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Baby Jonathan's OI Page

3rd - 11th Year Updates

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Jonathan's Pamidronate Experiences & Montreal's Reserach 2001
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Jonathan's Progress
 
 
April/May 2002
 
Jonathan has been fracture free for one year. He had his first sleep over at his Grandparents and did great...no tears, just smiles the whole two days. We had our first dentist visit. Jonathan fell and bumped his front teeth on base of our couch. The dentist thought the roots looked OK but after a week or so his right tooth seemed a little bit discolored. Time will tell.
 
June/July 2002
 
Jonathan's love for balls continues.  He likes to play lots of different games in a day...going from ping-pong, to basketball, to baseball ball.  His favorite at this time is golf.  He has a toddler golf club set and thinks it is a lot of fun. He doesn't show much interest in putting, but when it comes to driving, he really knows how to swing.  He also started swiming lessons.  He learned to put his head in the water and blow bubbles.
August/September 2002
 
After 15 months fracture free Jonathan broke his right femur. Even though many were around him, no one actually saw it happen. He was on the side walk and fell on to the grass. He had been able to handle falls like this many times before, but for some reason this time fractured.  He remained in a cast for almost 4 weeks.  After that he slowly learned again to crawl and to walk.  He has a slight limp. 
 
October /Novemer 2002
 
After 4 days of walking Jonathan fractured his other femur (Oct. 3rd) while dancing to a Wiggles video. He had a short femur cast on for about 3 weeks. The first 10 days he does not like to be moved very much. But after that he loved getting around by crawling and scooting on the gound to play with his favorite Rescue Heroes.  Up on his feet in late November he fell (Nov.27) and hurt that same leg. Not a break, we think a microfracture.  He loves to play with his fire engines, emergency vehicles, police cars and likes to watch his favorite movie, Toy Story 2.
 
December 2002/ January 2003
 
Jonathan continued to favor his recent femur microfracture for about three weeks and then started to cautiously walk again at times.  As he gains muscle strength he walks more and crawls less each day. He listens when we say to be careful and we aren't allowing jumping for the time.  He enjoys the pool and hot tub and has started water therapy 3 times a week.  Plans to go to Shriner's in Montreal for a consutation with Dr. Fassier, the worlds authority on OI, are in the works. We hope to have Jonathan's femurs re-rodded there with expandable rods available only in Canada in Feb.  
 
February/March, 2003
 
Jonathan is walking almost as well as he was last summer before the femur breaks, still has a slight limp. He has begun to enjoy golfing again. Our re-rodding surgery that was planned for Feb. 19th at the Montreal Shriners was cancelled.  We did get to meet with Dr. Fassier and Dr. Glorieux which was wonderful and have re-scheduled it for June. The rods themselves are being modified. They believe Joanthan is a Type IV. We had been told at birth he as a Type III and later told problaby a Type III/ IV. We were hoping Jonathan could last till his summer surgery without a freacture, however at the beginning of March he seems to have re-fractured right in the same spot as last Nov. --although the break did not show up on the x-ray. We didn't cast it, he will stay off his feet for at least a week...and then proceed at his own pace. Jonathan received his Pamidronate treatment this month also, still on the 12 week schedule.

April / May 2003
 
Jonathan fell at the beginning of April and seemed to hurt his ankle. It did not appear to be broken but he did not want to put any pressure on it. Less than a week later, he grabbed his leg while walking and holding his moms hand, in a lot of pain. The x-ray showed no break. Three days later he hurt that same spot on his femur while getting him into car seat.  On the 13th he broke his leg, no trauma was involved and was in great pain. He was admitted to the hospital and had rodding surgery on the 15th. We had hoped to have this surgery done in Montreal with the new rods, but it was not to be. A week later on the 22nd, the other femur was rodded. His Dr. was able to do a less invasive surgery and put him in backslabs which were a lot better than a spica cast!  Jonathan was recovering from these two surgeries when his baby brother, Andrew , arriving on April 28th! Two weeks after that his backslabs came off ( May 13th) and he  began to scoot on his bottom to get around.
 

