An Announcement

We interrupt your regular programming for an announcement: After 7 months of suspense and a year of looking for a new job, WE ARE MOVING!Not to the White House, but don't rule it out. Just give it a couple of years.

If things seem hit and miss around here, it's reflective of my mental state. When I am not consumed with the immediate future and caring for my Superhero (AKA Cole), my thoughts are geared towards this impending change. After "crying wolf" for so long, Brian got offered not one, but three jobs in one week! Apparently, now is the time. We chose DC for multiple reasons, now the worrying begins.

Top of the list-Where will we live? There are so many specifications that we need for Cole and his dog when it comes this fall. Distance to the hospital(s), fire station, metro, church, grocery stores, etc. play a part. It will be hard leaving our support group, not having 10 Dravet families within an hour (There are only 3 families in the whole state of VA). It's scary! It is also exciting!

I need a new: gastroenterologist, cardiologist, opthamologist, dietitian, pediatrician, speech therapist, occupational therapist, neuro-pyschologist plus all of my doctors. Brian doesn't need specialists...or doctors really. The guy never gets sick, which is convenient! I'm predicting at least three months of constant doctors appointments trying to establish care.

Have neurologist. Check. I think that is the only thing I can check off of "the list".

All of the little things that are entailed in a cross-country move add up. I've done quite a bit of moving in the last 10 years, but nothing ever this big, with this many people. The last time we moved Cole was 7 months old, not really mobile, and it was about 20 minutes away. I'm going to have to dust off my organizational skills...they have been put in to hiding. It has been stated that we will need a magic wand to get everything out there that we have here. Um, I agree. However, when I am in the throes of being overwhelmed...I think of Cole. This is the best thing for him. It means so many new and exciting things can happen, for him.

As far as we know, our new insurance covers Miami Childrens In-Network!
A new school! I will just keep that nasty little (read: BIG) IEP post about our current district kept in my drafts!
We have loved our doctors here. However, there is no one that specializes in Dravet. There will be someone in our backyard and we have already made contact. This way, when we are in-patient, someone will know what they are dealing with.
VA Medicaid covers Frisium and Stripentol-two drugs that are not FDA approved and have to be shipped from Canada and France. We really think these drugs will help!
More therapy!
and my hope of hopes...RESPITE! This sends shivers down my spine ;)
We'll be there just in time for the National Epilepsy Walk and close to the IDEA League's headquarters. Hopefully, with our skills we can help support these organizations that have been such a support to us.

This is not just for Cole, it's a good career move for Brian too. I am looking forward to him not being on-call 24/7. His CNN moments are just going to have to stop for a little while. Twice in one month is enough! ;) So, we are making our preparations. If anyone has any tips, tricks, or knows medical personnel out there...drop us a line!