We had our orthopedics appointment

We had our orthopedics appointment! We called ahead of time to see if they were closed for the fires. Then we covered the baby, held our breaths, brushed the ash from our car and drove through what looked like Armageddon. What felt like little drops of rain turned out to be tiny bits of ash from unusually dark skies.

I was so nervous in the waiting room. The other kids had broken arms, but they were jumping around and happy. I don’t know why I thought other people in the waiting room would have Arthrogryposis. They were all soccer injuries or whatnot.

These people really seemed to care. They kept asking questions like, “Has she gotten a hip ultrasound?” No. “Has she gotten x-rays to see what’s going on?” No. “Has she had a genetic exam?” Not really. “Has PT told you how much mobility she has in which limbs?” No. This was actually the most thorough exam she had received since the diagnosis, and we told them as much. The physician’s assistant just shook his head and scheduled a hip ultrasound that was there in less than ten minutes. We gave her a pacifier for that one since it was mostly just uncomfortable and the gel was cold. When the lady first put the cold ultrasound on her tush, Laelie’s eyes got really wide and that pacifier got sucked pretty furiously. That’s cold, Mommy!

They also moved her body parts and wrote down how much movement she has in each limb. (Not as much in some, more than we thought in others.) They also explained EXACTLY what they were doing instead of just moving my baby and taking notes like they did in PT. Now I know that I have total rights to make doctors explain exactly what they’re doing and stop immediately if I don’t like it. Some doctors just move all her little joints to see how far they can go for no reason other than curiosity (at least as far as they explain to me). These people were great and I appreciated them.

We were getting casts that day. No waiting seven more appointments. No having to call and harrass anyone. No need for ambiguous “approvals.” We were told that these casts are usually done at one week of age! We don’t think waiting this long cost her much, but it’s infuriating that our insurance dragged their feet so much even when we were calling twice a day everyday.

The doctor came in and we talked options (finally!). They decided not to put her arms in casts and to try splints instead at our occupational therapy visit (on the 29th). It’s discouraging that her arms have not once moved on their own. Hopefully we’ll know more at OT… unless it is like our PT appointment… grrr.

We decided to try and fix the club feet with the casts and stretch out the legs since leg movement is less important. If we ever want her to walk, she may just need the legs straight and do a kind of stilts-walk. Whereas the doctor put a lot of emphasis on her learning to type so we’re keeping casts off her wrists. She also wanted to put off surgeries and x-rays until Laelie was a little older. I like how the doctor said, “Let’s get her typing!” and “We’re gonna get these little wrists going this way so she can type!” It was better than the usual, “Well maybe if we do this she may gain a small amount of mobility bla bla bla,” that we get from other doctors. I felt hopeful.

While they were casting her, she cried and cried. The doctor kept telling me how necessary it was and explained exactly what the discomfort was and that she wasn’t in terrible pain. The physician’s assistant started singing to Laelia when she wouldn’t stop crying. He had a nice voice and babied it up a bit. Laelia was still crying, but she stared right into his eyes and I bet she had her first crush right then and there.

We hate our casts. It’s like the discomfort of having braces on your teeth. It’s not a sharp pain, but it is a big discomfort. She cries more now and is having trouble eating. She went 12 hours with me barely getting anything in her mouth. They think it’s just because she’s uncomfortable. We also have to check her little toes all the time to make sure they stay pink. The bad thing about club feet in Arthrogryposis patients is that it goes back after the casts are off. So she could be in and out of casts since it’s not a true clubbed foot situation.

Working with a baby who for all intents and purposes had no legs (since they were so curled up and tight) to having these long, awkwardly wide, heavy and hard-as-a-rock legs is hard to navigate. Picking her up and having her feel the weight of the casts makes her cry. Breast feeding is so impossibly awkward now! The casts are hot and the temperature is so hot now that we were warned she would get heat rashes. The casts are going to be taken off and replaced every week. It’s looking like this will be hard.

But it is so nice to look down at my baby in her box (as you can see in her photo) and have this baby who has legs. She looks more like a person now instead of a sack of potatoes.

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