Leah's home and oh so happy!!!

You should have seen how fast she wanted out of that hospital.  Almost couldn't get her dressed fast enough.  Anyway we are home with lots of medication and a very happy girl.  She's been washed and dressed and fed and is happily watching the Wiggles.  

In Bloom

A couple of the fruit trees that we planted when Ian and Melissa were here are starting to Bloom.We are starting to get excited. The purple one is Nectarine and the white ones are Plums.

Leah's coming home this afternoon!!!???!!!

I guess that's good.  I'm a bit annoyed with the whole hospital/doctor business.  After several frustrating conversations regarding her feeding tube and still no resolution I will be glad to have her home and just deal with her regular GI person and her regular doctor.  So much for the complaining.  I will post regarding our cruise later.  It really was nice to have a vacation and thanks to Holly for taking care of things here while we were gone!!!!

snow

we drove up to polluck pines one friday afternoon....we stopped to use the bathroom at the grocery store (we were with janessa) when we came out it was snowing!!! a lot!! so we just played in the parking lot for about 10 minutes. the kids got cold and we drove home. it was a lot of fun. i had never been to the snow when it was actually falling from the sky. it was beautiful.
love holly

tennis

hey itsHOLLY...just wanted to put some pictures up. GRACE and EMILY and i went to miller park and played tennis. it was pretty fun. these girls are silly and made me laugh a lot. gabe watched leah....how nice of him.

The moment of truth...

Grace had her hearing tested on Monday and her hearing is worse.  Her ear is healthy.  No more cholesteatoma and no more problems with the ear drum.  The prosthetic bones are in place but her hearing is worse.  We are waiting to hear from the doctor.  The audiologist said that since her new eardrum is still a little thick and still healing they might wait another 6 months to retest her hearing.  There is still some hope of a hearing improvement but it doesn't look likely.  The audiologist was really nice and showed Grace a few hearing aides that were small and in some pretty cool colors like hot pink and neon green.  Grace is resigned to the possibility that she will have to get a hearing aide and she doesn't seem too upset over that. The best part is that my insurance will pay $1,000 and the hearing aides Grace was shown run about $1,200 so it won't be a terrible financial burden.  The surgeon told us her hearing could be worse but I think we were hoping for a better outcome.  At least we have insurance. 

The Wide Wide World of Blogging

Well in all 23 years that we have had Leah I have not taken the opportunity to explore the internet for information about Rubinstein Taybi Syndrome.  There lots of info out there on the vast internet highway.  I've been checking out these blogs by families with children that have RTS (that's the cool way to refer to the syndrome).  I'll eventually be up on all the latest jargon but it's been enjoyable checking out these blogs.  Seems that Leah has a fairly severe case but I seem to remember one of the geneticists saying he had never seen or heard of any one person with as many symptoms as Leah had.  I guess we hit the jackpot.  Ha.  If you have the time or the interest check out some of these webpages and blogs.  http://www.rubinstein-taybi.org/our_pages.html