Max Update

Hi all! Well, we just had our meeting with the Endocronologist this morning and all of Max's tests and his sleep study results came back great, so we are medically approved for GH...(Growth Hormone). For those of you who don't know, Max's condition has given him very low muscle tone, just ONE of the reasons he is so far behind physically. Growth Hormone is not just for "growing", but will help Max with his Lean muscle mass and hopefully make him stronger and help his metabolism as well to push things through his body better. With the good, comes the potential bad (side effects), which we won't mention, since I believe if you don't put it into the Universe, maybe it won't happen to him! We are very nervous to start Max on potentially a life long drug, and hopeful it will only bring him positive things and that it gives him all the benefits it is supposed to give him! We should be starting it in the next few weeks, once we sort through insurance and the medical group comes out to show us how to administer it...yes, we have to give him shots ourselves every day, yikes for us!! :) Boy, we have done more medical things in our home in these last two years that I thought I would ever do in my life time, but realize we are much stronger in the stomach than we thought! LOL - Please put positive thoughts out for our Maxie pie that this only makes his life easier and better :)

Vacation!

It's been a while since I blogged, but we were enjoying an amazing vacation in St. Maarten! Max was a trooper and had a blast as we all did. Food was hard with his special caloric diet. Being out of the country has it's challenges and not being in your own house to prepare things. The grocery stores just don't carry what we have here. But, starting your child on a healthy diet so early turned out to be a blessing! We could go out for a nice meal and I could order Max Red Snapper with steamed veggies and just a small amount of pasta and we would eat it all up! People always thought I was crazy not ordering my child chicken nuggets and french fries for every meal! Max also really started to move more on our trip. His Physical therapist said a change of scenery sometimes really help to motivate them to explore new things. Max is crawling a ton more, was nuts crawling around the pool and kept heading for the bar! - Just like his Daddy! LOL - He even started to pull to stand. Now he can stand holding onto things and try to move around while holding on to surfaces. Go Max Go! My goal is he will be walking by his second birthday. I just know you can do it Max!