[tri-med] Re: New Family

Hello and congratulations!
Our son Stephen (now 3 1/2yrs. old) cried alot for the first couple of
months and I never did figure it out! He had reflux and we gave him the
Mylicon drops and Zantac to neutralize the acid and Reglan to speed up
the digestive process. He vomitted probably half his feedings!
Stephen had the NG tube until around 6 mo. Then the G- tube for another
6 mo. Eventually he started eating us out of house and home!! A true
Italian!! We had the G-tube taken out after the winter flu season was
over. By then he had been eating and drinking all his sustenance and
all the G-tube was doing was getting infected! Stephen began to be a
much happier baby after his heart surgery (VSD repair) at 3 mo. old and
then immediately following that his mal-rotation of the small intestine
surgery. I attribute those two surgeries and the Lord's blessing him to
his incredible turn-around! I don't know why he was so miserable in the
beginning. After trying those medications without much improvement, I
just began to think he didn't feel well - whether it was his heart or
his gut I have no idea. He didn't pull his knees up in pain, like a
colicy baby. I don't know if he was able to show alot of colic symptoms
with his low middle tone. But like I said, after his heart and
malrotation surgeries, he was a new baby!
I pray for the trisomy babies regularly and equally for stamina for the
parents to persevere through tough times. I hope you have help from
family, friends and your church family.
Our church was such a blessing to us. They brought us meals for 6
entire months! My Mom was able to stay in our house for 6 solid months
and be our home anchor and be the stabilizing influence for our other 7
children. I stayed with Stephen who was in the hospital on and off
alot for those first 6 months and my husband alternated between the
hospital, home and work! It was a crazy time, but thankfully at least
for us it was short and our Stephen is running around here like any
other little boy would be. He's definitely different, has a big delay
in speech (expressive language only), but seems to understand and know
everything that is going on around him. He seems capable of so much -
and we came home from the hospital with hospice! It really seems like a
different lifetime ago!
Sorry to ramble on. This does remind me that I need to update Stephen's
pictures on the Trisomy website. He has so much personality!
Praying for you for wisdom and guidance in your decisions regarding
your baby.
Elizabeth
Wife of Gary, Mother to Daniel 18, Michael 17, Joshua 14, Rachel 12,
John 11, Nathan 9, Esther 6, Stephen 3 (Trisomy 13 mosaic)
=20


Gary Comparetto
The MITRE Corporation
Senior Principal Engineer
Network& Communications Engineering
(540) 955-1003
garycomp@xxxxxxxxx

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx] On Behalf Of Melanie
Sent: Saturday, March 22, 2008 12:32 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] New Family

Hello All,
I am new to the list and will introduce myself more fully when I have a
minute. =20

I am the mom to a 2 month old with Trisomy13.  She got her 2 month
shots on Wednesday.  For the past few days she has been very gasey and
fussy.  She generally calms when you hold her, but she is not her usual
content self. =20
She is exclusively getting breast milk through ng/bottle/breast.  It
seems that she frequently has gi issues.  We are giving her mylecon
drops every 4 hours and she is on prilosec for reflux.  Can anyone tell
me if they went through something similar.  Do you have any suggestions
to help her gas?  She did throw up once last night and once today.
both times it was after my husband fed her.  Could it be my diet?  Any
suggestions on what I should eliminate?

Thanks so much for any advice.


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

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

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