TODAY

[Guest guest]

Hi all:

Today has been a long day. I was up most of the night with either Jake or

Clayton - and up so early - in the shower at 6 am (no I actually did not have

to be anywhere early - just could not go back to sleep). Well Jake's ear was

leaking fluid all over the place - so the first stop was the ped with him at

8:30 am - DOUBLE EAR INFECTION - tubes are out and this is 2nd ear infection

since. Not good. He gave Jake augmentum - chewable - not good as Jake refuses

all meds - struggle to get him to chew it and finally got about 3/4 in him. No

fever so ped said take him to school. Dropped him off at school at 9:30 and

went and got him at 11:45. He by then had a fever and did not feel well - so

back to the house by 12:30 - got him in bed - he slept until 5pm and went back

to sleep at 7:15 - after another struggle with the medicine and a higher

fever. Luckily his school is closed tomorrow - not that he could go anyway.

In my hour break today - the head of Clayton's EI program came over at 10:30

to evaluate Clayton and to discuss certain ideas about his processing issues.

She did more of an evaluation and watching an no real testing. She did

indicate she had some ideas to help the therapists and also suggested that we

use a picture system to help him communicate in addition to sign language -

since he has a hard time with the sign language and learns better with a

visual cue. SHe is going to suggest this to the Speech teacher. Also she said

that she was going to get us a new service coordinator - one who can better

help us deal with the paper work for Medicaid, SSI (she said we should apply)

and the division of developmental disabilities (which provides stipends and

respite care, etc.) and maybe some other programs. Our current service

coordinator is good for services but not real helpful in other areas. She was

very helpful and indicated that is was very clear that his skills were very

scattered and sporadic -- indicating that they vary week to week.

Sorry so long, just a long day.

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)