Mayo Moments

Saturday, 9 February 2013


Not really much to update on.

Upping Leah's seizure medication for her night time dose has made a huge difference.  She is sleeping better, which means that we are no longer dealing with her sobbing every morning before school.  It isn't that she didn't want to go to school, but that she just felt so darn tired, sick, blurry and dizzy every morning.

Leah's appointment at London's Sick Kids was about what we expected.
They are not willing to acknowledge the diagnoses given by Mayo Clinic.  They will not consider further treatment until they can be confirmed in Ontario.  So very, VERY frustrating!  So for now we continue to treat the symptoms instead of the cause.

We have a week long inpatient admission to look forward to in April.  She will be going in for another  Video EEG.  But the biggest difference is she will be able to be mobile for this one.  In fact they are encouraging her to be since what they are really trying to capture are the moments when she suddenly falls (Negative Myoclonic Seizures) - they need to see exactly what is happening in her brain when that occurs.  She will be up playing in the playroom, doing school work in the classroom and just walking around.  We will have to wean her from her medication prior to the admission so the weeks leading up to the VEEG might be a little yucky.

No forward motion on the biopsy yet, I will be speaking with the doctor on Monday to get that sorted out.

Next weeked Leah and her sisters have been invited to participate as background actors on a film shoot.  One day they will be in a semi-formal dance scene - so lots of girly dresses, pretty hair and sparkles, and the next day will be gym and classroom scenes.  We are turning it into a "Girl's Weekend" and staying in Toronto at a hotel with a pool (I promised the pool part!  Come on Priceline....get me a good deal).  They are so excited!  I am sure we will have some pictures to share from all of that.