison, opening and closing properly. This meant that there was no visible physical limitation that would hinder Ashley’s speech recovery.

That wasn’t just good news that was great news! Until we saw Ashley’s vocal cords in action that last day of September 2011 no one knew if there was any damage or visible paralysis of the physiology involving Ashley’s speech.

The specialists at IU that put Ashley through her paces to assess where her speech recovery was at produced a report of recommendations that are now being implemented by Ashley’s speech therapists. We ask for your continued prayers that this will result in the complete recovery of Ashley’s ability to talk.

We were blessed to have an opportunity to go to Victory Junction for the fourth time in as many years.Ashley and Dad on the 'track' at Victory Junction

VJ (victoryjuction.org) was established in memory of Adam Petty, the son of Kyle and grandson of Richard Petty. Before Adam died in a NASCAR crash he was inspired by his father’s philanthropy to establish a camp similar to Paul Newman’s Hole in the Wall Gang Camp where special needs kids with specific ailments could gather and literally have fun in a fully accessible, action packed environment.

Ashley working on the pumkin craft that now sits on the kitchen table as part of our Thanksgiving decor

When VJ invited the Transverse Myelitis Association to alternate each year between a children’s camp and young adults camp it became a twofold blessing. The obvious was that families with a child living with the affects of these rare demyelinating conditions could share and support each other. The other major benefit is that the doctors that have dedicated their careers to the study of, and search for a cure for, these rare afflictions have always given of their time to attend the events.

So for us the handful of days we spend at VJ are priceless.

Ashley has a client at the Fab Shop; hope Al is color blind

Each time we are encouraged by the steady progress that is occurring to understand the mystery of these afflictions and the progress toward harnessing them and improving the life’s of those that are suffering from the debilitating effects of these acute attacks. Being able to speak one on one with the world’s top medical experts and to see their excitement (and we do mean excitement) at Ashley’s annual progress is beyond motivating for both Ashley and the family.

The comradery that we have developed with the other families is also such a source of strength to face the challenges. No two individuals are affected the same by these disorders. What is evident is that there is hope. No matter how young or old when stricken, nor the time that has transpired from the onset of the attack, there is hope for progress. These gatherings reinforce that possibility for everyone.

The devotion of the volunteers at VJ is also a prized gift. There are a few that have been there all four years and the love they pour into making our visit a great experience is a Godsend.

It is always a pleasure to see Sandy and Pauline. We love you too Kazu!

Ashley continues to enjoy getting together with her friends. She caught up with former St. Marys and Notre Dame classmates prior to the USC game last month. Although we did not go to the game it didn’t mean we couldn’t have a great afternoon tailgating. Thanks Jerry for introducing us to your alums. Slainte!

Tricker-treaters were greeted at our door by Ashley dressed as if she were caught making herself up for a night on the town donning a bathrobe and curlers in her hair.
Earlier in the day Ashley dressed as a therapist wearing the khakis and black shirt that the staff wears. She even posed for a photo with several of the therapists.

Yes I know what you are thinking. Ashley’s ghostwriter can go on and on. Why does he take so long to post an update? There are some things in life that defy both logic and explanation. What
we have come to rely on is the love and prayers that we are surrounded with. It is not an exaggeration in the slightest to say that each week we learn of someone that has been praying for Ashley and our family. We still wonder, “Why Ashley?” We still don’t understand the answer to that question, but as we witness all the hard work Ashley continues to devote to her recovery combined with the outpouring of love showered on us we trust that He has a plan. Thank you for being a part of it! We love you!

Four Years

2011-06-29T16:50:00.009-04:00

No, neither Ashley or her ghostwriter were abducted by aliens. Ashley finally laid down the law today and made it clear there must be an update.

Today marks four years since we last heard a full sentence from Ashley. At times recovery seems painfully slow, but alternative is unthinkable. Ashley does continue to make progress. Each 90 days her progress is evaluated to justify ongoing therapy. She is still going to physical, occupational and speech therapy every weekday. Her progress, although slow, is sufficient to justify the continued aggressive therapy schedule.

An individual Ashley met at therapy has donated Ashley a therapy table that now sits in our family room. This 5’x7’ padded table makes it much easier for her to stretch out and move around. Ashley is able to go from her stomach to being on all fours and then raise herself up on her knees without any assistance.

Ashley also has a new wheelchair that is more portable than her original chair. It is also at a height that allow her to use her feet to move herself around in a room.

I’m pleased to announce that my favorite father’s day gift was watching Ashley reach for and pick up a cracker… with her right hand! While Ashley has progressed to the point that she can eat and drink using her left hand the tone in her right arm prevented doing the same. While there is still significant tone in that arm Ashley is showing an increased range of motion with it. Being able to open her fingers and grab something was an exciting milestone.

Many of you know that Ashley was passionate about doing volunteer work. About a year ago Mary told me that Ashley was feeling blue and communicated to her that she missed doing volunteer work. This past April following therapy Ashley and Mary decided to shop at the ‘baby boutique’ at Lutheran Hospital. While there they ran into the director of the Hope House (which is similar to Ronald McDonald House providing lodging for families that have traveled to be with a hospitalized family member). A conversation led to Ashley being asked if she would like to volunteer at the shop (part of the proceeds benefit Hope House). In July Ashley will start working an hour each week.

In speech therapy Ashley’s therapist have set up her communication PC to ‘speak’ typical statements/questions that are likely to occur when Ashley interacts with a customer (she will be partnering with another volunteer). Needless to say Ashley is very excited about returning to volunteer work and giving back.

In early July Ashley will be seeing an Otolaryngologist (think larynx) to evaluate the potential non-neurological impediments to Ashley’s speech. Ashley is increasing the letters and words she can say but it still remains difficult for her to speak and the words are very soft and hard to distinguish. Our hope is that muscles that have been dormant for the last four years can be reinvigorated to improve Ashley’s ability to talk. We ask that you focus your prayers on the success of this approach in assisting Ashley’s recovery.

While Ashley has not been jet-setting since her trip to Florida earlier this year she has been staying busy. Including a weekend in Canada during brother Miles spring break.

Warm weather also means pool time and trips to the lake to visit with the grandparents.
We have to breakout Ashley's new three-wheel bike soon. She does well on the stationary bike but it is time to move!
She has had several visits with friends and last weekend attended the wedding of high school friends. (Ashley would like to again congratulate Meredith and Greg).

We have learned several things in the last four years. Some of those are…

We are surrounded by loving people that continue to pray for us and are such a source of uplifting encouragement.

Ashley is determined, and her focus and hard work to recover have never wavered.

We don’t know why this happened but we have kept our faith and each time we feel in a slump ‘something’ happens that reminds us of the many blessings we have experienced and shines a new light on the path we are traveling.

On behalf of Ashley and all of our family, a heartfelt thank you for your love and prayers!

February 10th

2011-02-10T09:35:00.014-05:00

Old man winter is not holding Ashley back.

Although it has been three and a half years since she was struck with ADEM Ashley continues to make significant improvements. Some medical literature and even some 'experts' told us most people tend to plateau after a couple of years following a neurological injury be it stroke, physical trauma, or in Ashley's case auto-immune demyelization. While her recover has been slow we find that with each passing month we are witnessing progress we did not see before. Ashley is now transferring to the front seat of the van to ride verses sitting in the back in her wheelchair. Her therapists are submitting the paperwork to get Ashley a new wheelchair that will allow her to move her self (currently with her feet due to the tone in her right arm, though that is improving as well). She has been using a model of the chair in therapy for the last month.

Ashley, along with the rest of us enjoyed a Christmas season full of family and friends. That included visits from two friends that have now traveled to separate Central American countries to do social work. Please keep Adrienne and Andrea in your prayers.

Ashley's voice continues to improve. Her best word to date is her name. She has very good pronunciation of the first syllable "Ash" while the "Lee" portion is still soft. Upon flying back from a trip to visit her grandparents she clearly stated "Home" when the plane touched down.

Her right arm is showing a wider range of motion and Ashley is able to move it (shoulder, elbow, wrist and fingers) much faster than in the past. She has even been able to support her weight on her right side with her arm and is now using it to assist in getting up from that side.

Eating is also improving. Especially when it comes to solids. Ashley is improving her eye-hand coordination from picking up foods to getting them in her mouth and then just as importantly keeping her heard up and keeping the food in her mouth. Along those same lines Ashley is doing extremely well drinking the last few sips from a glass. Currently she is doing most of her drinking via a straw. At times she does quite well at grabbing the glass, getting the straw into her mouth, pursing her lips and taking sips. At other times she needs assistance either holding the glass still once she has it to her mouth or properly pursing her lips so she can sip from it.

Once we get down to the last ounce or so we remove the lid and straw. It is inspiring to see her pick up the glass, put it to her lips and take a drink. Her sips are smalls, but she doing it accurately and we know her intake volume will improve as well.

Last week Ashley as well as Mom and Dad took advantage of the gift of a trip from her grandparents to visit them in S.W. Florida. While Fort Wayne experienced a blizzard we were at the pool and beach with sun every day and temperatures in the low 80s.

Only one thing was more enjoyable than the weather and that was the people that we visited. On the day of our arrival the community that her grandparents live in had a party. Austin Miles (who was studying hard at IU during this time) posted a video taken by Helen of Ashley dancing that night to Black Eyed Pea's "Tonight it going to be a Good Night" on Ashley's Facebook page. We were able to meet many of the people that have been praying for Ashley and providing Grandma and Grandpa with love and understanding during this time. What wonderful folks. We understand why Ashley's grandparents enjoy their winter home so much. We got to see many of these caring and fun individuals several times during the week at the pool, in the neighborhood and at a pancake breakfast our last day.

On Sunday we traveled to Miami. In the summer of 2008 Austin Miles and I met George, his wife Ileana and his sister and brother in law Ana and Tony at a conference on demyelinating conditions. George was struck about six months prior to Ashley. Although the doctors first told Ileana he would not likely survive the first week you can see from the photos that George took on this challenge and is winning. He has had a faster recovery than Ashley, but like all ADEM encounters he still has issues he is focusing his efforts on. Although Ashley and Mary had not met them previously it felt like a family reunion when we met. As Ana said so well, when you have two families with such a unique connection there is a special bond that forms. We had a great afternoon of shared conversations over a wonderful meal.

Ashley and George have something of vital importance in common...immediate and extended family that pour their love and support into them. I shutter to think what it would be like to go through what they face without that support and the prayers that are lavished on them.

George's mother sent a note addressed to Mary. It was a mother-to-mother note with George's mother sharing the empathy that only another mother knows with Mary. It was very touching.

As we drove back to Naples that evening the three of us agreed that if we had to leave after just these first two days it would have been worth all the travel and effort to experience them.

As it was we had six more days of fun in the sun and Ashley took full advantage of them. Monday found us in the pool soaking up the sun. Her great aunt and uncle visited on Tuesday as we got word that a blizzard was heading toward Indiana.
On Wednesday Ashley checked shopping at 'Tin City' in downtown Naples off her list and spent the afternoon on the white sands off the Gulf of Mexico. Thursday was a gathering of several friends at Grandma's and Grandpa's.
Friday and Saturday Ashley could once again be found at the pool.

What a wonderful gift to have spent time with such beautiful people in a pleasing environment. Ashley's smile was nearly permanent during the entire trip as she took in all the love that was directed her way. We too felt the sincere love and care all of them expressed to us. God has placed a lot of special people on this planet and we have been blessed to have crossed paths with so many of them. Thanks Mom & Dad!!!

Having flown into Indianapolis we meet with Austin Miles (after chipping all the ice off the car) in Maritinsville for lunch and to catch up with him. He is getting settled into his second semester of his sophomore year and is enjoying his classes. While it would have been great to have him with us for the trip he expressed his happiness that Ashley had such a good time. He's a wonderful brother to have (and an adorable son as well)!

December 9th

2010-12-09T13:23:00.007-05:00

What a couple of months Ashley has had.

Our last update was just prior to our Victory Junction Camp Weekend with the Transverse Myelitis Association. Our third trip; what a blessing. We caught up with several old friends and established many new ones that we will treasure.

Out on the dance floor with Crew Chief Vandy and Mom

Ashley is asking Crew Chief Bill if she can have the Taylor Swift pickup truck when Victory Junction isn't using it.

So are we close or what? (l-r) Jeff, Pauline, Mary, Dr. Sim, Ashley & Sandy

Pauline and Sandy's son Dave and his wife Kat volunteered and kept Ashley's smile bright.

What made this trip stand out was that it provided an opportunity for a historic gathering of people with ADEM. Below is a photo of 6 individuals with ADEM (not counting Betty Boop in the VJ theater). At no other time, or place, have there been as many gathered. It certainly puts into perspective how rare it is. With that said we are extremely fortunate to have such a dedicated support group and collection of doctors, researchers, therapist and specialists that are dedicating themselves to healing demyelinating illnesses.

Nice October weather allowed Ashley to take a spin on her bike. Yes, bike. Ashley now has a 3-wheel bike. We have every expectation that come spring Ashley will be ready to do some real biking.

Ashley assumed the role of handing out candy on Halloween. She had a busy night. She donned her UVa Medical Center Neurosurgeon garb as a costume.

Ashley’s new netbook (gift from Midwest Orthodics) is getting a lot of use. We have loaded MicroSoft Office and will be installing speech therapy related tools. We have joined the legions of folks that are now Skyping on line (what a great way to communicate). Ashley is hoping for more eBooks for her Kindle for PC application (we can adjust the font size and Ashley can advance pages by touching the screen) and audio books that she can also play on the portable PC. We feel pretty confident that she is on Santa’s good list this year.

We had a download issue on the WNDU news story link that covered Ashley getting her PC. That has now been fixed and can be viewed from the link in the right column on the blog.

On November 2nd Ashley cast her first vote. As such if she wants to complain about anything political she has earned the right.

The crowning event in November is a significant milestone that Ashley reached. Just before Thanksgiving Ashley had her feeding tube removed! Since mid July Ashley has taken all her nutrition and hydration orally so she was given the green light to have it removed. It was an quick in-office procedure and it has healed up nicely.

December 2010 will be marked in the Ashley archives as a pivotal time in her speech recovery. The mechanics are coming together. Ashley is forming words and is making dramatic improvements in pushing air through her vocal cords to get recognizable sounds. While there is still a long way to go the progress in the last couple of weeks has been amazing.

Another area of major improvement is with Ashley’s right arm. This is not a photo-opp. Ashley is now able to hold the posts on the stationary bike with both arms and petal continuously. Note that she does not need an ace bandage on her right hand to keep it on the post.

We continue to be in awe as Ashley perseveres in her recovery. We receive words of encouragement everywhere we go and know that you are all continuing to pray for Ashley. We thank God for you all.

Have a Merry Christmas, Happy Hanukkah and a blessed New Year!

October 5th

2010-10-05T10:33:00.011-04:00

Where do we begin to talk about an exciting September?

As is always the case Ashley has pushed herself in reaching new goals in therapy. One of the most exciting achievements was in speech. A bit of background first. ADEM has affectd Ashley's vision. It is not so much the clarity as it is her ability to maintain focus. An example is drawing two thick lines on a 3' x 2' whiteboard. It is difficult for Ashley to follow a specific line from one side to the other.

With that in mind what occurred during speech last month amazed us. One of her therapists pulled out a card that had a sentence on large font that filled a few lines. She asked Ashley to look at it. She than asked questions about the statement. Ashley answered them all. She has regained the ability to focus sufficiently to read!

September means football and gave us a chance to visit Austin-Miles and take in an IU game. What made it even more special is that it fell on Ashley's birthday. Austin-Miles chose the restaurant, Yogi's (good food and atmosphere) and we had a great time catching up with him and celebrating Ashley's birhtday. Then it was off to the game. We caught up wiht Ashley's friend Emily and her boyfriend Dean. It was an evening game and the weather was ideal.

Austin-Miles was filming from the south end zone above the scoreboard (he's between 'Indiana' and 'University'). The entire 90' x 30' scoreboard is one huge jumbo-tron.
Here is the view Austin-Miles has. We were sitting in the first row on the right side (east) of the field.
They showed the plays live and even though we were in the front row at midfield we found ourselves watching the live action on the scoreboard as often as we were looking at the field. During half time several high school bands joined the IU band. It was fun being so close to the field to watch them and also having the benefit of looking up at the screen to the 'bigger' picture going on out on the field.
Backing up on the calendar a bit; Bernie Veldman of Midwest Orthotics, the company that provides Ashley with her ankle-foot orthotics (AFOs), said he wanted to do something special for Ashley. Bernie and his staff went well beyond that. I'll direct you to the WNDU-TV link under 'News Articles on Ashley' in the right column on this page and to the video link within to see exactly what they provided Ashley. Then read on...

This hybrid PC combines the functionality of a fully loaded PC with the adaptability of a tablet with a touch screen. Ashley has been improving her ability to use the touch screen on her communication PC. While she still needs assistance in supporting her arm, she is able to touch the large icons on the screen to launch Facebook, Audio Book Reader, Internet Explorer (which defaults to this site as its home page), Skype and Kindle for PC. In addition there are speakers mounted on the back of her chair that provide excellent audio when Ashley plays her iTunes which are also accessible on the PC. Below we were taking a walk on the new walk/bike path in our neighborhood while listening to music on Ashley's new PC. There is a trackball mounted on the left side that will help Ashley improve the motor skill of her left arm. Another benefit coming from the trackball is that it will help Ashley control her electric wheelchair that has a joystick mounted on it.

Earlier I mentioned that Ashley read large font sentences on cards at therapy. We downloaded Kindle for PC. As a test we downloaded a free book and found we could adjust the font size to what Ashley needed. Just as she did in therapy Ashley was able to read and answer questions about the subject matter. What increased our excitement was that Ashley merely has to touch the right side of the screen to advance the page, or the left side to back up. She can place a 'bookmark' where she stops so the next time she opens the book it will open to where she left off.

We have also downloaded an audiobook that we will be listening to via Ashley's PC during our road trip to Victory Junction Gang Camp in North Carolina. As you can probably picture, this device is more than a mere convenience. It is opening up several doors toward Ashley's recovery. We can not sufficiently express our thanks to Bernie and his fabulous staff.

Another wonderful person that came into our lives is David Affholter. Followers of this blog will recall from the July posting that David and his wife Emily had their third child, Hope Ashley, that our Ashley is pictured holding. In this link David tells the story of faith he experienced via his life altering injury and meeting Ashley that includes a song called 'Swingset'. Well done David, well done! http://www.facebook.com/video/video.php?v=152268941478030

We will be going to Victory Junction soon. We are looking forward to seeing more of the amazing people God has put in our lives. Count on us to take lots of pictures and to post them as soon as the internet connection allows.

May God bless your October!

September 3rd

2010-09-03T10:36:00.003-04:00

August was a wonderful month for Ashley.

There was a trip to the lake. She supervised Austin Miles' move into his Bloomington apartment. Multiple visit from friends. Ashley continued to make great strides in her recovery as well. During the entire month of August she took all her hydration orally. At times Ashley has been able to hold a glass and sip through a straw without any assistance.

Ashley offering Austin Miles some decorating tips for his apartment

During a check up with her doctor last week it was decided that if this wonderful advancement stays on track Ashley will have a swallow study in October. We expect that to have positive results and for her feeding tube to be removed shortly after.

Ashley continues to make progress fighting the tone she has in her right arm. It is still a struggle, but is insisting on using it more and we are happy to assist.

Although Ashely amazes everyone with her unwavering spirit and motivation it seems like a second wind kicked in during August. She didn't seem to tire as often as she worked at tasks. In fact she has been pushing us to extend the therapy regimens we do at home. When she is on the exercise mat at home she is doing leg lifts and stretching with vigor. She is truly pushing herself and she is seeing positive results.

Ashley with some of her cousins during the family reunion at Big Lake

Here's a first. During the Slater family reunion Ashley's Aunt Jill got a three-wheel bike for her birthday. Below you see Ashley on the bike. It was more than a mere photo op. Ashley pedaled and even in the grass was able to go a good distance.

We are excited to see the progress Ashley will display in September. We will be making a trip down to one of the IU games to visit with Austin Miles and now Ashley has two friends that have just started grad school at IU. Hopefully they will be able to pull away from their studies for awhile and tailgate with Ashley.

October is another month that has us energized. We will be making our third trip to Victory Junction Gang Camp ( http://www.victoryjunction.org/ ) in North Carolina (hopefully hurricane Earl doesn't have a cousin planning to drop by). This will be a weekend event so we will be packing a lot of activity into a short period of time. Ashley will be seeing some 'old' friends and we will be meeting new ones that we have only had contact with via the phone and internet. Victory Junction is a magical place because it facilitates the gathering of those with a common bond.

We are so fortunate to have the Transverse Myelitis Association ( http://www.myelitis.org/ ) fellow members for support. It is awesome to experience the camaraderie that developes between those that suffer from the affects of demyelinating conditions as well as their families and the fantasitic group of doctors that have devoted so much time, understanding and love to help.

We hope your summer has been as blessed as ours. Your continued prayers have certainly played a role in making it so. As we head into the fall Ashley and the rest of us will continue to offer prayers of thanks for all that you have meant to us as we continue along our journey. God bless you!

July 27th

2010-07-27T12:09:00.002-04:00

It has been an exciting July.

Trips to the lake for the holiday and for cousin Jessica’s graduation party. Each time the weather has cooperated and the low humidity has made those upper 80 and 90 degree days enjoyable. Andrea, Ashley’s friend from St. Mary’s, came for a visit. A namesake birth with family friends.

We just received our hardcopy of the Transverse Myelitis Association Quarterly Newsletter. Transverse Myelitis is the spinal cord condition of ADEM. Sandy Siegel, President of the organization and the newsletter editor published an article on the visit we had back in March with Sandy and his wife Pauline, and it was our first opportunity to meet Al Lugo in person. There is a link to the article in the right column under ‘News Articles on Ashley’ titled “Ashley meets Dr. Lugo March 2010”. Be sure to have some Kleenex nearby as you read it.

Another special person in Ashley’s life is Dave Affholter. Two years ago Dave suffered a severe spinal injury but made a remarkable recovery. We met Dave, who was the Videographer for the University of St. Francis Football team, when Austin’s football coach introduced them. Dave arranged for Austin to meet the Videographer at IU which lead to Austin working for the IU team (a job he loves). Austin also works for Dave during the summer and just this month was down in Alabama filming the National 7-on-7 High School Championships.

We soon introduced Dave to Ashley and they immediately formed a connection. Dave could relate to the issues Ashley faced in rehabilitation since he had experienced similar challenges.

Dave and his young family have visited several times and it is always special. On July 7th Dave’s wife Emily gave birth to their third child. Her name, Hope Ashley.

Needless to say Ashley is Hope’s biggest fan.

Ashley’s motor skills with her left arm have improved markedly this month. She was in the front seat of the car and was able to reach across and unlock the car door without any assistance. She is increasing the tasks that she is able to accomplish at therapy as well.

On the communication front Ashley is now able to hold her communication PC’s activation button in her hand and squeeze it rather than rely on raising her arm. This is significant since the only support we have for the button is on her wheelchair. Now wherever Ashley is she can use her PC to communicate. Please pray that the sound will soon come behind the letters and words Ashley is mouthing.

Ashley’s oral intake of fluids also continues to improve. We are optimistic that her feeding tube will be gone before the year is out.

Although progress is slow it is miraculous. A little over a year ago I wondered if she would ever be able to close her lips on her own. Now she is forming letters and words with them. After three years of recovery Ashley shows no signs of slowing down.

