Henry's visit with Dr.H - what a relief

September 5, 2004

Hi all,

Henry had a fantastic appointment with Dr.H last week compared with his May

visit. He is up to 39in and 32 1/2 lbs - that's three inches and 2 1/2 lbs

since he began GHT in March . She only increased is periactin and left

everything else the same. I thought she would decrease his tube feedings at

night but

she said his muscle tone was good and there was no extra weight on him even

though he is almost to the 50% at weight for stature.

His last visit was a disaster with Dr.H being very angry at the nurses for

not taking any blood work for a baseline BEFORE he began ght, and then was very

upset at Henry for is lack of eating any new foods. I then mistakenly brought

a fruit roll up in the back pack and when Henry took it out to eat I thought

she was going to blow. She then suggested he might have PDD because he

averted his eyes when she was speaking to him.

So I spent the past couple of months trying to discover more about PDD and no

one I spoke to from teachers, peditricians to child psychologists thought PDD

was the right direction. So I tried to limit the possiblity of a repeat

performance at our next Dr. H visit. I scheduled the visit for the afternoon,

only brought Dr.H friendly snacks and brought Henry's sister to keep

him occupied. And it worked, Dr. H actually said it was good to have scene

Henry at his worst and then in a more normal Henry mode. The whole experience

gave me confidence that my opinions as Henry's mother do matter. Even though I

know Henry would not be where he is today with out being under the care of Dr.H,

she is his endo and understanding the daily life of a 4yr old boy might not

be her speciality.

We ended up waiting an hour but from what everyone else has been saying that

was long. The space is much larger but she seemed isolated. She has no nurse

and Yadria is in another building. I am not sure how far away the floor for

her surgery patients is from her office? I asked how she felt about her new

" digs " she said nice but I can't imagine moving from such an established

position to such a new environment. I don't think the move will have an effect

on

the care she offers her patients because she is too dedicated to our kids but

personally it must be difficult especially in such an ego driven culture.

Hope you all are enjoying the holiday weekend - thinking of our Fla friends

and their safe haven and Jodi Z, my condolences about the loss of your

mother-in-law.

H.

Henry - 4yrs old, RSS 39in, 32lbs

- 8yrs old, nonRSS, 45lbs, 48iin

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