August 31st

It seems like it has been nonstop action since we got back from Victory Junction Gang Camp two weeks ago. We have enjoyed sharing our experience with many family and friends. It was such an inspiring experience for all of us.

First things first we want to share some more photos from Victory Junction…

Ashley and our 'crew chief' Barbara taking in a view of the camp

Chris, the first person Ashley has met face to face that also has ADEM along with Mom

Ashley with one of the world's most caring and giving people, Sandy

With Maggie our cabin mate from Alaska

With Pauline and her service dog Kazu

Hello Kazu!

Ashley met two other people at Victory Junction with ADEM. Chris and Kate are the first people Ashley has met in person that can relate first hand to what Ashley is facing. While every case of ADEM is different, since the specific areas of the brain that suffer demyelization correspond to the outward affects of the condition, Ashley was able to relate with both of them and it was a tremendous boost to her already positive attitude.

We had a wonderful opportunity to meet with the doctors that specialize in these myelin related auto-immune conditions. We received both encouragement and guidance from each of them. As Ashley continues to work to get her speech back she will be focused on three sounds, “la-la-la, ma-ma-ma and ga-ga-ga”. Now thing about what was physically unique about each of those sounds. Times up! La-la-la involves the tongue (Ashley does a great job in positioning her tongue for that ‘L’ sound). Ma-ma-ma gets your whole mouth moving and ga-ga-ga gets your throat into the act. We were also told that Ashley maybe able to sing a familiar song before she can talk. I remember that George from Miami recovered his voice this way. He initially could sing, but following the song could not talk. Eventually he got his speech back as well. Poor Ashley having to listen to mom and dad sing off key.


This photo was taken in the hotel we stopped at half way home from Victory Junction. Since we did not have our standing frame Ashley improvised. Notice that Ashley is holding the back of her wheel chair for support. Also notice that there is no one else in the picture. Ashley stood for several minutes before requesting to sit down. All the while we never had to assist her for balance.
No sooner did Ashley get home and several of her friends organized a shopping trip at the mall. Although mom has good taste we know Ashley appreciated having her peers pick out some clothes for her.
Ashley had a visit as well from Kelly on her way back to Notre Dame for the start of her senior year. Of course we will certainly be planning a visit this fall to St. Mary’s and Notre Dame to see Ashley’s classmates and other friends.

Austin started classes today at IU. We all went down last Wednesday to complete his move from the hotel he was staying at with the football team (Austin has a work-study job as a videographer with the team) to his dorm. Ashley was kind enough to loan Austin some of her college supplies and dorm appropriate appliances. We look forward to coming back down for a football game in a couple of weeks.

Since this was a mild summer in Fort Wayne we are hoping for a warm fall so we can continue to get out and enjoy a variety of activities before the cold weather is back.