All about the timing

>> Thursday, September 29, 2016

Today this video came across my Facebook feed:

http://youtu.be/tmWfJR4KrDI

I began to tear up at her response, at his joy, and the school cheering for them both. Genuine. Touching. Love.

And then I began to think about Bug. I had just given him his SECOND dose of rescue medication in 12 hours and the tears went from 'how touching' to 'it will never be'.

The grief sets in again. With the renewed possibility of helping Bug, the seizures being OFF THE HOOK while he is asleep are even more difficult to deal with on an emotional and physical level.  He will get to visit Johns Hopkins and he will, hopefully, get the help he has been waiting for.

I have created a list of things to check for our little man. It reads:


ESES – Seizures almost exclusively sleep-dependent.
            FRa – Folate Reductase Autoantibody – Immunology
Ears – has not had a detailed MRI of his inner ear and with KBG syndrome it is of GREAT concern that a malformation was missed since he CAN hear.
Stomach – he needs a scope. With KBG he is more likely to have stomach issues and with the gagging episodes that started last year, they may or may not be attributed to the Epidiolex.
Teeth – Glenn has to be sedated for exams and since his broken jaw, he has not seen a Dentist.
Orthopedics – Glenn’s seizures may not be the sole cause of the tightness in his ankles but Botox was recommended in Utah. With KBG we also need to look at his hips and ribs.

Full body MRI?


I am reminded with each seizure that I have let him down so many times I can't begin to count. I can say: The Doctors should have...but it still comes down to me making it happen. So I will make it happen and maybe...this video could be of Bug smiling because a sweet girl asks HIM to dance. Odds are not good that will ever happen but...one has to try to make miracles and not just sit and wait for them to happen.

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Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

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