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

Thanks Catherine! I'm hoping to send an update on Wednesday.
Catherine Trewin wrote:

> 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)
>
> -- Binary/unsupported file stripped by Ecartis --
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> -- File: garycomp.vcf
> -- Desc: Card for Gary Comparetto
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line

-- Binary/unsupported file stripped by Ecartis --
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-- File: garycomp.vcf
-- Desc: Card for Gary Comparetto


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

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