Day #2 completed

This has been a whirlwind two days, let me tell you!

There is so much to talk about, but until we get our final wrap-up meeting on Friday with Dr. Sidransky, Dr. Goker-Alpan, and their team, I’m going to just wait. 

We are two days into the four-day heavy-duty testing for Hannah.  She has had a swallow study, sleep-deprived EEG/ABR, echocardiogram, skeletal xray study, EKG, and a neuroopthalmology exam.  Tomorrow is our scariest day, the brain MRI, because Hannah has to be sedated.  I’m scared to death about this, but I know this is important because of the possibility of hydrocephalus.  She also has a neurology exam and a CT scan tomorrow along with the brain MRI.

I am SO glad we came here.  This really was the best, most incredible decision.  Not only are we learning so much more into Hannah’s version of her disease, but many questions have been raised regarding a variety of symptoms, and they are following through so completely on each of them.

Dr. Sidransky is absolutely fabulous, as is Dr. Goker-Alpan and their coordinator, Catherine.  Actually, almost every single person we have met from the neuroopthalmology to the EEG technician to the people here at the Children’s Inn really show how much they care about Hannah and her care.  Many doctors just see “the patient,” diagnose, and move on.  We really feel like they are looking at Hannah as a little girl AND a patient, and they are showing her so much care and personal attention.

Most importantly, Hannah so far has handled this amazingly well.  After every procedure, she is always smiling and bounces back so fast.  My little girl amazes me every day here.  I am just so in awe of her strength and her ability to do what needs to be done and just move on.