Welcome Friends!
Cheryl S.
North Carolina
Birth Date - Septmber 25, 2009
Main Diagnosis - Chiari Malformation
THEME: EMS Babies
Biography
Johnny was the child I had no time to pray for. We knew that we
wanted children when we got married. We ended up conceiving him on our wedding
night. The day I found out I was pregnant, I was in an accident on the way to
work. I had been talking about how we would tell our family we were expecting,
but they found out when they meet me in the ER for a neck injury. A week later
I had to return to the ER with cramping and bleeding. They did an ultrasound
and found a pocket of blood outside his placenta. They told me he had a 40%
chance of surviving. I cried for one night, then I was determined that my baby
would be born. Everyday there after I would talk to him, and sing to him. I
would tell him about me and my husband, and what our life was going to be like.
I don't know if my determination worked, but he was born at 38 weeks.
I knew he had issues with his formula in the hospital. He would spit up
his formula hours after eating. It would be curled, and I feared he was
allergic. It wasn't until the following week that the ped decided that we
should try another kind. We went through many of them. Some he would completly
refuse to eat, others he couldn't keep down at all, and others he would scream
in pain after drinking even after reflux meds. We finnally tried Neocate, an
expesive formula that needed to be ordered in the pharmacy. It cost 500 dollars
a month, and we went through our saving, and took out a loan to feed him, but it
worked. We added rice to make it thicker, but he got hives. Then we added
oatmeal.
As he grew we found that he was lactose intolerant, soy intolerant, allergic
to rice, and sensitive to peas. We figured it out, and just after he turned two
we added another angel to our family. He had a sister, named Cheryl, 20 days
after his second birthday. I actually had false labor on his birthday, and
thought that they were going to share a birthday. At 5 months Cheryl was
diagnosed with Chiari Malformation type 1. When I read the symptoms that night,
I knew he had it too. After a fight to get a MRI, he too was diagnosed with
Chiari Malformation type 1. He had brain surgery the month after he turned 3.
This cemented the bond he had with his sister. They not only shared parents,
they shared Chiari, and had the same scar on their head.
The surgery, and diagnoses has left him very sensitive to sounds, lights
and smells. To make things worse, we have found out that he has Aspergers. He
desperately wants to make friend, but has no social skills. He has no sense of
personal space, and is very literal. I love the way his brain works, and hope
that when he starts school the other kids will find him interesting too.
Squares donated by
" Operation Teddy Bear"
