We are one month in. We made it! Halfway through. So, why do I feel like we should be finished already???
Dani and I went to her appointment today for a more involved visit than we normally have. Last week I had concerns about the DOC band not doing what it should be doing to her head. During her one hour off a day, I have noticed in the past few weeks that while her head is rounding out, it is rounding out on one side. And the side it's rounding out isn't even the flat side. See, one side is more flat than the other due to her plagio. The brachy causes her head to "drop off" creating a flat back, but the plagio means one side is essentially longer than the other out the back, creating an oblong shape when looking from the top of the head (I'll add pictures to point it out another day, but I really am just too tired to go to the scanner and get the pictures on a file I can insert here. My tired brain will have to guide you through!). Last week, Wendy, who we have seen more than the other OT/PT's, agreed with me that it seemed a bit misshapen and told me this weeks appointment would include pictures and measurements to see where we are in this process.
As usual, the pictures and measuring were torture for Dani. She was crying-actual tears- the whole time for some reason. These wonderful people had toys, music, lights... none of it mattered! Dani did not want to be held down for measurements. I felt terrible. Her skin is really sensitive so by the time it was over, her skin had red blotches everywhere she was held into place, or prodded with a measuring device. I snuck a glance at the numbers and it didn't seem there was much improvement. Sigh.
It turns out, her head circumference hasn't changed in 2 weeks, and the numbers suggest some improvement, but without a second band, I was told it would be a wait and see kind of thing. The band only has 2 more adjustments on it, and in 6 weeks she will grow out of it. In 6 weeks this will definitely be over, but if I don't see enough improvement in 4 weeks, I can make the decision to pull the plug on the whole thing. 8 weeks and $2,500 for nothing? I wanted to cry.
I'm not saying there has been NO change, because there has been! Her face looks thinner, and the left side of the back of her head is rounding out beautifully. But I don't want to make it worse! I don't want her to have a misshapen oblong head. Life is hard enough without making it worse. I guess I don't know what to do. I left the appointment feeling down. While nothing terrible was said, I felt like what they weren't telling me was the band is failing. I don't want to believe it. They notice changes in her head, but it is slow. So slow, we are going to appointments every 2 weeks now instead of once a week. After a baby turns 7 months, growth slows way down. We got it on her head at 6 months. I noticed this at 4 months. If we hadn't been in Mississippi with such an inept pediatrician, I feel like this would be a different story. I am so angry. SO angry. What do I do? Do I sue the pediatrician who told me everything was fine? Do I buy another band even though we absolutely cannot afford it, and hope it helps? Do I just give up in a month? I'm not one to give up. I never quit until I get what I want. It is my personality. I honestly don't know what to do right now.
I guess we will see what happens in a month. Maybe the story will be different. Maybe this will just be the low point in all of it and everything will be fine. Maybe it's time to pray harder.
I'm exhausted. It has just been so long since I have posted anything, and I needed at least a small update. It has been a jam packed month- I'm going to really try and get caught up soon. Pictures, stories, etc. All coming soon! With a better attitude and mood than this one! This one sucks. So, I'll take my sucky attitude and go to bed.
