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)!