Little Miss Smarty Pants

Molly is now officially a toddler! She is everywhere and into everything. She is getting more advanced by the hour. It is amazing to watch. We put on a "Baby Einstein" video tonight and I was amazed at how much she was saying and signing. She was saying "kitty", "bowl", "cup", "table" and a few others and was also signing for refrigerator and telephone. Her vocabulary seems to be going through the roof!

We have been using her "Star Car" (pre-wheelchair) the past few days and she is able to go several feet with it. I stand in the back to help steer and she can go all around the room. I think she is definitely close to being ready for her own wheelchair. It would be wonderful for her to be able to explore places that we go outside of the house.

Two of her bottom teeth are about half of how big they used to be. I hadn't been checking on them like I guess I should. We have an appointment to see her metabolic dentist next week. I am dreading the meeting because I am worried he is going to suggest we consider capping her teeth. From what I have heard this is a $10-$20k process and isn't covered by dental or medical insurance.

We also received a letter from our insurance company yesterday telling us that they consider her Pamidronate infusions to be experimental and will no longer be paying for the treatments. This makes my blood absolutely BOIL! This was after having no problems with 9 infusions that were costing them about 10 times as much as the at-home infusion. We have asked so little of them and I am infuriated that they can do something as cavalier as to send an impersonal form letter stating that the treatment your child so desperately needs will no longer be paid for. We are already working on collecting documentation to provide them with to show that Pamidronate is an accepted and necessary treatment for OI. The nurse in Omaha assured me that she has never encountered an insurance company that refused to pay for PAM treatments, which has given me at least a little peace of mind.

So it is definitely a mixed bag at our house, but I am happy that Molly is doing so well and developing so quickly.

We are trying to arrange an OI gathering here at our house the weekend after next and are happy to have had a better response than we expected. I didn't know how many families I knew, or at least knew of, until I started working on this. I think we will have somewhere around 9 families here - hope for good weather or it will be a little tight!! Most of the families seem really excited about the prospect, which is what I had hoped for. It should be a great time for everyone. :)