When Alyssa was born, we were living in a small single room kitchenette. We had a crib and a baby swing set up for her and we were anxious to bring our new baby home. That day, we went through the usual stuff new parents go through like learning to change and bath and feed her. All went quite well until night fell and the blood curdling screaming began. Now, I had heard that babies cry for certain reasons. They may be cold, hungry, wet, or gassy. So when the baby is screaming, you go through all that you know to figure out what she needs. Well, during the night, nothing seemed to work for Alyssa. No matter what we tried, this child screamed at the top of her lungs, sometimes for 5hrs straight!!!!! Needless to say, after about a week of this my husband and I were exhausted. Everyone we knew (including doctors) told us it was just a bad case of collic. My instincts were telling me it was much more than that but no one had an explanation other than collic. The only time she stopped crying at night time was when I took her outside. I spent countless nights walking back and forth outside just so my husband could sleep enough to make it through a days work. I slept when she slept (except at night cuz I was walking) which was usually in 20-30 minute intervals throughout the day.
When Alyssa was about a month old, we had saved enough to move into a 2bdrm apartment. We were hoping that putting her in her own room would help her get into better sleep habits. Friends, family, and doctors had told us to put her in her own room and let her cry it out and eventually she would fall asleep. It didn't quite work that way with Alyssa though. I couldn't bear to let her scream for more than an hour. She decided that the only place she wanted to sleep was on my chest or in her car seat. Most of the time I would have her fall asleep on my chest and then ever so carefully place her in her seat once she was asleep. This was the only way to get peace from all the screaming. We always knew when she awoke from a nap because the screaming started up again. Then on February 1st 1993, (when she was just over 3mos) those maternal instincs kicked in again and told me it had been too quiet for too long. Alyssa should have been up from her car seat nap by now so I went to check on her. She was in her seat, her eyes were open, and she wasn't screaming! Her eyes seemed to be rolled up in the back of her head and when I picked her up, I noticed that she seemed to be gasping for air. I quickly handed her over to her dad, told him there was something wrong, and picked the phone and dialed 911. Within minutes, we were bombarded by EMT's, firefighter, and police! My husband seemed to be frozen with shock and I was just scared and crying hystericaly. The paramedics worked on her for a few minutes and the next thing I know they are taking her out and loading her into a life flight helicopter. I had no idea what was going on. I was consumed with fear that I might lose my precious baby girl. I was so out of focus at that moment that to this day I have no memory of the huge helicopter in the parking lot. I can still hear the sound of it but there is no visual memory accept that of the EMT holding his hand out at me and saying that I could not go with my baby girl. They told me they were taking her to St. Joseph's hospital and we should get there as fast as we could. Now, St. Joe's was about 45min away and we were faced with rush hour traffic in Phoenix. I think it took us about 1 1/2hrs to get to the hospital. When we got there we couldn't see her. They had her in intensive care and they were trying to determine what had happened to her. After a few more hours of agonizing waiting, a doctor came out and explained to us that Alyssa had had a seizure and they were trying to figure out why. They kept her at the hospital for 5 days and ran a multitude of tests on her. It was so hard watching her be poked with needles just about everywhere they could find a vein. They ran a CAT scan on her brain and finaly were able to determine that she had a very rare congenitive brain disorder called Sturge Weber Syndrome. The doctor explain to us that he had never encountered this disorder before and that there was no known cause and no cure. We were quite devastated! We were still coming to grips with the fact that our beautiful baby girl had this huge purple birthmark on her face and now we were told she would probably have seizures for the rest of her life and possibly a lot of other undetermined problems. The doctor explained that she would have to start taking seizure medication to stop the seizures from occurring. So he gave us a prescription for Phenobarbital and sent us home. We barely had enough time to soak in all this new information when it happened again. It had been only four days when I noticed the same behavior again, shallow breathing and eyes rolled back in her head. So again I called 911 and again they rushed her to the hospital. The doctor told us this might happen a lot until they could get her medication levels accurate. He was right about that. She had 7 seizures during the next six months all of which sent her to the hospital for several days each time. The first year of Alyssa's life was very difficult for all three of us. When she wasn't in the hospital, she was screaming and when she wasn't screaming, she was in the hospital.
Developmentally, Alyssa was a bit delayed. She started rolling over at about 4mos, sitting up at 6mos, and crawling at about 8mos. She seemed to have slowing on the right side of her body and she heavily favored the left. She cut teeth early at 3 1/2 mos. She was always a good eater. She was on baby food at about 6mos because she hated baby cereal and formula just didn't seem to be enough anymore. She never breast fed because she just didn't seem to want to! Her most contented moments took place outside. For some reason she loved the outdoors. When she was outside, she stopped screaming and took the time to observe her surroundings. These were the cherished moments when she smiled and laughed and seemed genuinely happy. Subsequently, we spent a lot of time outside!
Alyssa started walking at 14 months old. We were so thrilled because the doctor had told us it was possible that she wouldn't walk because her brain was damaged in the motor coordination part of her brain. She had a tough time of it and for years tripped on her own right foot and fell down a lot. But, we were just thrilled that she was walking and kept close to her at all times to catch her when she fell. She did pretty well on flat ground but she couldn't go up or down a step without assistance. I guess we were a bit paranoid but we were told that a blow to the head could bring on seizures or worse. Of course we felt it was our duty to prevent this at all costs. I felt that maybe she was being held back by the medication she was taking. I had heard that Phenobarbitol had a lot of side effects including slowing of the learning process. So I asked the neurologist about it and he was convinced that Phenobarb was the best med for her and didn't recommend changing it. So, of course, I went for a second opinion. This other doctor told me I could be right that the Phenobarb was causing side effects and if I wanted to wein her off the phenobarb and try another med I could. So we put her on Tegratol and lo and behold within a couple of months she started sleeping at night and her seizures became more regulated. During the second year of her life, Alyssa only had two seizures. She was now doing quite well. She started to learn things like numbers and letters and shapes and her speach was improving tremendously.
