Mayo Moments

Thursday, 18 October 2012

Small Update

Leah has been doing quite well at school and she has only missed a few days!  Granted, she has many mornings where she isn't feeling well and would really prefer to stay home, but we are strongly encouraging her to go and give it a try.  Always with the understanding that if she can't handle it she can come home.  So far so good!  Her teacher sends home notes full of positive reports too!

Her last round of bloodwork and a look at her behaviour patterns showed that we needed to increase her medications. She now takes a larger dose of her anti-seizure medication in the evening.  Hopefully this will help with the night time seizures she is having that are causing her so many sleep disturbances.

As well, we have just upped her thyroid medication as the blood work showed her thyroid was still having to work too hard.

We have made contact with Epilepsy Niagara and joined both the parent and child support groups.  I think this will be helpful for all of us.  We went to our first set of meetings on the weekend and have already learned so much!

Leah is having regular appointments with a massage therapist to help with her muscle and joint pain, and it seems to be helping an awful lot.

She has appointments with Neurology and Endocrinology over the next couple of weeks and this will complete the passover of information between the Mayo Clinic doctors and her medical team here.

We have an MRI booked for January to see how/if the disease has progressed there.

All in all, I feel Leah is in pretty good shape.  Things aren't perfect, she still has episodes, symptoms and seizures, but it is much better than it was!

Leah and her sisters are busy planning Christmas treat bags for the families that will be staying at the Hamiliton Ronald McDonald House over the holidays.

They are also helping me organize another donation to take to them when we have to go to McMaster next week.  We are collecting sample sized toiletries, toothbrushes and toothpaste.  They are in particular need of  toothbrushes and toothpaste.  So if you are like me and have a drawer filled with unopened samples that you will never use, just let us know and we will arrange to pick them up!

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