Just returned from Boston

September 29, 2004

Well, not Heidi and but I did around 6:20 PM. I was there from

noon until 4:15 PM. I didn't see as many doctors that I would have liked

but I saw Dr. Korson and a doctor that works in Dr. Webster's clinic

(rehab).

Dr. Korson is a very nice man and easy to talk to. He explained things

very well to us but he mentioned the possibility of the " P " word, you

know... progression of her mito. With 's regression it is hard to

say whether it is a progression of the disease or if it's a neurological

problem and he wants Dr. Minster to check in. It's possible that the

regression is due to her being sick so often and her body hasn't had a

chance to get caught up. Then again, it's possible that the mito has gone

to her brain affecting the " motor " areas of her brain causing her to not

want to walk anymore and affecting her fine motor skills. This is one big

part of this hospitalization.

Furthermore, they want to look at her bladder. When they did the

ultrasound yesterday, she peed out into her pants but her bladder was still

full. Dr. Korson said that the mito may be affecting the bladder causing

the muscles to not fully push the urine out. Hence, may be causing her to

have more UTI's because she isn't pushing out all the urine.

I guess the doctors are also interested in her dystonia. Every doctor

that came in to see the past couple of days wanted to see

move. We'll have to chat with the neurologist to see what she would like to

do about that.

Well, my head is hurting from my driving to Boston and for the fact

that my son just dropped a pan on the floor. I guess Dr. Korson (well

Margaret, Dr. K's nurse practitioner) want to see our son too at some point.

Nick has been having " barf headaches " and she thinks that it could be

cyclic vomiting. She wants to look at him to rule it out. Anyways, take

care and I'm sure Heidi will try to contact everyone at some point. I

brought a friends laptop to the hospital so she can try and e-mail everyone.

Take care and thank you for all your support.

- father to 2 yrs (mito, seizures, rta, on tpn, autonomic

dysfunction, and who else knows what now), Kaitlin 5 years, and NIcholas 6

yrs (Aspergers, Tourettes, Celiac Disease) and husband to a great wife

Heidi.

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