Thank you for all your prayers. Every day we see the positive impact not only on Ashley, but on the rest of us. Your prayer support has been a source of energy for us and we are ever so grateful.

3 Years

2010-06-30T09:48:00.009-04:00

It has now been three years since Ashley was suddenly and unexpectedly struck with ADEM Acute Disseminated Encephalomyelitis. Since then her recovery has been slow, but Ashley continues to show signs that she will not give up.

>Although she has yet to find her voice there are more sounds and an increase in the letters and even words being mouthed.

>Based on her improved ability to go both up and down stairs Ashley is sleeping in her own bed almost every night now.

>Pureed foods are still necessary, but Ashley is able to chew and can even use her left arm to place foods in her mouth. Her right arm still has a lot of tone but she is able to move her fingers and arm. Since being home Ashley has maintained a healthy weight within just a few pounds. She is the healthiest eater in the house.

>Orally consuming liquids is still a work in progress, but there has been a lot of progress. Ashley is typically drinking over 36 ounces a day and now rarely coughs or chokes.

>The affects of ADEM make it hard for Ashley to focus for reading, but she has become a big fan of audio books. Each day going to and from therapy she is listening to an audio book. She listens to a range of categories. Nickolas Sparks ranks high as her favorite author.

>Keeping up on current events is also important to Ashley. She likes to watch the local and national news and we discuss various topics.

>Ashley has not wavered in her faith. Just try to begin a meal with her before saying grace and you will get a scornful look from her. At mass she is able to receive the Eucharist.

>At night she still is wearing Ankle/Foot Orthotics (AFOs) so she needs assistance turning, but Ashley can sit up in bed and when her AFOs are off she can swing her legs to the side of the bed. At that point she only needs balance assistance to stand up. Her muscle tone continues to improve.

>Ashley is a good hugger and is now puckering up for kisses. Of course she still has her award winning smile which melts everyone that comes in contact with her.

Throughout her life Ashley has set goals and worked hard to achieve them. She also knows that she is the source of inspiration to so many others. Giving up has never been an option. Ashley has adapted and continues to strive for every milestone. Each time she reaches one and receives affirmation her beaming face is reflection of God’s love and Ashley saying, “It is not just me, it is everyone that has prayed for me that can share in this and each victorious step I make in my recovery.”

So what has Ashley been up to the last two months? Given the beautiful weather we have had most weekends there have been several trips to the lake to visit with the grandparents and other relatives. Last weekend she saw her first 3D movie, Toy Story 3. Given all the coming attactions that were also in 3D it looks like this format will soon be the standard. At least the glasses are stylish.

A boat ride with mom on Mother's Day.

Dad gets a hug on Father's Day.

Soaking up that vitamin D and summoning the lotion boy's stand in, Austin Miles for some more block out at the lake.

Don't disrupt Ashley while she is getting caught up on the day's news. She is the go to person for what's going on.

Hanging out with Grandpa, dad and cousin Alex (he is kneeling).

On behalf of Ashley and our family, thank you for all your support. We pray that God provides you with the blessings of love we have felt and that your summer is full of sunny days.

April 30th

2010-04-30T13:32:00.001-04:00

The saying is “April showers will bring May flowers”, but with Ashley we are wondering if “April voicing and letter/word patterning will bring May speech”. That statement may be premature, but given the strides Ashley has made so far this year it is not out of the question.

Ashley has been more vocal and she is increasing the number of letters and even whole words that she is forming. Add to that the increased amount and regularity of vocalizing and it looks promising.

Just three months ago the speech therapist was coming down to watch Ashley in the pool during physical therapy because she was vocalizing and the therapist want to hear her (we think the water pressure on her diaphragm made it easier to push air through her vocal cords). Now Ashley is voicing up each day in speech therapy.

Physical strength is also continuing to improve. Ashley is now often able to stand up and balance from her wheelchair without assistance. While there is still tone in her right arm she is showing an broader range of control of not only that arm, but also her fingers.

In the past week Ashley was able raise up from all fours to balancing on her knees. In addition to that she then pulled on a ‘thera-band’ with her left arm. The therapists were impressed with her ability to maintain her balance while also repeatedly pulling on the resistive device.

Yesterday Ashley wrapped up another round of serial casting on her right ankle. For three weeks she had casts placed on that lower leg twice a week in an effort to improve the range of the ankle. The measurements following the castings were not all that great, but time will tell now that it is off as she begins walking with the same shoes on both feet.

Later today we will be off to visit Grandma and Grandpa who recently returned to the Hoosier state from the Sunshine state. This will be the first time they have seen Ashley since October and she is ready to show them the progress she has made.

March 29th

2010-03-29T17:42:00.003-04:00

March on!

This has been an exciting month. Ashley has done exceptionally well with liquids this month. She is now drinking 8 ounces of milk or juice at each meal. In addition to that there have been several days that she has had drinks in between meals. Just yesterday Ashley drank a 16 ounce shake. Thankfully what is becoming more rare is for the liquid to go down wrong and cause Ashley to choke.

Our next step will be to start giving Ashley skim milk as we move to thinner liquids. Once we see she is able to consistently drink water without an issue her feeding tube will be history.

Austin was home two weeks ago for spring break from Indiana University. While we all enjoyed having him home for a visit it was obvious that Ashley was delighted to spend as much time with him as she could. Austin is doing quite well at school and Ashley is quite proud of her little brother.

Ashley’s long time swim pal Rachel visited her at therapy during break. Rachel is studying to be a therapist.

We have great news to share on the communication front as well. First, when Ashley wants to communicate something we either have her spell it on her PC (with her button she can pull up a visual QWERTY keyboard and select letters as the PC goes through them sequentially). If the PC is not at hand we go through the alphabet orally. As you can imagine this takes a bit of time. We finally noticed that Ashley was often moving her lips and tongue when we would ask if she wanted to spell. We put two and two together and realized that Ashley was showing us the letters she wanted.

Last week Ashley ‘mouthed’ B-A-B-Y B-E-N. I guessed the letters without going through the alphabet and learned that my nephew Ben and his wife Beth were expecting their first child. Congratulations Ben & Beth! It was a wonderful way to get the news.

The second advancement with communication is that Ashley is training with an ‘eye-gaze’ computer. As mentioned above Ashley uses a button to select pre-established options on her PC. When she hits the button with her left arm the PC says what the selection is. As such Ashley has to wait for the PC to sequence through the options and then hit the button when it reaches what she wants to express.

Eye-gaze is an attachment to her custom PC. I would compare it to the Wii game console. Anyone that has a Wii knows that there is a signal reception bar that you place next to the TV that displays the games. That signal bar detects the movement of the Wii hand sets and translates that into movement within the game in real time.

The attachment on Ashley’s PC (following a calibration set up) can detect exactly where Ashley is focusing her sight on her PC’s screen. If she holds her sight in one spot for a selected period of time (a fraction of a second) a red dot appears on the spot and acts the same as if the touch sensitive screen where pressed.

Ashley’s eye sight has been affected by ADEM so we were not sure if she could even use this technology. So far it looks promising. Ashley has gone through several tests of the system and while parts are still a challenge it appears that this will work. The result is that Ashley will be able to ‘look’ immediately at a selection rather than wait for the computer to cycle through all the options. As the icons get smaller and more are added to the screen it starts to overwhelm Ashley’s ability to process, but that was to be expected. We are confident that with time she will be able to work her way to having more and more options on a single page. The good news is that we can customize the icons to the size that works. So at first she may only have a handful of icons at a time. Yet as her brain adapts we will be able to reduce the size of those icons and get more on a single screen.

Ashley’s accomplishment in other areas gives us the confidence that she will successfully adapt to the eye-gaze. As with those other accomplishments it is a combination of Ashley’s hard work, positive attitude and all of your pray support. Thank you!

This last weekend we had the pleasure of meeting Al. Al was struck with ADEM shortly after earning a degree in Chemical Engineering at Michigan. He had just started a job. That unwelcome event in his life turned into an epiphany. Al will graduate from medical school at Ohio State next month. This fall he begins his residency in neurology in Detroit.

Accompanying Al were Sandy and Pauline whom appear in pictures throughout this blog. Pauline contracted Transverse Myelitis over 10 years ago. The two of them spearheaded the creation of the Transverse Myelitis Association (myelitis.org). Because of their efforts we were able to find the experts that helped with Ashley’s diagnosis and treatment. That also put us in contact with other families facing rehabilitation and lead to our attending a symposium on these related diseases and our two trips to Victory Junction Gang Camp in North Carolina.

As we were swapping cameras and taking shots I failed to get Sandy, Pauline and Al in the same photo.

From right to left, Mary, Ashley, Pauline and Al. Kazu is catching a nap at their feet.

Here are Sandy, Mary, Ashley, Jeff and Al.

We visited for about five hours, but it felt like a lot less. Al still feels the affects of ADEM. It is nothing short of miraculous that he was able to successfully complete medical school. In turn we realize that Ashley shares those priceless traits of motivation that Al has. His perseverance provides all of us with the confidence we need to see Ashley reach her full potential. We are blessed to know Al and we look forward to talking with him in the future.

We will be keeping you in our prayers Al. Ashley’s legions of supporters will be praying for you as well.

Al is hoping to attend the next young adults’ weekend this October at Victory Junction. We are looking forward to hearing how he has settled into his residency at that point. Sandy and Pauline will be there as well. The young adults’ weekend was the first Victory Junction event we attended in October 2008. Ashley is looking forward to seeing many of the participants she met at the first camp.

What a wonderful start to spring. Each of you reading this blog has played in instrumental role in Ashley’s achievements. We have had the honor of meeting many of you, and you have personally encouraged us. Many more are cheering Ashley on and we appreciate each and every one of you. God Bless You!

February 28th

2010-02-28T15:47:00.004-05:00

Let it snow…

Ashley took advantage of the heavy snow this month by going for a sled ride through the back yard.

The most exciting advance this month has been Ashley’s improved ability to swallow fluids. As followers of the site know Ashley has been eating pureed foods for over a year. Drinking liquids without occasionally chocking remained a challenge. Ashley has been drinking up to 3 ounces in a sitting the last couple of weeks without a problem. About a week ago we heard a sound that would normally be considered poor manors, but for us was an event for celebration; Ashley, using a straw, reached the bottom of her glass and slurped!

We have every confidence that 2010 will see the removal of Ashley’s feeding tube. Thank you all for your continued prayers that have helped Ashley reach this point.

February means Valentines Day and Ashley pitched in to make some cookies.

Speaking of cookies…

On the eating front, as we reported last month, Ashley has been able to pick up a pretzel rod and graham cracker and get it to her mouth and take a bite. It is still a laborious process but Ashley just yesterday added a third item to her list. She is now picking up cinnamon flavored corn puffs and eating them. We are looking forward to the day that she can have a bowl of these and eat them like popcorn all on her own.

The Eating portion of Walk, Talk and Eat is on a promising track.

Since Ashley has had physical therapy in the pool twice a week she has increased her ability to kick her legs, roll over and as you can see from this picture Ashley is a right at home in the water.

Ashley is getting down the stairs from her bedroom on the weekends easier. She is going down side ways using the wall for support. While we were right there to spot her she took most of the steps on her own. This approach has proven a lot easier for Ashley than going down straight.

Last week Ashley accompanied Aunt Ann and Mom to the Fort Wayne Home and Garden show. They had a good time seeing the wide variety of exhibits. Later Ashley said the variety and sheer size of the show made it tiring for her. All of that visual stimulation is still a lot for her to absorb. Even so she had a good time and was glad see went.

While we are still relying on spelling words with Ashley our conversations continue to broaden. We are going beyond responding to basic needs and comfort and getting into more in depth conversations. This is a good thing because Ashley is frequently reminding both mom and dad of things we discussed in the past and forgot to follow through on. It just shows how complex Ashley’s malady is. While some functions are severely affected by her demyelization there are some areas that are not affected and, encouragingly, other areas that are healing and revealing welcome progress in her recovery.

Although we still have snow on the ground we are anxious for some warm weather in March so Ashley can get outside and take a walk in the neighborhood. It may be a short walk but it will be a walk and we hopeful that it will be the start of ever increasing distances this year.

January 31st

2010-01-31T19:54:00.002-05:00

Ashley is off to a great start this year.

The biggest advance is that Ashley fed herself. She picked up a large pretzel stick and she was able to get it to her mouth, take a bite and eat it. While it is not a seamless flow, it takes her awhile to get the pretzel to her mouth, it is a significant milestone. For the first time in over 30 months Ashley has given herself something to eat. She has also added graham crackers to her practice.

In therapy Ashley walked (with support, but without any patterning) around the entire Lutheran Hospital outpatient rehabilitation main room last week. That’s about 200 feet.

While we are still waiting on those first words Ashley is mouthing individual letters of a given word. It gives us a chill of joy up our spines to realize that she is closing in on regaining the complicated mechanics of what we pray will be her restored voice.

Pool therapy is back twice a week. The buoyancy allows Ashley to walk more fluidly. She also rolls from her back to her stomach with relative ease. She moves her legs to the therapist’s request more frequently and to a greater range. The pool time is a definite plus. One thing the physical therapist noticed was that Ashley was more vocal in the pool. They shared that with speech therapy so her speech therapist came to the pool (this is in a separate facility) to see what Ashley was doing to possibly augment her speech rehab.

Ashley is improving her practice with drinking liquids with a straw. While Ashley very rarely has a problem with choking when it comes to food (pureed, or something she is chewing) liquids are still a challenge. She will master this with time as well.

Ashley visited with several friends before they returned to school and even took in a movie (Blindside) with two friends (Rachel and Jessica who coincidentally are studying to be a physical and occupational therapist respectfully).

We traveled down to Elwood, IN for a post holiday Slater side of the family get together a few weeks ago. Ashley’s cousin Lara and her husband Daniel were our hosts. It was wonderful to visit with the extended family. Ashley’s progress was on display. She walked into the house (with support) and enjoyed visiting with everyone.

Ashley also has paid a couple of visits to the newest addition to the extended family, Nora Grace.

We continue to witness the miracle of Ashley’s healing that is a direct result of all the ongoing pray support that we are so fortunate to receive. We cannot fathom how anyone could confront the challenges Ashley faces while maintaining such a positive focus and optimism without strong faith. Ashley is unwavering in her faith. She will not begin a meal until grace is said. She takes on an aura of peace at night following evening prayers at bedtime. Although Ashley cannot speak aloud yet she most certainly has an open line of communication with God. He has plans for Ashley and we have seen first hand how she has such a powerful, positive impact on so many people that have crossed her path.

Ashley’s friend Emily coined the phrase Walk, Talk & Eat. We are praying that 2010 is the year when ‘talk’ joins ‘walk’ and ‘eat’ in Ashley’s rehabilitation. We appreciate your prayers for words to flow from Ashley again.

New Years Eve

2009-12-31T22:00:00.002-05:00

Ashley has had a busy December. We hope to publish the highlights and post some pictures over the weekend. That said Ashley didn't want the New Year to begin without her wishing all of you a Blessed and Prosperous New Year. Each one of you, through prayers and other support have been important part of you on going recovery.

May God Bless You! Ashley, Austin Miles, Mary & Jeff

November 30

2009-11-30T17:48:00.005-05:00

One of the most common topics over the Thanksgiving weekend from family and friends alike was, “When are we going to see an updated posting?” There is no excuse for the extended hiatus. It has been a month and a half. I hope the Ashley blog following faithful will pardon me. Of course after reading the latest with Ashley I’m sure the wait will have been worth it.

Ashley has kept busy and has been working hard.

She has been standing on her own with increased frequency (not holding anything). She has exceeded six minutes at home.

In therapy she has walked three lengths of the parallel bars with the only assistance being to turn around to begin the next stretch.

She has walked with a therapist just holding a hand for support.

In the past couple of weeks Ashley has increased the control she has over muscle groups. She has shrugged her shoulders on request and, no doubt in her bid to get back on the dance floor soon, she can shake that grove thing!

Another important advance has been with drinking liquids. Ashley is gaining more control over her jaw and lips and is drinking more each week. She still needs the tube for sufficient hydration and to get her few remaining meds and vitamins. We don't know when, but it is obvious now that the tube will be going away.

While we are still waiting on those first words Ashley is communicating more and more via her computer, spelling and glancing at objects. While it can take awhile to communicate we are moving from simple necessities to more quality of live conversations with Ashley. She is able to tell us in more detail what she wants, how she is feeling and even comment on discussions we are having. She has certainly come a long way.

Often times we lose focus getting a meal ready and forget what is important. Whenever we are at the kitchen table ready to eat Ashley looks up at the cross over the doorway to remind us to say grace prior to the meal. This young lady is focused on her faith and she is seeing that her prayers along with the multitude coming from all of you are being answered.

We were able to make a trip over to Notre Dame and Saint Marys earlier this month and had splendid weather and an opportunity to see several of her classmates and friends. Although Navy spoiled the day for the football team Ashley had a great time visiting.

A late birthday gift for Ashley was attending the Trans Siberian Orchestra concert in Fort Wayne. We were in the forth row center. What a show!

Austin was home for thanksgiving and Ashley loved spending time with him. In addition to talking about his course work and ‘life-in-a-day’ of an IU student he talked about his videographer duties with the football team. He traveled with the team to Penn State and was on the field filming with over 100,000 screaming fans surrounding him. Ashley had the opportunity to get up close to watch Austin work (that's him with the video camera) during the Oaken Bucket game between Indiana and Purdue a couple of weekends ago.

Some of Ashley’s high school friends visited over the holiday weekend adding to the special time she had.

We have a lot be thankful for. As we prepare for Christmas we wish all of you to have a most blessed season. From Ashley and all of us!

October 16th

2009-10-16T15:04:00.007-04:00

Ashley has continued to progress, stay busy and have fun!

Last weekend Ashley participated in a workshop that culminated in a play for children and young adults with ‘Augmentative and Alternative Communication (AAC) Devices. One of the local TV news stations came out and filmed them while they were practicing. The link to that is in the right column of the blog under ‘Ashley on Broadway… Almost’ Within the link is a button to view the video that played on the news.

It was a fun weekend. There were five boys/guys and Ashley. Mary and I, along with the other parents painted the stage backdrops while a class of senior IPFW speech therapy students worked with Ashley and the others programming their lines into their communication devices.

The play was called “Imogene’s Antlers” by David Smith. A girl (Ashley) wakes up to find she has grown antlers. She takes it all in stride, but her family and the school principal are not as accommodating. It was fun to watch. Ashley had a dozen lines that were programmed into her PC. She did a great job of selecting the correct line which was then heard throughout the auditorium.

Prior to getting involved we didn’t know what to expect from the play. As they rehearsed we realized that this was going to be an interesting show. Between family, friends and therapists we invited we probably accounted for a bulk of the audience when they performed on Sunday.

Another benefit was meeting and talking with other families that are dealing with alternative means of communication with a child. It is always helpful to talk with others that have, ‘been there; done that’.

Ashley is continuing with the serial casting on her right leg only. This is helping her posture and making it easier for her to walk. Her left foot is to the point that it does not need the extra help of a cast. She still wears her Ankle, Foot Orthosis (AFO) during the day and at night. Her right foot has made major progress. She is now able to ‘reach neutral’ which means she is able to stand flat on her foot at a ninety degree angle. She will continue doing the castings (replaced each Tuesday and Friday) through October 27th. No doubt this has helped Ashley reach the significant milestone of being able to stand and balance on her own.

Next weekend we plan to drive over to St. Mary’s and Notre Dame to visit with her classmates prior to the Boston College game. This would be Ashley’s senior year. She has a great group of friends there that have been very supportive.

We are still waiting on those first words. Ashley continues to increase her vocalization. She is getting more control of her diaphragm. We have every confidence that her voice will return.

Happy 22nd Birthday Ashley

2009-09-25T17:16:00.010-04:00

Yes Ashley has reached the ‘double duce”. As you can see Ashley celebrated with the therapists this afternoon. She has received a bunch of cards and phone calls. On behalf of Ashley, “Thank you!”

Ashley's Favorite-Carrot Cake

Since our last update we have a lot of exciting Ashley news.

Standing and Balancing – Ashley is now able to stand up under her own strength from the therapy table and not only that she is able to balance without anyone, or thing, supporting her. Ashley has stood on her own without assistance for more than two minutes. Way to go Ash!

On the therapy table Ashley was also able to go from being on her hands and knees to raising her self to being on her knees. Again without any assistance. At times it seems like Ashley’s progress is moving too slow, but when we see her do things like that it reminds us that we are on God and Ashley’s time. We just have to keep the faith and provide Ashley with the tools and support she needs to continue to improve. Thanks to all of you that keep her in your prayers.

We had front row seats to the IU Western Michigan football game when we went down to visit Austin. What was neat about that is the handicap seating is behind the visitor’s bench which enabled us to see Austin at the top of the press box where the IU videographers are. In turn he was able to see us and his grandparents that were further up from us in the same section.

Ashley is in the front row while Austin is at the top of the press box.

Spotting Austin

There he is at the top with the red shirt with white sleeves. Below him are the announcers from the Big Ten Network.

Following the game we did another first with Ashley. We went out to dinner, nothing new there, but we ordered off the menu for Ashley and she ate pasta. This is the first time we have gone out and not had Ashley’s food pureed. Her serving was easy to work with to get to the texture she needed.

Ashley has had more medications removed. Ashley from now on receives two meds and both are at very low levels. When she came home from Chicago Ashley was on thirteen different medications. It certainly makes a difference in her energy level.

Ashley had a complete workup and all of her levels were in the normal range. When it came to things like cholesterol and blood pressure she has readings most of us could only dream of. When you couple that with the motivation Ashley has it means there is no stopping her.

We have a busy fall lined up for Ashley. We are going to make a trip over to St. Mary’s and Notre Dame on October 24th when they host Boston College. We are looking forward to seeing Ashley’s classmates that are in their senior year. We are also planning on going to Columbus, Ohio in early November to visit Sandy and Pauline and to meet Al who was struck with ADEM but is now in medical school.

Have a wonderful Fall.

August 31st

2009-08-31T14:39:00.002-04:00

It seems like it has been nonstop action since we got back from Victory Junction Gang Camp two weeks ago. We have enjoyed sharing our experience with many family and friends. It was such an inspiring experience for all of us.

First things first we want to share some more photos from Victory Junction…

Ashley and our 'crew chief' Barbara taking in a view of the camp

Chris, the first person Ashley has met face to face that also has ADEM along with Mom

Ashley with one of the world's most caring and giving people, Sandy

With Maggie our cabin mate from Alaska

With Pauline and her service dog Kazu

Hello Kazu!

Ashley met two other people at Victory Junction with ADEM. Chris and Kate are the first people Ashley has met in person that can relate first hand to what Ashley is facing. While every case of ADEM is different, since the specific areas of the brain that suffer demyelization correspond to the outward affects of the condition, Ashley was able to relate with both of them and it was a tremendous boost to her already positive attitude.

We had a wonderful opportunity to meet with the doctors that specialize in these myelin related auto-immune conditions. We received both encouragement and guidance from each of them. As Ashley continues to work to get her speech back she will be focused on three sounds, “la-la-la, ma-ma-ma and ga-ga-ga”. Now thing about what was physically unique about each of those sounds. Times up! La-la-la involves the tongue (Ashley does a great job in positioning her tongue for that ‘L’ sound). Ma-ma-ma gets your whole mouth moving and ga-ga-ga gets your throat into the act. We were also told that Ashley maybe able to sing a familiar song before she can talk. I remember that George from Miami recovered his voice this way. He initially could sing, but following the song could not talk. Eventually he got his speech back as well. Poor Ashley having to listen to mom and dad sing off key.

