[tri-med] Re: Katrina

In a message dated 1/26/2004 6:11:30 PM Eastern Standard Time, 
rhngai03@xxxxxxxxx writes:
Does Brendan see a geneticist? We have not set up any appointment to meet 
with the one who diagnose Rachel yet...partly due to some unfounded antagonism 
because he offered us no hope when it was so sorely needed after the diagnose 
and partly because he's over an hour away in NYC. 

We saw a geneticists right after Brendan was born, he gave us his diagnosis 
and said there was nothing for us to do.  I haven't been back.  When I went to 
the SOFT conference in Utah and spoke with Dr. Carey he knew the geneticists 
and suggested I go back and show Brendan to him.  I have yet to make that apt.

Does Brendan have a speech therapist/pathologist? We have a totally useless 
one from the Childrens Rehab Center. We had a few sessions early on and she 
made very little attempts or suggestions to help with Rachel's oral feed. She 
hasn't shown up in 3 months now. We may be looking to start up with oral feed 
again once Rachel gets her G-tube, but definitely not with her.

Brendan had a speech therapist when he first came home from the hospital but 
soon after we moved and she could not come to the new house.  Then we had an 
OT who also did feedings but Brendan aspirated and got pneumonia, so we stopped 
oral feeds with her but continued with OT.  Last summer we had another speech 
therapist start cause I wanted to work on his oral stimulation and try to 
strengthen his swallow.  She worked out really well but got pregnant and move 
to 
NC.  LOL.  Now we have a new one, and she is great.  I took Brendan to have a 
swallow study, which showed that he has silent aspiration but we could try 
oral feeds with a therapist once a week giving him 3 ml of baby food.  We have 
been doing this for the last couple months and he loves it.  I am going to wait 
until the summer to have another study done to see if there has been an 
improvement.


Have you have any experiences with Westchester Medical Center? Mine have been 
total negative! It takes a month to get an appointment...and doctors rushes 
you out of their offices. I think it's a money making machine.


Brendan was transferred to WMC when he was less then a day old.  He spent 30 
days there.  Yes, they are a bit slow but I have not had any trouble with 
them.  Brendan sees a cardiologist, pulminologist, gastroenterologist, 
orthopedic 
and pediatrics at the medical offices.  I like all his Drs.  

Hospice...we signed up with Hospice of Westchester and Putnam before we find 
out they don't have a pediatric program. (We really were very ignorant at 
time). So we couldn't use many of their services...even the visiting nurse has 
limited experiences with babies. We finally decided to drop them in the 
beginning 
of the year. 

The Social worker from WMC set with up through our insurance with hospice.  
The first week I was home from the hospital with Brendan they showed up, a 
nurse and a social worker.  The suggested a home health aid, she came 5 days a 
week for 2-4 hours and was with us for a year.  The nurse stopped by once a 
week 
to check on Brendan.  The social worker came by once every 2 months to check 
on me.  They helped me file for Care At Home so that we could get Medicaid.


The only doctor we like so far has been Rachel's cardiologist. He's the only 
one willing to listen and explain things to us.


I think I have lucked out with all my doctors.  I think its because they 
think I am so great and that I am the only reason Brendan is alive today.  LOL


Can you tell me more about Brendan? 
Brendan is the cutest little boy in the world, what more can I say LOL.  He 
is blind and deaf and is feed through a g tube.  He rolls all over the place 
and has started to get up on his elbows and knees. 

  I can send pics if you want to see him



Mikki (Michelle) Rooney Wife to John (10 yrs)
Mom to Michael (9), Caitlin (7), Siobhan (4)
and Brendan T-13 (2 yrs 5 months) 
White Plains, NY


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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