Wednesday, October 12, 2011


Mommy and I started practicing today for what it will be like when Grandma is on vacation.  Mommy keeps telling me that we can't sit home all the time, that we have lives to live should be thankful for that.  So off we went.....running errands, going to the store (not grocery - I still can't handle that one yet), picking Aidan up from school and letting him play with his friends for a bit, and today we took him for a hair cut.  I did great for the first part of the day.  There was not much time for me to really get a good nap so by the time we were able to get Aidan from school I was pretty much put out.  So the fussing began and then the crying started.  The drive home from Aidan's haircut was very difficult.  I was so lucky to have Aidan in the back with me......he just leaned over, rubbing my foot and said all the way home, "It's alright Nezbah, we're almost there."  Mommy was so proud of him she began to cry while telling him what a wonderful big brother he is.  I have to agree, he always rubs my feet in the car and wipes my drool without anyone having to ask him.  He looks out for me all the time.  Boy am I ever lucky.

After we got home Mommy received a phone call from my Neurologist.  He has been out for sometime and had heard that we canceled my EEG and was call to check-in on things.  He told Mommy that another doctor wanted to use my case for a conference that she is going to but Dr L (my doc) told her no since he now feels confident that I do NOT have Ohtahara Syndrome(OS).  Mommy just smiled and said "Tell me something I don't already know!!"  It seems now that since they don't feel that I have OS they are really interested in my case......wanting to do an EEG to "check things out".  Mommy said NO!! and that unless something changes with my condition we will not schedule any Neuro doc appts until after the holidays.  Keep in mind there is still something not right with my brain waves......the doctors just have no idea what it is or what it means.  They are stumped that I have progressed this much.  Once again all Mommy and I can say is thank you to everyone who has been praying and sending good thoughts and energy.

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