Tuesday, September 17, 2013

It's been a while...

I haven't written in my blog for quite a while and thought it may be time to update everyone a bit. There have been many changes in our lives since last year. I can hardly remember what I ate for dinner last night so forgive me if I mess it up a little. So here goes…
Last time I wrote I was telling everyone about the surprising EEG results that we received. Pipers EEG showed that her brain has the activity of a normal child her age. It was a great relief and was confirmed by the neurologist at Sick Kids. He recommended that we wean her off of all of her anti-seizure medications which I was excited about. One of the medications she was on had a side effect of hypotonia, which honestly Piper didn’t need more of! As well the drugs made her tired. I wanted to see if this brought Piper out a little more.
So after weaning her off for two months Piper finally came off of her meds in May 2012. From there she made even more progression. She started to make a lot more noises like AHHHH. She started to eat more solids and interact a lot more. The most significant change was when Piper finally sat up unassisted for more than a few minutes. She learned to put her hands down on the ground to support her while she sat. She started to mouth different objects in January 2013 and become more aware of her surroundings at the same time. We did another round of Medek therapy in November 2012 and I credit some of her progression to that. I found that doing the exercises with her really helped her neurologically.
Her PT and OT were transferred in January 2013 to Bloorview MacMillan Children’s Rehab Hospital. Honestly one of the best, if not the best, kids rehab hospitals in Canada. So we were lucky to get the expertise from the therapists and doctors there. She has progressed slowly and can now sit on the ground unassisted and play with toys. I still need to keep pillows around her in case she loses her balance and falls but I’m proud of her nonetheless. We also bought a stander for her that she is just getting fitted for and will be using that daily. The PT wants her to go in it at least an hour a day to get her used to standing. It’s quite a contraption and I’ve put up a picture so you can see what it looks like. Bloorview also has a nursery school that Piper just started attending last week. I’ll write more on that in my next blog.
As far as finding out what is wrong with Piper we’ve met some new people and received some advice but haven’t succeeded yet. In January 2013 Bay and I were privileged to meet with Dr. Cohn at Sick Kids. He arrived in Toronto in September 2012 and Piper was one of the first children he saw. You see Dr. Cohn started the Hypotonia clinic at John Hopkins in the US which was the first of its kind. It was created to help families figure out why their children have hypotonia and to support them with the care. He has come to Sick Kids in Toronto to continue his research and has created the Movement Clinic here. We knew he was coming for months as Pipers pediatrician had told us. Read more about him here. Any who, I cannot say enough kind words about Dr. Cohn. He was honestly the first doctor that Piper has seen that I felt truly cared about finding out what was wrong with Piper. He is also the only doctor that ever turned to my husband and I and asked “How are you guys doing?”. It took us by surprise but my husband and I looked at each other and I burst into tears. Wow, someone actually asked me that and they are right…how AM I DOING?
So it turns out that Dr. Cohn holds hypotonia close to his heart as he has dear friends that have a daughter with hypotonia and don’t know why. And THAT’S what we need more of…passion! Passion to understand and passion to find out for the child and the family. I’m so glad that Dr. Cohn is here and will be speaking for Piper. In the time since we saw Dr. Cohn, Piper has had a muscle biopsy and another MRI. Both came out normal. Dr. Cohn feels that our next steps are to perform a microarray of Pipers DNA. Unfortunately the government will not cover this in clinics as it takes a lot of time and money. As my husband explained, it’s like decoding an ancient language and then asking someone to translate it into English. If you don’t know what any of the words mean in the first place it’s going to be a hell of a job. So our only choice is to try and get into a research study of some sort. We need someone to be able to look at the millions and millions of pieces of Pipers DNA and decode it. But until we find someone willing to do that we are at a standstill.
So I will leave this post for now and next post I will tell everyone about Piper going to nursery school for the first time!I leave you with a beautiful picture of Piper from our trip to the cottage this past July.