Gettin' Ready

I really haven't posted in over a month and I truly apologize for that. I know that I sounded a bit morbid during my last post. However, the stress had truly gotten to me - just call me Urban Meyer without the salary (poor guy, I can feel his pain). Anyway, there is possibly a light at the end of the tunnel and we are all running towards it.

Dear daughter was transferred from Shands UF to Wolfson Children's Hospital in Jax the week before Christmas. Shands UF has been wonderful to us and their team has worked very diligently. However, they just needed us to get some other opinions and come up with another plan. So, we came to Wolfson because it is close to our home and has 1 of 3 federally funded hemophilia centers in the state of Florida.

We received some new ideas, good wound care and even tried an experimental med instead of Humate-P for daily infusion (unfortunately, it did not work). But all of the docs at Wolfson agreed that the daughter needs to go to Johns Hopkins in Baltimore and see the best. The best hematologists, geneticists and orthopods. So...it is being set up. Wow! It is all happening so quickly, it's hard to wrap my head around it.

We have an appointment on the 5th with ortho, but we are trying to push it back a week as there are no non-stop flights until the following week. She needs a nonstop because she has to take infusion before she leaves and after she gets there. Whoa, if we get stuck somewhere because of weather, etc.... Gotta go with the nonstop. Also, while we get along famously, don't think it would be a good idea for ex-husband, current husband, myself and daughter to all drive up together for 12 hours.

I'm worried about how to tell my principal that I may need to take some time, when I don't know if I will yet. This is one appointment - how many more will there be? Will she be admitted at some point? These are all unknowns and I don't want to rush into a FMLA unless I have to.

We feel blessed that everything has happened so quickly. It's scary, but calming at the same time. Will keep you updated. Any advice on Baltimore or Johns Hopkins would be greatly appreciated!