Christmas Eve

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!