This photo was taken in the hotel we stopped at half way home from Victory Junction. Since we did not have our standing frame Ashley improvised. Notice that Ashley is holding the back of her wheel chair for support. Also notice that there is no one else in the picture. Ashley stood for several minutes before requesting to sit down. All the while we never had to assist her for balance.
No sooner did Ashley get home and several of her friends organized a shopping trip at the mall. Although mom has good taste we know Ashley appreciated having her peers pick out some clothes for her.
Ashley had a visit as well from Kelly on her way back to Notre Dame for the start of her senior year. Of course we will certainly be planning a visit this fall to St. Mary’s and Notre Dame to see Ashley’s classmates and other friends.

Austin started classes today at IU. We all went down last Wednesday to complete his move from the hotel he was staying at with the football team (Austin has a work-study job as a videographer with the team) to his dorm. Ashley was kind enough to loan Austin some of her college supplies and dorm appropriate appliances. We look forward to coming back down for a football game in a couple of weeks.

Since this was a mild summer in Fort Wayne we are hoping for a warm fall so we can continue to get out and enjoy a variety of activities before the cold weather is back.

Victory Junction Day 3

2009-08-15T23:23:00.002-04:00

What a blessing Victory Junction has been. We had another great day. Ashley was even in a play. We have a lot to say and many more pictures to post, but our day ran long and now we have to pack to head home. As such we will post today's and tomorrow's half day of activities until next week.

Victory Junction Day 2

2009-08-14T23:04:00.009-04:00

Another wonderful day. It poured down rain twice, but we didn't get wet, our activities were timed perfectly. So what did Ashley do today?

She rode a horse; this time without the help of a co-rider behind her.

She shot archery with a fixed crossbow and was just a fraction away from popping the balloon for a bullseye.

Painted a mural that would be the envy of any museum of modern art.

Created a cuccumber boat racer that placed a respectable third place!

Covered the entire camp grounds. And is ready for another full day Saturday.

Victory Junction Day 1

2009-08-13T21:50:00.010-04:00

The first full day at Victory Junction. So what did Ashley do?

She floated around in the pool and sat in the hottub.

Went for a spin on a paddle boat.

Got a 'lovely' do at the Fab Shop.

Had three squares at the Fuel Stop.

Got involve with the post meal fireups.

Lined up for the group picture.

Watched two NASCAR pit crews compete with each other.

Got a ballon tattoo to match the balloon giving rides on the main lawn. Just to name a few!

August 12th

2009-08-12T21:40:00.003-04:00

We have arrived at Victory Junction Gang Camp in North Carolina. We can't wait to detail our adventures and post some pictures!

August 8th

2009-08-08T23:40:00.010-04:00

Everyone had a great time Thursday night at the Tincaps game. The new stadium has a great atmosphere and Fort Wayne's single A team (affiliated with the San Diego Padres) has the best record in minor league baseball at 76-34. We couldn't have asked for better weather and boy did it bring the crowds out. They sold out and had the largest attendance of the season. Fortunately we planned ahead in purchasing tickets!

Ashley and Erika don't seem too worried that a foul ball might come at them across the first base line as they visit with their backs to the game.

Several of Ashley's friends were at the game and dropped by to say hello.

They even got their photo with Johnny, as in Johnny Appleseed, one of Fort Wayne's own. He served as the inspiration for the team's name.

Another attaction that brought us out was the fireworks launched from a trailer pulled out into center field right after the game. We could not believe how many aerial shots came from it.

Austin is now down at Indiana University since he is working with the football team. He's being put up in a hotel until school starts. They will have to drag him kicking and screaming to the dorm when they tell him there is no maid service and he has a roommate!

Ashley, Mary and Jeff will be venturing down to Victory Junction in North Carolina next week. On Friday Ashley got her casts off (on her lower legs and feet for posture) so she will be able to take advantage of the pool while we are there. We can't wait to tell you about our adventures.

August 3rd

2009-08-03T19:55:00.002-04:00

Hello baseball fans! Ashley will be sitting in Row 'Z' of section 101 (first base line) for Thursday's Fort Wayne Tincaps game. We hope to see you there!

July 29th

2009-07-29T12:05:00.008-04:00

July is the heart of summer and Ashley has taken advantage of it, even with a new round of castings to help her leg and foot posture. Thursday night has been friends’ night and that certainly is among the highlights. Last week saw the ‘signing of the casts’ with her friends.

Of course the signatures don’t last long since her casts are removed every 3-4 days and then a bit more correction is made to get her ankles closer to ‘neutral’ and a new cast is put in place. The procedure helps stretch Ashley’s leg muscles so she can stand straighter and flex her ankles more. Her left ankle is pretty much there; it is the right side that needs the most assistance. This is her second round of casting (first was earlier this spring) and we hope this will greatly assist Ashley in walking and improving her balance.

It is interesting that she seems to walk up stairs more fluidly then walking on a flat surface. It is the fact that her muscles are tight that makes stepping up easier than stepping out.

Ashley’s strength is also improving. Even with her cast on she was doing leg lifts repeatedly with her left leg which, like her left arm, she has more control of. She was weighed at therapy this week and although she is looking thinner her weight is pretty stable. It is obvious that muscle tone is improving and accounting for the slimming without marked weight loss.

Ashley had a visit from Andrea her roommate at St. Mary’s two weeks ago. This will be senior year for Ashley’s classmates and we will certainly have to make a visit or two to St. Mary’s and Notre Dame to see her friends prior to graduation.

Now that we have the van we have had more opportunities to get out and about. Combined with the fact that we don’t have to take liquid nutrition, nor a box full of mediations, we have taken several trips to the grandparents’ lake home. Now we just pack a food processor. Ashley eats what we eat. To say sitting out on the dock is therapeutic is an understatement.

Two weekends ago Austin swam in his last city summer swim meet. Ashley swam in it from 8 years old through high school. Her first year at ‘city’ she took first place in freestyle. Fort Wayne’s fastest 8 year old! This provided Ashley an opportunity to see many young swimmers she either taught swim lessons to and/or coached during many summers at Glen Aqua Swim Club. She also got to see her long time swim buddy and fellow coach Rachel.

Some of you may know the tradition Austin has for the city swim meet. For the rest of you this will be a side of Austin you never knew. Before each meet we give Austin an ‘extreme’ hair style. This year the team’s theme was military camouflage. We cut Austin’s hair into odd shapes, bleached some spots and added blue coloring to others (it’s a pool so blue made sense). Ashley’s favorite cut for Austin was two years ago when, for the teams racing theme, we cut a checker finish flag design on Austin’s head. In case you are wondering. Austin gets a shave following the meet. Unlike his father, his hair grows back.

Last weekend it was a trip to the Fort Wayne Zoo to check out the new African Journey section of the zoo. Now you can feed the garaffes, platform to the right, but Ashley pasted on that!

Ashley went to the dentist this week. During her first visit just over a year ago it was hard to get Ashley to open her mouth. Six months ago as a precaution a ‘bite block’ was placed to avoid the chance Ashley would bite down. During this trip we first parked her chair in the hall and (with assistance) she walked into the exam room. No bite block this time. Ashley as was able to cooperate like any other patient. Perhaps better than the average patient since Ashley was perfectly at ease watching the TV and responding instantly to requests. The moment was not lost on Ashley. As nearly the entire staff commented on her progress her smile lit up the office!

Next week (August 6th) for friend’s night Ashley will be going to the local minor league baseball game, the Tin Caps. The name comes from the pot John Chapman a.k.a. Johnny Appleseed was noted for wearing on his head. He is an adopted son of Fort Wayne and is buried here. Needless to say an entire black market of ‘Fort Wayne Pot Heads’ shirts and hats has popped up to capitalize on the new team name (formerly the Fort Wayne Wizards). In any case they have a beautiful new stadium and there will be fireworks following that game. The Tin Caps also have the best record in minor league baseball.

Austin will be heading off to IU that same week since he will be a videographer for the IU football team. We still don’t know who his roommate will be nor when he will be moving into his dorm (they’ll be putting him up in a hotel during summer practice). Ashley adores Austin and, like mom and dad, will miss him greatly. Thank you all for the van; we are likely to see several home games this year and perhaps will take in a road game at a rival Big 10 opponent.

The following week we will be going to Victory Junction for four days. We will be seeing some people we saw last fall and will be meeting more individuals with similar conditions to Ashley. It was a wonderful experience for us last time and we can’t wait to go back down again. You can learn more about the camp and its programs at http://www.victoryjunction.org/. It is just south of Greensboro, NC.

Ashley is as motivated as she has ever been. We know that your continued prayers are a major component in her recovery. Thank you from the bottom of our hearts!

July 13th

2009-07-13T08:51:00.001-04:00

It took us two years, but with some help from Austin we finally got Ashley’s Facebook account reactivated. Over the weekend Ashley saw postings from several dozen of friends and Austin sent out a notice that Ashley is back on Facebook.

Ashley made a new request this last week. She wanted to chew something. We started out with graham cracker. She had no problem keeping it in place and chewing it sufficiently to swallow. We took a leap and gave her a blue berry. The skin proved too much to handle just yet, but as usual Ashley is taking the lead in her recovery by asking to try new things. We plan to stick with the consistency of crackers for awhile and as she builds that coordination we will move along to other foods. Liquids are still proving a challenge and that comes from the fact that Ashley has a hard time keeping her head up when chewing and pursing those lips. Try swallowing a sip of water that way and you will see what a challenge that is. She is getting there though. I think of it like perfecting a golf swing. Why can’t we all swing a club like Tiger Woods? Ashley has to concentrate and compensate for every motor skill we take for granted (as uncoordinated as ours’ may be).

We were home this past weekend and that meant that Ashley slept in her own bed upstairs. As we stated in the past she climbs stairs quite well. She has improved her descent as well. She is properly bending the knee that stays on the higher stair as her other leg moves down to the next stair. Perhaps it will be soon rather than later that Ashley moves upstairs full time!

Ashley will be back in a cast starting next week to continue the improvement of her feet/ankle/leg posture. Please focus your prayers on the success of that process in helping Ashley walk more easily.

We went to a Fort Wayne Tincaps game a few weeks ago (minor league baseball) with a couple of Ashley’s friends. The new ballpark is great. We plan on going to another game on August 6th which is followed by fireworks and have been getting the word out to Ashley’s friends.

Two Years

2009-06-29T12:04:00.002-04:00

It was two years ago today that we last saw Ashley walk, talk and eat as she did everyday of her life up to that point. She flew out to Virginia early in the morning and the affects of ADEM began their horrific attack later that evening as Ashley started to feel ‘different’.

Now that we have reached the two year point is this the new normal?

We confidently say no. In addition to the faith we have that Ashley will speak again, and that she will continue in her other areas of recovery, we can reflect on the following to affirm that hope…

Two years ago Ashley was in a coma.

We never knew if Ashley would make another audible sound. After two weeks she was laughing appropriately.

We did not know if Ashley understood us and in turn we had no way of knowing her wants. That changed around Christmas 2007 when Ashley began consistently using her right arm to indicate yes. She now nods yes and no as well as using her modified PC to communicate.

Until January 2008 we did not know if Ashley could tolerate sitting in a car to travel. Since then she has flown a couple of times and taken a cruise in the Caribbean.

That same month Ashley came home. We did not know if she would remain medically stable enough to stay at home. Since then she has been taken off the majority of her medications and has not had to be readmitted to the hospital for any reason.

Before August 2008 we didn’t know if Ashley would initiate a step on her own. With support she can walk up the stairs to her bedroom where she is now sleeping on weekends.

It wasn’t until this year (January) that Ashley regained enough control to take all her food orally. She still needs her tube for medications and hydration, but now she gets to eat what the family is eating (pureed).

Ashley has made great strides on the Eat and Walk portions of the Eat, Walk and Talk mantra. Even so she still has a ways to go with both of those. Although Ashley has not spoken that first word she is more vocal every week and we are hearing new sounds. That is exciting and it even excites Ashley.

We are not yet to the new normal and for that we are grateful. We are on God’s and Ashley’s timeline for each of those major areas. Ashley’s determination and faith combined with all of your prayer support will get her back to independence.

So what do we look forward to most when Ashley starts talking again? It’s quite simple; just hearing her lovely voice again. What will have the most impact on us? You guessed it, hearing, “I love you!”

As we start the third year of Ashley’s recovery she would like to say a couple things to each of us:

First that we should treasure and be thankful for the gifts God has given us. She wants to express that each time you tell someone you care about that you love them please say it with a conviction that will imbed your voice and words indelibly in that loved one’s mind. Love is after all the greatest of God’s gifts. It is also the one gift you can continuously share with others and never run out of. Ashley suggests you take advantage of that fact and show your love to all whom are special to you frequently.

Secondly, never lose faith. Ashley is as strong, if not stronger in her faith. Like the rest of us she doesn’t know why this has happened to her, but she does know there is a reason. All the effort Ashley is making, and each time she shares her smile with someone she knows that she is inspiring others as she continues on her own journey.

Over the last two years we have felt how special your love is through your support and prayers. We are blessed to have each of you from our closest family members and friends to people we will never know personally that have given of themselves in different ways for Ashley and our benefit. God bless each and every one of you. One day Ashley herself will be doing these updates and she will be able to thank you first hand.

June 16th

2009-06-16T11:30:00.003-04:00

Another milestone for Ashley.

As followers of the blog know we have assisted Ashley on several occasions in her efforts to walk up the steps to see her bedroom. Well, two weekends ago she did so well we decided that she could sleep in her own bed for the first time in nearly two years!

She slept upstairs both Friday and Saturday night. Our plan now is for Ashley to sleep upstairs each weekend. This past weekend she showed us her motivation. Normally Ashley takes a step up and then brings the second foot up to the step she just reached with the other foot. Well this time, on about half the steps, she took a new step with each foot.

Quite frankly Ashley consistently takes better steps when going up stairs then when on a level surface. Getting to her own bed appears to be quite the motivation.

Ashley is also improving on going down the steps. She is getting use to bending the knee of the leg that is staying in place on the upper step so her other foot can reach down to the next step.

We are certainly seeing the time coming when Ashley will move upstairs permanently.

In the continuous efforts to improve Ashley’s balance and walking she is now wearing an advanced pair of Ankle-Foot Orthotic boots (AFOs) at night. These are hinged and spring loaded to apply continuous pressure on her Achilles tendons. In addition she is wearing knee immobilizers to keep her legs straight while in bed (those blue foam pieces held together with velco that you see on someone who just had knee surgery.

You know that summer has arrived when it is time to dash next door and take advantage of the Markley’s pool. What a change from last year. Back then we would place Ashley’s wheel chair near the pool while placing a pool chair at the corner of the pool. We would transfer her from the wheelchair to the pool chair. The next step was to have two people lift the pool chair and set it about two feet from the pool’s edge at the steps. We would place a towel on the ground and lift Ashley from the chair and set her on the towel with her feet now in the water. We would then lift her and lower her step by step until she was sitting at a level that was comfortable.

This year? Ashley lifts herself out of her chair with minimal assistance. With balance support she walks to the pool and steps in and down to the step she wants. Of course we don’t just sit there; she walks, and most enjoyably, floats in the pool. Since Ashley has pool therapy once to four times a month she is no stranger to the pool, but next door it is relaxation time not work time.

In therapy this week Ashley stood behind her wheel chair with her left hand holding it for support. Her therapist was right there, but was not supporting her in any way. So how long did Ashley stand without starting to waver? More than three minutes.

On the nutrition front Ashley is not missing a beat. Now with berries coming into season she is requesting that fresh fruit often and enjoying every bite. Progress on drinking is slow, but is progressing. Each week Ashley is improving on fighting gravity and swallowing more sips.

It looks like Thursday night is going to be friends’ night this summer. Although many of Ashley’s friends are scatter about doing internships or attending summer semester out of the country she still has a dedicated group that want to hang out with her. Obviously Ashley chose her friends well.

We have a road trip coming up soon for Austin’s orientation at Indiana University. Ashley will be going with us and checking out the campus. We have also received confirmation that we will be able to attend the Transverse Myelitis week at Victory Junction in North Carolina in mid August.

May 31st

2009-05-31T22:34:00.005-04:00

Yes I know, five weeks without an update and just coming in under the wire for a May 2009 posting.

It has been a busy month. Ashley has done a lot since the last posting. She competed her serial castings and has two new sets of orthotic boots. One pair for the day and a more comfortable pair for at night. That involved a couple of road trips to Indianapolis.

We have been fortunate enough to go to the lake a couple of times visiting Ashley’s grandparents and other relatives. She has been on the boat and soaked up some sun.

Just over a week ago we all kept busy with Austin’s high school graduation activities. Here are Ashley and Austin at his Baccalaureate Mass. Two days later Ashley saw several of her friends that also had siblings graduate along with Austin.

We are pleased to report that Ashley has continued to get all her calories from regular food that we puree. No more canned liquid nutrition for Ashley! On the liquids front we are making progress though it is slow. That said it hasn’t keep Ashley from trying to use a straw in addition to sipping orange juice and iced coffee, two of her favorites.

Perhaps the greatest change we have seen in the last month is the increase in movement Ashley is having with her right arm. She is able to move not only her arm, but her wrist and fingers. She is winning the battle over the tone she has in that arm. Of all four limbs that has been her greatest challenge.

While the serial casting and new boots are making a difference there are more steps Ashley’s doctor and physical therapist are going to take especially with regard to the tone in Ashley’s right ankle. That will involve some botox and another round of serial casting. This should complete the process and provide Ashley with more comfort in standing erect while walking.

The tone in her right leg does not stop Ashley from peddling on her stationary bike. This picture does not do justice for showing the success she is having with that. Her muscles continue to build up renewed strength.

So Ashley is Eating well and continues to make progress on walking. That leaves talking. On that front Ashley continues to work on the mechanics of rebuilding her speech capability. It is interesting to watch her do her own exercises as she moves her mouth and tongue to form different letters. She does not yet have the ability to coordinate the flow of air through her vocal cords to form the words yet, but we know it is just a matter of time. Occasionally now Ashley will take a deep breath when asked. She was never able to do that on request before.

On the social front Ashley has had visits from several friends now that school is out. One evening a few of her friends came over and they skyped her friend Erika in Chile. I had never heard the term before, but ‘to skype’ is basically a video conference call over the Internet – for free. I was amazed at the clarity and sound quality. What impressed me most was the real time aspect to the call. There was no delay in the transmission. Sometimes technology can be a wonderful thing.

We find ourselves getting out and about in the neighborhood more often and bumping into folks we have not seen in awhile. Ashley is the indeed the neighborhood celebrity.

We are looking forward to a very productive summer. Ashley is going to start to take some therapy sessions in the morning so she has some afternoons open to do a variety of activities such as go to the pool and enjoy other outside activities.

Something we hear often and continue to be thankful for is, “Ashley is in my prayers.” Thank you all for your continued support. Ashley’s hard work, unwavering faith and the combination of all our prayers is what is pushing Ashley toward her recovery.

April 23rd

2009-04-23T15:06:00.006-04:00

Beginning last week Ashley has been having corrective casts placed on both of her feet. A week ago Tuesday she had her first casting which stayed on until Friday of last week. Those came off, more adjustments were made, and two new casts went on that same day. Those in turn came off this last Tuesday. They were so pleased with the progress that the current casts are going to stay on until next Tuesday.

Believe it or not the casts do not bother Ashley much. She really did not express having any irritation until this last set. With those it was just with the first time she put weight on them standing up. Even then after a little while they were comfortable. She has had no problem sleeping in them.

Here you see the finishing touches being put on one of the casts. It takes about 2 hours to do them both since they have to take several measurements and then decide on the adjustments and make sure those adjustments are maintained throughout the casting process. Like everything else they do at therapy they are doing this to perfection.We expect Ashley to go through this process for another couple of weeks. At the end of that her feet should be back to normal posture and it will be easier for Ashley to walk. Up until now Ashley has been more slouched when standing because of changes created by the affects of tone in her legs, ankles and feet. We are anxious to see the improvements this procudure will make. The weather continues to improve and we can't wait to take a really walk outside.

For now, with both legs in casts, it looks like we allowed her to walk down the steps solo.We are happy to report that Ashley is continuing to eat quite well. We are working on the liquids and are confident that it won't be long until Ashley will be getting all her nutrition and hydration orally verses via the feeding tube.

With great strides on the Walk and Eat areas of the Walk-Eat-Talk focus we are picking up the pace on Ashley's talking exercises. When she is laying down and does not have gravity pushing down on her diaphragm she is very verbal. It still takes her a bit of effort to get her diaphragm going when she is sitting or standing, but she continues to work at it. We don't have pronunciation yet but we know it is coming.

What we do know is that Ashley is continuing her slow but steady progression. Each day our confidence builds that Ashley will have a remarkable recovery.

Thanks to all for you for your continued prayers and support.

April 6th

2009-04-06T18:24:00.015-04:00

What a change in weather for us. We woke up to snow this morning. Yesterday we got back from a Caribbean cruise. We earned a trip through my job and were fortunate enough to work with a travel agent that specialized in wheelchair accessible itineraries. Originally we settled on a hotel in Puerto Rico that had wheelchair access right up to the beach. We did stay there the night before our cruise and it was perfect. The photo below is the beach at that hotel. It was a bit breezy that morning, but Ashley enjoyed getting her feet in the ocean, the first of several times.

In the end we took the travel agent’s advice and booked a Royal Caribbean cruise out of San Juan. We had a wheelchair accessible cabin that provided us with plenty of room. All the public areas of the ship called the Serenade of the Seas were accessible.

One highpoint for us was that they prepared each evening’s meal for Ashley so she could dine with us and eat what she wanted. The food was great and while the rest of us have pledged to drop the weight we gained Ashley ate better than ever. Although we only went to the main dining room for dinner Ashley ate pureed foods for every meal. She did so well we are going to adopt the strategy of preparing full meals three times a day for Ashley from now on.

We took Ashley’s collapsible wheelchair so we could get out and about on the different islands. We assumed we would have to get help carrying Ashley to a beach lounge chair, but to our delightful surprise we were able to pull Ashley backward in that chair across the sand. As such we visited beaches on...

St. Thomas (Megan’s Bay)

St. Maarten (Great Bay on the Dutch side)

Antigua (Dickenson Bay)

Barbados (Malibu Beach).

We were blessed with beautiful sunny weather every day. We did a pretty good job of managing our sun exposure so no one had a painful sunburn.

As we cruised along the west coast of St. Lucia we saw the Pitons at sunset.

The staff on the ship was very accommodating and we met so many friendly and helpful people both on the ship and on the islands.

On deck prior to formal night dinner.

Kicking back on deck.

March 24th

2009-03-24T13:24:00.001-04:00

Well Ashley’s perfect ‘healthy at home’ record came to an end on March 14th. She was doing fine during her doctor’s visit on Thursday the 12th. At that time we discontinued a medication for seizures we had been slowly tapering for the last year. That Saturday Ashley had a seizure. She is doing fine now and it was a single event. She had not had a seizure since November 2007 when she was at Northwestern Hospital in Chicago for plasmapheresis during her stay at Rehabilitation Institute of Chicago.

We took her in to the ER as a precaution and it turns out Ashley had a mild infection (she wasn’t even running a temperature yet). She finishes up her antibiotic today. She has been feeling just fine ever since. The onset of that infection, again her first since being home, may have triggered the seizure. She will remain on the very low dose of the anti-seizure medicine as a precaution for the foreseeable future.

