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4-16-10
 I've
been meaning to do an update to Matthew's page for a while now. It's just
hard to find the time. Matthew Elijah is now 18 months old and he is doing
relatively well.
At 6 months old Matthew had his inguanal hernia repair as well as a g-tube
placed and a Nissen to avoid any future aspiration events. At 1 year of age
he had a PDA repair done through a cath procedure. He is now, according to
his cardiologist, stable cardiac wise. He continues to take several
medications to control his seizures which began at 6 months of age.
Thankfully, the seizure meds are working pretty well. His intestinal
motility is a little better. In fact he had his first bit of stage one
applesauce mixed in his Neocate Jr. today.
He also takes Miralax daily to help. He is starting to hold his head up a
bit more and can roll from his back to his tummy and to his sides. He is
also able to scoot on his back a short distance.
He works with physical therapy and has gotten a pediatric wheelchair and
daffos to help straighten out his legs. We hope that one day he'll be able
to walk.
He can say "hey," "Nuh-ha," and "Ma" and he is very interactive with
people. He makes himself understood. He loves hugs and attention. He has
had a lot of respiratory issues the beginning of the year but except for a
few days has been free of having to use oxygen. His immune system is very
low and he seems to catch a lot of viruses.
All in all, we are very blessed to be where we are today. Our family
thanks God for Matthew and pray for many years with him to come.
Danni Baker
dannibaker79@yahoo.com
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3-5-09
 My
name is Danni Baker. My son's name is Matthew Elijah Baker. He was born
10-03-08. We live in Fort Bragg, North Carolina.
Matthew was diagnosed with Full Trisomy 13 after blood work. I believe they said
12 out of 12 cells. The condition was not detected during my pregnancy, which
went relatively smoothly until my blood pressure went up. I can only determine
it was God's will that I not find out during my pregnancy. Because of
preexisting hypertension I had multiple ultrasounds and due to a mix up where my
blood work got lost, I had two triple screen blood tests. Except for the fact
Matthew measured a little small (which I was told was normal when mom's have
hypertension) nothing looked out of the ordinary.
Trisomy 13 was suspected at birth. Matthew came into the world at 37 weeks
gestation measuring 32weeks. He was in three different NICU's and came home at
10 weeks of age.
He was born with a cutis aplasia (healing quite nicely on its own), an extra
digit on his right hand (since removed), malrotated bowels (repaired with LADS
procedure at 10 days old), kidney reflux (grade 3 and stable), and some cardiac
issues which included: LSVC, 2 medium sized ASD's, a PDA, and a medium sized VSD.
Today, his heart is stable. The ASD's have all but closed, and the VSD is very
small now. The PDA had closed but Matthew had a respiratory infection last month
and it reopened. His cardiologist believes the VSD and PDA will close on their
own but if not at 1year of age he says he can easily repair them.
He has an umbilical hernia and an inguinal hernia. He'll have surgery in April
for the ingunal hernia. His brain is structurally normal. He requires a very low
dose of oxygen since his respiratory infection but he'll be off of that soon.
His biggest issues are nasal congestion (ENT says his upper respitory area and
sinuses are normal, it's just the season) and his bowels. He's got slow
intestinal motility. He's on Reglan for motility, Zantac for stomach reflux
(though he really doesn't have much of that), and Amoxicillin to guard against
UTI's with the kidney reflux. He used to require suppositories twice daily to
pass his bowels but for the last couple of months he hasn't needed them very
much at all. It took Matthew a long time to successfully bottle feed due to his
stomach issues but slowly he's gotten to be an expert bottle feeder. He's up to
7 ounces every 5 hours. He's had both breast milk and neocate formula. The
breast milk has run out and now he's strictly neocate. He's turning into a
little butterball and loves to eat so his doctor is thinking about trying him
with extremely pulverized rice cereal.
 He is now 5 months old and doing relatively well at home with his family. Just
like any other baby, he smiles, he laughs, he cries for feedings and to be
picked up and loved. He is in love with his big brother, Tommy, who's three.
I've enrolled him in early intervention services. He gets physical therapy and
his therapist thinks he looks good in that department. According to audiology,
Matthew has a hearing deficit. I can't tell. His hearing seems quite normal to
me. His vision is fine.
Every doctor that sees Matthew has told me that when they were told he had Full
Trisomy 13 they couldn't believe it when they saw him. Outwardly, anyway, they
said they couldn't tell. I don't know why that saddens me but it does. I guess
every time I hear that I get this hope like maybe he doesn't really have it and
the tests are wrong but reality will inevitably set in all over again. I'll just
keep remembering that my hope and help lies in my God, not in what I see and
hear.
Anyway, I apologize for not writing back months ago. It's just been a very very
rough few months and now I am just getting a chance to breathe and catch up on
some important things such as this.
Thank you for your site and the service that
you are performing especially for people like my husband and I who were so lost
and offered no hope after
Matthew's diagnosis.
Danni Baker
dannibaker79@yahoo.com
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