June / July 2003
 
 Once Jonathan's casts were off  within days he was able to scoot and crawl and a week later he stood with the help for a few minutes. As the weeks progressed he has become more steady and took steps again slowly and cautiously. We held his hands and walked with him  just as we did the first time he was learning to walk. Three months after his rodding surgeries we think Jonathan is just about back to where he was last summer before all his femur breaks started. The one thing we are still weary of is jumping, although Jonathan has assured us he "knows how to jump gently".  Jonathan is potty trained, actually has been for more than  year now in the day time and almost diaper free at night as well.  He has begun his water therapy again.  We recently had his IEP (Individual Education Plan) and Jonathan will start pre-school in the Fall.
 
August / September 2003
 
We are so proud of Jonathan! For the first time during his treatment he got his IV placed with no sedative. He was so brave.  He started pre-school and attends three days a week. He has a one-on-one aide and she is wonderful. He is walking again un-aided and doing well. He does have a slight limp.
 
October / November 2003
 
Jonathan hurt his leg. No one saw it happen, he said he was kicking a ball and fell. His wheelchair that had been ordered arrived just in time for this break. He was so happy to have it and looked so proud to be able to manuver it so well.  He even went to preschool with his wheelchair and did fine. His new movie favorite is "Lion King".
 
December 2003 / January 2004
 
Jonathan hurt his leg at pre-school, got bumped by a classmate and fell. The teacher and aide handled it very well.   It was a micro-fracture and not a complete break.  He remained off of it for a week and then started standing on it and walking slowly again with in 2 weeks. He is enjoying his water therapy and can go under the water now to retrieve toys on the bottom.  He had his Pamidronate treatment in late December, 2nd time he got his IV with no sedation. We are so proud of him.
 
February / March 2004
4th Year Updates
 
Jonathan seemed to tweak his leg slipping on a clear page protector.  The rods seem to help so that his femur if broke, is not displaced.  Again this was a micro-fracture and he took it easy for a few days then began to scoot on his bottom.  Jonathan seems to adjust very well when he has to go to using his wheelchair. He uses his walker when he is ready to help steady himself and to start to take steps again. This month he learned how to float on his back.  He really looks forward to going to the pool. He loves his little brother and is learning to be safe around Andrew who is crawling. He celebrated his 4th birthday on March 8th with his pre-school friends. Jonathan weighs 33 lbs and is 37 inches tall.
 
April / May 2004
 
Jonathan has not had any breaks or micro-fractures the last two months. He continues to improve and can now "fast walk", although still does so with a slight limp. Jonathan's swim therapy is two days a week and his legs seem to be getting some muscle on them. He goes under the water with ease now.  For the first time Jonathan received his Pamidronate in a one day, half dose treatment.
 
June / July 2004
 
Jonathan has learned to go underwater and retrieves coins and toys from the bottom of the pool. He loves the water and looks so forward to his time in the pool. At the end of June he got an orthodic lift for his shoe which helped reduce his limp. But days later he started off July with a  fractured left femur so he hasn't gotten to use his orthodics much.  The rods in his leg  helped so much to stabalize the bone and while recovering he likes to spend lots of time in his wagon. His favorite movie is Peter Pan. Friends loaned him a pirate ship, toys figurines and we have all been singing "Never Smile at a Crocodile:). Jonathan gave his first 2 minute talk at church in Primary. It was about "Families".
 
August / September 2004
 
Jonathan is doing better with his walking. Limping still be getting less and less after his break last month. Jonathan flew with his mom to Omaha, Nebraska for the OI Clinic there at the Children's Hospital and to be officially seen by Dr. Horacio Plotkin and Dr Esposito. It was a great time to discuss future rodding surgeries that Jonathan will probably need sometime next year. Jonathan started his 2nd year of pre-school. He continues to have his one on one aide Jackie who we really like a lot. She has been great with Jonathan being there for safety reasons but allowing him to do and handle as much as he can on his own. He loves to sing and has learned a Patriotic song. He can also say the Pledge of Allegiance.
 
