Meet

Alexandra Kanczuzewski

Alexandra was born on November 9, 1987. She was born Cesarean section. It was a very uneventful pregnancy and when she was born my husband Doug and I were absolutely elated. She was the most beautiful little girl. We felt our family was complete with our son and now our new daughter. The first morning the pediatrician said the nurses noticed some tremors and he wanted to do a blood test to see if maybe there were some metabolic problems. This came back negative. After a day of bliss the second morning the pediatrician came back and said the nurses noticed the tremors again and suggested doing an ultra sound. This is when we found a cyst in place of the corpus collosum. She then had a CT-scan it was then determined to transfer her to San Diego Children’s Hospital where she had a shunt put in at 4 days old.

At six weeks old she began having seizures. This is when we began the seizure medication “dance”. It began with me giving her ACTH injections. Our pediatrician at the time let me practice on him before I gave “the peanut” her shots. We did this for 6 to 8 weeks. They really didn’t work – and so it began. So we started with more conventional medications, now Alexandra is almost 16 and is on Topomax and Tegretol. This is working okay. At three months we realized she was visually impaired. We also set her up with physical therapy and occupational therapy.
After the shock of that first year we found out she would need back surgery and she had hip surgery when she was four. She hasn’t had anything after this. She has been fortunate. Her shunt continues to work, or has just stopped working and her body doesn’t need it.
Alexandra has an older brother, Nicholas, who is 19. He is in college in Arizona and we all miss him very much. Whenever he comes home Alexandra is always very vocal, she knows her brother!
A typical day consists of going to school. She has a stander and gate walker. She likes the walker. The class has 20 students. The bus comes around seven and brings her home at three. On Tuesday mornings I take her to REINS. This is a wonderful therapeutic horse-riding program in Fallbrook. She has been doing this since 1999 and she loves it!
The people in this community are wonderful. I frequently have people come up to Alexandra and me when we are “out and about” and ask how she is doing. Of course, sometimes they will just say what a pretty young lady she is becoming – this just warms my heart. Alexandra touches people in ways I can’t even imagine. I know having her be a part of our family has enriched our lives beyond belief. I’ve become a better person because of her. For someone who doesn’t speak I am amazed at her communication skills! It just takes some time to get to know her because she isn’t an “in your face” kind of person – but rather a gentle soul.
I thank God every day for both of my children. Alexandra is a sweet girl. She brings alot of joy to our family, and she has a smile that can just melt your heart.

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