Thursday, 17 May 2012

Long week......

Waiting patiently at the doctors. 

Emma has had a rough week again.  First of all, we went to the Children's Hospital in Winnipeg on Friday May 11, 2012 for her neurology appointment.  He was very happy with how far she has come in the last year.  He didn't adjust any seizure medication this time, which is a first!  I am however, weaning her Diazapam. I think it has lost its effect on her so he gave me the go ahead to do that.  She will have another EEG done in six months time when we go back as the last one was two years ago, and I know she has changed alot since then. I am hoping her new EEG shows great improvement.

Sunday comes along and Emma isn't herself. Takes a few hours to figure out what is going on with her. She was so sleepy and by mid afternoon starting clustering.  No fever. She had two Ativan Sunday (afternoon and night) and again in the morning. Then the fever comes and full blown pneumonia. Lots and lots of suctioning, oxygen, chest physio, etc, etc.

She went to the doctor Tuesday and I was so scared he would want to admit her. He told me no need for admittance since she has everything she needs at home...huge sigh of relief! She is on the Z pack, she responds so well to it. She has still been on oxygen throughout the night, although last night was only a couple of hours. Everything seems to be loosening up and coming out now.

However posting on facebook about her caused a bit of emotion.  My son who is 12, was at his dad's house and read my status. He was so scared and thought Emma was going to pass away too. After reasurrance he was ok, and I felt horrible.  Then the response I get from him "Mom, she is like my ONLY sister, the other two just annoy me!" and he makes me smile. What a kid!

One other thing I wanted to add:  I recieved an email this morning in response to a thread I posted in a long time ago.  Just to show you where I was at 2 1/2 years ago. It blew me away! This was my post:
My daughter has Ohtahara syndrome. She is now 2 1/2. Unfortunately, the way I feel at this point is that there is little or no one doing research on this as it is too rare. I wish she had cancer, which is an awful thing to say, but at least there are millions of people and millions of dollars going into research for it. There is a chance of treatment. I need to spread the word on terminal epilepsy illnesses, but have no idea how~

All I can say is "WOW!"

She is being enrolled in a clinical study through Children's Hospital in Boston. I do hope they find out the reason "WHY?" Emma has Ohtahara Syndrome, but I know it will not change anything in terms of prognosis or treatment. I am just thankful someone is finally doing a clinical study on this and I hope it can help families in the near future.

Here is to a happy May long weekend everyone, stay safe and have fun!

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