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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.
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.
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.
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.
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.
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.
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!
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.
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!
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!
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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