So, I am sure the rumors are flying. If you haven't heard we have decided to move to Boston. This has been such a hard decision for us. We tried Boston, and returned to CB with the hopes of never having to move again. Crested Butte is our home, but unfortunately little John has not only challenged the services he has been receiving in CB, the Doctors at Children's has told us there is nothing they can do for him at this time. I am just not the mom that can take that and sit her while I rub his back everyday while he is sick. I have to do everything possible to get the care he needs, and getting him to Boston only makes sense. In Boston, we can visit with a whole new team of doctors to see if there is anything that can be done. He will also receive the therapies that he needs. There are support groups for parents of children with Mito that Johnny and I can benefit from. We can also eventually get John into a school that can take care of kids with special needs. This way I can eventually go back to work.
We are planning on leaving at the end of November depending on health insurance. John obviously can't go a day without insurance, so it has to be completely set up in Boston before we can go. I have begun to look into schools for Sienna, they are a bit expensive, so this will be a challenge for us, but will have to make it work. We did find her a wonderful ballet school which has been helpful in getting her excited about our move. I will have all therapy set up for John so that we can get going on that asap.
As most of you know this will be extremely hard for our family, so I hope you all can be supportive of our decision. I really did not plan of having to move from CB again, but we know that John is just going to struggle here. Johnny, Sienna, and I can fit in anywhere, but John can't. I have tried everything to make this work for him here, but he is just not making the progress that I would like to see. So hopefully we can find the help and answers we need in Boston, and if that miracle happens that we all keep talking about, then we will be back!
I will continue to update John's site, so please keep thinking about us. We will still need all the support we can get, and will miss all of our friends in CB. It is like having a big extended family here, and we will miss every bit of it.