Showing posts with label EB Clinic. Show all posts
Showing posts with label EB Clinic. Show all posts

Thursday, September 16, 2010

A few things.....all about Peanut

I do not have much time today. I really should not even be here now but I need a break from this crazy project I am doing for work.

- Jackson is rolling over. He is rolling from his back to his belly. When he gets onto his belly he screams. He HATES being on his belly.

- Jackson is cutting teeth. Yuck. Last night was terrible and he was up every. single. hour. My new best friend is Hylands Teething Tablet! Thanks Angie!

- I am super happy to tell you all that we are going to Ohio in December. Jackson will be seen by a team of doctors that  know all about EB. Cincinnati Childrens EB clinic is one of very few EB clinics in the country. I have talked to a few people that have been already and they LOVE LOVE LOVE it. Often the parents know way more than any local doctor about EB. Even though Dr. W is amazing and takes very good care of my children, he asks me questions about EB and how to care for Jackson. EB is just SO RARE that there are not many people that know about it, much less specialize in it.
Now for the fun part- getting it all approved with our health insurance. We will be seeing several different specialists and each requires a separate co-pay. Hopefully since we are double covered we won't have to pay a penny. Going out of town in December is crazy enough!

- Speaking of EB being rare, an EB friend of ours is doing a fundraiser in order to raise money and awareness for EB. Head on over to Chris' Dunk Tank page and vote for an idea or submit an idea of your own! Chris will be doing whatever crazy dare wins in October during EB Awareness Week.

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