Unlike when she would get sick during her inpatient stays there was no set back in Ashley’s progress. In fact the next day she had quite an appetite. As we have mentioned for several weeks now Ashley is eating quite well. While liquids are still a work in progress, eating a full serving of a balanced meal (pureed) is not. We will be following up with her dietitian in April to report on her progress.

Over the last couple of days Ashley has been doing a fantastic job of walking in the evening at home. Seems odd that her best walking would come at the end of the day when she is usually exhausted, but watching her take step after step without any assistance placing her feet (only balance support) is awesome.

We took advantage of the warm weather this weekend to get out for a walk. Ashley took a few dozen steps with her walker as well while we were out.

In mid April Ashley will have her ankles ‘cast’. This will be a process where they will put casts on both lower legs for three days at a time to help stretch her Achilles tendons and properly position her feet. When Ashley stands up her knees are bent and while she can stretch and stand up straight she cannot maintain that position. Each time a new cast is applied they will slightly increase the corrective positioning. The target is to reach the goal of proper positioning within three weeks. We will keep you posted.

Ashley enjoyed visits from several friends over spring break both at home and at therapy.

The final update would have to be on the Talk component of the Walk-Talk-Eat mantra that Ashley’s friend Emily coined. While we don’t have words yet Ashley is constantly working on those vocal cords and working those mouth muscles to form letters. You can tell she is bursting at the seams for all the intricate pieces to come together. It will be a glorious day when we get those first words and you can bet there will be an instant update on that day!
Thank you all for your continued prayers and support

March 8th

2009-03-08T18:47:00.001-04:00

Gee it’s hard to find time to update the blog. Nothing like a tornado warning to create some ‘down time’ in the basement to do an update as long as the power holds out (looks like it will just past north of us accompanied with 70 MPH winds and that nasty hail on the fringes). That’s just another sign that spring is coming. We can’t wait to get outside on a frequent basis with Ashley and take in the sights of the neighborhood. This time we will be including a walker in the mix rather than just her wheel chair.

It did provide for a hasty first with Ashley. That was the trip down here to the basement. She is lounging peacefully on the sofa as we watch the weather channel.

Last weekend Ashley got a haircut. Not just a trim; it is just below her shoulders now. She also was treated to a manicure and pedicure that same afternoon. Yes, she is looking gorgeous.

At the end of February Ashley had a visit from one of her high school friends, Erika, before she left for studies in Valparaiso… Chile, not Indiana. We checked on Erika’s blog www.ejprud.blogspot.com and found out she was encountering a lot of culture change.

Last Thursday we visited with a dietitian. Ashley has been eating so well we knew it was time to see about adjusting her liquid nutrition in response to her increased oral eatings. We are cutting back on the liquid nutrition by 20% and providing her dietitian with monthly updates to receive guidance on continually tapering the tube feedings. Great news!

We interrupt this blog for a weather update. The storm has past and while it is still windy the sun has come out. We are back on the main level and Ashley is doing her solo mat workout in the family room now.

Ashley will have an appointment with her neurologist this coming week. He will be addressing the tone issues she continues to have in her right arm and ankles. We also anticipate the elimination of one more medication that we have been tapering for several months.

February 22nd

2009-02-22T11:03:00.004-05:00

Ashley has remained consistent at eating well over the past couple of weeks. Liquids are still a challenge for her to swallow, but she is eating full servings of pureed foods each day. We see Ashley taking much more control of all her mouth muscles as she eats. She is even making more facial expressions. Of course we are prayerful that the progress she is making with eating will also lead to her rediscovery of voice. Ashley is quite pleased with her progress and we know she is continuing to work hard at it.

Lately we have increased the frequency at which we are getting Ashley on a gym mat in our family room during the week. For the most part we are letting her do her own thing. Ashley will roll from side to side and move her arms and legs in this unrestricted environment. We will help her up to her elbows as seen here to help her get a good stretch of her back and to put weight on her elbows. Ashley enjoys the freedom she has to move on her own so we will offer her the opportunity often.

Last night Ashley did some dancing, again. The husband of one of her therapists was playing at a local watering hole. Thanks to Fort Wayne’s total smoking ban we were able to visit, listen to music and of course dance without fighting off stale smoke smell. This marks Ashley’s first nightclub experience and, thanks to more establishments being accessible along with our ability to transport her, Ashley is doing more and building on her self confidence.

She needed balance support, but Ashley initiated and competed every step on the short walk from our table to the dance floor. As you can imagine she was beaming that famous smile of hers the whole time.

As we approach 20 months since Ashley was stricken with this debilitating, one time, demyelinating event we are thankful for all the strides she continues to make. Anytime we lament the slow progress Ashley manages to shows us something new. At times we think she is not only carrying the burden of her condition, but is also shouldering the responsibility of helping us keep a positive attitude as well. Praise God He is listening to all of your prayers!

February 7th

2009-02-07T07:58:00.001-05:00

More strength and control.

Over the last couple of weeks Ashley has demonstrated that she is kicking her recovery into a new phase.

Ashley has be able to move from laying flat on her back in bed to rolling to her side; moving her legs off the bed; sitting her self up and balancing in that position. We took another trip up stairs this week as well. Ashley was taking the steps faster and was able to lift her foot sufficiently that a few times that we did not have to help her position it on the next step. The real treat came when we got to her bedroom. She was sitting on her bed and coaxed to lay back. She did and then under her own power sit right back up. She then proceeded to do several ‘sit ups’ in a row. Obviously she is building up those abs!

Another noticeable control nuance was her ability to roll her ankle on request. Ashley would move her toes or raise and lower her foot on request, but we never saw such a display of motor skill before with her ankle.

There is also increased movement, on demand, with her right arm. The therapists have been able to increase her range of stretching and Ashley is raising her arm more often.

We had our official van presentation last week. We cannot express how liberating it is to be able to transport Ashley in comfort whenever we want and to know we will always be able to get her to therapy on time. We know that all the prayers and support we have received from all of you has been instrumental in keeping Ashley focused on her recovery. Ashley knows full well that she has your support and she is determined to show you that your investment in her is paying off.

Ashley, Austin, Mary and I would like to wish Mom & Dad a happy 50th Anniversary. You both mean the world to us and we love you!

January 21st

2009-01-21T07:58:00.008-05:00

Sorry for the hiatus in postings. It certainly was not for a lack of news. So let's get right to it...

Where is Ashley?

If you have been in this room before you know where Ashley is and you realize the significance of it. She is sitting on her bed in her UPSTAIRS bedroom. How did she get there you ask? Did we carry her up there? Actually Ashley walked up the 13 steps and down the hall to her room (with balance assistance). In fact she walked to all the rooms on the upper level. Her leg strength proved to be more than enough to lift her weight and climb the stairs. Her smile was beaming as we 'toured' her room and she saw how she left it over 18 months ago. She did not sleep upstairs, but we are looking for that day to come sooner rather than later. The reason for that is going down the stairs was much more of a challenge. While Ashley is doing a good job of walking and stepping up; going down is another story. We need to incorporate that into her therapy now. She had a difficult time bending the leg that would remain on the upper step and keeping the leg that moved to the lower step straight. With mom and dad assisting we got her down (no she did not have to resort to sliding down on her back side).

Needless to say we were all very excited and we know you are too!

The great news does not stop there. Through the loving support of several hundred people a wheelchair accessible van now sits in our garage. We picked it up this past Saturday and that means Ashley was able to go to church in her regular wheelchair and is now going to therapy in her own van. Don't be surprised if you bump into Ashley when you are out and about. She has a new found freedom and we are going to make the most of it for her.

We will never be able to adaquately thank everyone that so lovingly donated to make this a possiblity. God bess you all!

The good news does not stop there (of course we have nearly three weeks of catching up from the last blog). Ashley has been eating quite well lately. She is now requesting more food after we get done with the typical portion. She is also requesting thickened liquids more often which is more of a challenge. Thank you dear heavenly Father for keeping Ashley so motivated even after 18 months!

Her overall strength continues to improve. Her balance while sitting is better and she has even pushed herself up from a down position to sitting up.

We have a gym mat at home and Ashley is able to roll from side to side. It is also exciting to see that whether it be rolling on the mat, transfering from sitting to standing, or walking that Ashley is doing it quicker and more smoothly in addition to doing so with more strength.

Ashley's speech therapist is continuing to add more features to her communication PC and Ashley is doing quite well in picking up the new features and using them properly. The same therapist asked Ashley who our president was on the 20th (in the afternoon) and given the choices of Bush, McCain and Obama she picked Obama. Let's all pray that our new president is as dedicated to his job as Ashley is to hers!

January 5th

2009-01-05T08:38:00.001-05:00

Happy 2009!

We rang in the New Year as a family and we are looking forward to many milestones this year. Austin has committed to attending Indiana University next year. We have finally gotten approval from the state to get some in-home assistance. Ashley continues to work hard and show improvements.

In December Ashley had a treatment on her right arm which has a lot of tone. We have already noticed that it is easier to move during range of motion and Ashley is able to relax it much more easily. With the easing of tone we are confident that Ashley will gain more control of her muscles in that arm and soon she will show more control of it.

While it still takes a lot of effort for Ashley to control her left arm she is now able to do functional things. Perhaps the most rewarding to her is being able to reach and touch. Ashley will often grab her right arm and stretch it. She pulls her hat off when she gets in doors and assists to a greater extent when dressing.

The strength in Ashley’s legs and abdomen continues to improve. Her balance while sitting is quite good. When standing she will lean forward and use her left arm to help push herself up. Most of the time we are merely providing her balance when she stands and we leave all the lifting to her.

After having several days off during Christmas break Ashley will be back to a full therapy schedule this week including a session in the pool.

We appreciate all your prayers and support as we start 2009. We wish all of you a blessed new year!

Christmas Eve

2008-12-24T11:24:00.003-05:00

Our best gift is already realized. Our family will celebrate Christmas together at home this year.

We are also fortunate that the worse ice storm we have experienced only affected our power briefly last Friday. There are still thousands of homes in Fort Wayne without power and heat and we had single digit low temperatures this week.

This week we found out about another girl (the same age as Ashley when she was struck) that has been in a coma for a month due to ADEM. Please add Jessica and her family to your prayers that she will emerge from her coma and recover and that her family finds peace.

A few days ago Mary was putting rollers in Ashley’s hair. Standing behind Ashley, she would ask Ashley for a roller when she needed it and Ashley would grab one and hand it back to her. This got us talking about how many ‘simple’ things we take for granted in our daily lives. Ashley smiled and nodded ‘yes’. We knew that behind that smile was a lot of humble confidence.

With the Christmas Break Ashley has already had several friends over. She glows brighter than the Christmas tree when interacting with her friends. Listening to her laugh and seeing her direct eye contact around the room as the conversation flows is priceless.

Since we see Ashley everyday the changes are so subtle. Seeing her pass hair rollers and watching her interact with friends illustrates to us that Ashley is making monumental strides.

A year ago at Christmas time we were excited (and very thankful) because Ashley was consistent in using her ‘Yes’ button so we could finally communicate with her. We have certainly come a long way in a year. With all the pray support and the fact that Ashley continues to put everything she has into striving for a full recovery we have faith that she will get there, on God’s time.

We all have our challenges and crosses to bear. Christmas is a time for all of us to remember that our living Savior is here. This excerpt from Margaret Fishback Powers’ version of Footprints has always helped me keep my bearings, "Lord, You told me when I decided to follow You, You would walk and talk with me all the way. But I'm aware that during the most troublesome times of my life there is only one set of footprints. I just don't understand why, when I need You most, You leave me."

He whispered, "My precious child, I love you and will never leave you, never, ever, during your trials and testings. When you saw only one set of footprints, It was then that I carried you."

Merry Christmas!

December 8th

2008-12-08T20:00:00.004-05:00

Coming off of the Thanksgiving holiday weekend Ashley did not miss a beat in therapy. Lutheran now has a harness that will support Ashley while she uses either a stair master or treadmill (photo posted in the right column). Ashley set a personal best with walking this weekend when she covered 75 feet in assisted walking. Ashley initiated every step and most of the time moved her feet forward to complete the step. It takes time and a combination of concentration and energy from Ashley that is exhausting, but she is motivated.

On Saturday there was a fundraiser dinner for Ashley at St. Vincent’s. The committee was hoping for 250 people. A total of 344 tickets were sold. It is hard to convey the grateful feelings we all felt as we looked across the full cafeteria and still saw a long line of people that braved the snow and ice falling outside.

Mr. Proulx, the St. Vincent’s music teacher, and his Jazz Band played all evening. We had an opportunity to speak with and thank many of the parishioners and friends that have been supporting us since Ashley was struck with ADEM. We wish we could have thanked everyone individually and let them know how much their prayers and support mean to us. We certainly want to thank the dozens of volunteers that planned and work at the benefit. We were blessed with a beautiful evening with loving friends and it was made possible by the hard work done by so many!

In particular we want to thank the Briscoes, Leonards, Nills and Pollifrones who spearheaded this effort and have so generously given of their time to take on this endeavor.

Fathers John and Jason chatted with us and we had an opportunity to thank them for presiding over such a generous parish. Because of the tremendous response from so many we are well on our way to securing the funds for a permanent van. I say permanent because we were told by Jay Leonard that a fellow parishioner Jeff O’Daniel of O’Daniel Ford was providing us with a conversion van they had taken in on trade. That van now sits in our driveway and will play a key role in our ability to go out as a family this Christmas season.

The students of Ashley’s alma mater (and Austin’s current high school) Bishop Dwenger invited us to celebrate The Immaculate Conception Mass with them today. Following the mass the student council presented us with a check from a fundraiser they organized to contribute to the purchase of our van. Yet another example of how God has surrounded us with his loving people.

December 2nd

2008-12-02T09:37:00.005-05:00

It was another action packed week for Ashley.

Coming off of the Notre Dame weekend we hosted Thanksgiving and went down to Indianapolis to watch her alma mater, Bishop Dwenger play in the high school state championship game.

Ashley had a shortened work week as far as scheduled therapy goes. She worked hard and we made sure to pick up the pace with at home exercises. As we mentioned in the last update Ashley initiated and followed through on every step during a walk from our family room to her temporary bedroom. We have not replicated that long of a walk, but Ashley is being more consistent in not only picking up her feet, but also moving them forward to complete the step.

It is fair to say that walking has taken the lead among Ashley’s recovery categories of Walk, Talk and Eat. On the talking front we have begun exercising the muscles on Ashley’s sides along her rib cage. She is getting good and making sounds on request and then we apply light pressure to her sides to increase her exhaling as she ‘speaks’. This is in an effort to revitalize the muscles that contact against our lungs as we speak pushing air past our vocal cords.

Ashley is also improving her balances when she is sitting. At therapy they will lightly push her backward from a seated position and Ashley can use her trunk to pull herself back to a seated position.

Thanksgiving break meant that some of Ashley's friends were home from school. Sam and Holly dropped by for a quick game of Old Maid.

On Thursday we hosted Thanksgiving and had over 25 family members in our home. We had a wonderful day and Ashley’s perpetual smile was an indication that in spite of the challenges we are facing we have a lot to be thankful for. At the top of the list is the prayerful support we have received from family and friends.

On Saturday Bishop Dwenger played for the state title in football at the new Lucas Oil Stadium (home of the Colts) in Indianapolis. What a facility! Dwenger lead at the half, 7-3 over Indianapolis Cathedral, but the sole score in the second half of this defensive struggle went to Cathedral. The final score was 10-7. Although we were hoping for a win, we were proud that Dwenger played a good game. We certainly enjoyed being in the new stadium.

We had an opportunity to go through Circle Center Mall downtown much to the delight of Ashley. We even bumped into some Dwenger fans.

Ashley is back to a full week of therapy and on Monday she did not show the signs of fatigue she had following the Notre Dame weekend. She must have paced herself this time.

We are looking forward to seeing many of the people that have been supporting us through our journey this Saturday at the Spaghetti Dinner Benefit St. Vincent’s Church is sponsoring. We get such a boost in our moral when we see the heartfelt love and concern that so many extraordinary people have brought to our lives. God bless you all!

November 26th

2008-11-26T12:35:00.010-05:00

Did Ashley enjoy the weekend at Notre Dame and St. Mary’s?

This photo says it all. This is Ashley with Mom inside the Notre Dame football locker room. It was a wonderful day full of enjoyment.

We were in the locker room around 9:00am on game day. All the lockers had been outfitted with the game day uniforms. Given the temperature was in the teens we thought we might see garments with more insulating properties, but that wasn’t the case. The items that were in the ‘lockers’ (they were better described as shelved personal closets) were all placed exactly the same locker after locker. Each player’s name was displayed above. The home locker room is at the north end of the stadium immediately to the west of the tunnel. It is not your typical locker room given the carpet and the cabinetry. On the west wall is the ‘trophy’ case which contains, among other items, all 11 championship rings dating back to 1924.

Following our locker room tour we walked over to the bookstore. From there we went to LaFortune Hall, the student center.
Kelly had a room reserved and got word out to Ashley’s classmates to visit with us there. Several of Ashley’s class and dorm mates stopped by. This was certainly the highlight for Ashley.

We then bundled up for game time. Our tickets were right on the 50 yard line. We had a great time at the game; we wish we could say the same for the Fighting Irish.

Following the game we headed over to the Saint Mary's campus. We visited with Ashley's roommate Andrea before heading back to Fort Wayne.

It was a wonderful day that none of us will ever forget. Needless to say this all did not just happen. There were two wonderful people that made this dream day a reality. Kelly Hogan was a Notre Dame student sports manager with Ashley their freshman year. She teamed up with Mike Fletcher who is currently a sports manager. They both jumped through a lot of hoops and invested a lot of their time to put this agenda together and cover all the logistics and planning. We knew how wonderful Kelly was, but until we arrived on campus Saturday morning we had never met Mike before. He did not know Ashley, but was willing to take on this task for us. Mike you are our hero!

On the therapy front we reached a significant milestone last night. We have been patterning Ashley while she walks for several months. Often times we will have Ashley walk from the family room to her temporary room at the other side of the house; probably a good 50 feet. Well last night Ashley not only initiated every step she moved both feet forward EVERY time! It was unbelievable to watch. We were helping her with her balance, but we did not assist her for a single step. Exciting!

November 17th

2008-11-17T16:19:00.004-05:00

Ashley had one of those week where she was improving in noticeable ways last week.

In therapy they do assisted walking with her (one person supports her while two others pattern her feet after Ashley initiates the step) and time how long it takes to cross the large room there. On Friday Ashley took a minute off her time. Her last timed walk before that... Just two days ago on Wednesday!

Ashley was featured in an article of Fort Wayne Living Magazine's November issue. It summarized the timeline of Ashley's treatment and progress and her on going efforts to recover from ADEM. There were several pictures of her at therapy and the story also spoke of the effort being undertaken by members of our parish to raise funds for a wheelchair accessible van for Ashley. Once I figure out how to post the article to the site I will get it up. The photos in this posting are from that article.

On Saturday Ashley tried out a motorized wheelchair in a gym. We weren't sure what, if anything, to expect especially since the joystick control was on the right side and Ashley favors her left. When we placed her right hand on the control she didn't move, but she reached her left hand over and pulled on her right so it did move. The net result was mostly in circles, but there was one time she was moving straight (keep in mind that we have this chair moving very slowly) toward a wall and moved the joystick to do a full 180 degree turn without any assistance. We plan on trying the chair again in the future to see how Ashley does.

On Sunday our church provided the Sacrament of the Anointing of the Sick. It was an emotional experience for Ashley, and us. We know that faith has been a major contributor to Ashley's recovery. The Sacrament helped us to reflect on all of the improvements Ashley has made in the last 16 months and we are thankful for that. We also have the continued hope that Ashley will continue to improve and reach a full recovery.

Ashley meet with her physiatrist (rehabilitation doctor) today and he was very pleased with Ashley's progress over the last several months. He thinks her therapy regimen is right on target.

We have big plans for this weekend. One of Ashley's college friends, Kelly, who was also a student sports manager with Ashley has made arrangements for us to go to the Notre Dame-Syracuse game. We will be touring the field and locker room prior to the game. We will also have an opportunity to meet with several of Ashley's classmates and friends while we are on campus Saturday. We are looking forward to it and are thankful for all the folks at Notre Dame that made this possible.

November 9th

2008-11-09T22:58:00.006-05:00

One of the many activities Ashley took part in was archery. Here we are watching her take aim (with assistance) with a crossbow.

The Victory Junction Gang Camp Weekend was phenomenal.

We found out about the camp in July while Austin and I were at the Symposium on Neuro-autoimmune diseases. We saw a film about the week long camp that had been held for children with ADEM and Transverse Myelitis. We also had the pleasure of meeting the camp’s medical director, Dr. Peter Sim.

For a long time the Transverse Myelitis Association was looking for a camp that would accommodate the children with this family of autoimmune diseases. Often times its victims require a high level of medical care such as respirators. Camp after camp said they just did not have the facilities to accommodate the health issues that needed to be addressed. Sandy, the association’s president approached Dr. Sim of Victory Junction Gang Camp. Dr. Sim said he would talk to the camps founders, the Pettys.

Pattie Petty upon hearing the association’s dilemma simply said if no one else can accommodate these children than they must. Dr Sim and the association then went to work on making the dream a reality.

Now, on a rotating basis, each year there is either a children’s week long camp, or a young adults’ weekend.

You truly have to see it to believe it. Check that last sentence. You have to EXPERIENCE it to believe it. To say Victory Junction has state of the art facilities in a beautiful setting with staff and volunteers that love you like family and seem to know exactly what you need even though you didn’t realize it until were living it, is a monumental understatement.

Victory Junction is an adrenalin shot of faith, hope and love.

We were able to talk with other families face-to-face about the struggles and the accomplishments. We were able to converse with the doctors from Johns Hopkins and realize that, although this is a rare disease, there are strides being made. We had the pleasure of interacting with staff and volunteers who themselves were having a great time as well. We did everything as a family and we all participated; there were no boundaries at Victory Junction.

We have a new optimism that transcends where we were prior to this weekend. From day one in dealing with Ashley’s illness we have been surrounded with love, prayers and support. So this was not a revolutionary event for us. What it did was open our eyes to the fact that the blessings we were seeing in our efforts to battle this disease were not an isolated occurrence. There are so many people in this world that truly care, and are applying themselves in one way or another to make a difference. How refreshing!

Now that I have said Victory Junction is indescribable let me make an attempt to at least outline it for you.

Victory Junction opened in 2004. Its creation was the dream of Adam Petty. Adam, the son of Kyle Petty, grew up not only experiencing NASCAR first hand, but also philanthropy. In 1995 Kyle began his annual charity motorcycle rides across America. The proceeds were given to children’s hospitals. Adam Petty was inspired to create a camp where children with chronic illnesses could come and literally take a break from the trials and tribulation of daily life with a debilitating disease.

Adam died during a NASCAR practice in 2000. His parents Kyle and Pattie carried on his wishes for the camp by consulting with Paul Newman’s Hole in the Wall Gang Camps.

Up to 128 children campers can be accommodated at a time in week long summer camps. During the spring, fall and winter there are teen/young adult family weekends. All of the costs including transportation are covered by the camp. You can learn more about the camp and support it at www.victoryjunction.org.

