Hamiltonia: September 2008

This weekend we finished up the dining room side...put up all the trim, I painted my stripes and the trim...then tonight we moved furniture over so we could get to the OTHER half. LOL (you'll understand when you see the pictures!) Timbo kinda compared it to a set on a stage...if you have your blinders on, it looks so complete and beautiful on one side...the other side is reality LOL - We think another 2-3 weeks and we'll be done!

It looks really good. I wasn't too sure about the stripes at first...(they won't stay that covered up forever - just have to get the other half done to spread the furniture back out...not sure it was exactly what I was going for...but at least my lines are straight!

Guess I could have finished cleaning off the table before taking the picture...but I'm tired...and there are still tools laying around..you can see the hose for the compressor still laying down the hallway...

Well, Miss Josie is being her cute little self...but I wanted to update friends and family about what is going on with her....Most of you I've told, but in case I've missed someone...here is a little recap.

With Josie's tiny size, and being in the UNDER 5% range for height and weight...AND added to that her not speaking - not even the word NO - which is every 2 year old's favorite word, her pediatrician's office recommended a genetic evaluation. So we did it, figured it would rule stuff out. It came back normal. Well - now back to square one on why she's little and not talking.

So back to the peds office for her 2 year old checkup...the dr. said they feel confident that since the eval. came back normal, and her liver functions all seem ok...that she just must gonna be tiny...but they'll still keep an eye on her growth - but for now, there is not a major concern.

But now for the speech. I had heard from a from a friend about Apraxia. After some reading, I couldn't believe how many of the characteristics she had. Here is a great site for it, http://www.apraxia-kids.org/. (Basically there is no intellectual issues...she thinks in her head she knows how to say words...but the connection from brain to mouth isn't there - she just can't get the sounds out right...but tries!) So many characteristics fit under the description for that disorder. So when we went to the peds, I told her what I found about Apraxia. After some discussion, and because I was still concerned with her "eye issue" (Where her eyes would tend to float out, kinda like lazy eye - but when doing that she stared into space) the dr. recommended seeing a pediatric neurologist.

SO - we go to that consult last week. He said other than the speech delay and the eye issue I described...she seemed to be developmentally normal. She's as smart as a whip! He recommended getting an EEG to rule out seizures during the eye episodes.

So this past Thur. We go for an EEG...

So Josie got all the electrodes attached...didn't like it at first then tolerated it. They get us set up in the room...and there we go...I was suppose to push the "seizure" button when I saw her have one of her episodes...

I saw 2...So about 4.5 hours into it...the "observer" comes back...tells me it is almost over..and asks me what I "saw" when I pushed the button - so I explained the "eyes floating out and her staring off into space"...she goes on to discuss what is gonna happen next..I ask her "so DID YOU see anything when I pushed the button?" Because it was all recorded (oh, forgot to mention that there was a video camera in the room trained on Josie the entire time)...The observer says, "the dr. will discuss any results with you...do you have a follow up scheduled" I tell her I do but it is at the end of Oct....she replies with "Oh, you'll hear from him before then"

And previously the dr. told us if anything was detected, he'd contact us sooner than the scheduled follow-up.

Later, when the tech was removing all the things from her head, (different than the observer lady), he says, we don't discuss results with you, but I can tell you that if an emergency situation/finding had happened, the dr. would have been called. And that didn't happen -OK - so, now, in my head, I KNOW they saw SOMETHING...it wasn't "an emergency" thing...but there is obviously something there...

And I'm glad that I followed through with this...but at the same time, now I'm sitting on pins and needles wondering what the heck my daughter has been having for over a year's time with this eye issue...tons of other questions, have these little episodes done irreversible damage? Is this why she's not talking?

I just put the thought in my head...she's healthy, she's giggly...she's perfect...and whatEVER this "thing" is....she's still OK right now.

She was the hit of the office though - she had to wear her pink cowgirl boots today..she had 5 people watching her get her electrodes in because they just thought she was the cutest thing....(I think so too!)

Here are some photos so you can see how cute she was with her special hat!
(here is daddy putting the cowboy boots BACK on - she didn't want to take them off)