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Baby Jonathan's OI Page

1st Year Updates
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Jonathan's Birth
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Osteogenesis Imperfecta
Jonathan's Pamidronate Experiences & Montreal's Reserach 2001
Bisphosphonates - Dr. Plotkin
Jonathan's Helmet
2000 - 2011 Updates
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Jonathan's Progress
Birth to 12 months

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March 2000 - Newborn

This first month was quite an adjustment period. We learned how to care for Jonathan while being careful at the same time. We met a wonderful family that lived nearby, the father and his youngest daughter have OI. The father showed us how to make this little splint with a washcloth for Jonathan's broken arm that happened right after birth. We called him ALL the time with questions. He was a lifesaver!! We also got involved with the local Early Intervention Program. They arranged for an Occupational Therapist to come to our home once a month and a Physical Therapist to come twice a month. We looked forward to these visits, since both therapists had experience working with children with OI.

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April 2000 - One month

Jonathan traveled to Los Angeles for his first Pamidronate treatment at 6 weeks of age. He fractured his femur the night before we were to fly out. We took him to the hospital for x-rays but the break did not show up--something very common with OI. However when it was x-rayed a week later at the hospital in LA it did show up because there was some calcification at the site of the break. After the break, we gave Jonathan Infants Tylenol but it did not seem to help at all. At the suggestion of our life-saver friend, we asked our pediatrician if it was ok to try Infants Motrin. This helped tremendously! We give him Motrin now whenever he fractures. Usually around the clock for the first 3-5 days and then as needed from then on.

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May 2000 - Two Months

This month there were quite a few times when we thought Jonathan had fractured something. We could tell he was in pain but we could not pinpoint where the pain was. Looking back, I think they were compression fractures in his spine. We would give him Motrin as needed and just tried to be as careful as possible. Jonathan smiles a lot, he likes to sit in the swing (padded with a few blankets). Since birth he has liked to eat very frequently--about every 2 hours. When we pick Jonathan up it is always with one hand behind his neck/upper back and another hand supporting his bottom. He also loves to be held facing out--with one hand supporting his bottom and the other arm wrapped around his front.

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June 2000 - Three months

One day at the beginning of this month we could tell Jonathan was in a lot of pain--he was inconsolable even when we held him. We had already learned that taking him to the local hospital was not helpful because the average doctor/nurse does not know anything about OI, so we took him to Shriners in Salt Lake and they did x-rays and found multiple compression fractures in his spine, some were old and some were new. They gave him Motrin and also gave me some Loratab to use if needed, however we found that the Motrin still worked best. We had Jonathan spend about 3 or 4 days laying down on his foam mat as much as possible and this seemed to help him recover quickly. But it was hard because he just loves to be held all the time.

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July 2000 -- Four months

We had a rough start this month. Jonathan was sitting in his bouncy seat and I accidentally startled him and he jumped and at the same time kicked his leg on the front of the bouncy seat. As a result I think he had a hairline fracture in the bottom of his left tibia--but then about 4 days later his Dad was holding him and felt a little pop in that same place and we knew it was broken. We were very discouraged and it was hard seeing Jonathan in pain so often. This month Jonathan and I flew to visit my sister and her family. It was about 5 days after Jonathan had broken his tibia. I took him laying on his foam mat and told the people sitting next to me that they might have to help me out a little. They were very nice.

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August 2000 -- Five months

Jonathan has almost learned to sit up this month! We are so proud of him. This was a wonderful month--his first month with NO fractures! We can tell he is so much stronger and is still just happy all the time. We began lifting him under his arms last month and now we do it all the time. He got his helmet this month also and he tolerates wearing it just fine. He's bearing more and more weight on his legs when we stand him in our laps. We are so encouraged by his progress. Jonathan used to sleep flat on his back, hardly moving the entire night. Now he is beginning to move around a little more and usually rolls on his side to sleep.