The prospect of flying with Ashley’s wheelchair (with connecting flights that had tight layovers) and having to carry on her medicines and liquid nutrition (45 ounces of nutrition is slightly over the 3 ounces the Transportation Security Administration allows) were concerning. It turned out to be no problem. We had a letter from Ashley’s doctor explaining the circumstances. Her carry on went through additional security screening, but it did not hold us up. The airline (US Air) was very accommodating for Ashley and us. We boarded first leaving Ashley’s chair at the plane’s door and got Ashley on board with a chair that fits up those small isles. Ashley’s chair was the last item to go into the luggage hold and the first thing off. When we got off the plane her chair was right at the plane’s door so she could be transferred. We had no problem making our connecting flights.

From the Greensboro airport we joined other campers aboard a Victory Junction bus for the 20 minute drive to the camp. We arrived early so we had an opportunity to walk around the large campus and begin to acclimate ourselves to the layout.

We were housed in one of the 16 cabins the are split into two independent units.
Our dorm style bedroom had eight twin beds designed like race cars. At the foot of each bed was a locker and next to each bed was a shelf designed like a gas pump. Our cabin was Kansas (each is named for a NASCAR track).

At each meal (at the caféteria called the Fuel Stop) we met with the other campers and in addition to eating we sang and danced after every meal, including breakfast (they know how to get you going)!

We then set off on scheduled activities with our crew chiefs (college volunteers). Our crew chiefs were Katie who was from Charlotte and had worked at the camp during the summer and Matt who drove in from Auburn University in Alabama. This was his first time at the camp.

Katie and Matt were wonderful. Not only were they helpful, they were truly fun to be with. Matt and Austin hit it off talking sports and playing Wii and bowling. Katie had experience with the camp and was our inside resource making sure we maximized the benefits the camp had to offer.

The activities we took advantage of included bowling, horseback riding, miniature golf and scrap booking. Ashley participated in each one of these activities because Victory Junction is designed for people with disabilities. That helped us to recognize that we have a lot of paradigms we need to over come. Ashley truly enjoyed these things that she had not done since being stricken with ADEM 16 months ago. We need to continue to place an increasing spectrum of stimulating experiences in Ashley’s calendar.

There was an informative session by the doctors from Johns Hopkins and a therapist from Kennedy Krieger. They shared with us the latest advances in treating demyelinating diseases and therapy techniques. Later when we spoke with Dr. Kerr (he has seen more cases of ADEM and Transverse Myelitis than any other doctor) he stated that each ADEM patient is different, but aggressive rehabilitation can work wonders. He told us of an 18 year old girl that had ADEM. After two and a half years he didn’t think her progress to that point indicated that she would ever lead an independent life. After five years he was attending her wedding and she was in college. With Ashley’s continued determination and all the prayers she has supporting her we are confident that she will reach a full recovery.

The most treasured moments were talking with the other individuals and families that were living lives just like us when suddenly it all changed. We each shared our stories of what we experienced, both good and bad, but in the end we were smiling with each other and thankful for the new friendships we created.

We have so many to thank. Sandy and the Transverse Myelitis Association for seeking out this opportunity. Dr. Sim for approving our application and creating such a wonderful environment at the camp. Katie and Matt our crew chiefs for being both wonderful guides and friends. Dr. Kerr for all he is doing to fight this disease and help its victims maximize their recoveries. Chris our camp
recruiter that made all our arrangements for us. The staff and volunteers at the camp that have hearts of gold. The NASCAR drivers and every person that has contributed to the camp. Most especially we want to thank Kyle, Pattie and the rest of the Petty family for following through on Adam’s dream. You have made our dreams come true!

October 27th

2008-10-27T12:25:00.002-04:00

We're back!

We spent just a little over 48 hours at Victory Junction Gang Camp in Randelman, North Carolina. We enjoyed and will cherish, forever, each single moment.

There is so much to say and so many to thank! This was a life changing event for each one of us. For now I am posting a single photo in the right column that lives up to the saying, “A picture is worth a thousand words.”

We promise you more details and more photos in the coming days. We want to share this experience with all of you and thank you for your unwavering prayers of support. Each one of you played a role in getting us to this remarkable place and experience. It is our hope that sharing our experience will bring a smile to your heart; you deserve it!

October 16th

2008-10-16T08:14:00.006-04:00

We have finalize our travel plans for the Victory Junction Gang Camp in North Carolina. They will be flying us down next week. This will be our first time flying with Ashley's wheelchair. I thought there would be a lot of procedures to follow with the airline to make arrangements, but it was very straightforward. One thing I learned, if you just happen to have a Segway, they will check that at no charge. Boy would that get you through the airport quickly!

We can't wait to tell you all about our experience at the camp. It is for young adults that are suffering similar acute neuro and spinal demyleniation afflictions. All four of us are going so it will give Ashley an opportunity to meet others that are facing the same challenges and an opportunity to meet the doctors from Johns Hopkins that specialist in this disease. As parents we will have an opportunity to network with the other parents there. Austin will have a chance to share experiences with fellow siblings.

Last week we all met up at Lutheran Rehabilitation for the Fort Wayne Living Magazine photo shoot. The article will be appearing in the November issue. Among the shots were Ashley being aided with walking by a therapist and Austin. Another showed us gathered around Ashley's 'pink' computer.

Ashley herself continues to make advancements. When walking she is initiating over 90% of the steps herself. She is eating orally to the point that we are going to talk to the nutritionist about possibly cutting back on the quantity of tube feedings.

We are still waiting on those first words, but Ashley is vocalizing at an increasing rate. She is exercising those vocal cords. Like everything else it is just a matter of time.

September 29th

2008-09-29T12:29:00.001-04:00

Ashley had a wonderful birthday week.

The outpouring of love was amazing and deeply appreciated. Her therapists at Lutheran Hospital threw a surprise party for her; she received dozens of cards and gifts; there were numerous phone calls and visits from family and friends; and of course several wonderful postings on this blog. The highlight was when Ashley received and took a call on her birthday from her friend Adrienne who is currently spending a semester in Uganda Africa. Yes she called from Uganda!

Ashley took advantage of the extended summer weather we are having by taking several strolls through the neighborhood during the week and weekend.

On the Walk, Talk and Eat front Ashley is making steady progress.

As a visiting friend, Erica, was saying goodbye Ashley pushed her vocalization to new heights. We are praying for audible words, but to see the effort, and more importantly, the smile that was on Ashley’s face as she ‘sang’ her goodbye it was apparent that this was a sign of good things to come.

Over the weekend we did an interview for Fort Wayne Living Magazine. The article will be an update on Ashley and the efforts of members of our church parish to raise funds for a wheelchair accessible van. The story will run in their November edition.

To add to the exciting news we just received word that Ashley (and the family) has been accepted to the Victory Junction Gang weekend camp for young adults suffering from conditions like Ashley’s in North Carolina. In addition to spending time with others that Ashley can relate with we will be able to confer with the same medical specialists that were at the International Conference on Rare Neuro-immunilogical Disorders. Austin and I also had the pleasure of meeting the camps’ medical director at that conference in July. In a future posting we will tell you more about this wonderful facility that the Petty family of NASCAR fame has poured their love and treasure into. It has been a blessing for thousands of children, young adults and families that are facing various medical challenges. You can visit them at www.victoryjunction.org.

As we face each new day we are thankfully aware of all the love and support we have and will continue to receive. Saying thank you feels woefully inadequate, but please know that you are also in our prayers. We know first hand that prayer is the most valuable gift one person can provide to another.

September 23rd

2008-09-23T08:18:00.002-04:00

On Saturday Ashley danced at her cousin’s wedding. More precisely Dad danced and Ashley was holding on for dear life. In any case one of the motivators we used when patterning Ashley for walking was that we wanted to see her dance at her Jessica and Joe’s wedding. This always brought a smile to her face.

Well on Saturday night she got out of her chair on the dance floor and to the cheers of onlookers Ashley held her self up and we did some limited moves dancing.

On the Walk, Talk and Eat front, Ashley continues to take more and more unassisted steps each time we pattern her. While she still needs support from her walker or someone else it is so encouraging. Her consistency of eating, as well as the volume she is taking orally has definitely improved over the last few weeks. While we are still waiting on that first clear word Ashley is increasing the frequency of making sounds as well as an increasing the variety of pitch.

Ashley will celebrate her 21st birthday this Thursday. We could not be more proud. Just a little over a year ago we would have anticipated her starting her junior year at Saint Mary’s and starting to narrow down her school selections for her masters as a Physician’s Assistant. Now we know that God has other plans for Ashley. She is taking a hiatus from college, but as we watch her slowly progress and witness, what is to us, Ashley’s miraculous motivation and positive attitude it is becoming clearer that she will have a special vocation.

May we never fail to mention our awareness that there is a special partnership between Ashley’s hard work and the prayers and support we have received. It is blessed combination that knows no earthly limitation.

September 16th

2008-09-16T16:20:00.005-04:00

Hi all!

It has been quite busy around the Harrington household, but I felt a short update was better than no update at all.

Courtesy of a neighbor that is a therapist Ashley now has a walker (pictured). This walker has raised arm supports so Ashley can have support for her forearms and hold handles in front of her and walk. This is a huge advancement for Ashley. Although we still right there to assist her if needed Ashley is not st raped in like the gait trainer. The only support she has from the walker is with her forearms.

Ashley is making strides with walking that exceed any other area of improvement to date. She is even taking reciprocal steps (one step followed immediately by another). It is biggest high to watch her do that! She still needs patterning, but the progress she is making is truly breathtaking.

We have always had faith that Ashley would walk again. Now we have the proof that she will indeed do it.

Please keep those 'Walk, Talk and Eat' prayers coming because they are working. God Bless!

September 1st

2008-09-01T23:57:00.002-04:00

An apology is due to the faithful followers of Ashley’s blog. Once again the editor failed to get out the weekly update. Quite frankly the busy holiday weekend has me feeling like Cinderella trying to beat a midnight deadline to get this to the presses.

Had I posted an update last week the lead would have been the outcome of her check up with her neurologist the Friday before. Once again medicines for Ashley have been reduced. To give you an idea of how well Ashley is progressing consider this…

When Ashley came home in January of this year she was on fourteen (14) different medicines. Today she is on four (4) different medicines. One of those is an antacid she takes due to her liquid nutrition. Of the other three one has had its dosage reduced 50%. The other two have had their dosages reduced 75%! This is good news on two fronts. The obvious is that Ashley is progressing to the point she needs less medication to address the affects of her condition. The other is that she is not encountering the side affects that came with some of these medications. The biggest issue was drowsiness.

It is hard enough when your body isn’t cooperating with what you are telling it to do. It only made it harder with have to fight off constant fatigue. Now with this latest round of medicine reduction we are confident that Ashley will make even more gains.

We just returned from spending the holiday weekend at the lake. We have been blessed with wonderful weather this summer and have taken advantage of it. Ashley has loved every minute when she has had an opportunity to get outside.

Ashley has been moving her left arm in a more coordinated fashion lately. When we got home today she reached up and removed her sunglasses from her face. Later we asked her to put down her right arm. She reached over with her left are to her right shoulder and worked her way down her arm to her wrist and pushed on her arm. We watched in amazement.

It was wonderful to hear from Jodie (who is from London, England) who had ADEM and can relate to what Ashley is going through. She is one more person that is a role model for Ashley

Thank you for your prayers. We hope as we head into September you have all had a wonderful summer.

August 19th

2008-08-19T21:57:00.001-04:00

Over the last couple of weeks Ashley has successfully eaten orally each day. No doubt the prayers for eating are being answered. This is not at the expense of the walking and talking prayers you have all been offering up. Ashley is more vocal. She is taking more full steps in the gait trainer and she continues to improve on the stationary cycle.

On Thursday Ashley will finally get her official wheel chair. It has taken so long that we have joked that she would walk in and pick it up when it was ready. It will be similar to her current loaner chair. It will not be hot pink to match her new computer.

Speaking of her computer, Ashley continues to adapt well to it. Like everything else it takes consistent practice, but she already knows how it operates so she will be whipping out sentences in no time.

Ashley usually is not interested in TV, but she has been enjoying the Olympics. As a swimmer she was taking particular delight in watching Michael Phelps work his way, race by race, to a record eight gold medals in one Olympiad.

She can relate to the hard work it takes to be a competitive athlete. It is that experience, along with her faith, that is helping her maintain such an admirable attitude as she slowly regains her motor skills. We also know that she loves the affirmation she gets from those she crosses paths with and from reading comments from the blog.

August 11th

2008-08-11T17:42:00.001-04:00

Ashley’s computer arrived on Friday. Her speech therapist will get it set up this week and a lot of our time at home will now be focused on helping Ashley communicate through this system. It looks like a tablet PC. It has a touch screen, but Ashley will use a button with her left arm to control it.

The screen will present and ‘speak’ options to Ashley. It will scroll through options in rows. Ashley will hit her button when it gets to a row that displays an option she wants. Next it will display those options and she will click on the one she wants and it will state it. It may take a few screens to get to a specific option, but now Ashley will begin to tell us what she wants verses our doing the yes/no guessing game.

Oh did I mention that the front of this tablet PC is bright pink!?!

This weekend Ashley ‘took off’ on her pedaling. She completed as many as five full revolutions in a row without any assistance. We have to credit the Walk, Talk and Eat praying all of you are doing along with Ashley’s hard work for that significant improvement.

At mass yesterday Ashley gave a huge smile and was raised both arms in affirmation when Father John, in his homily, said we need to have faith in Christ to get us beyond our fears. The gospel reading was about Peter walking to Jesus on the water but then becoming fearful and sinking. It was a beautiful sight to see Ashley’s reaction knowing she wanted us to know that her faith is unfaltering.

As we have often said Ashley smiles much more than she frowns and laughs much more than she cries. When the rest of us are feeling overwhelmed it just takes a look at her beautiful smile to get refocused and to think, “If Ashley can keep a positive attitude how can I let myself fail to do so?”

It is as obvious as the sun rising in the east that Ashley is feeling the beneficial affects of everyone’s prayers. Please keep them coming.

August 5th

2008-08-05T14:20:00.001-04:00

We missed posting an update last week so we have some catching up to do.

We can tell that the ‘Walking, Talking and Eating’ prayers are catching on and having an affect. In the last two weeks Ashley has been more consistent in her eating exercises. Ashley continues to vocalize at an increasing rate and we are occasionally hearing new sounds. In her gait trainer (a rolling support Ashley uses to practice walking) she has initiated steps several times and has actually taken full steps without any assistance!!!

Of all the progress Ashley has made, seeing her raise a leg, move it forward and plant her foot firmly in front of her; it is breathtaking.

We are ever grateful to all of you that keep Ashley and our family in your prayers. We are seeing, first hand, the real and positive impact your prayers are having for us.

As you will see from the latest picture posted to the site Ashley went for a boat ride while visiting her grandparents. Ashley’s social calendar continues to fill with activities. Since the last update Ashley saw a musical at the Civic Theater, visited her co-workers at GlenAqua Pool, spent a weekend at the lake and has received visits from literally dozens of friends and family. We know that the increase and variety in her activities is having a positive impact on her.

We are taking advantage of the sunny summer days and getting out for walks. We know that all too soon we will be longing for being able to spend time outside. Ashley has yet to turn down an opportunity to get out and about.

July 21st

2008-07-21T12:36:00.003-04:00

We have a lot to report in the update for last week.

Ashley continues to make important gains. Ashley began squeezing her left hand a while ago. In fact we bought a nerf dart gun for her to shoot. She would occasionally get off a shot after a bit of encouragement. Well now there is no mistaking that Ashley can squeeze that left hand – hard! She is also now squeezing her right hand which is great news.

Another noticeable change is the amount of vocalization that Ashley is doing. It used to be very difficult for her to create sound. Now she not only is doing so on request, but she is doing it on her own. We aren’t hearing words yet, but it is just a matter of time now.

Last week Austin and I attended a conference on Rare Neuroimmunilogical Disorders (say that five times fast). This was coordinated by the Transverse Myelitis Association. Transverse Myelitis is to the spinal cord what ADEM is to the brain (demyelinization of the axons). Both diseases are quite rare. This will give you a perspective. This year 1 in 600 Americans will experience a stroke. For Multiple Sclerosis that ratio is about 1 in 50,000. For Transverse Myelitis it is estimated to be 1 in 200,000. For ADEM (Ashley’s condition) it is thought to be 1 in 2,000,000.

There were probably 50-75 people with Transverse Myelitis at the convention. There were only 2 people with ADEM. We had the pleasure of meeting those two incredible individuals. Jodie is from London, England. She encountered ADEM about a year and a half ago. Jodie shows very few outward signs of the disorder. George is from Miami, Florida. He came along with his wife, sister and brother in-law. George also was afflicted with ADEM about a year and a half ago. George is working on refining fine motor skills and some cognitive issues. Jodie, George and Ashley have a common bond; all three were living blessed lives and now they are working harder than anyone can imagine toward restoring their abilities. Both Jodie and George were very encouraging. They told us that they have fought the battles Ashley is facing and they progressed. We will certainly put Ashley in touch with both of them. We know their direct encouragement to Ashley will enhance her determination to continue to work hard toward recovery. They will serve as excellent role models.

In addition to the friendships we made and the stories of encouragement we heard we were also exposed to a lot of information from experts in these rare conditions. A wide range of topics was covered in three full days of meetings. We are anxious to translate what we have learned and apply it for Ashley’s benefit. As we do so we will be sure to provide you with updates as to how our new found knowledge is translating into gains for Ashley.

The symposium was also our first opportunity to meet Sandy Siegel face-to-face. Sandy's wife Pauline contracted Transverse Myelitis over a decade ago. At the time there were scarcely any resources on the condition. Sandy was instrumental in founding, and is the president of the Transverse Myelitis Association. When we first were told that Ashley was suffering from demyelinization we turned to the internet for information. We found the association and that lead us to Sandy. Sandy immediately returned our call and put us in touch with Dr. Greenberg at Johns Hopkins. Over the past year Sandy has proactively contacted us with information. He has helped countless others in seeking assistance with these rare conditions. The association website is www.myelitis.org. Your support of this organization would be greatly appreciated.

On another note we want to encourage the mantra Ashley’s friend Emily has started of praying for “Walking, Talking and Eating”. We are seeing progress in all three of these critical areas and we know the power of prayer is a main contributor. As such we ask all of you to include in your prayers for Ashley that she continue to improve in her ability to walk, talk and eat.

We are excited and thankful for the strides Ashley has made over the last year. We are also more encouraged than ever that Ashley will make a remarkable recovery. Thanks to all of you, that through your support and prayers for Ashley, we are not facing this alone.

July 15th

2008-07-15T07:22:00.001-04:00

The last week was a busy week for Ashley. She has probably experienced the largest variety of activities since contracting ADEM. The great summer weather made several outdoor activities possible.

On Thursday she went to a swim meet (of course it was Glenaqua where she could root for all the swimmers she has coached over the years). It was non-stop smiles for Ashley as she got to see so many of her swimmers that she has not seen for over a year. We also got an opportunity to thank so many of the families that have been unwavering in their support for Ashley and our family.

Immediately following the swim meet we went to watch several of her therapists compete in their last softball game of the year. Ashley nearly ‘caught’ a foul ball upon our arrival. What a way to be greeted! It was an exciting game with the lead going back and forth. The outcome was a single run loss for the Lutheran Hospital Therapists, but it was a well played game.

On Saturday we went shopping with Ashley at Jefferson Pointe which is a large outdoor mall. We even stopped for a drink at a restaurant. That was a first for Ashley.

The weekend closed with Mary and Ashley attending a wedding shower for Ashley’s cousin Jessica. They had a great time.

Ashley has continued to progress with accurate and quick responses to requests to move her arms and legs. She even showed more defined movement such as bending her knees. She is starting to move her right arm without first having to initiate movement of her left arm. There is no doubt that Ashley is rebuilding muscle tone and getting better motor skill control. We get more excited each day as we watch Ashley demonstrate that she is going to conquer this affliction.

July 7th

2008-07-07T14:42:00.002-04:00

Another milestone for Ashley! We visited Grandma and Grandpa over the 4th of July weekend and Ashley slept in a regular bed for the first time in over a year. She slept well and showed us that she has no problems with traveling. For the most part Ashley soaked up rays along the lakeshore while visiting with several family members. It was a fantastic weekend.

Although it was a short week for therapy the main emphasis has been getting Ashley to demonstrate greater control of her movements.

She is nodding her head for yes. She still needs to be reminded (for so long she has answered yes by raising her left arm) but she is doing well. It may take a while to get the ‘no’ nod down, but it won’t be due to an in ability to move her neck side to side. In fact the most recognizable change spotted by Ashley’s relatives this weekend is how quickly she looks to the person speaking to her, even when there are several people and the conversation is moving back and forth.

Ashley also is moving her legs immediately on request. It wasn’t too long ago that we cheered Ashley on to ‘kick’ a balloon off her legs. Now when we ask her to raise her legs she responds almost effortlessly.

Standing is something Ashley enjoys. While we have to assist her in getting up, she will lean forward when asked and usually after just a little nudge she can move herself from a seated to standing position. At that point it is just a matter of providing her with balance. She tends to stand on the balls of her feet, but she will settle into standing flat on her feet after a few moments on most occasions.

On the cognitive front we are really piling it on. Ashley is currently listening to three different books being read to her. Her friend Sam got her a couple of books on CD. We took the opportunity of the holiday road trip to start one of those. Ashley has enjoyed it and so far has shown an ability to keep track with the different story lines and characters.

When we consider that a year ago at this time Ashley was nearly in a coma and we were still on a day-to-day basis dealing with her condition it is a blessing to interact with her today (you can view the daily reports we emailed from Virginia in the 2007 archives at the bottom of the page). While there is still a ways to go there is no question that Ashley remains steadfast on maximizing her recovery. We have high hopes for this coming year.

We know that the combination of Ashley’s determination and hard work combined with your continued prayers and support will make this a reality.

One Year...

2008-06-30T16:03:00.003-04:00

It was on this date last year when we last heard Ashley speak to us. We had no idea what laid ahead following that call at 4:30 am. Her speech was labored, she complained she could not sleep and had a tingling sensation in her arms and hands. While we were anxious and quite concerned we assumed she was just exhausted from her trip out to Virginia and was dealing with some insomnia. We thought she would go into the emergency room and they would determine she just needed something to help her sleep for a few hours and then she would return to enjoying her trip. Of course it did not turn out that way.

We don’t know what caused Ashley’s demyelization. What we do know is that Ashley fights everyday to recover. Her ability to maintain a positive attitude a year later boarders on miraculous. While we hoped and prayed that Ashley would be walking and talking at this point we are thankful for the Ashley we have today.

She is making continuous strides. Ashley can communicate to us with her arm to indicate a yes answer. She is able to support her weight when standing. She comprehends conversations. Her long-term and short-term memory is strong. She responds to requests with movements immediately. She looks to the person speaking to her. She smiles and laughs significantly more than she shows sadness.

Most importantly she has the motivation to continue to make improvements. We all know that she will reach many more milestones.

Ashley could not have done this all on her own. We cannot begin to thank everyone that has played a major role in her recovery. Quite frankly we don’t even know the majority of the people that are supporting and praying for Ashley. She has lived her faith based life in a manor that has drawn admiration and respect. Her giving and caring attitude has now been transformed into receiving love and care.

On behalf of Ashley, Thank you and God bless you!

June 16th

2008-06-16T14:48:00.000-04:00

Ashley was a bit under the weather at the end of last week. She never ran a high temperature but she was feeling blue Wednesday through Friday. We don’t know what it was, but we are happy to report that she bounced back on Saturday. Ashley stayed home from therapy on Friday. The only other time she has missed therapy since being home has been once for snow.