October / November 2004
 
Jonathan has begun an Art Class and got to go fishing with his dad. He caught a number of sting rays. He broke his right femur at school, tripped on his own foot he said while trying to get a ball on the playground. He is recovering from that and was able within three weeks to put some pressure on his leg and bear weight and stand on it. By 4-5 weeks he started to walk again. Jonathan loves to play Nintendo when recovering from his fractures, especially Mario. Jonathan is now 38 inches tall and weighs 36 lbs.
 
August / September 2004
 
Jonathan is doing better with his walking. Limping still be getting less and less after his break last month. Jonathan flew with his mom to Omaha, Nebraska for the OI Clinic there at the Children's Hospital and to be officially seen by Dr. Horacio Plotkin and Dr Esposito. It was a great time to discuss future rodding surgeries that Jonathan will probably need sometime next year. Jonathan started his 2nd year of pre-school. He continues to have his one on one aide Jackie who we really like a lot. She has been great with Jonathan being there for safety reasons but allowing him to do and handle as much as he can on his own. He loves to sing and has learned a Patriotic song. He can also say the Pledge of Allegiance.
 
October / November 2004
 
Jonathan has begun an Art Class and got to go fishing with his dad. He caught a number of sting rays. He broke his right femur at school, tripped on his own foot he said while trying to get a ball on the playground. He is recovering from that and was able within three weeks to put some pressure on his leg and bear weight and stand on it. By 4-5 weeks he started to walk again. Jonathan loves to play Nintendo when recovering from his fractures, especially Mario. Jonathan is now 38 inches tall and weighs 36 lbs.
 
 
December 2004 / January 2005
 
Jonathan has developed quite an interest in "being good" this December. He is so thoughtful and does things without being asked, gives lots of hugs and tells his mom "You are so beautiful, Mom". He is hoping that Santa is making notes of all this behavior and has asked for a Hover-copter for Christmas. He can now swim a number of laps (the wide way in the pool) at swim therapy and loves going there twice each week. The water has kept him mobile and offers him lots of good fun. Going back to school was hard for Jonathan in January, he has become quite attached to mom. By the third week he was back to his easy going self and able to say good-bye without crying. Jonathan started Golf classes this month and so far, so good. He has enjoyed golfing since he was about 2 yrs. old. We are making plans to have his femur rods replaced in Omaha, NE this Spring with Dr. Plotkin and Dr. Esposito. It will 2 years this April that his last ones were done. These will be the new expanding Fassier - Duvall rods which hopefully will last a little longer this time. Edit Text
 
September, 2009
 
Jonathan has finished up 3rd grade and enjoyed a Spring and Summer playing on the Challenger's Baseball team.  In September he entered 4th gr. where he is an enthusiastic student and was just recently voted School Secretary of Stoneridge Elementary. He does swim therapy once a week which keeps his muscles toned and strong. He can swim the length of the pool.  He receives Pamidronate twice a year at a near by Children's Hospital in a one day IV infusion. He goes for a yearly check up to Omaha, NE and is seen by Dr. Joseph Esposito a wonderful orthopedic surgeon there who is very experienced with OI children. Dr. Esposito has replaced Jonathan's femur rods a couple of times as he has grown.  
 
October, 2010
 
Jonathan is now the oldest of 4 boys in the family. His three younger brothers do not have OI. He is 4 ft. 2 in. He just started the 5th grade and is now serving as Stonegate Elementary's Vice President. He loves sports and has the opportunity to play soccer and basketball with his classmates. He is learning his own limits and has done pretty good.  He has 2 to 3 fractures a year, mostly femurs still. Some are just "tweaks" as they call them and some more major breaks. Jonathan walks unless recovering from a fracture when he uses his new camoflage wheelchair. He continues with his swimming therapy once a week and receives Pamidronate twice a year in a one day half dose at a local Children's hospital. He is one of the happiest kids you could ever meet.
 
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