Noah's Miracle : Text-To-Donate Day

Tuesday, April 23, 2013

Text-To-Donate Day

Last week we went to Children's Hospital, Colorado for a car seat evaluation for Noah. We wanted to make sure that we knew what model was the right fit for Noah before we pursued finding funding for a specific product. Upon arriving we was surprised to learn that I was actually recruited as a guest speaker as a special needs parent to speak to various car seat products, what I liked, what I didn't, and some of the car seat challenges the special needs community faces. It was an Automotive Safety Program put on by Riley Hospital for Children, Indiana University School of Medicine. There were equipment makers, doctors and therapists present. We sat Noah in several models, some of which I had never heard of before, like the Roosevelt, who's maker was present and in the room. I was very impressed that the Roosevelt has the potential to be customized to each child. It's very rare when you find a product line that customizes. Most offer one standard model, which isn't a great benefit to all children with special needs. Each child will likely need various different features depending on their tone, head control, trunk control, recline needs, and sensory challenges.

Ultimately due to Noah's size, weight and personal characteristics and needs we decided to try the Recaro Sport. We will be trialing it for about two weeks, and then deciding if we need to trial another or if this is the right car seat for Noah. I gained a lot of knowledge today about accessories, features and special needs car seat models. And received a lovely thank you card for my surprise appearance "Thank you so much for agreeing to participate in our class. You are truly an invaluable part to help others learn about safety transporting children with special needs. Staff at the National Riley Hospital, Indianapolis." Even though I was surprised about being a guest speaker and wasn't really prepared, I left feeling like somehow maybe my participation opened the door to some really positive learning about children with special needs and the products we need. I feel more purpose in the special needs journey if I in someway feel like Noah's story is making a difference in the lives of others.

Noah also got to try the Dynavox communication eye-gaze device this week. It's only a two week trial, which means he only gets to try it two times this week and next week before it goes back for a period of 45 minutes. Which to me isn't enough time to really tell if a product is going to be the right match. We also want to explore a trial with the Tobii Communication eye gaze and proximity switch, but his therapist reports that it will cost $400 monthly to trial each device. There's simply no way, and I'm hoping to advocate a way around that. And I have to know which device is the right match for Noah, as I only have one shot at asking Medicaid to fund it. And who knows if they'd approve the request, or deny it based on the price. I don't know. I suppose I'll cross that bridge when we get there. Noah was able to track a ball using the Dynavox briefly, Monday. So that's great, but I still think he's also capable of a proximity switch, he's gaining a bit more control over his arms.

Circumstances for us have grown more difficult and we are struggling to pay for Noah's out-of-pocket therapy and equipment needs. We applied for Wish Upon a Hero to attempt to locate help for Noah and they have given him a text-do-donate day. April 24th, 2013 if you text "WISH" to 80077, you'll be donating $5 to Noah's Miracle. I don't expect it to be a huge success, but we have to try. Please consider donating $5 by way of text for Noah on April 24th (tomorrow).

Our friends at 501st Legion - Mountain Garrison also stepped in again to help Noah this year, after hearing about some of our current struggles. We were invited to dinner, and met Deep Roy, the actor who played the Oompa-Loompa in Charlie and the Chocolate Factory, he also played in many movies including The Neverending Story, the Star Wars series, The Corpse Bride, Big Fish, the Pink Panther and many more. He was so kind, loving and full of great humor. It was truly a privilege to meet him. And it made for a wonderful evening. It's been a difficult year, and the love we felt means so much to us.

Noah & Deep Roy

We took Samson, Noah's service dog in training (SDIT), to Starfest to meet his 501st friends, and he did great. There were a lot of people in costume loaded with distractions and he did great. Samson was such the star that he even had his picture taken with the Gi-Joe Team! He's on lesson three and we hope to move onto lesson four soon, he's learned so much and has a total of 10 lessons before he leaves home for extensive skill training and certification/licensing.