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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. 
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.
PLEASE JOIN US -- If you are the parent of a child with OI, we have started an OI Parents Email Discussion List. We have
over 850 members who share information on a daily basis with each other. If you would like to join, email us at oigrandma@hotmail.com and let us know.
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