Tough week

It's been a rather tough week here for me. Hubby is on a 2 week trip at the moment. And Wednesday we went and saw a new neurologist for Courtney. At the place where my mom works, they have a new guy who's specialty is child development. He is fresh out of med school and residencies, so I thought getting a second opinion certainly wouldn't hurt.

Well, I may have been wrong. But it may have also been the very right thing to do. He spent an hour with me and Courtney, and Hubby who was listening on Skype through my iPad. He asked all kinds of questions, and I had brought a copy of Courtney's very old MRI. And when all was said and done, I had learned some very interesting things.

First, apparently Static Encephalopathy Central Hypotonia is a useless term. Nice, it only took me over 2 years to learn that. He said basically that means that something isn't right in her brain, and that is not changing, and her core muscles are weak. But WHY is a big question, and I guess more so is how does it manifest itself. Then he dropped a bomb. He suspects Courtney is ADD. (Attention Deficit Disorder).

I left there feeling punched in the gut. It took me a couple hours to figure out why. For so long when Courtney was younger everyone kept saying to us "she'll grow out of it". I guess I had interpreted that in my mind as a year or two. Which is why we got her into therapy so quick and at a young age. My thinking was, get her through therapy and this way it won't interfere with school. Suddenly a diagnosis such as ADD, or something else, is not something she is going to grow out of quickly. No quick fixes here, no growing out of it by age 5. That's tough to hear.

So, our next steps are: getting another MRI of her brain to see if anything has changed, make sure we didn't miss anything first go round, make sure it's developing as it should. She is also to undergo behavioral and psychological testing. We are also working to gather up all the blood tests she has had done to make sure she has had all the test that this neurologist would like to see. We also need to start her in some pretty intense behavioral therapy.

I called her pediatrician that day too. When she called me back she agreed that static encephalopathy is a useless term. And she said that when neurologists diagnose ADD, they are usually correct with their diagnosis.

Don't get me wrong, I really liked this new neurologist! In fact, I would really rather have an accurate diagnosis then just have her labeled under a general term. It's just still a punch in the gut to think that for the last few years we might have had her misdiagnosed. Well, not really misdiagnosed as much as not clearly diagnosed. And it's painful to think that she is not going to grow out of this as fast as I expected. In fact, if she is ADD, we will be able to get services through the school a lot easier.

The next day I had a parent-teacher conference at school. As far as that goes, she is a model student! She is excellent in class, empathic, shares well with others, the praise went on and on. Then I walked out of that thinking: how is this possible? How can she be such an angel at school and so opposite at home? I guess only time will tell. Hopefully over the next few months all my questions will be answered. I hope.

And of course I have stress induced IBS (irritable bowel syndrome). So, my IBS had been acting up really bad the past few days which really isn't much fun. Especially when you are trying to parent 2 kids by yourself.

Plus Grant, one of our cadets has been here the last 4 days. The really nice thing about having him here is that it's another adult to talk to. Plus I eat a whole lot better when I have to make dinner for everyone. When it's just me and the girls, I don't really make dinner, we more just scrounge things together. I took Grant back to school tonight, but Toby is coming over tomorrow night to stay a few nights.

Well, I am so exhausted, I really need to head to bed. Hugs to all of you.