Nina update

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Hi all --

Well, Nina had her echocardiogram today -- no problems with her heart itself

(hooray!). But they still don't know exactly what IS going on. So far it's

NOT her hsunts or her heart -- they are still looking into her thyroid problem

and there is a possibility it is caused by a problem in her lymphatic system.

If it's her hypothyroidism, they might be able to do something with meds, but

if it's the lymphatic system, they said there is " nothing they can do. " They

did say that since her " brady spells " (slow heart rate) are " sinus brady's "

(have a regular sinus rhythm, just slower) that they aren't life threatening.

The pediatrician (a different one than on Saturday) is convinced it's neuro --

mainly because of Nina's " different " brain and the ACM. She was saying that

since Nina has so much involved with her brainstem, then the autonomic

functions (heart rate & temp) will be affected. She TRIED to tell me that

Nina " always " does this -- but I told her ONLY when I bring her in -- not

ALWAYS at home -- if her heart rate " always " dropped below 70 ( & even below

60!) I would be in a hospital bed myself from lack of sleep!!!

Well, they were going to do some more blood tests to see if her thyroid is

really the culprit and her neuro suggested we keep an eye on liver function

since she is on so many meds. We also saw her nuero today (she had an

appointment that I made 3 months ago, so I wasn't gonna let it go!) -- I just

popped her in her chair & wheeled her over to his office (down 2 floors). He

went over her MRI report -- the only thing that they " found " was that her

conus was " borderline " low (I believe he said it was at L2) -- within the

" normal " range, but at the lower end of that range. It MIGHT explain her

bladder spasms. He was going to run it by her nsg. He also called the

pediatric " team " looking after Nina and put his 2 cents in.

All in all, we still just don't know and it's looking like they will release

her without really finding out (just will have ruled a few things out). The

stress is really getting to me -- had a stupid fight with my hubby tonight

about ice cream (I ate the last in a carton last night & he tells me that I am

wrong, I " had to " have eaten it before that cuz he swears the carton was in

the sink when he got home from his business trip last night -- dumb, huh?) --

it had/has me in tears cuz I am just SOOOOO frustrated with everything else!!

Well, that's long enough (too long!).

TTYL

Kris

Nina's stressed-out mom

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