some sort of syndrome. He looked like the photos of very very severe OI kids in medical books. They told us they suspected OI (duh,
almost every bone in his body was broken from being delivered in the
emergency room by a resident to a mom who had no prenatal care.) Anyway, I digress....they gave us a paragraph that they copied out of a medical book. He was
on a pillow, no one held him without the pillow. I asked the neonatologist if I could hold him and she said "Eventually someone
will have to". So I picked up the pillow, leaned over it, rested him on my chest and stood up. That is how we stayed for the next four
months. You think I am kidding, but this child screamed for 23 hours
a day. I slept in a recliner with him on my chest so the kids and hubby the teacher could get some sleep for school the next day. Between the breaks (no meds by the
way) and drug withdrawl, he was a mess. This is one of the 'I wish I had known then what I know now' things. He got his first pain medication at 3 mo old, and the doctor gave it to him thinking it
would relieve me a little of the crying! His first visit with the geneticist was around 3mo old. they did a skin biopsy of his upper
arm and diagnosed type III/IV but he presented more like a type II/III. He had hernias that became incarcerated at 8 weeks old, so he had hernia surgery. He came home for a few weeks, then started with
the pneumonias. We spent almost 3 months in the hospital doing every test and seeing every specialist you can imagine. Finally they
diagnosed 'silent reflux' did a surgery called the nissen proceedure, inserted a G-Tube and we were on our way, never looking back. This was in August 2000. While in the hospital I did a lot of research (as did our residents) and found info on pamidronate. We had everyting lined up for his first treatment by October 2001. Yes it took a year to
find someone willing to do it, and remember, he was a foster child, so we had to work through the DCFS system. I ended up going to a doctor I know at St Jude and giving him a packet I had printed up about the pamidronate studies. After seeing Jake and what kind of shape he was in he read everything, called Dr. Plotkin, and told me we had nothing to lose,
as this child had no quality of life. He laid flat on his back, moved only his arm to lift a pacifier,nothing heavier, and cried, A LOT. He had a central line placed (everyone knew from prior horror episodes that he was an impossible stick, minimum of 3, sometimes so unattainable that they had to put in a pic line.) It has been much
easier since then. In Jan. of 2002 we found a wonderful online support group at Yahoo called OI parents. Until then, we flew solo, and I mean solo until Jake was almost 2. Looking back, I am very lucky he lived, because no one did anything for him
unless I pushed them to (thus #2 things I wish I had known then). NO one expected him to live. He has had pamidronate treatments and his life is forever changed. He has had 6 rodding surgeries on his legs, and one so far on each arm. After the first pamidronate, he sat
unsupported in Feb. 2002. He started Scooting on his bottom by May 2002. He could go from laying to sitting independantly by July 02,
rolled over both ways by 7/02. He scoots all over on his butt and rolls through the house. He dresses himself, feeds himself, and
talks like a teenager. This year so far he has actually crawled on his hands and knees with his head off of the floor for about 6 feet,
and the other day he yelled at me to help him, I looked up and he had pulled to standing at the couch, and did not know what to do to get
down! He has had hundreds of breaks, too many to count and I do not have time to focus on that. We look at the positives, first being he
is not in unbearable pain, second that this gift we have been given has survived this long. Anything after that is a bonus. He is the sauciest child you have ever seen and a true blessing from God. In February 2004 we officially adopted him. He is a keeper!!