So the on September 15 we returned to Sick Kids for Piper to get another EEG. She has been having these sets of spasms that last around two minutes where she brings her arms up in front of her and her head flies forward. These are what we think are infantile spasms. I recorded it on my cell phone to show the doctor.
After the EEG the doctor analyzed the results and came to speak to me. He said there wasn’t much difference in her EEG from the week before. He still saw the hypsarrhythmia (unorganized brain) and after I showed him the video on my phone he said that they are definitely infantile spasms. The thing is with Piper her EEG pattern isn’t really typical of what they see in children with infantile spasms, but her physical symptoms were typical of infantile spasms.
So the next step was that he wanted her to go on Vigabitrin which is an anti-seizure medication that helps with infantile spasms. This is the medication he wanted to put her on before and causes the tunnel vision in a small amount of children. So now Piper is on another medication. It’s like a chemistry class every morning and evening in our house. She is on 6 different medications at different times so it can get confusing.
So at the end of September, after two weeks of Piper being on the Vigabitrin, we returned to Sick Kids for yet another EEG. The results were the same. Physically she was not having the spasms anymore, so the medication helped with that. But, on the EEG it remained the same. The medication was not helping with her unusual hypsarrhythmia. Bad news. They decided to keep Piper on the Vigabitrin due to her physical symptoms being eliminated. There was nothing they could do for her unorganized brain.
On October 21, two days before her first birthday, Piper had an ERG (electroretinography). This would determine two things; a) If Piper had any problems with her vision and b) Would give us a baseline used in the future to determine of she was getting tunnel vision from the Vigabitrin. She had to be put under general anesthetic for the procedure. My Mom came with me as Bay had some important work meetings to attend to.
It was hard to see her go through all this but I knew it would help. The results of her vision test is that Piper can see fine. Her optical nerve is a little underdeveloped but there is enough there that whatever messages her eyes are picking up it can get to her brain. Now what happens when it gets to her brain is another story. We obviously have no way of finding out what her brain is doing once the optical messages get there. And we may never find out.
Two days after her procedure, on October 23rd, we gathered family and friends to celebrate Pipers first birthday. It was amazing. My little girl that could was turning one and I was so proud of her.
It took a lot for me to get through the day. Emotions took over when I thought of her coming into this world on that day a year ago and things were so innocent then. The emotions on that day a year ago were pure, untouched. There was no tears of sadness, only happiness and thoughts of opportunity and wonder were swirling around. Ugh it was one of the most wonderful times of my life. Little did I know it would be snatched from me three days later, at least I had three days of normalcy with my baby.
Anyway, back to the party. Overall it was a success. Piper slept for the first little bit. Guests took turns holding her and watching her sleep. The last hour she was awake and we sang Happy Birthday to her and opened gifts. She stayed awake long enough to get through a few gifts. She did really well.
As for now Piper is doing better. She has her strong days where she can sit up assisted and some days where she just wants to sleep. Her head control is much better and we are now working on her trunk control.
Every new day is different then the last with Piper. I’ve learned over the past year to take it like it is. I have no expectations of what Piper can achieve but I do have hope that she will get there.