I guess we can no longer say Ashley has not been sick since being home. Of course being sick once in the last 5 months is nothing compared to the number of infections and random bugs she had to fight off during her six months of in-patient status.

Over the weekend we got out to inspect the new grade level curbs that have been installed in the neighborhood. They all met our approval, and will make it much easier to get around. We took advantage of the beautiful weather to do just that. We also got back in the pool with Ashley on both Saturday and Sunday. She floated around and you could tell she was in her element.

We also took advantage of Ashley feeling better on the weekend to use the pedal machine for both her arms and legs. She showed a bit of frustration when she tried to coordinate her pedaling, but she also exhibited her drive. At one point when we asked if she wanted to stop she would not answer. When we asked if she wanted to keep trying we get a quick positive response. Ashley wants to succeed and she is willing to fight for it.

Right now Ashley is listening to three books and enjoying them all. Emily is reading “Twilight” on her visits. In speech she is listening to “The Great Gatsby” and we are reading her “One for the Money” sent to us by Ashley’s St. Mary’s roommate’s mother. Ashley is enjoying all three and is able to answer questions about all of them showing that her cognitive ability is as strong as ever.

June 12th

2008-06-12T09:14:00.001-04:00

Where to begin on this update…

Ashley got back in the neighbor’s pool this weekend and this time we actually walked, or perhaps the better word is, glided around with Ashley in the shallow end. Then, much to Ashley’s delight we supported her while she floated on her back.

Last Friday Ashley’s grandparents came in to see her during therapy sessions. They used our digital camera to film Ashley walking with the assistance of Mom and the therapists. Once I get the time to figure out how to post that to You Tube and create a link to the blog I will do so. Mind you, the video quality of our digital camera is not the greatest, but it will give you an idea of where Ashley is at in her ability to support her weight for a period of time.

We have another tool at the house for Ashley to work with. It is a therapy cycle. Not a bicycle, but rather a system that can be placed on either the floor, or a table so she can use her feet or arms to pedal. Ashley really enjoyed using a similar system when she was in Chicago. She is excited to continue work in this. It will take time for her to coordinate the movement (she tends to push with both arms or legs verses getting into the rhythm of pedaling) but she did it for a single revolution with both her arms and legs during her first workout with it. We will keep you posted on her progress.

Yesterday we took a walk in the neighborhood to inspect the latest construction project. Flush curbs are being installed at every intersection this week. By the end of the week we will be able to cross any street in the hood without jostling Ashley about.

In therapy this week they placed Ashley on a large ball to support her while they had her on her hands and knees. Then they removed the ball. Other than supporting her right arm Ashley was able to support her weight and stay in position. This is something that she has not done since being struck with ADEM eleven months ago.

All these new activities reinforce our confidence that Ashley will continue to make progress in her recovery. We can’t wait for the day when Ashley is the one doing the blog updates!

June 2nd

2008-06-02T19:46:00.001-04:00

It took eleven months but Ashley finally got back in the pool!

On Saturday Ashley took a 'dip' in the Markley's pool. As you can see from the posted picture she sat on a step and got to feel the sensation of pool water on her legs for the first time in too long.

We won't be venturing further into the pool until after she has a chance to use the therapy pool and we get feedback from the therapists. Even so, just being able to sit in a swim suit and feel that water on her legs made Ashley's weekend. Since she was eight years old she never spend more than a month away from the pool.

This was just the start we are looking forward to Ashley moving her legs and getting a renewed fell for the water. We are confident that it will be a positive step in her therapy.

May 29th

2008-05-29T18:11:00.001-04:00

Ashley has continued to build strength in her legs. She has certainly gotten past the point where she is merely controlling the tone in her legs. She is now exerting more control over her knees and will stand up straight when asked. While we still use her standing frame which she can stay in comfortably for over a half hour, we are finding whenever we transfer Ashley from one spot to another (i.e. her chair to a sofa) we are standing with her longer and merely providing balance.

We are waiting to get an email of some video from a therapist that shows Ashley ‘walking’ with the aid of other therapists. If we can figure out a way to post it to the blog we will do so. It will certainly bring cheers from the viewers.

Ashley ran a slight temperature for a couple days last week and was a little sluggish because of it, but she did not require a doctor’s visit and seems just fine. As such I think we can still say Ashley has been illness free since being home. That is very significant since illnesses during her inpatient stays would negatively affect her progress.

In late May you wouldn’t think this would be an issue, but it has; and that is getting out for more walks. It has been cooler than normal (hopefully a trend that is ending) and we haven’t spent as much time outside. That doesn’t mean Ashley has not been outside. Over the holiday weekend Ashley took to a lawn lounger and supervised our yard work. We just thought it we would be having family dinners each night in the screened in porch and making more laps around the neighborhood by now.

Ashley continues to enjoy visits from her friends and her most active blog commenter, Emily is reading a novel to Ashley on her visits. During a therapy session that topic came up and a therapist said she had read the book, but forgot the name of the female lead character. No problem; she was able to get Ashley to tell her by going through the alphabet.

May 19th

2008-05-19T23:21:00.003-04:00

Where's the update?

The editor did not file a posting last week, but it didn't have anything to do with a lack of good news to share.

During the week of the 12th. many of Ashley's friends began returning home from school and she had several visits. Each one was uplifting for Ashley. A couple of her classmates from St. Marys made detours on their way home just to see Ashley. The combination of friends and being outside more often are perhaps the best medicine for Ashley.

Perhaps the contacts with her friends had a role in the latest milestone for Ashley. In the past two weeks Ashley has steadily increased her control over her legs for standing. In the past when it came to transferring Ashley from one location to another it required the person doing the transfer to 'lift' her to make the move. Now, the vast majority of the time. Ashley is bearing that weight on her legs by herself. Many times when we ask her to stand we are doing little more than providing her with balance support.

Last Friday the therapist decided it was time for Ashley to take her first controlled walk. She was aided to the parallel bars (set at just above waist height) and the therapists patterned Ashley, physically moving her legs while Ashley did the lion's share of supporting her weight. They moved Ashley, one step at a time for a total of 14 steps!

It may be quite some time before Ashley can take those steps on her own, but it is beyond description to express the joy we felt at seeing Ashley accomplish this major improvement.

We continue to encounter more individuals, families and groups that tell us that they are praying for Ashley and our family. We know that it is this support that keeps Ashley's attitude positive and gives us the strength to she her through her recovery.

All of you keep that beautiful smile on Ashley's face!

May 5th

2008-05-05T12:58:00.001-04:00

Spring has sprung and Ashley is enjoying getting outside. In fact the latest picture posted to the blog shows Ashley watering flowers in front yard.

Last Thursday was an event filled day for Ashley and our family.

Ashley’s grade school held an in-school carnival with the proceeds being donated to Ashley’s medical expenses. The large gym was full of activities and Ashley was all smiles as we observed the students playing the different games and taking part in the various activities. The love and enthusiasm that was shown to us by the students is indescribable. Ashley was all smiles and was waving repeatedly as she was greeted by several classes.

Immediately following our visit to St. Vincent’s we were on the road for the short trip to Ashley’s high school, Bishop Dwenger. Following their May Crowning service we were presented with a donation along with other families having Dwenger ties to assist with medical expenses. The proceeds came from a talent show that was organized by the student council. Needless to say we are proud that Ashley is a graduate from, and Austin is a student of this outstanding school.

Both of these events are the latest examples that humble us and reinforce the love and support we are blessed with. We are grateful to all the students and faculty at both schools who coordinated and participated in these events.

Oh and by the way, Ashley still put in her three hours of therapy that afternoon!

Speaking of therapy Ashley, as you all know continues to maintain her positive motivation. We are noticing that when we transfer Ashley and stand her up she is often times doing the standing herself with the ‘attendant’ serving more as a balance assist than actually lifting Ashley. She is knows the step in doing a transfer and more often than not she is able to kick in the toning of her leg muscles to stand up.

Many of Ashley’s friends will be wrapping up school soon. She is looking forward to visits and activities with her friends. We know that will provide her with more encouragement and maintain her positive outlook.

April 29th

2008-04-29T08:11:00.002-04:00

Ashley enjoyed her road trip to Valparaiso this weekend for her cousin's first communion. In fact we all did. She was even wide awake coming and going taking in all the sights.

It was another good week for Ashley. She did well in therapy and with a few medical/dental appointments thrown in. She was quite the cooperative patient which makes everything that much better.

Ashley started demonstrating an new skill yesterday. As we were finishing our dinner (Ashley has her 'pleasure feeding' with us) we asked if she wanted anything else and Mary noticed that Ashley appeared to make an intentional exaggerated blink with both eyes. "Could this be Ashley saying no?" Well we immediately started putting Ashley to the test...

Yes! or should I say No! Either way, Ashley is now using her button to say yes and she will blink to say no. It was quite exciting at the Harrington house last night as we salted Ashley with yes/no questions.

Thank you for your continued prayers for Ashley and us.

April 22nd

2008-04-22T15:34:00.001-04:00

Ashley had an appointment with her Neurologist on Monday. It went very well. In fact he noted marked improvement in Ashley’s range of motion and the decrease in the spasms. These are significant gains that we have noticed since Ashley has been home. It is reassuring to have the doctor see the improvements as well. It also means that she is becoming less reliant on medications and some of those have been reduced. We anticipate that some of the side affects like drowsiness will decrease and this will have an increasing positive impact on her recovery.

The therapists are also noting Ashley’s improvements in therapy. She has been home for just over three months and we have not had any set backs. The nicer weather is providing us with an opportunity to get Ashley outside more often and that has to be stimulating. It can also be tiring; she is ready to call it a day earlier then when is has been indoors all day long (other than commuting to therapy).

Ashley will be making a road trip one day this weekend and she is looking forward to it. Please pray for her to have a safe and enjoyable time.

April 14th

2008-04-14T13:55:00.001-04:00

Ashley can’t wait to talk. She is creating sounds more than ever and over the weekend she was positioning her mouth to annunciate. We can’t attest to hearing sounds that we could say were words, but Ashley was trying. There are so many signals that have to reach so many muscles to get her speech back. The best news regarding this is that Ashley is not getting frustrated about it; she is encouraged by our reinforcement of her efforts.

Throughout this entire ordeal we continue to be in awe at Ashley’s positive attitude. Like everyone else she has her ups and downs, but we see many more smiles than frowns and whole lot more laughing than crying. Her determination combined with all the prayer support we are receiving is keeps us all going.

In speech therapy last week they lifted the bar on testing Ashley’s cognitive reasoning skills. It has included history homework. Ashley has been tested on Revolutionary War Era topics; specifically on Paul Revere and George Washington. It was a refresher course for Mary and I as well. While Ashley did not ‘ace’ the first test she came away with a solid ‘A’ at 95% correct.

Speaking of therapy, on Friday one of the therapists came over in the morning to assist with Ashley’s morning routine. That evening two more therapists came to watch a movie with Ashley. This was all on their own time. It is a reflection of the true vocation therapy is for the professionals at Lutheran. This is one of the many blessings we have encountered on our path to Ashley’s recovery.

Ashley was able to get outside in the neighborhood some more last week and she thoroughly enjoyed it. Just as Ashley being home has provided a conducive environment for Ashley’s rehabilitation, we are confident that warm sunny weather (needless to say, Ashley’s favorite!) will provide another boost to Ashley’s progress.

April 7th

2008-04-07T14:34:00.000-04:00

We missed posting an update last week, but that wasn’t for lack of news. As you will see from the latest picture added at the bottom of the site Ashley’s standing frame has been assembled and she is using it. We’re glad we had the pros do it. There was a bit of fine-tuning and we wouldn’t want Ashley to be uncomfortable in it.

Over the last couple weeks Ashley has continued to improve in several ways. She is looking to her left much more often and she is moving her right arm more frequently. She is managing to work those tight tendons out. Quite often Ashley will move her arms, or her legs and when we question her to find out if she was trying to get our attention, or if she had a muscle spasm she will indicate that she was merely exercising her control. It is a reflection of Ashley’s determination. We know that therapy and the workouts we do with her at home are quite tiring, both physically and mentally, but she just keeps going.

Sound is another major change. While Ashley is not forming word sounds yet she will respond when asked to say something. Like with moving her arms and legs, Ashley will warm up her vocal cords often. In speech therapy they are confident that it is just a matter of time, and a lot of hard word on Ashley's part, before she will be speaking again.

The warmer weather is a blessing. We got out with Ashley on Saturday and Sunday and plan to do so every day that it is nice out. Nothing seems to please her more than to get outside and to stroll through the neighborhood. It is apparent that Ashley likes bumping into the neighbors, most of whom she has not seen since last summer. Her beaming smile confirms that she enjoys seeing everyone.

We continue to hear of the prayer support that is being offered on our behalf and it is certainly humbling. We don’t know what we did to deserve all the loving support we have received. We are very thankful for it. Ashley’s faith is strong and we can see that she is positively influenced by it as much and the rest of our family is. We would certainly say that prayer is a vital component to making Ashley’s traditional therapy an ongoing success.

March 25th

2008-03-25T11:37:00.001-04:00

Happy Easter!

We had a wonderful Easter. All four of us went to Easter Mass together. Ashley was fully engaged. She held her head up and looked to her left and right often. Ashley even received communion during mass.

That was the start of a full day. We hosted Easter (with a lot of help from relatives) so Ashley could be comfortable and yet visit with everyone. She had a wonderful day full of smiles and listening to stories as she got caught up on what all her visitors were doing lately.

So what’s new…

Ashley got a new pair of ankle-foot orthotic boots (better known as AFO boots). These help keep her Achilles tendons’ stretched to avoid any problems when she stands now and to insure she keeps the flexibility she will need when she is able to walk again. She wears them at night. We have to ‘break’ these in so she wore them for short periods and this week the specialist is making some adjustments to insure the fit comfortably.

A few times last week Ashley’s eating exercises did not go so well. The speech therapist told us not to worry; Ashley is actually building up her tongue and cheek muscles and moving them differently. We were concerned that this might be a set back, but it is merely another phase of recovery and they are confident that Ashley will restore the coordination she needs to be back on track with eating soon. Of course we can’t wait for the day that Ashley can receive all her nutrition orally.

Thank you for your continued prayers; your appeals have been answered and we feel the presences of the Holy Spirit guiding Ashley as she continues to exhibit unwavering focus in her efforts to recover. May you have a blessed Easter Season.

March 17th

2008-03-17T08:11:00.001-04:00

From Ashley and all of us, “Happy St. Patrick’s Day!”

St. Patrick was actually born in Britain to a wealthy family. He was kidnapped in his teenage years by Irish raiders that attacked his family’s estate. It was during his captivity that Patrick turned to his faith for solace. Eventually in a dream, he felt was inspired by God, Patrick was told that he could return to Britain and he simply walked away from this captivity. Ashley, like St. Patrick, is facing a loss of independence, but she to will rely on her faith to heal her.

Ashley did a lot in the last week.

She got a preview of what the software on her new computer will look like. It will take a while to master, but it will raise communication to a new level. Ashley made sure her speech therapist understood that she only saw the computer as a temporary communication device and that she wanted the therapy’s focus to remain on reestablishing her vocal speech.

On Wednesday Ashley was the model for a couple of different standing frames that her rehabilitation facility is considering. Luck for us they are from the same manufacturer as Ashley’s standing frame and they can assemble hers at our house. On a related note - when we transfer Ashley from one location to another we ask her to support her weight in a standing position for a short period of time and then, when she is in front of the object she is going to sit on, we ask her to slowly bend her knees and sit down. We have to support her at all times, but lately it has been much more support of balance than holding her up. She will often support her own weight and then sit down in a slow fluid motion.

The weather has been nice enough that Ashley has been out for walks in the neighborhood a few times in the last week. We look forward to those walks occurring more frequently in the future. Like the rest of us, Ashley has had enough of winter and loves to get outside.

As most of you know, Ashley communicates by moving her left arm. She has a button that, when pushed by her arm, activates an audible ‘Yes’. On Sunday Ashley started to raise her right arm as well as her left arm to answer yes. Needless to say we were excited and proceeded to ask more questions and Ashley continued to raise her right arm.

We have not seen Ashley raise her right arm to a request since prior to going to Chicago in September. Ashley was beaming with pride and we provided her with a standing ovation. It takes her great effort to raise her right arm, but she insisted that her communication button be moved to her right arm Monday morning.

This is Holy Week and we have much to be thankful for. May God fill you with the Holy Spirit and bring you peace.

March 11th

2008-03-11T08:34:00.003-04:00

Ashley's long awaited standing frame arrived yesterday evening...
in parts.

Since it was a special order item the supplier did not assemble it. After opening the two large boxes and laying out the parts I grabbed the owners manual. After a quick perusal of the instructions I said to Ashley, "It's kinda like a bicycle. All I have to do is follow these 36 illustrated, some what straightforward, steps!"

Needless to say it is not yet assembled.

On Wednesday Ashley's therapy facility is getting a standing frame (they use a 'tilt' table now to raise clients to a standing position). Since Ashley used a standing frame in Chicago they have asked her to 'model' their new one. Ashley was more than happy to oblige.

Aside from the standing frame Ashley has had a good week. There were a couple of days were she was drowsy during the day so we are going to consult with her doctors to determine if we can yet again reduce some of Ashley's medications. She is having fewer painful spasms and no problems with nasuea. The most common side affects of the meds are drowsiness and nasuea. Ashley seems to have the upper hand on one. It will be nice to reach the point where she is lucid all day everyday.

While we are waiting on Ashley's computer (probably has a similar leadtime as her standing frame) we have been using paper examples of the screens she will see that her speech therapist provided. Ashley is getting more comfortable with them and it is apparent that once she has the computer she will be able to communicate to us what she wants and needs much quicker than our current hit-n-miss approach of questioning.

Related to the computer Ashley makes it clear that she doesn't want the speech therapist to let up on the exercises they are doing to return Ashley's speech. Often times Ashley will hum. She smiles when we ask if she is warming up her vocal cords. She continues to make progress with her eatinig exercises and that will lead to developing the muscle strength needed to speak again.

This is the last week of lent prior to holy week. We can feel all the prayers that you are sending our way. Our pray in return is that God conveys to you His blessing and that you feel His loving guidance.

March 3rd

2008-03-03T17:46:00.001-05:00

It is always easiest to remember what just happened. That is certainly the case looking at this last week. Today Ashley seemed to really coordinate with eating and swallowing. If you think about all the mechanics involved it helps you to appreciate what Ashley has to think through and then hope all the signals get through. Gee, I thought remembering all the steps (and properly executing) for a good golf swing was difficult.

Ashley have been taken off of a three different medicines since being home and has had the dosage reduced on another. She has not had any problems with digestion and she seems more alert. We will be pursuing treatment for stiffness in Ashley’s neck and right arm, but with Ashley’s reduced episodes involving spasms we are on hold with the procedure for an internal pump to provide that medication.

Ashley had several visitors this weekend and enjoyed the company. Her mother and I even managed to slip out to dinner on Saturday night for our 25th anniversary. We went to a restaurant that Ashley chose and we both agreed it was an excellent suggestion.

We expect Ashley’s standing frame to arrive at our home this week. A standing frame is a device that Ashley sits in and then via a pneumatic pump raises her to a supported standing position. Currently when we transfer Ashley from one spot to another we usual support her in a standing position for a few minutes. Now she will be able to put weight on her legs and feet for a half hour a couple times a day. It helps her circulation and also helps her build muscle tone.

Had it not been for the rain today it would have been a great morning for Ashley to get out for a walk (nearly 50 degrees), but now a cold front is coming back. Spring will soon be here and you can count on Ashley wanting to get out in it!

February 25th

2008-02-25T18:37:00.000-05:00

Ashley had a great week last week. While there where no earth shattering milestones to report she did well everyday last week. Her attitude has been very positive. Each day in therapy she participated well and the therapists are all setting new goals for her. At home she is communicating to us so we know what she needs and wants.

She still has a long way to go, but we see a matching up between Ashley’s ambition and her body’s cooperation. Her right arm is moving more than it has in months. She is having fewer spasms and the ones that do occur appear to be shorter in length. When Ashley is transferred from one spot to another she is putting more weight on her own legs and aiding in the transfer.

Ashley had therapy everyday last week which is a first since she got home. It makes for a busy day, but we know that having Ashley home has played an important part in her progress as well.

Reading Ashley her updates over the weekend had the usual affect of putting a big smile on her face. Ashley is totally aware of all the loving support around her and that alone is sufficient driving force for her to focus on getting better.

February 20th

2008-02-20T15:26:00.001-05:00

Ashley’s grandparents came to visit over the weekend and we immediately pressed them into service. Among the things they helped us with was staining Ashley’s new dresser as we round out the renovation of Ashley’s temporary quarters on the main floor of our home. The new layout is working out quite well.

The big news so far this week is that Ashley’s award winning smile has returned to its original prominence. On Tuesday morning Ashley’s dentist straightened and bonded Ashley’s loose front tooth back into place. It looks as good as it ever did. It is certainly making eating a lot easier for Ashley as well.

On Monday we took Ashley to a neurologist that specializes in movement disorders. He is going to be assisting Ashley in dealing with her tone and spasticity issues. We are confident that the measures they will be taking in the up coming weeks will greatly aid Ashley in her efforts both for comfort and making new strides in therapy.

This also marks the start of five days a week in therapy for Ashley. With the move back to Fort Wayne we started out at three days of out-patient, then four and now Ashley receives physical, occupational and speech therapy everyday. Soon Ashley will be receiving a computer that will attach to her wheelchair. This system will primarily aid Ashley with communicating to others. It will also allow her to access the internet and forms of entertainment that she will control.

Ashley’s short-term memory is even showing strength lately. That was an area that is particularly susceptible with her type of injury. She can often remember the current date and will answer questions from topics discussed earlier in the day or in previous days.

There is no stopping Ashley. While the process seems painfully slow at times it is awe inspiring to see her continued determination. Now she has the brilliant smile reflect her confidence. A confidence that is reinforced with all the loving and prayerful support we are surrounded by.

February 13th

2008-02-13T12:11:00.000-05:00

Ashley had a busy day yesterday (Monday). She had two doctor’s appointments and one dental appointment. First of all we are proud to report that Ashley has no cavities! Actually we were high fiv’n Ashley since she followed the dental technicians instructions to open her mouth, hold X-ray films in place and sit still for the exposures. Those X-rays showed that her oral health was quite good.

In addition to the 6 month checkup the dentist looked at her loose front tooth. Turns out he will be able to reposition it and have it back to looking as good as ever. Ashley’s smile will return to its original brilliance soon.

Her doctor appointments were with the family doctor and a neurosurgeon. Both appointments concluded with positive comments.

Last week in therapy, and repeatedly at home, Ashley moved her legs on request. In a seated position the therapist placed a ball on her feet and asked her to ‘kick’ it off. It took awhile but Ashley moved both legs causing the ball to fall off. She has repeated this motor skill at home with a balloon. Ashley has wiggled her toes for several months, but this was the first time she coordinated a move of both legs on request.

Ashley has enjoyed visits from family and friends. Her grandparents are coming up from Florida this week. Hopefully they will bring some warmer weather with them. We can’t wait to be able to take Ashley for walks outside so we are routing for spring.

We are in the first week of lent and we know that so many of you are including Ashley and our family in your pray intentions. We thank you for continued support, and Happy Valentine's Day.

