Jake is doing very well and continues to pull himself into the standing position. He's done this about 2 dozen times. We decided it was time to stop counting the number of times and instead start working on the duration of the time he stands now that he’s able to. While we know the importance of setting goals, we are careful to not allow achieved goals to become limits. When Jake reaches a goal we've set for him, we check it off, praise him greatly and then raise the bar. We do this because we believe that he has no limits. Jake continues to work on his crawling daily. He hasn’t made it past 4 movements forward yet but we anticipate he will do so soon. Once he falls, he scoots, then gets back up and his hands and knees and repeats the process. Jake has many disabilities that he deals with everyday but he definitely does not lack any drive or motivation to overcome the obstacles in his life.

In Jake's newsletter of November, 2008, we mentioned the launch of Cure CMD. Cure CMD is the only organization on Planet Earth that is 100% dedicated to curing Congenital Muscular Dystrophy. In August of this year, they are providing the first ever CMD Family Conference. Folks, we've never been in a room with another CMD patient or family. This is an opportunity for us to not only learn about some of the unknowns Jake will face, but also to meet families who truly understand the journey we're on. Cure CMD is funding the conference, but we need you're help. Even a $10 donation by many people will add up. Please considering donating to help our cause!

We had an appointment with his neurologist to review his EEG. As we expected, it was abnormal. Although, he hasn't had a seizure in three years. After carefully considering all of our options with medications, we have made the decision to discontinue the use of an anti-convulsant. We tried to change to a different one last year and Jake had a reaction to it. His current medication prohibits him from sweating and living in Florida, you can imagine the impact on his quality of life. This has not been an easy decision for us. It’s something that we’ve spoken about almost daily for over a year. We often wonder what kind of side effects this drug has that Jake isn’t able to tell us about. For all we know, his head banging may be a response to a side effect. If all goes well, he'll be off the meds by mid June. Please keep us in your thoughts through this as a return of seizures is one of our biggest fears.

On the lighter side of life, Jake went on his first boat ride this month and he LOVED it! The faster we went the bigger his dimples were. Wind in your hair and a bucket on your head always makes for a happy day!

Thanks to all of our new comers who have recently signed up for his newsletter to follow Jake’s journey and thanks to everyone who’s stood by us from day one. Your support is greatly appreciated!