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 6-16-09
Hello to all! Well, Gage is 1yr old now, and everyday that goes
by he continues to have stride in his progress. We celebrated his
birthday with lots of close friends and family, and although it was
a nasty rainy day, it was such a joyous occasion!
Since I last wrote in, there as been a lot of changes with Gage.
I believe the doctors have finally seemed to get his seizures under
control. There has been a few slip ups with his eyes rolling back in
his head, and occasionally a stiffness of his arm, but NOTHING like
he had been going through. We have a lot of people praying for our
little man, and all I can say is there is a lot of power in
prayer!!! There is not a day that goes by that I don't thank the
Lord for blessing us with another good day!
He has FINALLY started cutting teeth, and now has 3. Both bottom
and one top one. He has had the hardest time with them. He has been
really cranky, and runnig low grade fevers, but I think the worst is
over with that.
Gage is showing us his true acrobat skills. He loves to be on the
floor rolling all over the place. Front to back, back to front. He
is also starting to get up on his knees and scoot! I don't think it
will be much longer before he starts crawling. He still doesnt have
full head control but is making some good progress with that. We
have PT and OT that comes out to the house now that gives him a real
good work out! We are also excited that Speech Therapy is going to
be starting real soon. I swear he says mama from time to time, and
he coos to me all day long.
The doctors are still concerned about his eye sight. We have been
waiting for his neurologist to clear him so he can have an ERG done,
and we finally got the ok to go ahead with that test. We are looking
for it to be done some time in August.
Well, I think that about sums things up for now. I will keep you
posted as things continue to change.
Beth Elliott
4-26-09
My name is Beth Elliott, and we live in Roper, NC. On May 20,2008
at 32 weeks gestation God graced my family and I with a beautiful
baby boy named Milton "Gage" Elliott. Right away the doctors were
concerned by different morpic features that Gage presented, but the
ones that were of importance right away was his congenital heart
defects and his difficulty eating. He was diagnosed right away with
micrognathia (small jaw), and stayed in NICU 8 days until he was
sent home feeding with a haberman nipple.
While Gage was in NICU they ran a chromosome test, and the
results showed that he was Mosaic, and had a unbalanced
translocation 2;13. We were informed that he was the only known case
ever reported with this specific chromosome disorder and that his
prognosis was unknown. We were paired with a Genetic specialist to
follow him unaware that that she was just the first specialists of
many to come.
Gage was being followed by a feed team where they determined that
he aspirated his milk, and every bottle would have to thickened by
Thick It. With this he developed reflux and was sent to a
pulmologist. He was followed by a Cardiologist for his ASD, and PDA,
and later to find he also had a VSD, none of them will require
surgery as of now. He required OT and PT because of contractions of
his hands and development delays. He sees a Urologist for an
undescended testicle. At 6 months old he had Craniostynosis repair,
and days later started having seizures which lead us to being seen
by a Neurologist. He also developed Hypertension after the surgery
and is now being followed by a Nephrologist. Gage has been on
several medications to try to control his seizures, and on April 18
was air lifted to Duke due to uncontrollable seizures.
While in the hospital my sister-in-law, which has been God send
to us and also a pediatric nurse of 20 years, received a call from
our Geneticist and told her that a skin biopsy that was done on Sept
17 2008 had just come back and results show that Gage has Mosaic
Partial Trisomy 13. Immediately we all break down because we have
done research on this condition before and 80% of the time the
prognosis is not good.
It wasn't until we were released from the hospital and I was able
to continue my search that I stumbled across your web site. It has
given me and my family lots of hope to see and hear the stories of
kids that are living with this rare disorder.
I am still trying to learn as much as I can about this syndrome,
and I vow to inform as many people as I can about this. I would
appreciate if someone could lead me to some resources that are out
there that I am unaware of. I have ordered 2 books from your web
site already and am anxiously waiting for them.
I am also very curious if you know others that have had Mosaic
Partial Trisomy 13, because the ones I have seen have been either
or, not both? I am also very interested in the awareness bracelet
that I have seen on your site, but couldn't find how to order it. I
appreciate any and all information that you can give. Thanks in
Advance.
Beth Elliott
bethelliott_78@netzero.net
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