Merry Christmas!

So since I posted the gross stomach picture I thought I would brighten up the page with some cuteness from Christmas. :)

Surgery went well . . .

So amazingly enough they got us in quickly at Children's Hospital for surgery on December 23rd to close up Isaac's g-tube site that wasn't healing. The surgery went well and the very next morning we could feed the little man in his high chair. It was AMAZING. After leaking like a sieve for over 2 months the boy could finally keep some food in! He weighed 18 lbs and 7 ozs the day of the surgery. Hopefully we can get the little man to gain some weight so we can get back on track! He already seems to have so much more energy because he is keeping his food in. He really enjoyed Christmas & has been so fun these past few days. Such a silly little boy. Of course he did bite a girl at church, but she didn't seem to mind all that much. :)

Here's a shot of his tummy - its going to be a little U shaped scar & a lot smaller than we thought. Its hard to tell much, but you can at least get an idea of the size.

Visit at Children's - eh not so great

Well since we had the g-tube removed the last week of October (heck since our 9/25 visit to Children's) my little guy hasn't gained an ounce. Its been a pretty crappy time I have to say. He's had a cold & a virus and worst of all - the g-tube is not healing. He leaks out most of what food we put in. Poor little man. So now we have to get surgery to sew up the stomach and fix the site that's not healing. We are hoping we can get it as soon as possible. I'm 35 weeks pregnant at this point and it really would be great if we could get it in the next few weeks. I just feel so bad that he has been suffering with this for 8 weeks now. 8 weeks!!! I swear it was nice to hear the surgeons just say - lets fix it now - you don't have to wait until January like the surgeon down here said. (who sucks by the way) Keep my little guy in your thoughts that he'll heal like nobody's business & start feeling his old self again!!!

A couple of monkeys getting ready to Trick or Treat

Here is a picture of Isaac and his cousin Georgia posing before going out trick or treating with Grandma and Grandpa. Too bad some neighbor had the bright idea to dress up as the abominable snowman because Georgia may never go trick or treating ever again. The rest of the night all she could talk about was the scary monster she saw. Isaac didn't seem to care too much. I guess he thought it was a big stuffed animal or something.

Tube is slowly healing . . .

So we are two weeks and three days since the tube was taken out and we still wrap the child in gauze like he's just lost a limb. :) Its getting much better though. He doesn't seem to mind it and has been rolling over on his stomach and sleeping on his stomach (which is the major cause of the leaking).
He has a new fondness for chocolate milk thanks to a very spoiling grandpa. Isaac is doing really well right now. He is a silly heart & we are loving every minute with him!!

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.

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.

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!!!

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!!!

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.

http://www.hedstromfamily.org/HedstromFamily/Home.html

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.

Good Appointment

Our appointment went well - Isaac weighed 18lbs 9oz, and was close to 29 inches tall. They told us we could get the g-tube out now - which is kind of bittersweet. We are soooo excited, but honestly we are scared too. We still use it, its our crutch. We sleep soundly at night knowing he gets enough nutrition. Now what will we do when he won't eat? I'd say with PWS we aren't going to have to wait too long before we have to be limiting his food, so we just need to shut up and be thankful. :)
But no, we are so excited to see how well he'll do without it. It seriously gets in the way of his crawling because his sticks out so darn much, so its exciting to see how he'll act without it in the way! Oh and Johnson & Johnson Gauze watch out, you are going to see a severe decrease in sales in the next quarter. :)

EI Annual Review

Wow - its hard to believe my Isaac has been getting a year of EI services. We had the annual review and it was so great to hear how well everyone thought he was doing. I told Eric I figured they tell all moms these things to keep everyone happy - but it is really amazing how far Isaac has come. They think he'll be able to walk much sooner than originally thought. It was first said 2 years, but now they are hoping for in the next 6 months or more. That is GREAT NEWS!!

He is babbling all the time now. He is more quiet when he is around a bunch of people, but when it is just us at home he is a little silly chatterbox of noises. I love it. I secretly videotaped him last week a little bit (normally if he sees that I am recording he starts to grab for the camera).

We have an appointment next Friday at the Children's Hospital with Dr. Hardin - so we'll have to see how he's doing growth wise. We hope they are as impressed as we are. :)

Our little swimmer

Swimming makes a boy very very sleepy

Now I can't stop with the pictures

More of Isaac enjoying the beach

The little man decided to get his first tooth at the beach - little goofball.

He was not a fan of sandals.

The Beach - September 2009

Enjoying the ocean and jumping around to the Backyardigans in his Jumperoo

More Birthday

Isaac's Birthday -07/17/09

Of course - more pictures

Being Cute

The boy loves the Hulk

Sitting with his Squiggle system support behind him

His new red Toucan Stander

A few months in pictures - How's that?

Our pre-haircut picture - ok so the first haircut didn't make all that much difference. :)

Trying out his AFO's (and showing off some awesome leg action)

Being horrified but still mesmerized by Scooby Doo

Testing out his birthday toys the next morning with Daddy

Our pre-birthday cake try out :) He likes it!

Isaac at the Zoo

Driving on Daddy's Lap

Our first attempt at Cheesy Noodles


Driving his new car he got for his birthday from Aunt Debbie and Uncle Danny

Testing out his new tennis shoes and AFO's