Clayton's Doctors appointments today

January 20, 1999

Hi all:

Today was designated doctor visit day. We saw the ENT and GI.

First the ENT - Good news and bad news. The good news is that his hearing is

fine -- a minor loss with respect to very low sounds but generally within

normal limits. This is good that he hears -- but he is still not talking a lot

of processing very well what he hears. We are awaiting another evaluation from

the early intervention teacher for processing issues (he already gets therapy

3 times a week. OT, speech and special Ed teacher). The teacher who will be

doing the evaluation specializes in processing issues.

The bad news is that Clayton is scheduled for surgery next Friday for the

placement of ear tubes. I know this is minor surgery (his twin had it done and

my older son had 4 sets of tubes) BUT with Clayton nothing is simple.

Especially since it is being done at the Children's Hospital (CHOP) that did

not due all his other surgery's and procedures (his neuro, pulmonary and GI

docs are at St. and ENT is at CHOP). However, I went over his history

-- g-tube (all meds need to go through here) and that latex precautions are

necessary. They were fine with this. Hopefully he will handle the anesthesia

OK and his heart rate will not drop too much (this usually happens). He will

not be intubated or need an IV as the operation is very short.

Next we went to the GI - Clayton gained some weight -- only 3 ounces in almost

7 weeks -- but at least it is a gain. Still around the 5% for height and

weight but plodding along. We are still awaiting insurance approval for our

admission to Kennedy Kreiger - but our GI spoke to Dr. Katz down there

yesterday and everything seems to be on track. Our GI did tell me that the

tube would be staying for a while and could not tell us when it would come out

- I was actually fine with this (strange considering I fought tube feeding my

kid for almost 9 months) as it seems to actually be helping Clayton and he is

actually gaining weight -- albeit slowly -- and not loosing.

So all and all not a bad day, with the exception that Jake decided to throw up

all over MY BED at 1:30 am. Lovely. Had to get up and change the sheets,

etc. It was strange as he really is feeling fine -- no fever and he wanted to

go to school today so I sent him -- as he felt fine.

Love,

Sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

and Clayton (eosinophilic gastroenteritis, food allergies (milk, soy, eggs,

wheat), g-tube, Nissen, latex allergy, mild DD, undiagnosed neuro issues,

sensory integration disorder and now tremors and suspected metabolic disorder,

WHEN WILL THIS END)

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