A Worthwhile Trip

We are back from MD and still processing the trip. Molly was such a trooper in the car - WAY better than I ever anticipated. We only stopped once on the way to Bethesda. We spent Tuesday night with the Gertzman's and had a nice evening visiting. Molly was a champ and went to sleep at dinner time - allowing Jim and me to eat at the same time!! We got up at 5:45 Wednesday morning and headed to Baltimore. Our first appointment was at 9:30 with Physical Therapy.

Tracy, the PT, was extremely nice and gave us lots of pointers on what we should be adding to our daily routine. I asked how many OI babies she had worked with, and was extremely disappointed to learn that she had worked with very few. We left that appointment to find some lunch and I found myself getting very down. I was so surprised that at a center that treats so many kids with OI that they did not have more experience with PT for babies. If they don't have the experience, then who will?

The PT also mentioned different adaptive equipment that Molly may need down the road, which reminded me that we won't be "flying under the radar" once she outgrows the stroller. I dread having to endure people's stares and questions when this becomes our reality.

I have spent so little time with Molly outside of the house that I also got a glimpse of what life with a wheelchair bound child is like. I always thought of most places as being wheelchair accessible. Next time you're headed somewhere, pretend you need a ramp and smooth surface - it is surprising.

Our second appointment was with the orthopedist. We liked her right off the bat. She was up front, frank, and bright. We discussed rodding, a procedure where they insert rods in the bone to straighten and support, and it seems that she will have them in both upper and lower legs. This was the first time that we got straight forward answers regarding Molly's course of treatment. Molly's fracture rate and bone deformity will dictate when she has surgery, but sometime between 12 and 24 months will probably be the right time.

Next we met with the endocrinologist to discuss Molly's infusions. At the end of this appointment it became clear that we have been on the right path and that it is not an exact science. We have some new questions to research and more confident about our current treatment plan.

We got some good news about Molly's severity at these appointments as well. We were under the impression that she was on the severe end of the spectrum. They said that her X-Rays looked good. She has thin bones and deformities where she has fractured, but that they sometimes see odd bone formation with the most severe cases. It was nice to hear that Molly may have a better prognosis than anticipated.

It was a very worthwhile trip. We are still processing all that we learned. I am excited to go to Omaha and learn even more and also to filter it all through the other parents and their experience.

We headed home around 7 pm last night and arrived in Cary around 1:00 am. A long trip, but we got it over with and Molly slept most of the way. I am hopeful that she will travel this well next month.

This was a week full of big steps. We bought a convertible car seat, aka a "Big Girl Car Seat", and put her in her high chair for the first time. She looks so tiny, but also a lot older. She is interacting with her world so much more. It has been a fun transition.