Ali was born healthy and went home with us two days later. She slept through the night from day one. A few weeks later we determined she had a small PDA heart defect, this is the hole that everyone has in their heart, and it closes shortly after birth. Ali's didn't close and it wasn't causing her any problems. We eventually closed it with a heart catheterization procedure when she was 14 months old. She was home within a few hours and has been fine since. We put ear tubes in at 6 months because of chronic ear infections, and they cured that immediatly. Ali's hearing and vision are both fine. Her biggest struggle has been with her respiratory system, as asthma and allergies both run in the family she seems to have inherited both. We had a hard winter, between RSV, colds, the flu, and croup. After she got the chicken pox from the vaccine and we determined she had an immune system deficiency we have been able to keep her very healthy. Her only problem since March 2004 has been her allergies and one bout with the stomach flu which we all got.
When Ali was born I didn't know hardly anything about Down Syndrome. Obviously I was terrified of the unknown. I went through the rollercoaster of emotions, although I had a much easier time than everyone else. I know I didn't expect much, although I'm not sure exactly what my expectations of Ali were. Whatever I expected, it sure wasn't what I got!
Ali is now a healthy, happy, active, mischevious 18 month old little girl. She is about 20lbs, and 30 inches. She crawls faster than any baby I've ever seen, she climbs anything you'll let her, she cruises the furniture and anything else she can, and gets through just about any barricade we put up to stop her. She is getting ready to start walking, and I can only imagine what she will destroy then! We have gotten her a reverse walker and she loves to walk around with that now. She absolutely loves to eat and has been feeding herself for months. She drinks out of a cup and a straw. She has at least ten teeth now so she can eat just about anything.
Ali loves music and will dance to just about anything. She has a very infectious personality and people are constantly talking to her and commenting on how adorable she is. She will glady share with you, and still likes to cuddle sometimes. She is such a happy kid most of the time, smiling and laughing a lot. She is stubborn though, so we get the occasional tantrum too. For the most part she is very laidback and easygoing.
Although we were hoping to avoid the seizures with Ali it doesn't appear that will be the case. (The seizures have nothing to do with her DS, as you will see her sister also has Epilepsy.) Today (9/3/04) she had 1 grand mal seizure, and probably another one before that. She has an EEG scheduled and we will go from there as far as treating them. The silver lining in all of this is that the research I have done tells me that for some reason Children With Down Syndrome are much more likely to respond to seizure medication.
Ali is about 2-3 months behind her "typical" peers in some areas, and ahead of them in others. She knows when she is doing something wrong, and is extrememly sneaky to try and get away with it. She has a favorite video she likes to watch called Signing Time, and figured out months ago how to operate the VCR so she could watch it when she wanted to. She also has a talent of being able to find something we don't want her to, no matter how well we hide it! And no matter how well you think you've trapped her in a room, if you leave her in there too long she will find a way out!
I think the thing that surprises people the most about Ali is how much she is like other babies. That is exactly the point. There is so many misconceptions and myths about Down Syndrome that just aren't true. Down Syndrome is not something to be feared at all. Children with Down Syndrome are much more like their "typical" peers than they are different. Parenting any child is full of difficult moments and wonderful moments. That is what parenting is about, you never know what you are going to get. There will always be challenges and victories. The difference with a child with Down Syndrome is that each victory is a little bit sweeter. :)
Please go here to learn more about Down Syndrome: Trisomy21Online.com
