[tri-med] Re: [tri-family] Stephen Update 3/27/05

Wow! it sounds like real progress. I am glad that the surgery went well in
February and will be thinking (praying :)) for you all as the next round
begins. Thank you for such an uplifting update!

Catherine, mom of Becky 30 (Trisomy 13 Mosaic)

-----Original Message-----
From: tri-family-bounce@xxxxxxxxxxxxx
[mailto:tri-family-bounce@xxxxxxxxxxxxx]On Behalf Of Gary Comparetto
Sent: Sunday, March 27, 2005 9:40 PM
To: tri-family
Subject: [tri-family] Stephen Update 3/27/05


Hi,
Happy Easter to everyone!  I hope you all had a blessed day!

Here?s an update on Stephen.

Stephen has been doing very well the last couple of weeks.  His breath
holding episodes have decreased significantly in frequency and
severity.  He?s only been having ?0? or ?1? per day, without the need
for oxygen.  Also, he?s generally been able to keep down his food.
There have been a couple of times where he?s suffered a little with what
appears to have been a stomach virus but these episodes have been short
and he?s recovered quickly from them.  He?s up to 15 lbs 3 oz ? he was
10 lbs 6 oz when he returned home from the hospital after having his
heart and intestine surgery on February 8th.  We?re so thankful that
he?s doing well with both the breath-holding and in gaining weight.

His oral intake still varies a bit ? lately, it has been in the 40-60 ml
range per feeding which is ¼ to 1/3 of his total nourishment.  Because
he has not been able to increase his oral intake to the point at which
he can sustain himself using only the Haberman bottle, we have decided
to have a G-tube inserted for the balance of his nourishment beyond
which he gets with the special Haberman bottle.  We will continue to
feed Stephen with the Haberman bottle and use the G-tube for the
remainder of the feeding. Our hope is that Stephen will get to the point
at which he takes all of his nourishment orally without the need for the
G-tube ? perhaps this will happen after the palate correction which
would likely be in 3-4 months.

Stephen is scheduled for surgery at Children?s Hospital in Washington DC
to correct his cleft lip this coming Wednesday.  In fact, he will also
get the G-tube inserted on Wednesday, at 7:30 AM, and this will be
followed by the lip repair which is supposed to begin at about 8:00 AM.
We would appreciate your prayers that the Good Lord would direct the
doctor?s hands such that both surgeries will be successful and that
Stephen will come through them safely.

Elizabeth and I continue to do well and the children are also doing well
? everyone?s in good heath and we?re catching up a bit with homeschool.
Elizabeth?s mom has returned to us and that is also a great blessing for
us all.

Elizabeth and I appreciate all your thoughts and prayers for Stephen and
our family ? they are such an encouragement to us!

Gary (and Elizabeth) parents of Daniel (15), Michael (14), Joshua (11),
Rachel (9), John (7), Nathan (6), Esther (3) and Stephen (T13 Mosaic
born 10/5/04)




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                  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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