Hit the Road Jack...

It has been while since my last post. I have had so much to think about/organize that I haven't made the time to write.

We are getting ready to head to Omaha on Wednesday. This is a BIG visit. We have such high hopes that we will get some answers to the questions that we have had since Molly was born. Our trip to Maryland in June was not at all what we were hoping. We left with at least as many questions as before the visit. It is so frustrating to be relying solely on local doctors, who have very limited experience (less than 20 patients EVER). Thankfully we have an online community of other parents to post questions to. This has been an invaluable resource, but it isn't the same as a doctor who understands the big picture and all of the nuances of each of these kids. OI looks different for every person. It is hard not knowing what Molly's future will look like. I have no concept of what she will look like when she is 10 and 20, nor do I have any concept of her capabilities and limitations.

I have so many questions floating around in my head. I am so hopeful that we will get answers to at least some of the questions we have. They will be doing blood work, x-rays, etc. at this appointment. We will be meeting with PT, OT, a nutritionist, endocrinology, orthopaedics, and possibly audiology. PLEASE let some of these doctors help shed some light on what is ahead and what is needed for Molly.

The big motivation for this appointment is to meet with Dr. Esposito, the pediatric orthopaedist. We will be looking at x-rays and discussing when we will do Molly's rodding surgery. We will learn more about the procedure (I hope) and the risks and recovery process etc. It is frightening to think about putting her through surgery when she is so tiny. I don't want to send her through that door. I know that she will benefit from it, but it is still a very scary risk. I know talking with the surgeon is going to make it that much more real.

We are also going to meet with Dr. Plotkin, the pediatric endocrinologist. We met him this summer in Omaha at the conference and liked him IMMEDIATELY. What a wonderful and caring man. He started in Montreal at the Shriner's hospital where they developed the Pamidronate treatments that Molly receives every 8 weeks. He has moved to Omaha and changed the dosage of PAM (Pamidronate) to 1/2 of the montreal dose. Many families have switched to this new dose. Montreal has found that, at their dosage, kids need to take a break after 4 years. During this time kids have a lot of bone pain and often an increase in their fracture rate. Dr. Plotkin has found that going to half of the dose seems to allow kids to stay on the drug continuously without needing this stop period. We will be discussing switching Molly from the Montreal dose (that she has been on for a year) to the Omaha (half) dose. Our local endocrinologist does not feel comfortable switching away from the Montreal dose until Dr. Plotkin has published his findings. I respect her opinion, but also want to do what is best for Molly. If we choose to switch protocol we will also be switching to doing her infusions at home. A lot to think about, but also the potential to have some great benefits for Molly. It would be nice not to have to expose Molly to the germs of a hospital 6 times a year, but we just need to think through the risks and benefits of changing away from the current standard. I hoping that through talking with Dr. Plotkin that our decision will become clearer.

As for Molly, she is doing very well these days. She seems to have recovered well from her rib fracture. She is now officially mobile! She is EVERYWHERE!! Jim and I have started babyproofing, but have a long way to go! She is crawling all over the house (several feet at a time). She wants to pull on everything and is especially interested in all of the remotes we seem to have. She is now saying Dada a lot, "dodgie" for dog, ba for ball, ma for more and is working on saying something for cat/kitty. She can show you where her ear is, mouth, hair, barrette and can point at lots of things in her books. We still need to work on expanding her signing vocabulary, but she is getting there!

I know that there is more to report, but she is upstairs and awake and babbling up a storm. There are new pictures online and I will post some later.

Hope you are all well. Write if you can!