We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
Friday, August 20, 2010
I wasn't sure if good news was allowed at Dr's appointments!
Before I type the good news, I just had to post this series of pictures. No, she's not eating. She refuses to take anything by mouth still, and we are STILL (almost a year later) on the waiting list for feeding therapy. But lately I have been giving her a bowl of whatever we eat to play with. She makes a giant mess, but more importantly she touches it! It gets on her fingers, and as you can see in the pictures, her fingers get in her mouth. She gets little tastes and looks at me and smiles. She's such a power monger. LOL She has to tell me "I know I tasted it, but I am NOT going to eat for you". Hehe It's good for her to play with it anyway, and it keeps her occupied while we eat!
So on to the good doctor's appointment for once ...
Emily has had renal ultrasounds every 6 months for years now. Then three years ago or so we had to start catherizing her every 8 hours. Then it got moved to every 6 hours. Then finally it got moved to every 4 hours. Since that works at preventing UTI's, it's not a horrible thing. She got the Mitrofanoff last September (I can't believe it's been almost a year already!) which was a HUGE improvement. So catheterizing isn't a big deal, but I was going to be really sad if we were doing this all and her hydronephrosis wasn't getting any better. The last two ultrasounds, it stayed unchanged.
She had her ultrasound the end of July, and her urology follow-up the other day. The news? Great! Her right kidney is COMPLETELY normal! It is not enlarged at all anymore! Her left kidney? Not as good. Improved slightly, but still enlarged. So now she has unilateral hydronephrosis instead of bilateral. I'll take it! :) We are to continue catheterizing every 4 hours through the Mitrofanoff, and call with any infections or problems.
Barring infections or anything else, we are cleared for a YEAR! Whaaaaat? Awesome news! :)
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13 comments:
Wahoo! That is awesome news! Progress progress progress! Love it.
Wicked news!!!
Love the photo's of Emily - She looks cheeky as always!
Whooo!!! That's great news :O) Xx
Wahoo! Look at that naked girl!
That is great news! Glad to hear it. Good doc appts are the best :)
WOOHOO!!! I love great news! What a wonderful blessing! I'm so happy for you!
Great idea at dinner time too! She looks so cute with her bowl of food! Hugs!!!
YAY! I must say, and of course you know this that she is so ver beautiful! Love that smile:)
That is SUCH great news! :) I'm happy for you. That kidney stuff always scared me with Ben.
Awesome! That is great news!! I hope things stay well with her! Good news is the best!
And I'm so happy for you that she is touching food and putting her hands in her mouth! You are right, it's a start!!
Cute Pics!
That really is great news! One kidney, one less worry.
What type of feeding program is it that it's a waiting list that long? My guys don't eat PO either, I totally get the frustration.
xo!
Wow - I love to hear of a good kidney appointment!!
YUM YUM YUM!!!
Great appointment! And good job at getting her to taste some food! That will pay off one day!
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