Having Hope: When Jonathan was first born, reading and learning about OI was very overwhelming. All I could do then was think about
everything I could NOT do with Jonathan. It takes a little time to get to know your baby and what he will or will not tolerate,
and, at least for us, this constantly seems to be changing. We could not hold or dress Jonathan for 3 weeks, we could not
pick him up under his arms for 4 months, I never thought he would sit up or roll over. Now he is doing all of these things.
There is no way to tell what your baby physically will or will not be able to do. Just take things one day at a time and celebrate
each and every little milestone. While this 'not knowing' is frustrating--it also leaves a lot of room for HOPE! One day it
hit me that there were so many things that I could do with him and that there were things he was doing himself. Best of all
there are SO MANY things that Jonathan WILL be able to do in the future--paint, play a musical instrument, read, write, enjoy
computers, swim, golf, go to school, have a job! The list is endless!
Bathing Tips: Bathing Jonathan was a little difficult at first. We laid him on a gel
pad that our occupational therapist had lent us (see Photo Album). Then we used a little foam bathing pad that you can buy
just about anywhere. But with this I either had to lean in and support his head with my hand/arm the whole time or else only
fill the tub with a little water and he would lie flat. I finally bought a bathing sling--I got mine at Toys R Us and have
seen them other places. It is a mesh cloth stretched across a downward sloping metal frame. They are meant for bathing tiny
newborns, but I found that laying the foam bathing pad ON TOP of this sling put Jonathan in a perfect reclining position.
I could fill the tub with enough water to bathe him and both my hands were free. We even started laying him on his tummy after
we washed him so he could play. It was soft and cushioned under his belly and came up high enough under his head to keep his
face out of the water. Hope that makes sense. The foam bath pad is about $4 and the bathing sling is about $7.
Holding Your OI Baby:
Common sense is the best guide when handling your baby with OI. Remember that the bones are very fragile and can
break with little or no pressure. Be especially careful of the long bones in the body --- the arms, legs, and ribs. You
should not lift your baby under the armpits or pull on his/her arms or legs. When you change diapers, lift the baby by the
buttocks and not by the ankles, as is customarily done. Spread your fingers apart as far as possible, and put your hand under
the buttocks, with your forearm under the baby's legs to prevent them from dangling. In the beginning it took two of us to
diaper Jonathan, until we felt we could do it by ourselves. To lift the baby onto your shoulder, or carry the baby, use the
same technique, but with one hand behind the head and the other behind the buttocks, again with fingers spread as far as possible.
When lifting or moving your child, be careful that little fingers and toes do not get caught on clothing you are wearing,
such as shirts or blouses that button down the front. We found it helpful to place a piece of egg crate foam
rubber on top of a pillow and then insert them both into a pillowcase and use this to transport the baby. This
type of support can also be used as a base when holding the baby
Bouncy Seat: We found that a bouncy seat was not a good idea for Jonathan. Our physical
therapist said the seat is not very supportive and bad for his spine. This was hard because he loved sitting in it, but after
I accidentally startled him and as a result he fractured his tibia--we put it away for good. The same goes for flimsy umbrella
strollers--they are not supportive and do not promote good sitting posture. Our PT said not to use either.
Mobiles and Crib Toys: When Jonathan was first born we had a mobile in his crib. He
loved to watch the slow moving objects. The only bad thing with a mobile was that it encouraged him to lay flat on the back
of his head--and we were beginning to have problems with the back of his head getting flat. After a few months (I wish I had
done this from day one) we took down the mobile and put Fisher Price's "Peaceful Planet Aquarium" on one side of the crib
and a little baby mirror tied to the other side of the crib. He LOVED the aquarium (worth every penny!) and really enjoys
the mirror. The best thing is it got him to turn his head to the right or left rather than just lying flat.
Pamidronate: When we first found out about Pamidronate we thought it was only offered
at the Shriners in Montreal. Then we learned it was also offered at Shriners in Los Angeles. It is now offered at a few other
Shriners across the country and even some hospitals. We were very fortunate that things worked out with Shriners in Salt Lake
City so that Jonathan is able to get his treatment there (a 45 minute drive from our home). Pamidronate has made such a wonderful
difference in his life! He is is truly a different baby since starting the treatment. If your baby has moderate to severe
OI, I would do everything in my power to get this treatment--whether it is working with your insurance to get it covered at
a local hospital, or working with Shriner's, or flying somewhere where it is available--I would not waste any time doing so.
We believe that the earlier a baby can get on it the better!! It has given us so much hope for Jonathan.
Early Intervention: Jonathan has a Physical Therapist and Occupational Therapist, each
visits once a month. They are WONDERFUL and have helped us so much. They come as part of the local Early Invervention Program--I
think it is associated with the school system. It's purpose is to offer assistance to children who may have physical or mental
delays as early as possible. They come and visit for an hour once a month and check Jonathan's progress. We set goals for
him, long and short term. They give me great information and suggestions of how I can help Jonathan progress physically. If
you don't already have PT and OT coming to your house, I would sugggest calling a school and asking about any early intervention
programs they have. It has been such help to us!
Boppy Pillow: "Boppy Pillows" are wonderful and we have found so many uses for ours.
(A Boppy Pillow is a soft "C" shaped cushion that is just the right size for an infant to sit in the middle). We first used
it to lay Jonathan in while he was watching a video. Then we began using it for 'tummy time'--it provided a good angle to
support his upper body and allowed him to put a little pressure on his arms. It was also extremely useful as Jonathan was
learning to sit up. We would sit him in the middle and it would allow him to practice supporting himself without the fear
of falling over. Lately we have been using it to help him practice being in a crawling position. (We got ours at Babies R
Us for $20)