November 6th

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

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

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

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

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

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

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

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.