Tuesday, January 27, 2009

Quick Update






Just a quick update because I've got to be up early for tomorrow. We will be over at University of Maryland Medical Center by 6:15. Kenzie will get some sedatives before they go in with the gas mask to sedate her. They have decided they will have to go with general and intubate her as the doctor might be ballooning her veins and the anaesthesia doctor wants to be prepared should something go wrong. We have decided to take Dr. Haskals advice and are putting in the J Tube. So going forward all of Kenzies formula will bypass her stomach and go straight into her small intestines. We aren't sure how long the whole procedure will take but our hope is to be back at KKI in the afternoon. Ill keep you all posted!

As for her therapies: We switched Kenzie to the spoon for all bites. We now give Kenzie 30 seconds to clear the carrots out of her mouth and if she doesn't the Nuk sweeps her tongue to help her out. Shes been doing decently with it but could be much better. We have also changed her "incentives". We've taken away the constant video and toy and now we throw pop music and a Dr. Seuss book when she swallows her bite. ST and OT are still going horribly and Jordan and I plan to talk to them about changing the way she is dealt with tomorrow. Something needs to be changed as we've been here 3 weeks now and its not working.

Kenzie got her room changed again back to the 3 bed-room. We did that because we got to have her best friends all in 1 room! Its so fun now we have Kenzie, Chance (a 5 yr old boy) and Lilly (an almost 4 year old) all together. They both have said I can show their faces and names on the site so Ill post some pictures of them. Kenzie goes nuts with them and Lilly loves giving Kenzie hugs. Tonight we had storytime with Kenzie on my lap and Chance and Lilly next to me. I swear I think I missed my calling. Maybe I should have been a preschool teacher. Even better is that all 3 kids get into bed at 8pm and sleep through the night!

We had so much fun with Uncle Cousin Markie Boy visiting the last 2 days. Lilly even calls him Markie Boy now too! He introduced us to yumm Potbelly sandwiches and watched Kenzies therapies. Everyone who works here can't believe how many visitors kenzie gets!

Have a good night everyone and Ill let you all know how it goes tomorrow

2 comments:

mnbauman said...

Dear Amy & Kenzie-
I'll be thinking of you all tomorrow while I'm in flight to Florida. I'll give Grandma E a call on Thursday to see how things went. You're in my thoughts & prayers...
xoxo
Robin

Carly said...

Thinking of Kenzie today!!! Looking forward to hearing good news when she's out of surgery, and can't wait to see you all in a couple weeks!