There’s nowhere to start with Alaina's story, except at the beginning. When I was 5 months pregnant we were trying to find out if she was a boy or girl, and in the process discovered that she had a club foot. We then went to a specialist and realized that her hands and fingers weren’t really moving much. In fact, she wasn't moving much throughout the entire pregnancy, but she was my first so I thought it might be normal. They weren't sure what the problem was. They told us that to find out for sure if she had brain damage, they would have to take some of the amniotic fluid, but we would risk losing the baby. We weren't about to do that so we went throughout the rest of the pregnancy unsure of exactly what was going on. There were many guesses as to what it may have been, but no one was really sure. When she was born, we then realized all of her fingers on her right (except her thumb), and all but her middle finger and thumb on her left hand were gone. She also had a club foot (which isn't actually a true club foot because it was caused by the bands), a very odd lump on her leg where it looks like one of her fingers may of fell off and reattached itself to her leg (they still aren't sure about it), and one of the bands had also attached itself to the back of her head causing her brain to grow abnormally. They immediately rushed her to Seattle Children’s and she was there for a bit while they tried to get her to eat and figure out what all exactly was wrong. She couldn't suck so she had to be on a feeding tube for a while and she was jaundiced.

At 4 months of age, we took her back and she had brain surgery. The back of her head where the hole was didn't have any brain sac, so they actually had to remove part of her skull from the left side of her head and place it over the hole. They had to cut off the extra brain she had there. There was nothing they could do about the fact that the right side of her brain is significantly small and the left side of her brain is extremely huge and makes up for the loss in the right side. We were all unsure what her development would look like. If she would be able to talk, run or even function. If she would eventually stop developing altogether. They didn't know and we are still pretty unsure but it seems promising. She had to wear 12 casts to correct her club foot, she had a surgery on her hand about 6 months after her brain surgery, she had an additional surgery on her hand and foot after that (she also had web toes and they had to separate one of them), and we aren't finished. We just found out that she will need another, more major surgery, on her club foot and needs to have the lump removed as well. Currently she attends Kindering Center and has since birth. They have been amazing! She didn't walk until last August when she was 2 years and 3 months old but not her club foot turns in when she walks so it's difficult for her (this is the reason behind the next surgery). We also just realized that her club foot (left) is significantly smaller than her right. They think it could be because of the lump on her leg. Maybe it's constricting blood flow but they are unsure. She recently turned 3 will be graduating from Kindering then attending St. John's Preschool with the help of a "shadow". She still has speech, motor, fine motor and cognitive delays, but not near as bad as we thought they would be. She is a smart girl and means the world to us. She has a little brother now and is so loving and caring of him. She is just full of love for everyone. She is always giving hugs and kisses and waving to passersby. She is a true blessing to us. At first it was very difficult adjusting, and we still have our moments where it is, but we don't see her problems anymore. We just see the sweet, loving spirit that she is. The only time we realize she has issues is when we see her struggle or when people talk. It is hard with little children because they tend to be a little more blunt or cruel about their words to her than others. It's hard when little ones call her "weird" or "creepy", but we love her so much and only hope that she will always be happy and positive and overcome all the obstacles she has yet to face. Every day is a new experience with her and every time we see her do something new (even the smallest of things), it's like another door has been opened for her. It's such an amazing experience.
Mom