Wednesday, October 28, 2009

Wow - we are tube free!

I didn't anticipate that yesterday the surgeon would take the tube out at our appointment. I didn't expect it to be that easy of a process - it never seems simple when it comes to Isaac. But wow - it was simple and now its supposed to heal on its own. If I'd known that all I had to do was pop out the tube and seriously leave the flipping tube out - I would have done it a month ago in the comfort of my own home. :) But wow - its out - and although he's leaking like a sieve with every bite we feed the poor fellow - it will heal. She told us that the inside will heal sooner - and the outside should be completely healed by 3 months. So Johnson & Johnson has their last hoorah at my house. Unless we go through the 50 pounds of gauze I bought last night over the upcoming weekend. :) Which after last night seems very possible.

Monday, October 26, 2009

More Fall Pictures of my Cutie

He wasn't a big fan of the hay for the longest time (as obvious in the first pic) - Just kept looking grossed out by its stringiness. :) He stood holding that crate for a little while before he fell on his bum and laughed. He was adorable - but it was a 70 degree day and I swear I burned him up putting him in the sweater and jeans for a mall trip. Poor boy.

Tuesday, October 20, 2009

Appt. with surgeon scheduled

We have an appointment scheduled with Dr. Torres to discuss taking Isaac's tube out. I am hoping that she doesn't try to fight us on it - we are so excited to have it taken out. It has been coming out so much in the last few weeks. It kind of defeats the purpose when he loses so much of what he has eaten when the blasted thing comes out! Anyways, we truly hope that it goes well & that the surgery will be quick and painless. As if anything in life is quick and painless.

Isaac is jabbering away these days. And trying to walk - he's really showing the desire to it seems. My parents bought him a little Pooh walker and he is so adorable in it trying to figure it out. He is 15 months old and we bet that tomorrow he'll weigh 20 lbs. Oh wow - to move into the forward facing seat - it will be a whole new world for this boy!!!

Monday, October 5, 2009

My little pumpkin

We took Isaac to the Pumpkin Festival this weekend and he got to play in the pumpkins with his buddy Addy. He really liked seeing all of the little kids and being outside. I hope the weather stays like this!!!

Friday, October 2, 2009

Prader Willi Website - Such a cute little guy

I always like to post sites of families out there going through similar situations & here is one with an adorable little guy with PWS.

Hope or Denial

On a special needs message board I frequent a mom there posted about how she thinks she lives in denial that her babies are delayed - like deep down she thinks they are going to live normal lives. It really made me think.

I live in this state of denial I guess because I honestly believe that Isaac's life will become our own sort of normal. All the hell we've been through so far, really hasn't been so bad I guess. We still have him and he's still such a sweetie. So he may not ever live independently or get married or have kids - all things that just seemed like nightmares to me at one point in time - but now I've just kind of got this attitude, like you never know. I don't know that in 20 years time they won't have a cure for the hyperphagia. I don't know that they won't have some magic pill or shot that will make it all better. I don't know how limited he will be mentally or physically for that matter - all I know right now is that he is delayed. But delayed doesn't mean it won't ever happen. So I guess I could say I live in constant denial, because I truly hope it will turn out ok. I like living in my blind little happy place, because seriously, sitting around in reality all the time would just be miserable!

I pray for a cure for his condition, just as a pray for a cure for all conditions that affect so many precious little ones out there.