Brian and I got married and had Amanda at a young age. I was 19 when she was born. I had a fairly uneventful pregnancy. I went into premature labor a month early and was put on medication to stop it. Then Amanda ended up being born 1 week late. She started breathing before she was born. They had to bag her. After that we thought she was fine. She weighed in at 6lbs. 9oz and was 19 and 1/2 inches long. They let me hold her long enough for a picture and then they grabbed her and rushed her to the NICU. The doctor told me she needed extra care. She had fluid in her lungs and was in respiratory distress. They had her on 100 % oxygen. They found that she had a cleft palate and had to be fed by a tube in her nose. When I could see her I noticed her right eye seemed a bit small. They told me it was swelling from birth and not to worry about it.

The second day we were there they came to us at 4 am to let us know they were sending us to Charlottesville, VA. I was very scared. The NICU team came to get her and they left at 8:30 in the morning. We went straight there. I was so shocked at the things I saw there. They really can work miracles. They found that Amanda had a ventricular septal hole in her heart. They expected it to close on it's own. They also found that she had glaucoma and was blind in her right eye, she had extra ribs and they were very thin. She had rocker bottom feet, which have since grown and slight arch. They did not think one side of her face matched the other. She had extra breast buds under her arms which you cannot see. They had to insert a central line in her belly button, which meant no one could pick her up or she could bleed to death. She developed jaundice, and then they decided to do blood tests. This showed a tag on her tenth chromosome and a piece missing from the other tenth chromosome. Meaning they pulled away and damaged each other. We were both tested and the tests were all negative.

We had a nurse tell us they were doing all these tests because our baby was funny looking. I look at her and still only see a beautiful little girl. They finally removed the central line when she was about 2 weeks old and Brian got to hold her for the first time. They sent her back to Winchester's NICU on 9/28. We convinced the doctors to give her a squeezable bottle and nuk nipple and take her off the tube. She finally got hungry and decided to try to eat. They were able to send her home on 10/11/95. She was a month old the next day. She only weighed a little over 5 pounds at that point. Her biggest problems ended up being ear infections. She had over 30 by the time she was a year old. Then she weighed only 12 pounds. She didn't make much noise. She never really cried. The happiest baby I ever saw. She was content to lie on a blanket and roll around on the floor. She sat up at 10 months old. At 16 months she crawled some but still preferred to roll. She had her first surgery at 18 months. They fixed her cleft palate and put tubes in her ears. While still in the hospital she said Dadda for the first time. Now she calls him Brian. She has since had 4 more sets of tubes and will have them the rest of her life. She began walking at 22 months.

We had our second child, Brandi, when Amanda was almost 3. It was 9/2/98. She was perfect. No problems except for colic. She is a thriving gymnast and loves Amanda. She is the only child Amanda has ever attempted to play with. Amanda started preschool after Brandi was born. She loved it, the bus ride especially. I could not believe I was sending my 3 year old to school already. She started public school at 6 and then back to a special needs school at 8 when it did not work out. She had a heart catherization at 8. They put a coil in her heart to try to close the hole that never closed on it's own. We didn't want to do it, but they said her heart was enlarged and bleeding into her lungs. It was in and out patient and she did fine. Since they have found that her sinus cavity is somewhat enlarged but not growing, so we not have to worry about another surgery with any luck. She is getting physical therapy, occupational therapy, and speech at school.

She has a very wide vocabulary and has very little trouble getting her point across. She is somewhat difficult to understand at times, especially if you are not used to her. She also knows sign language and we have learned enough to understand. She does have lots of sensory needs. She shreds everything, plays in her food, plays in her bowel movements, and just about anything else she can squish between her fingers. Potty training has been a real issue so we have to watch her closely with bowel movements. She has a lot of behavior problems. She learned how to throw a tantrum and throw herself on the floor. She spits, screams, pulls hair, smacks, pinches, and loves to take peoples glasses. Which she breaks up in pieces. She also has a lot of self injuring behaviors. She bites herself, slaps herself, and has blackened her eyes on more than one occasion. She also pulls her own hair out, She has been totally bald about 4 times. Her pain tolerance is so high it doesn't bother her at all.

This year the therapist at school said she has OCD, ADHD, and very high anxiety. We took the study to her doctor and he put her on a very low dose of Clonodine. This has been great. She sleeps better and she has had hair for over a year now. She has very few fears. She is afraid of stairs. We have two sets at home. She has her own set that goes to her music room and bedroom that is very narrow with walls on both sides. They are the only steps she is comfortable on by herself. She loves heat. The hotter the better. She bites her nails until they bleed and laughs about it. She is also double jointed in all her joints. She can pop her bones out of place and put them right back in. She once popped out her hip and walked around like that for 2 days before popping it back in and it never bothered her a bit. It sounds very nasty and she loves it.

Most of everything she has learned has been through music. She loves to listen to her headphones. She has drums, a guitar, lap harp, maraccas, a very big keyboard, and every musical toy you can imagine. She is very smart about some things. If a toy stops working she will get a screwdriver and batteries so you can fix it. Amanda is now 11 and still not potty trained. She still basically thinks like a 2 or 3 year old. Sitters are nearly impossible. She gets stares from people which really upsets all of us. I guess this is something we will always have to deal with.

I don't know what the future holds for her, but I hope she will always be well taken care of and happy. And though Brian does not think she will ever be without us, part of me really hopes he is wrong! It is so nice to talk about her with people who understand, that I hope I did not leave anything out, yet I also hope I did not bore you with our long story.

Amanda is now almost 14. She is fairly healthy. She has developed scoliosis. They have decided not to do anything about it until it starts to really affect her. Her hips are very out of line, and her right foot is fallen inward. It looks painful, but does not seem to be. She will be in the 8th grade this year. Of course, her school grades are a little different. As for her heart, there is no change. This is a very good thing. As long as it stays that way, they will not have to do another surgery. We go back in October for another echocardiogram. She did have dental surgery in January. She had a few teeth taken out, a few new caps, but no root canals this time, YEAH! Her anxiety is still pretty high. They have increased her medication, but she is still a bit high strung. Potty training is still a failure. She has no real interest.

Anyway, Amanda is basically a happy girl. She likes to sit in her beanbag chair listening to her MP3 player. Now and then she likes to watch a movie and loves to eat popcorn. She is a big eater and gains no weight. She is a whopping 64 pounds and nearly 5 foot tall. I am sending a picture for all to see.