Jake continues to excel with the help and dedication of Jake’s behavioral therapist, Linda. Jake can feed himself Cheetos now. His hand-to-eye coordination still needs work and the Cheeto will fall onto the table occasionally. Jake has figured out that simply grabbing it off the table with his mouth is an easy way out. It’s an easy way out for him but it also shows great problem solving too.

Jake is able to form the word Momma now. He babbles a lot and the word comes out often. Now we are focused in teaching him what that word means and the help he could have if he figures it out. (As if he doesn’t already have all of the control in the house anyway.) We are working on teaching Jake to use a clicking device to get our attention with hopes for him to learn to communicate his needs.

In case we haven’t made it clear, Jake is our everything. It’s become our quest for him to live with a high quality of life and we strive everyday to make sure that’s what happens. Some days, the pressure gets overwhelming and we need to stop, take a breath and remember what our focus really is. We decided to get tattoos to not only represent Jake, but to help keep our focus when times get tough.

We are very excited to host his first ever Birthday fundraiser. We are having a traditional birthday party with a Bounce House, Pizza and Cake but are encouraging guests to give non-traditional gifts. In lieu of toys that a typical 6 year old would appreciate, we are asking that our guests donate to CureCMD.org. Many of you may be familiar with Cure CMD but for those of you who are not, it’s the only non-profit organization in the World that is solely dedicated to finding a treatment or cure for Congenital Muscular Dystrophy. Jake has plenty of toys and we feel that the best gift anyone could give would be the gift of a cure.

Jake has been very healthy this past year. As we reflect on the last eleven months, we realize that we are very lucky and extremely thankful for his health and happiness. We are also thankful to have each and every one of you in our lives. We hope that everyone had a wonderful Thanksgiving and sincere wishes for the holiday season!