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September 2000 - Six Months

Jonathan now sits like a pro! He is rolling all over the place and loves to roll around in his crib. We had an egg crate mattress on top of Jonathan's crib mattress, but we have since taken it out. He has worn his helmet for a month now and we can already notice improvement. Jonathan had his first "non family member" babysitter this month--you never saw someone give a babysitter such a list of instructions! But it was a close friend and everything went great, though a little tough on mom! Jonathan's therapists continue to be amazed at his progress. A few times Jonathan has gone from a sitting position to laying on his tummy. It scares me when I see him do this because his legs seem to get a bit crunched under him--but so far so good. When I see him do it, I try to help a little--but he often does it without me looking!

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October 2000 -- Seven months

This has been a wonderful month. Jonathan had a bone scan, as a follow up to the one he had four months ago. We still need to hear from the doctor, but the computer that analyzed the bone scan said his bone mineral density has increased 21%. Jonathan is not showing signs of an interest in crawling. He can push up on his forearms to play, but usually will try to 'roll' to a toy that is out of reach, rather than try to scoot or crawl to it. Jonathan will stand up in our laps holding only onto our thumbs.

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November 2000 - Eight months

Jonathan is getting stronger and stronger and it has been over four months with no fractures. He now scoots backwards and is able to get into a crawling position from sitting--though he isn't able to maintain it for very long. We can tell crawling won't be too far down the road. He is not able to get into a sitting position when lying on his tummy. We spoke with a doctor about Jonathan's bone scan from last month. They said that his bone mineral density is in the 28th percentile for his age/weight. We're not sure how this compares with other babies with OI. But they said that they could see increased bone density from his last bone scan. This scan will be a better baseline than his first scan. He will have another bone scan in 4-6 months. Jonathan has been so much fun this month--he's started calling us ma-ma and da-da, he waves bye-bye, and is fascinated with lights!

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December 2000 - Nine Months

Jonathan's first brush with fame! While at Shriners for his Pamidronate he met Karl Malone, John Stockton and John Starks--all Utah Jazz NBA players--they came to visit the kids in the hospital. Jonathan wasn't too fond of Karl, but all the older kids were! His treatment went well and he continues to do GREAT! We are very excited that he started scooting forward this month. It was a few days before Christmas. It's a 'commando' style crawl, on his forearms--but he can get around. He is also able to get into a sitting position from lying on his tummy. There have been a few times this month when Jonathan has fallen over from a sitting position--usually while he is leaning to grab a toy--and he will land on his arm in a funny position. In that split second I wait to hear "that cry" because I'm sure it will break, but it doesn't even phase Jonathan at all. He's just concerned about getting whatever it was he was reaching for. We are excited about hitting our "6 months fracture free" mark soon!

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January 2001 --Ten months

What a great month this has been for Jonathan! He continues to amaze us! He was scooting most of the month, but just in the last week or so he's decided to start crawling on all fours. Now he crawls like he's been doing it forever. He's also beginning to pull himself up to a standing position. He's still pretty unsteady and doesn't balance himself very carefully--but he's just as proud of himself as we are! Jonathan weighs 18lbs 4 oz and is 27 inches long (at the end of his 10th month).

February 2001--Eleven months

Well, the inevitable happened this month! After 7 months of no fractures, Jonathan broke his right femur while trying to cruise along the couch. He had been crawling on all fours, pulling himself to a stand at the couch, and just barely starting to cruise. We spent that evening in the ER and the next day at Shriners. He ended up with a hip spica cast that went all the way down to his ankle on one leg. He wore the cast for 3 weeks and a day--and got the cast off on his first birthday! What a present! Life in a spica cast is not fun. If that femur breaks again in the near future we are pretty sure we will go ahead with rodding surgery to help strengthen the bone. Coincidentally, Jonathan broke his leg the same day we found out that his bone mineral density is in the 49th percentile for his age group. The bone still has the collegen defect and his bones are weak, but the Dr. explained that he does have thicker bones now and that will hopefully mean fewer fractures. His bone mineral density has increased over 100% since he has been on Pamidronate (10 months). We have been blessed that he has responded so well to the treatments.

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