Wednesday, April 22, 2009

9 month Pedi Appt

So our little man weighs 15 lbs 4 oz. Not on the charts yet, but we are still moving up. We haven't lost any weight yet, so that's a good thing. Since the GH started he has done so well. He is moving around so much and getting stronger. It is AMAZING.

He is starting to kissy face us all the time. Like he's kissing at us. I'll have to record it to share. Its about the cutest thing I've ever seen. :) Oh and he loves loves loves bubbles. Its starting to get really fun!

Wednesday, April 8, 2009

Helpful Support Websites and Blogs

I am constantly searching the internet for other stories of children with PWS out there. I love following Hope's story as told by her mom who is an amazing advocate for her Hope and for PWS in general.

I just found this site. I really like the stories page. The info is very helpful and I wish I would have seen this when we first got our diagnosis.

Wednesday, April 1, 2009

EEK - the feeding tube came out!

Ever since it was put in my husband and I have lived in FEAR that Isaac would pull out his mic-key button- even going to the ER last Thanksgiving because we thought it was out (it wasn't) - Isaac's tube finally came out.
I was trying to do an exercise on a ball that the PT showed me and his gauze on his tube got caught and pulled it out. He didn't even pull it out, the good little boy. It was my fault. Surprisingly he was grinning because I was trying to get him to bear weight on his feet & my husband and I were all up in his face. My husband said he thought he was peeing, but nope a bunch of milk was going everywhere.
It was not as bad as I thought it was going to be to put it back in. I had seen the doctor do it many times before, but I just thought we wouldn't be able to do it right on our own. I ran around and found the syringe, which I had buried in a bag in my bedroom closet (yeah I know it doesn't make a lot of sense) and held his hands while my husband calmly put it back in. Isaac didn't seem to mind one bit. Craziness. What an interesting life we lead :)