We have been very busy and Molly is doing quite well. We headed up to the conference on Jul 30th and found the lobby already full of "little people" with walkers and wheelchairs. It was fun to feel like one of the crowd. It was also overwhelming trying to keep Molly safe as she buzzed around in her walker among all of the wheelchairs (almost all of the teens and adults were in chairs).
We met with Dr. Paul (a psychiatrist) and also Dr. Smith, an orthopedist from Chicago Shriners, on Thursday. We learned some good tips about getting Molly to reach up for things to encourage a long and strong spine and were given some advice regarding the SMO braces she will get when we get back to NC. SMO braces are orthotics that will give her ankles support and hopefully will help her to feel more stable and balanced on her feet.
It was wonderful to reconnect with families from the last conference and also to meet many new people. People with OI often look somewhat a like and it was strange to see so many people that could have passed as Molly's sisters/brothers or cousins etc.
My parents both came as well, which was great both for the support as well as to help absorb the vast amounts of information there is being presented at the conference. We put Molly into childcare at the conference, which was a big first for us. I was terrified to leave, but felt confident that the staff had all been trained by the OI Foundation. She was in the under 3 room with 2 other kids and 3 adults! It was a perfect first experience for all of us.
There was a couple there with their 5 month old daughter with OI and we all found ourselves showering them with advice and support. It is so overwhelming in the beginning and I think all of the parents of "older" children feel a strong need to offer advice, since there isn't that much information out there and nobody knows all of the tricks and challenges better than another parent. There was also a family from Saudi Arabia there with their 4 children. Their 10 month old has OI and it was wonderful that they were able to come so far to attend the conference.
Dr. Esposito was there and it was wonderful to be able to show him how well Molly was doing and how FAST she is walking! She was in the lobby showing him her "running" and tripped on one of the wheels of her walker and took her worst fall to date. It was terrifying, but was able to get right back up and keep going - we were VERY lucky. Of course when the surgeon is right there and she falls she is fine....
There was a dance on the last night of the conference and Molly had a ball out on the dance floor with all of the other kids. She was shaking and kicking to the beat - very cute. She picked out a couple of kids that she seemed to really take to quickly, which was wonderful.
Molly and I flew to Maine on Monday with my parents and, unfortunately, we have only seen the sun once since we arrived!! It is supposed to be nice later this week and we are hoping to take Molly to the beach for the first time.
We are heading to Montreal on Monday to go to the Shriner's hospital that has an OI clinic. We are hoping to get some good information.
Molly is scheduled to have her teeth capped in September and we are in the midst of battling with insurance to get the procedure covered. The dental has now agreed to pay 25% of the dental fee, but our medical insurance has thus far denied our appeal for the anesthesia and hospital fees, which is very overwhelming. I just hope it all works out in the end.
Molly is walking all over the place with her walker. We built parallel bars (out of PVC pipe) and she is walking and swinging with those a lot as well. Yesterday, she too one step from the ottoman to the couch without holding on, which was a first!!
