January 6, 2010

Quickie Update

First of all, yes, we are alive. The past week has been extremely challenging for our family, and in my typical fashion, rather than talk (or blog) about it, I was buckling down and trying to problem solve. Well, the problems are not solved. Gasp! I am not perfect! ;) But, I feel we have recovered significantly--at least I have a moment to sit at my computer. Here is the rundown:

Thursday 12/31
Bertrand had his first tonic seizure. Mama desperately hopes this is a one time occurance due to the holiday excitement.

Friday 01/01
Bertrand has two more tonic seizures. After some panicked email correspondence, his keppra is near doubled to 375ml.

Saturday 01/02
Bertrand is hyper, jittery, nasty, and has increased myoclonus. No tonic or atonic seizures though. He begins to nap only ONE hour all day and loses ability (maybe refuses?) to sit or spin. He earns the nickname "demon baby".

Sunday 01/03
The demon baby rampage continues. Bertrand is super jittery, vicious, and has even FURTHER increased myoclonic seizures, but no tonic or atonic seizures. He is still missing the ability to sit, play with toys and smile.

Monday 01/04
Demon baby is given a dose of B6 which, according to Elizabeth (my keto guru from N'awlins), helps with "keppra rage". Bertrand takes TWO one hour naps and has one less myoclonic seizure from the day before, sits aided and has a brief 10 second spin session!

Tuesday 01/05
Phew! With lots of B6, sweet Bertrand makes a come back! Only 3 myoclonic seizures! He smiles again, spins freely, and can sit better. His therapist notes that Bertrand's aim is like a drunk's. He takes 5 hours worth of naps. Mama is MUCH relieved.

Wednesday 01/06
Bertrand is sweet and flirtatious at therapy. His actions are still drunk-like. He is back to sitting and playing with toys. He is back to taking naps. Myoclonus are down to 2. Mama is excited to be getting a trial of the KetoVolve formula in the mail soon!

Thursday 01/07
Bertrand will have an intensive 4-hour evaluation at the Carmen B. Pingree Center for Autism. This will determine his eligibility for their 3 hour, 3 times a week autism clinic. Mama would attend the pre-k with him! If there were ever a grade I would like to repeat--pre-k is it. ;)

Friday 01/08
Bertrand has an appointment with rehabilitation doctors Judy Gooch and Allison Oki. They are bound to be impressed by his 2 hours per day in the stander, and his correspondingly improved hips and feet!

Next Week
Bertrand has a dentist appointment, visual therapy, physical therapy, occupational therapy and musik garten class.

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