Rice

I was feeing J last night(who is now freed for adoption, btw) and Smiley was pulling on my arm like he wanted some. It was rice and gravy from a gumbo. I figured I'd stick it in his mouth and he would gag as usual. To my surprise he swallowed it(no gagging)and wanted more! He ate about 15-20 baby spoon sized bites of rice! I hope this continues. Just think of the calories I could get into him if he eats rice and gravy more often.

Such small things to give me joy!

My Miracle Baby

I finally got to speak to a new geneticist to find first hand info about Smiley's genetic issues. Sorry if this is difficult to follow, but I will explain as best as I can:
1. There is no other documented case like Smileys.
2. On Chromosome 15, he should have a pair of two chromosomes. One piece of the chromosome was copied twice(4 copies of that piece) and another part was copied once (3 copies instead of 2)
3. The genes affected explain the developmental delays, low weight, small head, and nonverbal. One of these genes is reponsible for Angelman syndrome, so he may have some of the characteristics, but in Angelman, a piece of the chromosome was deleted, his part was triplicated.
4. He beat the odds that he is here with us today. The egg with the chromosomal defect should not have been able to fertilize. bio mom normally would miscarry early on, have a still birth and he would have died the first year of life. It is a miracle that he escaped heart complications and kidney problems normally experienced by similiar children. His lifespan should not be significantly shortened.
5. I asked him what to expect developmentally and there are no positive answers obviously, but asked what I should expect based on similar cases: He will need to be cared for the rest of his life. He will probably have severe/profound mental retardation. He should walk but probably will not potty train or talk/communicate. He will probably always be a baby/toddler.

He was a wonderful doctor, very positive. I had to kinda pry to get more realistic information. I'm not ashamed, but I want a realistic picture of what to expect. I need to plan for the future since it is likely he will outlive us. I have to figure out who will care for them when we are no longer around.

The doctor asked how I was taking in the news. I told him it wasn't a lot I hadn't expected, but good to know what was causing his problems and what to realistically expect.

Job Searching

They will not have enough positions for me at school next year. That and my evaluations not being great(getting marked bad because some of my students do not want to work), I find myself again searching for another position next year. It's so frustrating, because I know in my heart teaching is where I belong, but had such bad luck so far. I think the main problem is I'm not a good match for the age group I'm currently teaching. I work better with the younger ones.

In other news, we have a new teenage boy staying with us for the weekend. He's K's age and a real sweet kid. If I weren't having all the issues with K, we'd probably keep him longer. They have a family willing to keep him Monday that lives in his area and he won't have to change schools. I think I'll leave him our numbers in case he needs something later.

Testing

Just peeping in real quick to say hi. My fourth graders are LEAP testing this week to make it to the next grade. We were cooped up in the classroom all day with no break except lunch. Poor kids(and me). I was going stirr crazy so I know my 9 and 10 year olds had to be going insane.

J's TPR hearing is April 13.

Smiley's mom is having a boy(and I am begging L to let me take it if it comes into care).

Smiley is singing Twinkle, Twinkle Little star(doesn't pronounce the words, but definately has the tune).

I miss everyone here and will try to be back soon.