Saturday, July 31, 2010

Thanks Desirae for the Blog Award!!!

Desirae from Our Life with Prader Willi Syndrome in Las Vegas ( - sorry I'm not great with the linking) gave me my first blogger award! So now I'm supposed to share 7 things about myself as part of the rules:
So hmmmmm . . .
1) I actually enjoy watching Yo Gabba Gabba along with Isaac and Lucy.
2) I have more freckles than I know what to do with - and I promise I wear SPF 4 million daily.
3) I have needed to have my wisdom teeth taken out since before Isaac was born in 2008 but I keep putting it off, and no they are not giving me any extra wisdom by hanging around.
4) I love "Arrested Development" and cannot wait for the movie to come out!!!
5) I want an iPad so badly now that one of our therapists is using one with Isaac.
6) I could live off of chips and salsa - I'm sure of it.
7) I have been trying to lose the 40 lbs I put on with Isaac since well forever (except for that pregnant with Lucy period) and I cannot seem to do it and the fact that I can't lose weight without all the PWS issues makes me so panicked about Isaac and his future food issues that I want to stress eat (which my husband said is absolutely silly, so put down the food angie).

Thanks for the award Desirae - I appreciate the nod!!!

So I am going to pass it on to Adventures in Asherland and The Fields Triplets if they would like! They have great blogs that you should definitely check out!!!! Oh and check out Babies with iPads too - Bridget knows she's awesome so she doesn't even need an award :)!!

Friday, July 30, 2010

Babies with iPads: I. signs using the iPad

Babies with iPads: I. signs using the iPad: "My video skills are for the birds so sorry. I is finding animal pictures on the iPad and signing the animals as they made the sounds. He ..."

Thursday, July 29, 2010

And not to leave Miss Lucy out

Isaac doesn't think she's all that funny

Not fair, this one is rotated on my computer I swear

More summer pictures

Here's a few more summer pictures of the boy
Playing with Georgia and Emma the day after Bible School

Having fun with Aunt Debbie (Cowgirl Debbie for the day)

Ask Isaac about the horse and to this day he gets a look of PANIC . . .

The day after his birthday tearing through all of his presents again :)

Friday, July 23, 2010

Frickety frick - we have sleep apnea

Well we have to stop the HgH for a little while so we can go for an ENT consult and see about possibly getting his tonsils/adenoids removed. He has an obstructive apnea. We want what's safest for him - no doubt - but its just sad to go off his wonder drug. :) It makes me think back to life without growth hormone . . . :(

Saturday, July 17, 2010

Happy Birthday to my favorite boy!!!

Happy 2nd Birthday Bubby - we had such a good day with you today!!!! I hope you loved it as much as everyone else did!!! You had so much fun playing with everyone!!! I can't believe we've had you for two whole years already!!! We love you!!!

Tuesday, July 13, 2010

He's Looking Good!

So the boy is 34 inches tall (in the 55th percentile) and 24 lbs (for the first time in his entire 2 year life on the charts at the 9th percentile) and they were very pleased with him! We didn't see the geneticist at this appt (who we like) but the endocrinology doctors were nice. They didn't increase his HgH - he just hasn't gained enough weight to do so. The doctors were "nice" - I hate to get locked into that, I'll keep people around longer than I should because they seem nice enough - I hate to "break up" :) My husband is thankful for this trait in me and he kind of has it himself. :) I miss Dr. Hardin - she was awesome - these people are just ok. I feel like its a wasted drive somewhat. We do like the orthopedist that is doing his VEPTR surgery in August so we are kind of stuck in a relationship with Columbus now.
The dietician didn't really give any guidance - no charts, no numbers, no suggestions (other than to limit gatorade and juice, and sugary things like that - to which I wanted to sarcastically reply, oh really?) She said it seems like he's doing fine. I guess I should just be pleased and calm myself, but I get a little testy these days like I'm a constant advocate for the little man. Like I need to fight for him. Enough complaining! He's doing wonderfully though & we can't wait for his big party on Saturday!!! We still have to have a sleep study in Columbus on Thursday night and I think I'm going to take him by myself for the first time - so wish us luck!

Thursday, July 8, 2010

PWS Clinic in hours

Yeah so I'm up still trying to get things done and we have to leave in like 4 hours to go to Columbus for Isaac's PWS clinic appointment - I'm betting I'll be regretting the lack of sleep later. :) But I am excited to show him off at our appointment - He's done so much since we last saw the doctors! I really am proud of how far he's come. The PT said this week that his legs were getting more definition and getting much bigger. The creatine is helping (even though its not a daily thing, I still worry) and he just seems to be doing so well. We still haven't had the sleep study done that we were supposed to before our appointment, in fact its scheduled for next week (yay two weeks in a row to drive to columbus, oh joy) - but we are hoping that if all goes well with that they'll agree to up the Hgh. Well I hope this makes sense, because good lord I'm tired.

Friday, July 2, 2010

My tribute to our beloved Senator Robert C. Byrd

Ok, its a little wacky, um maybe a little messed up to post this. But when my little boy was born the only thing I could think of was my god he looks like a little Robert C. Byrd. A little sickly Robert C. Byrd. It was the only thing that got me and my husband through that first week I think was to laugh at that - yeah I know, what a weird sick sense of humor we had. Good lord we even looked up what the C stood for in case we needed to name Isaac that. We did not (since it was Carlyle :) but it kept our mind from thinking wow, what is wrong with our poor little man.

Robert C. Byrd passed away this week at the age of 92. I, like every other West Virginian, loved him. Here is my tribute to him. :)