[tri-med] New infection

I took Hannah to therapy like normal today. She seemed to be ok. But a few 
minutes after the OT therapist took her back she came back and asked me if 
Hannah was warm natured. I told her no, just the opposite, her temp tends 
to run low. I went back with her and sure enough, Hannah was pretty warm. 
OT said they wouldn't push her and I told her to let me know if she got any 
warmer or started acting odd.
Speech was the last to see her. She said that Hannah just let her do 
whatever, no fussing or struggling like she does most of the time. Almost 
like "Ok, I don't feel good, get it over with." I called my husband and had 
him call the chiropractor to reschedule and I called the pediatrician to 
tell them I was on my way there. (I had already talked to them earlier in 
the morning to let them know I'd be there after the chiropractor.)

They did Hannah's weight (17 pounds and 2 ounces!) and took her temp. Temp 
was 98.7 but the nurse said she felt warmer than that. The doctor came in 
to see her and said that her throat looked a bit red so they did a strep 
culture. Negative. They then catherized her to get a clean urine specimen. 
Ha ha! Barely enough to check but enough to tell there was something there, 
but yup, another UTI.. They had to do it again and got nothing (Can you say 
deja vu???) The doctor asked when she was due to be fed and I said now. So 
we fed her and waited. Third time they got enough to culture. Hannah got 
the heavy duty antibiotics again and has to go back again tomorrow. Donn 
was planning on keeping her at home tomorrow anyway as I am dealing with 
the May/June newsletter at work and not having her there would make it 
easier for me to do that. They will check her out and put her on the 
regular antibiotic and give her the last Synigis shot for the season.

Doctor Fox also consulted with a pediatric urologist and they decided to 
put Hannah on a 6 month course of something that should prevent her from 
getting any more UTIs. If she gets one while on this then there is another 
problem.

They also had the paperwork ready to apply for a handicapped placard for 
Hannah. We stopped by the mall on the way home and turned that in. I'm sure 
you all understand when I say it was one of the hardest things I have ever 
done. My daughter is now officially labeled by the state as handicapped. 
But it will be easier in the long run with her and all her medical 
paraphernalia. It's a permanent placard but needs to be renewed every 2 years.

Doctor Fox also suggested that we check into applying for TennCare (state 
insurance) for Hannah. I told her I didn't think that she was eligible with 
our BCBS. She said that it would be a different kind of TennCare and that 
it would act as secondary insurance. Basically we wouldn't have to worry 
about medical stuff for her anymore. No more doctor bills. And she said she 
thought it would be retroactive to either her diagnosis or birth, she 
wasn't sure which. I have asked Donn to talk to her about it again tomorrow 
so he gets the info straight from her too. (Our TIPS rep was here at the 
house this afternoon and she said to definitely apply for it. She was all 
apologies for not having mentioned it before thinking we probably already 
had done so. She also had the Respite Care papers so they are now filed out 
and signed and she will fax then in tomorrow morning.)

So... Hannah is again on an antibiotic. I had asked Doctor Fox about 
leaving Hannah on the Pediasure w/ fiber or going back to the Enfamil but 
she wasn't to leave her on the Pediasure. Fine by me. We are adding yogurt 
to it again to try and get a jump start on antibiotic induced diarrhea.

All in all, an interesting day!

Janet and Donnell King
Parents of Hannah Emily - 5-6-03 - Trisomy 14 Mosaic Partial
Also Amanda, 21, Jon, 8, Zach, 14, and Caty, 12, who are all just as special.

for updates on the family, including news on Hannah Emily, go to 
http://kinglynews.blogspot.com
(latest update April 5th)  

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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