Laelie got her casts Monday night
Laelie got her casts Monday night. The next 24 hours were the predicted hell. Now we’re getting use to them a little more. I drew on them so I could tell which way her hands went. I didn’t realize that her arms curled in the wrong way until we had the casts. (Just one more difference, *sigh*.) Instead of resting at her sides with palms facing towards the body, they face away. Drawing little hands on the casts help us not to hurt her when positioning her.
After getting the casts she would wake up in the middle of a deep sleep to scream thinking we are doing PT on her, but it was just the constant pull of the casts. She cried for hours and then whimpered after she was exhausted. It wasn’t until Tuesday night that she started to act normally again.
I’ve been sick. This is my first time out of bed for any length of time in a couple days. We thought I had a breast infection, but it turned out to be a bruise that made breast feeding painful. The lactation consultant said to try massage and pumping and now the blockage is gone. I was also sick to my stomach for a long time. I just needed sleep, but baby was hungry and doesn’t take a bottle very well yet. We think she either had another growth spurt or she just needed comfort on Monday and Tuesday because she ate every hour… which was painful.
I miss holding her hand. We would hold hands and she would try to grip my finger or thumb evey time we breast fed. I miss it so much I cry.
When doing the casting the doctor and assistant just kept asking if we were sure this is what we wanted. I hated that. No, we’re not sure. We don’t know anything. The occupational therapist, who has studied arthrogryposis more than any other medical professional we know, said this was best. They didn’t use to do it this way, but saw better results with extreme cases. The doctor just kept saying how she had never casted all four limbs before and poor little baby. The assistant said he had done it once before, but not on a baby. They offered to just do one arm and not the other for no reason other than “poor baby with four limbs in casts.” Then they explained that she wouldn’t be able to move her arms if we did this. (Duh!) But she doesn’t move her arms anyway! Ever! Just her fingers. And it’s not like I don’t miss holding her hand! I didn’t choose this! I didn’t wake up one day and decide to be mean and put my daughter in four tons of plaster! We’re just trying to do what’s best.
After listening to all the input, I decided (at the last second) to only cast up to the elbows. The doctor casting her seemed happy about that. But now we have the possibility that these casts will slip down. Which would suck and we’d have to start over. I think I made the right choice since it is a little bit easier to get clothes on her since her elbows have a small passive range of motion. That said, she is still wearing clothes for kids four times older than she is in order to get them on her.
I just hope this works.
Before we even had the casts on them, a little boy at church asked me if her hands were broken. I didn’t know what to say, but someone else was there to field the question. Other kids were asking why she was that way. I have been thinking about it and have decided finally how I would respond. I would say that God didn’t make her this way. He made her perfect. She had an accident. Just like people have car accidents and need fixed by doctors. Only this accident happened when she was still in her mommy’s tummy. Now this accident was no surprise to God, but he allowed it. Now we’re trying to fix her, but she’ll never be like other kids. And that’s okay. Because being different is okay. And being different doesn’t mean you did anything wrong. That’s just the way it is.
