Although Jake wasn’t in any form of traditional therapy in the month of May, he’s created his own way of therapy in the pool. He’ll kick and splash in the pool for hours. He’s now able to keep himself afloat with only Floaties on for a short period of time. He loves the feeling of freedom when we let him swim by himself.

We always have to be on guard for what could happen next. Jake was caught standing up in his bed for the first time ever. We aren’t concerned with the standing, it’s falling that concerns us. Each advancement brings a new challenge or concern, it's bittersweet! (and worth every bit!)

At 6 years and 5 months old, he lost his first tooth. We think he may have swallowed it, but if so, thankfully he didn’t choke on it. Since he has mastered opening doors, we have to look around the house for him like it’s a game of hide and seek. It feels great to report that our worries this month are those that we share with typical parents who raise typical kids!

We feel that his head-banging has subsided a bit but he does still do it daily. He’s started Hyperbaric Oxygen Therapy again and our hopes are that he will learn to communicate better which would greatly reduce the self-injuring.

The entire Cure CMD team crossed the finish line successfully in the New Jersey marathon. It was a wonderful experience to be part of a team working together to fight for one purpose, finding a cure for people with Congential Muscular Dystrophy. Everyone’s support was overwhelming and very much appreciated.

As always, we couldn't do it without your support. Just knowing that you look forward to reading his newsletter is the fuel that enables to keep going!