·  Normal is a dryer setting.

caudal regression syndrome

Namine has her new AFOs

In all the excitement about getting an MRI in preparation for getting her hernias fixed and g-tube removed, I completely forgot to post about Namine’s AFOs. The doctor said they would be ready sometime after Christmas, but I honestly didn’t expect them to be ready this soon. Nonetheless, Jess, my mom, my sister and Namine went to the orthotic clinic today to pick up the new AFOs.

Pain management and muscle strength

Every day, we have to stretch Namine’s feet. Not only do her ankles need to be pushed back (they do not normally rest at a ninety degree angle), but her toes, which tend to curl forward, need to be pushed back as well. I’m not sure how much discomfort there is in the stretching, and how it might differentiate from actual pain. I do know that there is apprehension and mental stress as well, though. All of this contributes to a very unhappy Namine during her foot stretches, as well as adjusting the casts after the stretches are done.

Recasting day, or not

Perhaps you’ll recall that today Namine had an appointment to have casts put back on her legs, as her feet (particularly her right foot) are starting to curl noticeably. The appointment was attended, but the casts were not put back on. It’s both good new and bad news.

Panic attack

Today, Namine had what was probably her first genuine panic attack. The way this came about fills me with sadness, but it was not unexpected – neither what brought about the attack, nor the attack itself. I will say this, though: her perception of the hospital and her doctors should not surprise us. Not one bit.

National Special Needs Parents Day? No way.

Ellen from Love That Max brought to my attention that Congress is considering a National Special Needs Parents Day. My initial reaction is a seething rage. It feels patronizing. It feels like pity. It feels like the government is saying, “Oh, sorry you got stuck with that kid. You know, the one with the problems.” As hotheaded as I am, I think that might be an overreaction – but even after careful thought, I am completely against it. Let me tell you why.

Cast-off day

Of course when Jessica told Namine this morning that she was going to see her foot doctor, she started freaking out. But today is no ordinary day, and this was no ordinary visit to the orthopedic clinic. Today Namine’s casts were removed, and she is much happier.

Feeling more like herself

Namine is in bed now, but she is not asleep. Oh no, far from it. I had quite a time trying to figure out what my two year old wanted, exactly. It turned out she wanted her mobile animals back on her mobile (they have been off for quite a while; they have been since she pulled them off) before she would settle down. We suspect she’s developing a fear of the dark, too. So I put Namine’s safari lamp at the far end of the room, where it provides a night-light-ish glow to the room.

Ortho clinic, a fall, and a visit to the ER

Jessica and my mom took Namine to her ortho clinic this morning. Just when you thought things were pretty much down to routine, excitement got dialed up a notch. My mom fell walking in to the clinic from the car, and she was holding Namine. Namine seemed unhurt, just shaken up; my mom sprained her wrist and hurt her knee, but nothing is broken, so far as she knows. As for the clinic visit itself, well, those are always stressful for Namine.

Night thoughts

I was reading something earlier – you can see it here – about how parents with special needs children can hold back their kids’ education/development/what-have-you. One of the majors ways this happens is when the parents focus more on the disability than on the child.

Casts, complications, and caudal regression

Namine is making progress. She is still in pain, but seems to be dealing with it a little better. That, and we have a better idea of when the meds start to wear off, and we can sort of anticipate when she’ll need her next dose. Namine is starting to learn to move around again.