Ahren

When Ahren first came home he was 2 years and 9 months old but was still very much a baby.  He still took a bottle every 4 hours. He had not started potty training. He didn't say many words (in spanish or english) and he still seemed babyish in many ways. I didn't mind, I got to enjoy that last little bit of babyhood after having missed so much of his life.

But there was more to it than just baby-ish-ness. (I made a new word!) He had very poor muscle tone. The foster mother had been worried about him walking so late (22 months) and falling constantly and they had taken him to an orthopedist. The ortho put him into special orthotic boots to stabilize his feet and ankles. Those helped but still, there was more to it.

I took him to an ortho here and he was very concerned. He said he had never seen a child with so little muscle tone. His little legs would just flop all over and you could literally wrap them around his head with no problem. We started working with him every day to build muscles and fed him a diet high in protein. 
In three months he grew almost 4 inches, began to gain many more skills involving his large muscles and the ortho thought he was looking great. The improvement was amazing. The doctors orders were to keep up the good work and he would see us in a year. 

We saw his regular doctor the other day (who has also been following Ahren closely) to get his flu shot and I mentioned some things that I have noticed. Here is what I mentioned to the doctor.

1) He drools all the time and seems to have trouble chewing and swallowing.

2) He has been having trouble getting out of bed and when he first gets up he walks with a very stiff-legged frankenstein like movement. 

3) He has been falling down a lot, even when just standing still

The doctor got an odd look on his face, and then he said something that hit me like a punch in the gut. He said we need to test him for muscular dystrophy. I think he said some other things after that, but the odd buzzing in my head drowned it out. We now have an appointment in 10 days for a complete work-up.  Genetic testing, blood work, and whatever else they can think of. And then we wait for a few weeks for the results. 

I am concerned but not freaking out. Yet. My mother's intuition tells me there is something going on. He is almost 4 years old and he falls down trying to pee in the potty. He has a funny, awkward gait when he runs. He drools like a teething baby. I guess the thing that made me begin to think there might be something going on is that these things had gotten better but are now getting worse. All along I had thought he was just behind in development because he was never allowed down on the ground and the foster family did everything for him. But they had also been concerned, so even back then they thought there was something wrong. 

It's going to be a really long few weeks.