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.
Monday, July 21, 2008
Tuesday, July 15, 2008
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.
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.
Monday, July 7, 2008
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.
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.
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