Thursday, February 26, 2009

Sleep Study - Normal

Yay!!! I am so excited to report that our sleep study was normal & we are on our way to HgH.

Little man is doing well! He saw the PT for the second time last night and despite being grumpy from his RSV shot earlier in the day, he did fairly well.

We talked about ordering a stander to help him with weight bearing. The PT was helpful & gave us a new book to peruse for new exercises to try with him.

Monday, February 16, 2009

His sleep study

Isaac's First Swim

Great Appointment!

We just got back from our appointment at the Prader Willi Clinic with Dr. Hardin & it was very uplifting. She gave us an entire speech about how PW kids can't be compared with PW children of the past. There is so much progress with Human Growth Hormone and we cannot place a limit on what our child can do. It was a great attitude from a physician. Normally they are all so negative!!! The sleep study wasn't all that fun - I'm not sure I'll ever get the glue out of that poor boys hair. We have to go back in 2 months to learn how to give the shots. It was an uplifting appointment for once.

Tuesday, February 10, 2009


Isaac has been doing so well these last couple of weeks it really has me inspired. He is now up to almost 14 lbs and he is getting closer and closer to head control! He seems to do well for longer and longer, until finally he has to give up and flop it to the side.

We have also been working on strengthening his back and trunk with sitting him up and using the exercise peanut ball to bounce on.

We have practiced rolling him over and over which he thinks is hilarious - so hopefully he'll learn to do that on his own one day!!! Right now he just thinks its funny us flipping him every which way. I'm just thrilled to see progress & I can't imagine how great it is going to be when the physical therapy starts!!!

Prader Willi Clinic Appointment

So we have our first appointment with Dr. Hardin this Friday - we are terribly excited. Not too excited about the sleep study the night before, but we'll manage. We get to meet with an endocrinologist (Dr. Hardin), a geneticist, and dietician. I really hope they are positive and can get us on the path to treatment with human growth hormone as soon as possible.