February 5th

2008-02-05T16:39:00.000-05:00

Ashley was out on the town this last weekend. We went to the high school girls' sectional swim meet to root on Ashley's former team mates. It was a great time and Ashley thoroughly enjoyed it. On Sunday she attended her first church mass since being home.

This week Ashley will have therapy on four verses five days a week and next week she will be in out patient therapy five days a week.

We continue to make Ashley's temporary quarters a bit more comfortable moving furniture in. We continue to hear encouraging feedback from Ashley's therapists and we continue to see positive signs. Ashley is moving more frequently when asked which shows that she is gaining more control of her motor skills. She still has a long way to go, but she shows no signs of letting up.

At this point we are getting cabin fever. We would love to get outside and take some walks in the neighborhood. Hopefully we won't have to wait long.

January 28th

2008-01-28T12:29:00.000-05:00

Good news. Ashley does not have to go back to Chicago this Friday. The procedure she was going to have is available here in Fort Wayne.

Ashley’s temporary quarters in our home are getting more civilized. She how has a real floor under her and drapes rather than sheets dividing the rooms for privacy. With the balance of her furniture coming in this week she will be all settled in.

Ashley has adapted well to being home. We continue to be encouraged by the therapy staff Ashley is now seeing here in Fort Wayne. The only significant milestone this last week is that Ashley coordinated both a leg and arm and turned her self from her back to her side. Similar to her first spoken word a week before, we have not witnessed a repeat of this, but it is further evidence that Ashley continues to expand her fine motor skill ability. The best news since we have been home is that Ashley continues to progress and has not taken any steps back.

Ashley’s ability to communicate via her ‘Yes’ button has been the greatest blessing so far. It confirms that she is aware of her surroundings and able to make choices. She chooses her clothes in the morning, selects what she has for her eating exercises. Tells us if she wants to listen to music, watch a movie, hear a story, or simply wants some peace and quiet.

We continue to be humbled by all the love, prayers and support that continue to come our way. You all remain an inspiration that helps us keep our focus on aiding Ashley as she continues to recover.

January 21st

2008-01-21T13:17:00.001-05:00

Although Ashley has been home less than a week she is heading off to her third day of therapy. As I speak the flooring in Ashley’s temporary bedroom is being laid. She will be coming home from therapy to a much improved living environment.

Ashley had company this weekend in the form or both relatives and friends. It is obvious that she is enjoying being home. Several times now we have brought Ashley out to the family room where she could sit on a sofa to watch a movie, and yesterday a little football. Since Ashley can communicate to us via her ‘Yes’ button we are able to ask her what she wants to do and then do it.

Along the topic of the yes button, Ashley reached a new milestone on Friday; speech. While at therapy and in the presence of not one, but three speech therapists, Ashley whispered a response to one of them. The question was what her favorite sport was. The therapist nearest Ashley told Mary (who was temporarily out of the room) she thought Ashley might have said tennis, but that the only unmistakable sound was an ‘S’. Mary told them that Ashley has been a competitive swimmer for years. The therapist said that must have been it. While it was difficult to understand it was not just sound it was the formation of speech.

We have not heard Ashley annunciate since (you can imagine that we are coaxing her) but the therapist said that she most certainly managed to get the complex signals to all the muscles that were necessary to create more than just a sound. To say we were excited is the biggest understatement so far this year!

While it is wonderful to have Ashley home she will be going back to Chicago (Northwestern Memorial) at the end of the month for a medical procedure. The procedure is to implant a pump that will provide Ashley with controlled doses of the muscle relaxant she receives. At this time she takes the medicine orally (though her peg-tube) which requires higher dosing with a side affect of drowsiness. Following the procedure she will go back to Rehabilitation Institute of Chicago (RIC) for a week to 10 days for evaluation to get the dose just right before coming home.

The original plan was for Ashley to have the procedure before coming home (at least that is the excuse I am using for not having the house ready for her) but the scheduling did not work and we were anxious to get both Ashley and Mary home even if there would be a return trip. Looking on the positive side we can consider the nearly three weeks Ashley will be home as the trial run. We will be able to ask questions about the transition to home care from the hospital setting we would not have thought of until we experienced it.

Father Jason from St. Vincent’s came over on Sunday to provide Ashley with Holy Eucharist. All you need to see is the smile on Ashley’s face to realize how important her faith is to her. It is that faith, combined with your loving prayers and her unwavering motivation, that will she her through this challenge to a full recovery.

January 16th

2008-01-16T08:40:00.001-05:00

Ashley is Home!!!

For once we had a moving day unhampered by a fever or bad weather. We can attribute that to all the prayers that must have been said by all of you!

We got home late last night. Ashley handled the ride quite well. Her new room is still under construction but Ashley doesn't seem to mind; she had a good night's sleep.

On Thursday Ashley will meet her new therapy team here in Fort Wayne. We are confident that being home will have even more positive impact on Ashley's continued recovery.

It is great having the family back together!

January 14th

2008-01-14T18:27:00.000-05:00

Ashley is coming home!!!!!!!!!!!!!

After working with a couple of different vendors we finally got Ashley's bed delivered and installed this evening. Tomorrow we will be driving Ashley home. On Thursday she will have her first appointment with her out-patient therapy team here in Fort Wayne.

Ashley (and Mary) are anxious to get home. While there will be a whole new set of challenges to adapt too it will be great to have the family back together again.

While it was not easy having Ashley so far from home yet we were blessed that she was admitted to the Rehabilitation Institute of Chicago. It will be hard to say goodbye to all the loving and supportive staff that did so much for Ashley.

Ashley continues to keep her focus on recovering and we have faith that she has reached the stage where she can be at home and properly continue her rehabilitation.

A heartfelt thank you to all of you for your on going prayers for Ashley and our family. Your support has helped us to keep our faith strong and to provide Ashley with the encouragement she needs.

January 7th

2008-01-07T10:15:00.000-05:00

Ashley continued to build momentum on her gains from the previous week. While we know Ashley has a long way to go on her road to recovery we are impressed by her progress. Both her communication and eating skills improved. At the same time she appeared to experience less pain from muscle spasms.

We are consulting with the doctors to determine if additional steps should be taken at this time to reduce some of the muscle rigidity and cramping/toning. The rigidity issues are with Ashley’s neck and right arm. That said her right arm is improving. She has much more flexibility in her elbow, wrist and fingers than she has had in the past. Ashley use to wear a brace on her right wrist and hand at night, but now we are finding it unnecessary.

On Saturday half a dozen friends from her high school days paid her a visit. There is a picture posted to the home page which also is the first picture of Ashley since her temporary upper teeth brace was removed. One of the gifts they brought Ashley was a video of several friends at a party the night before. Each friend spoke to Ashley on the video. Ashley requested seeing it again on Sunday and I am sure will want to view it often.

When her friends left she got a bit emotional which is both understandable and healthy. I am sure she was thinking, “I should be heading back to school just like they are.” Ashley does not show very much sad emotion. Her spirit is so strong. Even after six months of being cognizant of her condition she is still focused on improving and directing her energies toward her efforts to recover.

We have met several other patients and their families while we have been at RIC. Ashley has been the only one with an injury related to an auto-immune disease. The majority of the other patients have fallen into one of two categories, auto accidents among the civilians and battle injuries among the soldiers that we have met at RIC.

We have formed a bond with many of the patients and their families. We all have the same focus, seeing a loved one through recovery. The primary guiding force among those that we have met is faith in God. There is a young Muslim man from Kuwait who was injured in a car accident. His mother and Mary have spoken on several occasions. She has told us she and her family back in Kuwait are praying for Ashley. We have assured her that we are also praying for her son.

Over time we have found that the prayer support for Ashley and our family is growing. This blessing has provided us all with the strength we need to achieve our goals of bringing Ashley home and continuing her recovery.

We are still targeting Ashley’s homecoming for this month. A couple of things might extend her stay. If we pursue an additional treatment for Ashley’s muscle stiffness and spasms it could add a week. The other issue is Ashley’s uncanny tendency to spike a fever the day a transfer is scheduled. She did that both for the Virginia-Fort Wayne move (twice) and for the Fort Wayne-Chicago move. As such it might be a good strategy to keep the travel date a secret from Ashley. A big difference with this move is that there will be no ambulance involved (air or ground). We will be driving Ashley home this time.

January 2nd

2008-01-02T18:07:00.000-05:00

Happy New Year!

Ashley has continued to make measurable strides.

Although it is still considered training and she continues with tube feedings, Ashley now receives a food tray for every meal. Whatever is on the menu is pureed. She still has to work hard to get the right signals to the right muscles for eating. Watching Ashley work through each step makes you appreciate just how complex our bodies are and yet we take ‘simple’ tasks like eating for granted. The feeding exercises tire her out, but again when you think of all the muscles and the timing that is required you begin to appreciate how exhausting it could be.

The ‘yes’ communication button has made a huge difference. For the first time in six months we have a reliable means of communicating with Ashley and truly knowing what she is thinking and wants. Achieving this milestone has now opened other means of evaluating communications with Ashley. In the Tech Center at RIC they now can perform various test with her. They may ask Ashley to press the button anytime the therapist states a particular number. Ashley’s accuracy is quite high. She has even pulled up music videos on the Internet via a computer that can interface with the button. It offers her choices and loads whatever Ashley chooses.

The term ‘transfers’ has a particular meaning for Ashley. It is not a bus transfer. It is moving Ashley from one spot to another. It could be from bed to a wheelchair, the wheelchair to a therapy mat, or anything else. On Monday Ashley did a transfer to the front seat of a car. This was not your ordinary car though. It was just the passenger compartment and it is on the 12th floor of RIC. A new picture posted to the homepage shows Ashley in the passenger seat along with Mary in the driver’s seat. What you can’t see from the photo is that this ‘car’ faces a window. When I told Ashley not to pull a ‘Thelma & Louise’ and drive through the glass she started cracking up with laughter. That was only the start of it. The therapist told us she brought a Chicago area patient up to the ‘car’ a couple of years ago and he said it looked like a car that he reported stolen (it was a Dodge Spirit) and he wanted to know what the VIN number was on it.

Today Ashley did a transfer to a real car. We pulled up in front of RIC and a heavily bundled Ashley (it was about 10 degrees at the time) was transferred by me to the front seat. Prior to the exercise with the ‘car’ on the 12th floor I didn’t think it was possible to stand in front of a wheel chair and get Ashley in the front seat of a car. Well it is. We took a short drive thought the neighborhood to see how well Ashley would balance herself it the slightly reclined seat. She came thought with flying colors.

As some of you may know one of Ashley’s top front teeth was loosened when she was prepared for surgery back in July at the University of Virginia Hospital. She has worn a temporary brace since that time. It was not the best looking thing and it was irritating her lip. Well today it was removed and while the tooth is slightly loose it is healthy and should be correctible in the future with some orthodontia. So it looks like Ashley will be getting her award winning smile back as well!

Anything can change, but we expect Ashley to come home this month. We have been making modifications to the house and are working with the transition team at RIC to make all the necessary arrangements for therapy and procurements of equipment and supplies to carry on Ashley’s aggressive rehabilitation.

We are thankful for Ashley’s progress which now appears to be building. It will still be a long process, but Ashley shows no signs of letting up. Her determination and focus is truly awe inspiring. Coupled with the prayers and support we have had from so many throughout this ordeal it lifts our spirits and renews our faith.

We wish you all a prosperous and healthy 2008!

Christmas Day

2007-12-25T22:16:00.001-05:00

Merry Christmas!

Ashley achieved a significant milestone in the last week. On Wednesday the technology folks at RIC tested Ashley for response to yes/no questions using a button. The button is rigged to her wheelchair and placed so Ashley can hit it by raising her left arm for a ‘Yes’ answer. Upon pressing the switch an attached speaker actually says ‘Yes’. She was quite accurate on Wednesday after they set it up. By Sunday we had relatives on the speakerphone asking Ashley questions. She was 100% during those calls. Her psychologist asked her a range of questions on Monday and was quite impressed by her response.

Now when Ashley is tired, or simply on in the mood, she will not respond, but what is so encouraging is how accurate she is. Our prayers are that this is the first step in a return to full communication skills.

On Saturday Ashley did a first since becoming ill. She went to a movie. This wasn’t just a video being shown at RIC. Courtesy of the nearly 50 degree weather Chicago had on Saturday we ventured out and went to a movie theater a few blocks away. We saw “P.S. I Love You”. Ashley showed appropriate responses by laughing at funny parts and crying at the sad parts. It had to be liberating to her knowing that she can start to do some ‘normal’ everyday things.

Another major step is an increase in Ashley’s eating exercises. For the first time Ashley went to the lunch room on her floor and the speech therapist had a plate of pureed foods for Ashley to sample. All this week Ashley will be cutting back on her tube feed lunches to increase her appetite for these exercises. It is still an exercise and not a meal substitution. While Ashley is taking and swallowing thickened liquids and pureed foods there is still a lot of muscle coordination that needs to re-develop before she will be able to eat enough at a single setting to represent a full meal.

We are now targeting the middle of January for Ashley to come home. We have a lot of action items to address and Ashley’s physical health must remain stable so we can bring her home. She is anxious to come home.

Our family was together on Christmas day. Thanks to all the prayers and support we have received we can say we had a blessed Christmas. We sincerely hope that all of you feel the presence of Christ in your lives.

December 17th

2007-12-17T13:36:00.000-05:00

Ashley has had a successful transition back to Rehabilitation Institute of Chicago (RIC) this past week. She has gotten right back into therapy and each of the therapists felt that Ashley was ahead of where she was when she left RIC for active treatment in November. Among the milestones this week was Ashley eating (small amounts of course) apple sauce. Although she has taken small amounts of ‘thickened’ liquids as part of her swallowing practice, her speech therapist feels Ashley has coordinated all of the muscles involved to where she can actually take several bites of a pureed food.

Ashley’s attention span and eye contact also appear to be improving. A great move forward is the return of Ashley’s sense of humor. We have not seen her laugh as hearty as she is now since she had a high fever back in October which landed her in the hospital.

In a technology session Ashley was asked to follow objects on a computer screen. The goal of the exercise is to determine if Ashley can use a computer screen which uses a laser to track her eye glances to objects on the screen that could represent words for communication. The first objects were black balls that appeared one at a time on different parts of the screen. Ashley tracked two of the five. Then the technician changed the object to a picture of a cat. Ashley tracked five of five! We are hopeful that this will lead to a successful implementation of interactive communication for Ashley in the not to distant future.

So we are seeing some rebounding, but also some marked improvement.

Ashley’s room is now on the west side of RIC. She no longer has a view of Lake Michigan, but there is not much to see on the lake this time of year. Most of her view is of the old Woman’s hospital, but she also has a clear view of Water Tower Place and the Hancock Building.

On Saturday Ashley listened to a phone call from another sufferer of ADEM. Al was stricken in 2000 just after finishing college as a chemical engineer major. Not only has Al gotten the upper hand on ADEM, it has also changed his vocation. Al started medical school this year with a goal of becoming a neurologist. Ashley’s eyes were glued to the phone as Al spoke and it reminded me of her call from Kevin who also has ADEM. We could tell that Ashley was hanging on every word they both spoke. She knows this can be overcome and both Al and Kevin are an inspiration to her.

As we have mentioned in the past the support Ashley and our family have received has been humbling. At the top of the list are our thanks for your prayers. The cards and letters Ashley receives and the comments we read her from her blog also put a smile on her face and we know that it boosts her morale. Ashley is getting cards, letters, mass intentions and notes from many people we don’t even know. The love behind each of those acts plays a critical role in Ashley’s recovery. Last week Ashley received a mail tube that was filled with Christmas posters from students in the 4th grade at St. Luke School in Boardman, Ohio. We don’t know anyone at St. Luke’s; I had to look at a map to find Boardman (it is south of Youngstown). We have a couple of guesses as to how they heard of Ashley. The fact that they have invested their time and love to show Ashley their support is priceless. The same can be said for each prayer, loving thought and communication sent our way.

It is comforting to know that there are literally thousands of caring individuals that are thinking and praying for Ashley. It makes facing this challenge possible.

In this week before Christmas our prayers will be with each of you that you will feel Christ’s loving peace.

December 10th

2007-12-10T20:58:00.001-05:00

Ashley is getting settled back into RIC. Since she was at Northwestern for nearly a month she is going through her re-evaluation by each of the therapy groups which started today.

Although we did not see dramatic changes in Ashley following the plasmapheresis she is showing improvements. She seemed more engrossed then before when we read comments off her blog to her. She had a range of emotions from laughing at the funny statements to crying at the serious passages. While no one wants to see their child cry we know that a lack of that emotion would not be normal. Ashley has very few bouts of depression and normally we can console her in a short time. She is showing a health motional range which is part of the improvement we are seeing.

Our hopes and prayers at that the staff at RIC will capitalize on those advancements and assist Ashley on accomplishing new milestones. By the middle of the week Ashley’s Physiatrist will tell us how long he is targeting for Ashley to remain at RIC. Of course our goal is to have Ashley in good health and on a track to recovery that we can continue from home via in-home and out-patient therapy.

Last week when we talked about going back to RIC Ashley would react positively, raising her arms and smiling. Obviously she was ready to leave the hospital and get back to therapy.

Mary picked up a small Christmas Tree for Ashley (a photo is posted to the bottom right of the page) and we are planning on celebrating Christmas with Ashley at RIC.

Meanwhile at home we are setting up the Christmas decorations while at the same time making preparations for Ashley’s return. The main project is the construction of a roll-in shower on the main level of the house and temporarily converting the living room into Ashley’s bedroom. The framing and electrical is done. Next comes the plumbing and then the tile work. We won’t be in need of a ramp. Ashley’s social worker said her wheel chair will be able to handle the couple of spaced out steps we have whether coming in the front door or garage.

Ashley is remaining strong which is a reflection of her faith. Each day as we approach Christmas we with thank God for the gift of Ashley. We know she has been an inspiration to so many before her illness and will continue to be as she works to recover. Thank you for your continued prayers. They are being answered and we are grateful.

December 7th

2007-12-07T13:31:00.001-05:00

Ashley is transferring back to RIC today.

She has recovered quite well from the bout this past weekend. A new milestone for Ashley that occurred this week was moving from a continuous feed to what is referred to as bolus feedings. Although it is still liquid nourishment she is getting it more like a meal verses constantly.

It is difficult to say whether or not the plasmapheresis treatments helped Ashley. Again the combination of a sever infection (which she has successfully fought off) and the seizures could be masking some progress. Hopefully with a return to RIC and a resumption of her therapy there we will see that it is aiding her.

Thanks to all of you for your prayers while Ashley was at Northwestern Memorial. Just as the “12th man” advantage a football team has playing at home, you have been that 12th man helping Ashley (and us) with your prayers.

Ashley's mailing address at RIC:
Rehabilitation Institute of Chicago
345 E. Superior St. 10th Floor
Chicago, IL 60611

December 3rd

2007-12-03T23:14:00.000-05:00

Ashley has successfully beat back the infection that landed her in the ICU a week ago. All blood tests have come back clear since the middle of last week. The combination of the infection and the course of the plasmapheresis treatments has her quite tired as she rebuilds her strength.

Ashley gave us a scary yesterday. In the late afternoon she had three seizures in rather quick succession. It is not unusual for someone in Ashley’s condition to have a seizure, but of course we were hoping she could avoid them. They seem to have been localized in that they appeared to only affect her left side. She was connected to an EEG all night last night to monitor her. She did not have a reoccurrence.

Ashley had been placed on a low dose of medication to head off a seizure, but now she will be given a larger dose. The medicine causes drowsiness so we are hoping that will not hider her in therapy.

As a precaution an anesthesiologist evaluated Ashley. He wondered about her choking reflect so he shot a syringe full of water in her mouth. Rather than choke Ashley simply swallowed it without any problem. This even after being given a high dose of medicine for the seizure. Seeing that the doctor simply said, “I don’t think we have to worry about choking.” Although Ashley has been given very small sips of water in the past and part of her speech therapy is getting her comfortable with minute amounts of liquids on a spoon she had never before had several ounces of water at once.

One of the things we noticed today is that Ashley’s right arm, which had been quite stiff from toning the last couple months, was limber. We don’t know if that is just a temporary side affect of the medication she was given last night, or if the seizure may have caused a change. Another difference was that Ashley was moving her eyes and head much more and tracking anyone that was talking to her. Perhaps this won’t be a setback for Ashley. We all know she is due for a break.

This will put a delay in Ashley’s transfer back to RIC which was scheduled for today. Hopefully she will transfer in a day or two. She spent less than 24 hours in the ICU and is back in yet another room on the 10th floor (this will be the 4th room she has been in on that floor over the last 20 days).

We know Ashley is anxious to get back to RIC and to resume full time therapy. Over the weekend we were moving some of Ashley’s clothes and other items to RIC and as we talked about it she would smile and raise her right arm to show her approval for getting out of the hospital and back to work with physical, occupational and speech therapy.

November 26th

2007-11-26T22:31:00.000-05:00

Ashley received her sixth of seven plasmapheresis treatments today. She is scheduled to receive her final treatment on Wednesday. Our hope is that she will go back to RIC on Thursday to continue rehabilitation.

We had a scare early Saturday morning. Just after midnight Ashley’s temperature started to rise. They began monitoring it more closely and they began placing ice packs on Ashley. By 7am the decision was to move her to ICU.

Jumping back a bit; on Friday she had a visit from old high school friends and later her brother Austin and relatives from Kentucky dropped by. Ashley was laughing with them and Mary and I had an opportunity to go out to dinner that evening. So the fever came as quite a surprise.

By the time the refrigerated blanket Ashley was placed on was able to reverse the fever’s climb Ashley reached a core temperate of 104.9. Needless to say we were very concerned. Ashley’s temperature slowly started to fall. It got down to 102.5 when they decided to give Ashley a break from the extreme cold she had to endure (the blanket temperature hovers around 39 degrees). When her temperature got back up to 103 degrees they turned the blanket back on, but it malfunctioned. By the time another one was placed under her and took affect the core temperature read hit 104.8.

As you might imagine our praying was going into overdrive. We also reached into the reservoir of prayers everyone has been offering up for Ashley. That brought results. Ashley’s temperature began to steadily fall she was tolerating the cold for an extended period. By 11:30 Saturday night her temperature dipped below 101. By Sunday morning her temperature was at (and sometimes below) 98.6.

On Monday Ashley was moved out of the ICU. She is still on the cooling blanket and she is still running a temperature, but nothing like Saturday.

The cause turned out to be an infection from an IV in Ashley’s arm. The doctor that first saw her Saturday morning suspected that and it was removed as soon as they could establish another IV.

Only time will tell how this latest infection will affect Ashley’s progress. She had not fully recovered from the infection that put her in the hospital at the beginning of November. The one thing that is obvious is that Ashley is a fighter. She is focused on getting better and she was not about to let this get the best of her.

We have every confidence that upon returning to RIC Ashley will jump right back into rehab and show us measurable improvement.

Ashley is in a new room with a new view. Fitting for the holiday shopping season she looks out on Water Tower Place. Now if that is not motivation for a 20 year old young lady to focus on getting better I don’t know what is!

November 19th

2007-11-19T11:57:00.000-05:00

As I type Ashley is receiving her third plasmapheresis treatment this morning. Each of the two previous treatments have gone smoothly. They take less than one hour to complete. There will be four more treatments by Wednesday the 28th. Ashley will stay at least one more day at Northwestern Hospital for observation. It is then our hope to readmit Ashley to Rehabilitation Institute of Chicago (RIC).

