Babies with iPads: I demonstrates iCommunicate to make choices

Babies with iPads: I demonstrates iCommunicate to make choices

I've lost my camera . . .

and that panics me! I take at least 5 pictures a day of my kids so to go a week without it has been hard. I need to find it before all the big holiday stuff starts!! Plus I need it because I'm an aunt again today!!!

We are back on the HgH - We are very thankful!!

So the day before Thanksgiving we were cleared to give Isaac his shots again - same dose for now (.4 mg) and luckily we had some left so we could start right away. It was weird for us getting back in the groove of the shots - especially now that he has a lot more leg to give it in. But we had a lot to be thankful for on thanksgiving this year!!

Yesterday the boy woke up at around 8 am and then was awake the ENTIRE day until 9:30 pm. I don't have any idea how/why he did it but he was wild. It was amazing to see - and not really grouchy or anything. He had 3 therapy appointments during the day and I thought surely he'd nap afterwards - but he just got into other things and finally passed out. I'm not attributing it to the shot or any other supplement - in fact we didn't give him B12 yesterday for the first time in a long time. I guess he just wanted to play. :)

Does the "Gathered View" depress anyone else?

Mind you I'm a positive person - but I can't hardly bring myself to read that thing. The Gathered View is a newsletter put out by the PWSA- USA. Its bleak. Its "inspiring" stories are not inspiring. It just reinforces the sadness I felt when our baby was diagnosed and reminds those of us presently in the blissful hyperphagia free land of the food stealing horror to come.

A good chunk of it focuses on the money and who fundraises which I guess is a positive thing - but the other stuff in there is mostly, well bleak. I think in the early stages of diagnosis it was very helpful with the information it provided - but now I think I'm better off not reading that each month.

My Happy Little Kitchen Band

This is my silly crew entertaining each other while I cook. Lucy is in Isaac's clothes because earlier in the day we were out and about and she had a poo explosion and I had only packed an extra outfit for Isaac (He is usually the messy one). They are really fun to hang out with these days. :)

Clint Hurdle is coming to Pittsburgh

So the Pittsburgh Pirates hired Clint Hurdle as their new manager. Who is Clint Hurdle you may ask? Well his daughter has PWS and he's a huge advocate for our cause!!! I guess he was impressed with Pittsburgh's Children's Hospital so it makes me want to check it out. Its just as close as Columbus really. We are lucky to be central to so many choices I guess. Yeah lucky we don't have a children's hospital in our own state - how messed up is that. Go Pirates!

http://www.usatoday.com/sports/baseball/nl/rockies/2005-09-12-hurdle-family-cover_x.htm

Sleep study on sunday - hoping to get back on the Hgh

Isaac hasn't been on growth hormone since July 21st. :( But now the titanium infused, tonsil and adenoid-less Isaac may get to go back on as early as next week!! He's already wild - we can only imagine what it will be like to get back on the good stuff. We have high hopes all will go well on Sunday night with his sleep study - so keep us in your prayers! You have no idea how much this stuff means to PW kids!!!