Tuesday, November 30, 2010

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. :)

Monday, November 29, 2010

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.

Monday, November 22, 2010

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. :)

video

Tuesday, November 16, 2010

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

Friday, November 12, 2010

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!!!

Monday, November 8, 2010

Love is all around :)

We took the kids to see Veggie Tales last week, which Isaac enjoyed, until Maddy (the most adorable 2 year old blonde cutie from Sunday School) sat next to us. First thing she did upon sitting next to us was to lean over and kiss Isaac straight on the lips. Then it was Maddy Tales for Isaac as all he wanted to do was sit next to her, hug her, smooch her, and play with her hair. I was embarrassed, but it was cute, so I didn't really know what to do. The boy is a lover I swear. He loves the love. Most kids aren't into his affection, but Maddy sure didn't mind a hug now and again. They were two little buddies and I loved it. My guy made a friend. :)

Wednesday, November 3, 2010

Focusing on some sign language

So this week I bought pretty much everything Amazon had to offer which was Toddler/Baby sign language related. Isaac is doing great signing these days and what is surprising to me is that the words he signs the most are the ones he is starting to verbalize. More is signed and now accompanied by "mo mo" and please even has some verbal thing to it (which you can't really understand as please but he's signing please, so I am pleased :)

So if we actually got more words signed then we might be able to use them more and more and he'll eventually process them upstairs and be able to say them. We've kind of been lazy on new words lately, so unless we are in a zoo his words are limited. :)

The boy also keeps running a fever - no ear infection to be found - they gave us some antibiotics today so we are hoping that stops very soon!!!