Overview

Thursday 31 May 2012

For those of you who haven't known Emma since birth, I have posted a video I made for Emma's 5th birthday! For a girl who "wasn't" supposed to make it to her third birthday, this video shows how strong my little girl has become!  This is the link, I hope it works on here:  http://youtu.be/knnVUkRxDlU

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!

Friday 4 May 2012

Well this week has not been a good one for Emma.  Started off arguing with the pharmacy in regards to her Glycopyrolate prescription. Of course they didn't send a req. to the doctor like I asked them to last month, of course I am always the one to blame there. So after three days of them apprently being able to find their fax machine, the req. gets sent in. So now starts the arguing with Children's. It didn't turn out nice...and after 3 days of her having no med, her problems start. Excessive suctioning, positioning, drooling, aspirating and oxygen. She started back on the med last night and as of this morning, she is doing really well again. The oxygen is off and she is holding her own very well.

I really don't understand health care, probably never will. Every "mission statement" I have seen says they will ensure the patient recieves the care they need in a timely manner. So I ask....why do this to a child? I was up with her 24/7 so she wasn't choking and gagging, I was suctioning, I was positioning, I was doing chest physio....while they were doing what? Not a care in the world, so sad.  I know I am not alone...this very week another mother is going through a struggle with the health system, trying to get something for their child that will not only benefit her, but possibly save her life.  I have never in my life been so sickened at doctors/sectretaries/nurses than I have this very week.  Put yourself in our child's shoes....or my shoes....see how the stress you cause affects us as parents and our children. Then go look over your "mission statement" again.

I feel a bit better now having said that, but still so dissapointed. Thanks for reading my rant....I promise the next one will be better :)