This has been an exciting month. Ashley has done exceptionally well with liquids this month. She is now drinking 8 ounces of milk or juice at each meal. In addition to that there have been several days that she has had drinks in between meals. Just yesterday Ashley drank a 16 ounce shake. Thankfully what is becoming more rare is for the liquid to go down wrong and cause Ashley to choke.
Our next step will be to start giving Ashley skim milk as we move to thinner liquids. Once we see she is able to consistently drink water without an issue her feeding tube will be history.
Austin was home two weeks ago for spring break from Indiana University. While we all enjoyed having him home for a visit it was obvious that Ashley was delighted to spend as much time with him as she could. Austin is doing quite well at school and Ashley is quite proud of her little brother.
Ashley’s long time swim pal Rachel visited her at therapy during break. Rachel is studying to be a therapist.
We have great news to share on the communication front as well. First, when Ashley wants to communicate something we either have her spell it on her PC (with her button she can pull up a visual QWERTY keyboard and select letters as the PC goes through them sequentially). If the PC is not at hand we go through the alphabet orally. As you can imagine this takes a bit of time. We finally noticed that Ashley was often moving her lips and tongue when we would ask if she wanted to spell. We put two and two together and realized that Ashley was showing us the letters she wanted.
Last week Ashley ‘mouthed’ B-A-B-Y B-E-N. I guessed the letters without going through the alphabet and learned that my nephew Ben and his wife Beth were expecting their first child. Congratulations Ben & Beth! It was a wonderful way to get the news.
The second advancement with communication is that Ashley is training with an ‘eye-gaze’ computer. As mentioned above Ashley uses a button to select pre-established options on her PC. When she hits the button with her left arm the PC says what the selection is. As such Ashley has to wait for the PC to sequence through the options and then hit the button when it reaches what she wants to express.
Eye-gaze is an attachment to her custom PC. I would compare it to the Wii game console. Anyone that has a Wii knows that there is a signal reception bar that you place next to the TV that displays the games. That signal bar detects the movement of the Wii hand sets and translates that into movement within the game in real time.
The attachment on Ashley’s PC (following a calibration set up) can detect exactly where Ashley is focusing her sight on her PC’s screen. If she holds her sight in one spot for a selected period of time (a fraction of a second) a red dot appears on the spot and acts the same as if the touch sensitive screen where pressed.
Ashley’s eye sight has been affected by ADEM so we were not sure if she could even use this technology. So far it looks promising. Ashley has gone through several tests of the system and while parts are still a challenge it appears that this will work. The result is that Ashley will be able to ‘look’ immediately at a selection rather than wait for the computer to cycle through all the options. As the icons get smaller and more are added to the screen it starts to overwhelm Ashley’s ability to process, but that was to be expected. We are confident that with time she will be able to work her way to having more and more options on a single page. The good news is that we can customize the icons to the size that works. So at first she may only have a handful of icons at a time. Yet as her brain adapts we will be able to reduce the size of those icons and get more on a single screen.
Ashley’s accomplishment in other areas gives us the confidence that she will successfully adapt to the eye-gaze. As with those other accomplishments it is a combination of Ashley’s hard work, positive attitude and all of your pray support. Thank you!
This last weekend we had the pleasure of meeting Al. Al was struck with ADEM shortly after earning a degree in Chemical Engineering at Michigan. He had just started a job. That unwelcome event in his life turned into an epiphany. Al will graduate from medical school at Ohio State next month. This fall he begins his residency in neurology in Detroit.
Accompanying Al were Sandy and Pauline whom appear in pictures throughout this blog. Pauline contracted Transverse Myelitis over 10 years ago. The two of them spearheaded the creation of the Transverse Myelitis Association (myelitis.org). Because of their efforts we were able to find the experts that helped with Ashley’s diagnosis and treatment. That also put us in contact with other families facing rehabilitation and lead to our attending a symposium on these related diseases and our two trips to Victory Junction Gang Camp in North Carolina.
As we were swapping cameras and taking shots I failed to get Sandy, Pauline and Al in the same photo.
From right to left, Mary, Ashley, Pauline and Al. Kazu is catching a nap at their feet.
Here are Sandy, Mary, Ashley, Jeff and Al.
We visited for about five hours, but it felt like a lot less. Al still feels the affects of ADEM. It is nothing short of miraculous that he was able to successfully complete medical school. In turn we realize that Ashley shares those priceless traits of motivation that Al has. His perseverance provides all of us with the confidence we need to see Ashley reach her full potential. We are blessed to know Al and we look forward to talking with him in the future.
We will be keeping you in our prayers Al. Ashley’s legions of supporters will be praying for you as well.
Al is hoping to attend the next young adults’ weekend this October at Victory Junction. We are looking forward to hearing how he has settled into his residency at that point. Sandy and Pauline will be there as well. The young adults’ weekend was the first Victory Junction event we attended in October 2008. Ashley is looking forward to seeing many of the participants she met at the first camp.
What a wonderful start to spring. Each of you reading this blog has played in instrumental role in Ashley’s achievements. We have had the honor of meeting many of you, and you have personally encouraged us. Many more are cheering Ashley on and we appreciate each and every one of you. God Bless You!
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