Ashley’s room looks out on the Gaither building which is part of the hospital complex. But not to worry; just outside her room is a window that provides Ashley with a view of Michigan Ave at Erie St. She can watch the shoppers and see some of the lights put up during the festival of lights event last Friday.

We have been pleasantly surprised by the active physical therapy department here at the hospital. One of our biggest concerns was that for two weeks Ashley would not get physical therapy outside of what we could do in the room (basically range of motion). Not only did both physical and occupational therapists show up the first day, but they have an excellent therapy gym. Best of all Ashley has scheduled therapy times. In fact she was scheduled to go this morning, but the treatment was moved up and we had to cancel. I just received a call from the therapist saying they have her rescheduled for this afternoon. Fantastic!

One of the other differences between RIC and the hospital is wheelchairs. At RIC they measured Ashley and provided a custom set of wheels. It’s a bit different here. It’s kind of on a first come, first served basis. The model we got our hands on is interesting. It is wide enough to hold a pro football offensive lineman. The footrests on the other hand are more accommodating for a person under five feet in height. So we put pillows on Ashley’s sides to make her more comfortable. Another difference is no seatbelt, nor headrest. Mary rigged up both with sheets. The headrest is possible to put together because the chair has a high looping bar (like you see on an airport wheelchair, and makes me think of the sissy bars that were popular on bicycles when I was a kid). I don’t think we will be posting a picture of Ashley in the chair; not too flattering, but I think I have given you enough info to draw a mental picture.

While our hopes were for faster progress; this thanksgiving we will be thankful that we have Ashley, that we have been able to have her treated in some of the finest medical facilities in the country and for the comfort that has come from the prayers and support provided by all of you. Family, friends and faith. I can’t fathom anyone going through an ordeal like this without them. We are truly blessed in all three categories.

We wish you all a heartfelt and warm thanksgiving.

November 14th

2007-11-14T08:30:00.001-05:00

Ashley was transferred to Northwestern yesterday afternoon. She will start her treatment today, or tomorrow depending on internal hospital scheduling.

The treatment is called plasmapheresis. I would compare this to kidney dialysis. For fourteen days Ashley will have the proteins filtered from her blood in hopes of removing any proteins that maybe causing her auto-immune system to interfere with her recovery. Each treatment takes about 1 hour and is done right in her hospital room once per day.

It is our hope that this will have a positive impact on Ashley's recovery and that she will return to Rehabilitation Institute of Chicago for ongoing therapy after the treatment.

Your prayers are being felt by us, and we are confident that they will be answered.

November 13th

2007-11-13T10:02:00.000-05:00

We have decided to pursue the active treatment for Ashley. She will be admitted today to Northwestern Memorial Hospital next to the Rehabilitation Institute of Chicago (RIC). The course of treatment will be 14 days. After the treatment it is our hope she will be able to return to RIC and continue therapy.

Please pray that this course of treatment will aid Ashley in her recovery. Thank you for all your loving support of Ashley and our family.

November 12th

2007-11-12T18:17:00.000-05:00

The highlight of last week centered on nutrition for Ashley. She has had an on-going, on-again-off-again issue with nausea. One look at the list of her medications points out the likely culprit. Almost every one of them lists nausea as a potential side affect.

As such the nutritionists and doctors have tried several strategies to overcome this problem. We don’t know if we have hit on the right combination, or if Ashley is just more able to fight the nausea back, but last week was her best week ever. We are hoping this is now one thing on the list of concerns we can put behind us.

In all Ashley did well in therapy last week. She started out strong right from the start and stayed at that level all week. The only set back we have seen since her trip to Northwestern Hospital a couple of weeks ago was her immediate head movement to track sound or movement. She is still turning her head, but not with the same frequency, nor a fluid as before.

Pain management may be what becomes a focus area. At times Ashley seems unable to get comfortable, but then with no change in medication she will sleep all night and have a good day. We think it is a combination of muscle cramps and neurological activity. Until we have a consistent communication method we can’t be sure.

This week we will likely make a major decision. We are discussing an active treatment for Ashley that may assist her recovery. Since her condition is so rare it is difficult for the doctors to even attach a percentage of likely success of it. The down side is that the treatment takes two weeks and Ashley would likely have to be transferred to the hospital. As such she would not receive therapy for that duration. Should the treatment have no measurable affect the loss of therapy during that time could be detrimental.

The neurologist is conferring with Ashley’s physiatrist (physical medicine doctor) to determine the possibility of continuing Ashley’s therapy at some level during the course of the procedure. We would appreciate your prayers for guiding us to make the right decision for Ashley.

Once again Ashley beamed as we read her the comments from the site. She also enjoyed the cards that have been mailed to her. She is fully aware of all the support she has and we know that along with all your prayers that is what has kept her spirits up. It is truly a gift that Ashley is able to keep a positive attitude and continues to persevere.

Chicago can’t wait for the traditional start to the Christmas shopping season. This Saturday Michigan Avenue hosts the Magnificent Mile Lights Festival. If the weather cooperates we plan to take Ashley out to enjoy the parade and fireworks along the Chicago River. We won’t be out too late since it gets dark so early the fireworks begin at 7:00.

November 5th

2007-11-05T18:48:00.001-05:00

I think we can say Ashley has sprung back from the setback she had from battling the infection from last weekend.

Over the weekend and especially today Ashley was showing marked improvement. Whereas she was more irritable during the first few days back from Northwestern Hospital, the last couple of nights she slept well and was looking around more and seemed more comfortable.

Ashley had made significant progress just over a week ago in moving her head and locating sources of sound and tracking them. Then the infection threw her for a loop. Now she is making up for that.

In physical therapy today she was in a supported standing position for nearly 30 minutes. That is the longest she has had her weight on her feet yet. During occupational therapy her task was to place pegs in a board. She needed assistance, but it was apparent that she was concentrating quite hard looking back and forth from the board to the container of pegs. Toward the end she was showing frustration with her lack of eye-hand coordination, but that in itself is a sign of progress that she is focusing in on a task and has the desire to complete it.

Even though the cold weather is moving in Ashley is getting bundled up and taking on the windy city with trips to the park a block away and even going to the neighborhood grocery store with Mary.

Ashley’s original return date was a week from this coming Friday (November 16th) but now her doctor is considering an extension. We are for Ashley staying longer especially due to setback and the rebound she is now making.

October 31st

2007-10-31T09:21:00.000-04:00

Last week through the early part of this week was a roller coaster for Ashley. She showed some strong progress in therapy. She has been tracking people with her eyes for quite a while, but her neck seemed too stiff to move in a fluid motion to follow someone or something. That changed last week. Ashley was turning to track and would turn to look to a source of sound immediately. She was also improving on her ability to reach out and grab items placed in front of her.

On Friday morning she had a high temperature and her RIC doctor decide she should go to Northwestern Hospital (one block away) for tests to be on the safe side. It turned out to be a treatable infection. They decided to keep her over Friday night for observation. Ashley’s temp and heart rate spiked again Friday night and she ended up at Northwestern until Monday afternoon.

The good news is she has responded to treatment and is back at RIC. The bout took a lot out of her and she was still pretty lethargic on Tuesday. Even so she was back to cracking a smile and chuckling to a joke Tuesday afternoon.

Each week the wonderful staff and students at St. Vincent’s school send a care package to our home. The most prized contents are cards a given class of students makes and sends along. We had to wait until Tuesday to read them to Ashley this time, but each time we do you can see in her eyes and smile the appreciation she has that so many people, even after four months, are thinking, caring and praying for her. The tremendous support Ashley continues to receive is an invaluable positive aspect in her recovery.

Since Ashley was out of RIC for four days the therapists have to re-evaluate her. She really wasn’t in a mood for it on Tuesday, but with the Speech Therapist Ashley did reach a new milestone. To set this up, Ashley has been taking sips of ‘thickened’ liquids such as OJ and Cranberry. She has also had minute amounts of pudding. The reason for thickened verses straight liquids is to insure nothing is getting into her windpipe. A thicker substance is more likely to cause a cough reflex than liquid. Well Ashley was given good old tap water on a spoon which she swallowed without any problem. Next she was given the thickened cranberry in a cup. Ashley took a sip and swallowed without incident.

So even after going through a rough and tumble weekend Ashley is fighting to get back on track to recovery.

Ashley had an appointment with an Immuno-Neurologist on Tuesday. This specialist is going to review all of Ashley’s records and do updated scans and tests with Ashley to determine what has been going on with her myelin. It will take a while for her to present her finding, but it will give us a sense of how Ashley’s brain is recovering and what likely to expect in the future.

While the vast majority of you had no idea what Ashley was going through this weekend, your prayers were being answered. The events of last Friday could have been extremely detrimental to Ashley’s recovery, but she bounced back and is getting stronger by the day. To have seen what see went through this weekend and to see her smile and respond during therapy on Tuesday is nothing short of a miracle.

October 22nd

2007-10-22T17:40:00.000-04:00

The highlight of Ashley’s last week had to be the two and a half hours we spent out on Navy Pier on Saturday. First of all who would have thought it would be shirt sleeve weather this late in October? Two factors that were present could have made Ashley uncomfortable that was the sheer duration of time in her wheelchair without being repositioned and the second was getting over stimulated by the large crowd. Neither had an adverse affect on Ashley; she thoroughly enjoyed it.

For a follow up on Sunday we walked along the Lake Michigan shore and then visited the park that is next to Navy Pier and viewable from Ashley’s window. The sights were spectacular and Ashley was taking it all in with smiles.

On Saturday night Ashley took a phone call from Kevin. Kevin lives in Denver and is recovering from ADEM. He was struck thirteen months ago. He told Ashley to hang in there and to keep up the hard work. We appreciated Kevin’s encouragement and it was obvious that Ashley was hanging on every word he spoke. Here was someone that was in her condition and he was speaking, could walk and was able to do many things on his own. She was listening to hope; that she too can, and will recover.

During the week Ashley tried a new device in physical therapy. It was similar to an exercise bike. The difference was that this unit was set to turn with Ashley’s feet strapped in at a slow rate. If Ashley applied pressure to the pedals it would record that. The system ran for several minutes. At the end it showed that Ashley did indeed, at times, apply pressure to the pedals and was pedaling. She also appeared to enjoy it.

While Ashley has her moments of sadness and we all wish her progress was faster it is amazing how often Ashley is smiling and laughing along with us. It is not possible to know what she is going through; even so it’s hard to imagine what it would take to keep your spirits up when your body is not doing what your mind is asking it to do. It shows that Ashley is up for this challenge.

The cards she continues to receive and the posting on her blog that we read to her must be providing some of that inspiration. She is witnessing how much love and prayerful support is on her side.

October 15th

2007-10-15T09:57:00.000-04:00

What a difference a week has made in the weather. Last weekend Ashley’s view of Lake Michigan was full of yachts, motor and sail boats. This weekend only a few die hard boaters were out. That did not keep Ashley cooped up. We took an extensive walk on Saturday (her longest yet) with Austin guiding Ashley. Ashley did not tire, or show any agitation. She would have like to stay out longer. On Sunday we braved the cool temperatures and a bit of drizzle. Again Ashley was pleased to be out. She knows it is only going to get colder (what a blessing for the extended warm weather we experienced to this point) and she wants to get out and about while she can.

We (both therapist along with Mary and me) are still working on developing a consistent yes/no communication with Ashley. We have known since Ashley first laughed back in July while we were still in Virginia that she can process the sights she sees and the voices she hears. To this point however her recovery has not permitted her to react, or initiate a communication with the reliability necessary to let us know what she wants to express.

Each weekend I read Ashley the comments she has received from her blog site. Ashley’s eyes light up and her smile expands with the reading of each person’s words of encouragement to her. It appears she is impressed that her dad figured out how to create a Blog. I’m sure she felt that was quite an accomplishment for a guy that spent about an hour just trying to figure out how to open the web browser on her Apple Mac notebook.

She continues to progress with her swallowing. While it is in minute quantities she has even tasted and swallowed pudding. We joke with Ashley that her favorite therapist is her speech therapist since she brings tasty foods (thickened cranberry and orange and now pudding). They have started Ashley out on thickened verses straight liquids to make sure she does not aspirate anything she swallows. We are confident that she is doing fine in that regard because we rarely have to suction her mouth so she is swallowing her saliva without a problem. To make sure there is a plan to actually to an X-ray film of Ashley’s throat while she is swallowing liquid. That will show if anything is getting into her trachea. To date, following countless chest X-rays, Ashley has never had an X-ray that showed fluid in her lungs.

We brought Ashley a white board and several dry erase markers. Ashley’s left arm is currently her most active (she is right handed, but that arm is not as mobile at this stage) so she we are giving her markers and letting her go at it. It is another method of stimulation for her. Before leaving Gregg Markley, upon hearing I was taking dry erases pens to Ashley, gave me his lucky green dry marker. This was the marker he used to script basketball plays during his tenure as the 7th grade coach at St. Vincent’s. Perhaps that pen was the reason for all those CYO championships. When I told Ashley that she posed for a quick photo, green pen in hand, that I messaged back to Gregg.

Please focus you prayers for Ashley to have a breakthrough in communication. Our present goal is for Ashley to have the ability to convey what she is thinking and feeling so we can start doing what Ashley wants rather than just guessing.

October 8th

2007-10-08T10:58:00.000-04:00

Ashley is spending more time out of bed and in her wheel chair. While that might not sound significant it is. When you spend most of your time laying down it can be painful to sit up for extended periods. While each day is different with regard to what Ashley can tolerate the result is a net gain over time.

Who would have guessed that we would still be having 80+ degree days with abundant sunshine with which Ashley can be outside watching sailboats on Lake Michigan.

Ashley is moving her legs now more than ever so that will help slow muscle loss. Her right arm has been more rigid lately while her left arm is quite limber. Early on it was the opposite for Ashley’s arms.

While the technology folks have not yet narrowed down a device with which Ashley can make consistent responses there was one suggestion that is showing some promise. One of the therapist suggested using a deck of playing cards. Hold up two different cards and ask Ashley to touch an identified card. It was not flawless, but the vast majority of the time Ashley would grab the right card. At this point in her recovery a major issue is the rigidity she encounters when moving. At times she is unable to move her arm and hand directly to the card, but eventually she gets it where she wants it. At other times she is able to reach directly to a desired spot grab on to it and pull it toward her.

One thing that came out of the card exercise was some black jack playing. Ashley did quite well. She would raise her hand for a hit, or hold still or slide her hand along the table to stay. We played several times over the weekend and she thoroughly enjoyed it; smiling broadly when risky hit delivered her a winning hand.

We are reaching a critical point in Ashley’s rehabilitation. The therapists set up goals for Ashley and have been aggressive. We all have been hoping for quick progress, but that has not been the case. While Ashley is scheduled to be in Chicago until mid-November they are evaluating her progress weekly to determine if this is the best course of action for her at this time. That is not to say that Ashley will not continue therapy. She most certainly will. What we need to determine is whether she can come home and continue it on an outpatient basis, or if she will need to be inpatient at a facility in Fort Wayne for a time.

Please pray that Ashley is able to make significant progress in therapy. We know she is working hard. She is confronting battles none of us can fathom; brain signals that do not consistently travel properly which controls both logic and motor function. She experiences pain which may be physical or neurological but she cannot tell us. Your prayers have brought both Ashley and the rest of our family this far and we are ever grateful. We thank you for the prayers you continue to offer up on our behalf.

October 1st

2007-10-01T09:46:00.001-04:00

The first communication tool the technology people attempted Friday was a three button buzzer with which Ashley could choose a desired activity. Her choices were 1) Magazine, 2) Internet, 3) Music. The magazine option was winning out each time so it does not appear that Ashley is ready for that device yet. They will go at it again this week.

We still need to work on consistency, but often times Ashley will respond to yes/no answers by raising an arm. The important thing for the questioner is to remember to pause after asking the question. Even restating the question can cause confusion as each input Ashley receives has to be processed and then Ashley has turn that request into an action. When Ashley is relaxed and the questions come at a consistent pace she does respond accurately.

We have been blessed with warm and sunny weather in Chicago. Ashley can get outside and with the lake just at the end of the block and a small city park a block away she can get a wide variety of views. On Sunday morning Ashley awoke in time to watch the sun rise over Lake Michigan. It was beautiful and Ashley was bright-eyed and smiling. It was an awesome view.

Ashley had several visitors this weekend and certainly enjoyed it.

We look forward to Ashley having more success in each therapy sessions this week. On Saturday she was able to sit up and maintain her balance without assistance for more than 30 seconds. That was a first. She is swallowing consistently now (she has to be thinking, come on folks enough with the cold spoon, bring on the frozen yogurt!).

The hardest part of Ashley’s recovery is when she seems in pain and it is not apparent what is causing it. We don’t know if it is a muscle cramp, a feeling of sadness, or just a neurological issue. Thankfully most of the episodes are short. When she has a bout just before therapy, or during a session it has a negative impact as you can imagine. Please pray that Ashley is pain free and in her best spirits for each therapy session this week.

September 27th

2007-09-27T19:11:00.000-04:00

Ashley seems to be getting along well with her therapists. Today with speech her swallowing was very consistent. I am sure Ashley can’t wait to graduate from juice to something a bit more substantial.

Tomorrow Ashley is going to go to the ‘technology floor’. The goal there is to come up with a means or device with which Ashley will be able to consistently communicate a yes/no response. We know having a means of communicating will be a huge positive impact on Ashley and will provide her more confidence. Please pray that they have success tomorrow in developing a means of accomplishing that.

As Ashley achieves more motor skill response she also encounters issues with muscle spasms and cramps. It becomes a balancing act for her medication (over medicate and she would be to lethargic, under medicate and she might experience pain that slows her down) but over the last couple of days she seems to be more comfortable. Hopefully that will remain the case.

Ashley has received several cards and gifts for her birthday so on her behalf let me say thank you! When I go up on the weekends I fire up Ashley’s notebook Mac and read her the comments that are posted on her blog. She really enjoys that, so if you have something you would like to share with Ashley I encourage you to jot it down and you can be assured Ashley will hear it.

September 25th-Happy Birthday Ashley

2007-09-25T12:17:00.000-04:00

Ashley started out her birthday with a smile. She had a good night’s sleep and was ready to go. Perhaps it was because she knew two of her aunts were coming today bearing gifts.

The Physiatrist (fizzy-at-trist) spoke with Mary this morning and said Ashley’s stay would likely be for 2 months. That is a couple of weeks longer than the case worker anticipated. The doctor was optimistic about Ashley’s recovery. She has a lot of hard work ahead of her and there will be both physical and mental hurdles, but Ashley still has a fighter’s attitude.

Ashley’s trachea tube has been completely removed. She could always breathe on her own; it was just placed as a precaution early on in case there was a need for emergency surgery. There is no need for stitches. Both the trachea and her skin will heal on its own. There is just a bandage there now.

Thank you for your prayers and happy birthday wishes.

September 24th

2007-09-24T09:40:00.001-04:00

Tomorrow is Ashley’s birthday, but today is also a big day. The therapy team will meet with Ashley’s attending physiatrist (pronounced-‘fizzy at trist’) (physical medicine and rehabilitation doctor) and then they will present their goals for Ashley’s treatments.

Our case worker said that someone with de-myelination, such as Ashley’s will typically stay with them for 5-6 weeks. The typical stay for an individual with a blunt force trauma incident is 4 weeks. They will be forecasting today whether or not Ashley will be able to continue her rehabilitation at home on an out-patient basis, or if for physical reasons, she will have to continue therapy in a skill nursing environment in Fort Wayne for some time yet.

The therapy is aggressive here and is scheduled six days a week. Even yesterday on Sunday a physical therapist came by and did a ½ hour session with Ashley. They are laying the foundation for Ashley’s continued rehabilitation. We don’t know yet what to expect, but their reputation as the best rehabilitation hospital in America for the last 17 years is reassuring. Even after Ashley leaves we will be able to consult with them on Ashley’s continued rehab and rely on their guidance.

Ashley went shopping on Michigan Avenue yesterday! We knew she wanted a carrying case for her Apple Mac notebook computer so we went to the Apple store and got one. Needless to say Ashley enjoyed the outing. At just over 1.5 hours this was by far the longest Ashley has spent out doors since being afflicted. It did wear her out, but back at her room she could unwind looking out her window at motor boats, sail boats and yachts as they plied the waters of Lake Michigan.

Thank you for keeping Ashley in your prayers. It is not easy to have our family separated, but we feel all that loving support and it continues to reinforce our faith and hope.

September 20th

2007-09-20T13:34:00.000-04:00

Ashley has met with all of her therapists and they have completed their evaluations. Ashley will have therapy in four categories: 1) Physical- restoring movement and rebuilding strength. 2) Occupational- Focusing on specific skills as her physical and mental states improve. 3) Speech- this is a subset of occupational since it is such an important and intricate sense. 4) Psychological- Addressing the emotional issues that are present while dealing with the stress of acute rehabilitation.

Active therapy actually began yesterday for physical and speech. Between the therapists at Select plus Mary and I we have been able to keep Ashley limber. Now they will build on that and as Ashley increases her participation, add more treatments that involve muscle restoration. In speech it started with testing Ashley’s swallow status. For the first time in nearly three months Ashley allowed someone to place something in her mouth without biting down. That alone was remarkable. In this case it was a cold metal spoon. The therapist placed it on Ashley’s tongue. This has a tendency to encourage a swallow. Ashley did not swallow yesterday, but she did today! Actual ‘speech’ therapy will certainly take longer than that. The therapist explained that Ashley has not used any of the muscles in her throat or month to form words in such a long time that it is not possible for her to speak without rebuilding those muscles let alone having the right signals reaching the right targets in her brain. Ashley makes vocal sounds so it is just a matter of time.

Ashley’s birthday is Tuesday (25th). If you want to send Ashley a card you can mail it to:

Ashley Harrington 10th Floor
Rehabilitation Institute of Chicago
345 E. Superior St.
Chicago, IL 60611

September 18th

2007-09-18T12:07:00.000-04:00

We are in Chicago! The first impressions are all very positive from the staff to the facilities and the unobstructed view of Lake Michigan from Ashley’s room is also quite pleasant.

We arrived yesterday in the early afternoon (the traffic was not bad and Ashley handled the ride well). We met with Ashley’s Physiatrists (Physical Medicine and Rehabilitation doctor), both attending physician and chief resident physician shortly after arriving. They had reviewed Ashley’s medical records and after an examination and a Q & A with us they put together Ashley’s evaluation schedules for the rehabilitation therapists; which are occurring today.

That will form the basis for developing the strategies and tactics that will be implemented in all aspects of rehabilitation to achieve Ashley’s goal of complete recovery.

We have already had an opportunity to meet other people with family members here and a nurse who, prior to having a brain injury himself, was going to be an engineer. Their encouraging stories coupled with what we have researched and heard about Rehabilitation Institute of Chicago (RIC) have us convinced that this is the best facility for Ashley. We also are confident that Ashley is ready for the acute (active participation) therapy she will receive here.

Thank you…
Ashley is here because of your prayers. They continue to be answered and Ashley continues to progress because of your appeals for her full recovery. We humbly ask for you to continue praying for Ashley’s ongoing success in therapy. It will take time and it will be difficult, but we know Ashley is up to the task and with your prayers supporting her she will triumph over the obstacles.

If you want to send a card to Ashley you can send it to the following address:
Rehabilitation Institute of Chicago
Ashley Harrington 10th Floor
345 E. Superior St.
Chicago, IL 60611