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Jake's OI Story

All About OI
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That First Diagnosis
Our Little Snowflakes
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For Medical Professionals
Caring for a Newborn

OI Children are like snowflakes-----no two are just alike.

Hi, my name is Jeannie my hubby is Steve. We have 2 litters of children. The grown and almost grown ones are Rachel, 27 married and expecting her first baby in Oct. Steve is 23 and a school teacher. Zach is 21 in college, he is a CNA,EMT, and currently taking courses towards his paramedic. Josh is 19, in college on a sports scholarship and wants to be a pole vaulter professionally. (jumped 16 feet last year so who knows?). He is majoring in special education incase the whole Olympics thing does not work out.
We have been foster parents for 21 years which explains the second litter. Abby and Rebekah are twins who will be 14 in November. They have neurofibromatosis and fetal alcohol. They will be in 7th grade this year. They are functioning at about a 2-3 grade level. Then there is Jake, He was born in April 2000 at 32 weeks, in the emergency room of our hospital. His mother was there 10 min. before she had him. He was her 11th baby. He tested positive for cocaine,heroin, marajuana, and alcohol. (which by the way had nothing to do with his OI) DCFS called me and said they had a baby that needed a leg surgury then would be put in an adoptive home. (they knew we were NOT interested in adopting again and were foster only.) We took one look at him and fell in love! We knew it was some sort of syndrome and not just a leg surgery by his appearance. His left leg was rotated so his foot was in his armpit. His little heart shaped face was so adorable he melted our hearts. He was so fragile that no one at the hospital had picked him up. He laid on a pillow with no human contact except to gingerly have the diaper slid under him. When he was 8 days old I asked the neonatologist if I would ever be able to hold him. She said, "eventually someone is going to have to." She told me if it was her child, she would hold him all the time, even if he broke, because what kind of life is he going to have living on a pillow. I picked him up and didn't lay him down for 3 months (grin).
They did tell us he most likely had Osteogenesis Imperfecta which was confirmed a few months later by skin biopsy. He had many skeletal deformities that could kindof be seen on xrays, But his bones did not have enough density to even show too much. Because of fractures in utero that healed incorrectly you could not really tell which bends were his elbows and knees. I learned in the hospital that I had spent my whole life erroneously thinking the medical community was smarter than I was. The physical therapist came in the first day I was there to do 'range of motion'. I stopped her and asked her where his fractures were. She told me she was not sure, she had not seen his xrays. I told her she could leave, she was not moving him until I talked to his doctors. (my first of many such confrontations through the years) Upon dismissal they gave us a paragraph copied out of a medical book on OI and told us good luck. We went home with that and an appointment card to meet the genetics doctor in 3 weeks. Well, other than doing the skin biopsy, he was no help. He basically told me what OI was. No treatments, no nothing. I had been researching wildly about OI on the internet. I told him I had consulted with our local peds ortho and was starting physical therapy and lekotek (play therapy). He basically said, "whatever"..... We no longer see him.
Our first year was spent trying to keep him alive. First we had the drug withdrawl. Then went into incarcerated hernias for which we needed surgery. Following that we went into constant pneumonia which we discovered was caused by silent reflux, so he had surgery called a nissen proceedure and a g-tube placed. He was on an apnea monitor and used oxygen on and off for 2 years.  The oxygen remained on stand-by for respritory viruses and now I keep it for my security. He was then discovered to have kidney stones, which we have a constant battle keeping at bay. We used a pump and his g-tube to give him similac for extra calories and fluids at night for the first 4 years. He still has his g-button for convenience and to burp him because he has a really 'good' Nissen. We did finally at 15mo. travel to the shriners in Chicago, which is a story in itself. We made 3 or 4 visits every 6 months but kept being told, "let's wait and see". They did not start, nor recommend pamidronate, nor physical therapy or anything. I now know they were probably waiting to see if he survived or not. It took until he was over 18mo old for me to discover and arrange the pamidronate locally.
I can't immagine where he would be if he had had treatments the first 2 years.  Needless to say..... We no longer go there.
At 18mo. we finally got pamidronate treatments arranged. At that time he was basically flat on his back. He couldn't sit because of the spinal fractures, he couldn't lay on his side because of arm fractures, could only hold things as heavy as his pacifier. We have no way of knowing how many fractures he had, because you could barely see his bones on xray. I took all of the information I had dug up to a peds oncologist I knew to get his opinion. Dr. John McCallister at St. Jude Midwest Affiliate read everything then did his own research and called Dr. Plotkin. Dr. Mac and I agreed that we had nothing to lose. The reported side effects were basically non existant. We did pamidronate treatments every 6 weeks just for pain relief. We did not count on any other benefits. Well what a pleasant experience this has been. Within 6 weeks he could hold his head up, and was starting to sit. Jake reached a major milestone after each treatment it seemed. Jake now rolls over, sits up, scoots all over on his butt he can push up on his arms and pulls to a stand (sometimes). He can get into and out of his wheelchair with supervision. He builds towers with blocks, self feeds, holds his bottle, sippy cup or regular cup, (depending upon what is broken) and spends his days telling the other 8 people in this house what to do and when to do it. Quite a big job for such a little guy.
He now weighs 21 lbs and is about 29" long. He has had rods placed in all the bones in his legs and arms, which made a world of difference in his strength and development. So far no surgical complications. He goes weekly for physical therapy, every other week for occupational therapy and graduated from speech therapy.
This fall he starts regular kindergarten. We have learned never to say never. And have seen a true miracle. Jake amazes us everyday, and has been such
a 'spiritual glue' for our family. As soon as any member of the family enters the house, he is the first one they look for to get their welcome home. He is the center of our universe, this unplanned little man. I remember when I first brought him home,none of the older kids would touch him. I told them "He will break and hurt, but that is the price he and we will pay for loving him and enjoying him and him enjoying life!" (By the way, my 21 year old now is always being yelled at for acting like he is throwing him up in the air or swinging Jake, cradled in his arms to give him an 'airplane like feeling". Now I am the one afriad they will hurt him :-)
We learned everything the first 2 years the hard way through our own experience and at Jakes expense, but hopefully we can not make more mistakes, (like his horribly flat misshapen head for which he had to wear a helmet to remold it) because we didn't know any better and the medical community didn't tell us! We need to find a way to get the nuts and bolts information like that out to parents of newborns.
Now that Jake has survived our learning curve for 5 years, I am ready to step up and help the parents following me, like the parents of children older than mine, helped me. My mantra is don't give up, keep searching until there is nowhere else to go. My most valuable piece of information is to realize that the doctors are human and the medical communtiy at large does not know much about treating OI so you really need to seek out the 'experts' until you can stand on your own two feet with less experienced doctors. We regret wasting the first 2 years of Jake's life finding someone to treat him. If only we knew then what we know now.....well, who knows where Jake would be.

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