Captain's Log

I know it has been a long time since I posted, and so much has happened in the interim. Hurricanes and Halloween, new doctors near and far, bidding a temporary farewell to our furriest family member, and myriad blood tests, medicines, and therapies. Not to mention all the "normal" stuff that goes into family life on a daily basis. It has been busy.

But, in my book, busy is (mostly) a good thing. Especially when having too much "down time" leaves me free to worry about the what if's. However, despite the frenetic pace we've been maintaining, life may be about to get crazier. The upcoming schedule of medical tests for Simon (we are hoping both an MRI -- tomorrow -- and his EEG -- this weekend? -- will be able to be done this week) may indicate that we are actually nearing the end of the short calm before the storm.

Batten down the Hatchers!

We were very lucky to make it through the storm without damage, or even power loss. We were happy to share our blessing by making donations at our neighborhood food truck gathering event!

Simon and Tigger were both Pirates for Halloween (of course). Being able to "do" kindergarten again with Simon truly makes me feel lucky!

Saying good-bye to Tigger until March, when he will have finished his training and become a fully certified service dog. We can't wait to have him home!

We have added a new member to Simon's team -- a behavioral psychologist that specializes in helping kids cope with the stress of their medical conditions. Right now she is working with us to help find techniques to help Simon stay calm and be less afraid during scary tests, like EEGs. Here Simon is putting the leads on himself (after he put several all over my head for practice).

We found an Epileptologist to work with us towards mapping for potential epilepsy surgery at Children's National Medical Center in Washington DC. Tomorrow we return there for an MRI to find out if Simon's shunt is functioning properly (he recently started vomiting several times a day, a sign of failure) and to see if the area they *think* the ESES is originating is operable. I'm nervous but trying to stay positive.

Normally, I'm a wait until after Thanksgiving kinda gal. But this year, either in spite of or because of everything that has been going on, I am determined to make it the best Christmas yet. Simon is already asking about Santa and Christmas trees and I am already decking the halls. If anybody else wants to falala -- I am your girl!