Welcome Friends!
Lewie S.
North Carolina
Birth Date - 2 years old
Main Diagnosis - Chiari Malformation
THEME: Duckies
Biography
Lewis Allen Selzer was our biggest surprise. After finding out
that both of his siblings have Chiari Malformation type one, and taking into
account my own health problems, we decided to use birth control. I had been
feeling pretty bad and thought it was just a flair. On a whim I decided to take
a pregnancy test, and we found out about our Lewie. He had a lot of
ultrasounds, and fetal echos in my belly. They said his placenta was weak, and
it caused the right side of his heart to become enlarged. At 34 weeks my water
broke, and he was delivered by c-section.
I knew he had Chiari after his first bottle. He couldn't keep it down. We
went home a week later on the bottle game began. It took several tries, but we
found one he could handle. At 15 days he had seizure like activity and we were
readmitted to the hospital. They gave us a reflux sling, and we were sent home.
The formula swap went on for a while until we were admitted to the hospital at 6
months for his refusal to eat anything but pedilyte. After much work we got him
eating soy formula with beech nut rice. We were released with a GI appointment.
More playing and we found that pre-made formula with organic rice that was
gluten free did best for him. We were eventually able to transition him to
concentrate, but it was an expensive year food wise. He now is on a soy milk,
lactose free milk combo. Neither will stay down alone.
His digestive issues were not our only concerns. At 3 months I got an eye
exam done because he wasn't tracking. They sent us to a specialist who
eventually diagnosed him with Cortical vision impairment. Because of his vision
issues he requires a familiar person around him at all times, and will start
screaming to the point of vomit if he doesn't have one. This doesn't just mean
his family members, it is more limited then that, mostly it is mommy, or daddy.
At the end of last year he randomly started to bang his head on the floor
hard enough to bruise. A MRI was done to check the status of his Chiari, and it
was determined not to be at a surgical level yet. Later that week we had an
appointment with a genetics doctor who told us he has some kind of metabolic
disorder, most likely a form of Mitochondrial disease. More samples were taken,
and we are currently waiting on results. If they are inconclusive he will need
a muscle biopsy.
While we were waiting on results Lewie got an ear infection. It moved into
his blood, and he started having a fever of over 104*. Even with meds it didn't
read normal until yesterday. Due to his metabolic disorder he refuses to drink
or eat enough, so here we sit in the hospital until he takes enough by mouth to
not need IV's. This will be a common thing with his conditions.
In the future my baby is facing brain surgery, and many hospital stays. He
already has headaches they can't treat because of his age. The effects of his
vision issue will not be fully understood until he is in school and more verbal.
With all of his problems he still smiles everyday. He loves nothing more then
to lay on a blanket, or put it on his head. He also loves when my parents
travel because they bring him back a gift. Lewie only has one word he
consistently says, and that is present.
"THANK YOU"
Lewie took his quilt to his first hospital visit today. He had a sedated endoscopy done, and his quilt helped to calm him down. We hid under it in between getting stuff done, and he felt a lot better. Thought you would like to see your quilt in action.
He loves it so much, and we both really appreciate you and those who helped make it for him.
Thanks,
Amanda
