This has to be one of the most exciting newsletters I’ve ever done. There is so much to report, this one may be a little long. First, thanks so much to all of you who voted for Jake’s school. They won the $4,000 grant to build the “Butterfly Garden”! It’s an environment where the kids can learn and also a memorial for their fellow classmates who graduated from life prematurely.
Last month, we were excited to report that Jake was getting up on his hands and knees a lot. This month we’re flabbergasted to report that Jake crawled for the very first time!!! Jake did so good that Mom was able to get a picture of it. He made three movements forward before falling flat on his belly. In therapy, they use dry red beans in a plastic container to win his attention. He loves the feel and the sound of the beans when they fly out of the container. He’s also starting to army crawl, using the beans as incentive for forward motion. His Therapist now jokes that “Jake will work for beans”. As usual, he continues to amaze us and we are so proud of him that it actually brings tears to our eyes when sharing this news with others. The joy of your child starting to crawl against all odds is indescribable.
Jake had his annual assessment at the Pinellas Lighthouse for the Blind this month. We have decided to take on an additional vision therapy. So, now Jake will go to outsourced therapies three days a week after school, in conjunction with therapy four times a week at school. We have noticed his left eye turning in more and have been fighting hard to save the vision in that eye. To combat the loss of use of that eye, he needs to wear a patch on the right eye two to four hours per day. This process forces him to use his weak eye and hopefully strengthen it. We know it may seem that Jake is always working but the truth is, he loves therapy. He’s having a great time and getting the assistance he needs to be stronger simultaneously.
We have even more great news. As Jake approaches 5 years old, Jake’s Nana bought him his very first wagon. This is a very exciting gift because Jake is finally strong enough to sit up straight for a small period of time. He is even maintaining his balance on rough terrain. After a few days of practice up and down our street, he and Mom ventured off to the beach. Before getting the wagon, a beach trip meant the long and arduous process of carrying Jake and all of the belongings to the car and back in the sand. Now we’ll be hitting the beach a lot more when it’s cool enough and the chiropractor a lot less.
Jake was a Boxer for Halloween this year. That’s what Mom wanted him to be so I had to figure out how to build a boxing ring on his wheelchair. We’ll see how well I did next year when the summer edition of the MDA magazine comes out.
As special need parents, we often feel as if we’re heading down a deserted path. That’s when people make the most incredible gestures. I've played in a pool league for the last 13 years. Every year, the league has a Christmas Tournament to benefit a local family. This year, they chose Jake. Please come join us, you can learn all about Jake’s 1st fundraiser by visiting our Events page. Anybody can play and we’re trying to solicit gifts to be raffled at the event to raise additional funds in hopes of building a therapy room here at home.
We have to take a moment to share some exciting information, the creation of Cure CMD. Finally, there is an organization that is 100% dedicated to curing Congenital Muscular Dystrophy. Curing CMD is their sole mission. Please join us in our quest for a cure. This organization will prove to be the most important initiative of our lives.
As always, we can't thank you enough for your support!
