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

Sunday updating

Well since this is the first day of a new month I decided to update the blog before the 10th.  I'm making progress in staying on top of things.  I hope this doesn't set the bar too high for me to reach when the new month rolls around.  I added a couple of "blogs" to the list just because I thought they might be interesting.  The nienie blog is an LDS woman who was badly burned in a plane crash and all the stuff about her recovery and her family and all that kind of stuff.  The other one "because I said so" I've checked out off and on for a while.  This woman is making a living from her blog and has a book deal and movie deal and on and on because of her mad blogging skills.  She's been compared to Irma Bombeck.  Don't really think she's all that but she is pretty funny sometimes.  Leah is  still alive and after yesterday I realize I need to watch her very closely.  She was scooting around in the wheel chair and when I went to check on her she had gotten into the Gatorade and was trying to kill herself by drinking some.  She chocked and sputtered and spewed blue gatorade all over the place.  That girl is something else.  Oh well at least she can walk a little bit.  I'll keep you all updated.  I'm sure you're just sitting on the edge of your seats waiting to hear the latest news.  Ha... 

Leah's home...yahoo!!!!

Leah enjoying a little wiggles action.  She's not used to the idea she can't just walk around anywhere she wants.  She can't eat either.  Tube feedings only.  But she is so HAPPY to be at home.  She's much stronger than she was the last time she got so sick.  Thank heavens since my back is much worse than it was then.  Ha...

This is last night after she got home and got a bath and a shampoo.  Chillin in the bed with her radio.  I bought her a new VCR/DVD player since she busted up the one that was in this bedroom.  I got her a new Wiggles DVD and the movie Madagascar.  Boy was she excited.

Here's Leah just contemplating having her radio back after 3 weeks in the hospital.  She was excited but very exhausted. 

Aw Leah

I couldn't help but think these two photos explain Leah! She gets SO excited when she sees her Handsome nephews! Leah is SO cute (and happy) when she is around the little ones.. :)

Not so fast now...

Got a call from the doctor today.  They wanted to send Leah home and then have me bring her back to do another modified barium swallow study to determine what sort of a feeding regimen she should be on.  I said no.  I learned that from little Caleb (more on that in a couple of sentences).  I told the doctor they needed to keep Leah and do the test before she comes home since transporting her is going to be fairly difficult until she gets some of her strength back and also I want to know what their feeding recommendation is before she comes home and we try to kill her by feeding her improperly.  So the upshot of that whole exchange is that she will stay in the hospital until after the swallow study is completed. Once again I will keep you all posted. Oh, and now an explanation of the "I said no" statement. When Ian and Melissa and the boys were here at the first of the year I asked little Caleb to do something (don't remember what) and he said with absolutely no malice "I said no".  So I said "Oh, well, I said yes" and he said just as sweet as can be "OK". Very cute don't you think?  When I typed that sentence it made me think of him.  Totally unbiased in saying I have the cutest, smartest, most wonderful grandsons in the whole universe... 

She's coming home...

Egads!!! I talked to the doctor and the discharge coordinator today and it looks like Leah will come home Thursday. She will need physical therapy and who knows what else but at least she will be home. We will have to rearrange things around here since she won't be able to maneuver the stairs and I'm sure there will be other adjustments. Kind of nervous and glad at the same time. I guess we've been through so much with Leah what's one more thing right???