Laelia will have her casts on and off for a long time
Laelia will have her casts on and off for a long time. This first batch of casts on her legs will last around three months with recasting happening every Monday. When the casts are finally off, then physical therapy will start on her legs until recasting is needed.
Her arm casts are more tricky. Her wrists are bent in such a way that they cannot even make it to a straight (0) position. When noting her mobility in a chart, her wrists had a negative number (which the intern taking the measurements didn’t even know how to write down). So with a -45, her wrists need major work. Casting will happen Monday and recasting every Monday as well, but we don’t know for how long. After the casting, we will do splints which will be more long-term but removable. By high school we are hoping she can just wear them at night and even put them on herself if all goes well. By high school.. geez. All our hopes are on a functional adult, but her childhood will be so hard. The doctor who does the casting was very hesitant about casting her upper body and warned that it will impair bonding with her. But after the other doctor talked to her and told her that Laelie doesn’t move her arms at all anyway, it was agreed that she would get casts.
We are not meeting our five-a-day goal for PT at home. (Her therapist wanted us to do it after *every* diaper change.) So far we manage two a day. For about five to seven minutes Charley will stretch her joints out (20 to 30 seconds each joint) as she screams. She screams so much she can’t breathe. I constantly blow on her but she still gets so red in the face that I don’t recognize her so we have to take brakes to get her oxygen. Then it takes about 30 minutes afterwards to calm her down completely. After which she will fall so deeply asleep from all the screaming that she will sleep through her next feeding. And even after we get regular PT and OT appointments we will still be expected to do this everyday. It’s during these times that I pray God will just take her to Heaven right now and spare her a lifetime of this.
Today we tried hot towels and massages to loosen her up before PT. It didn’t seem to work at all and she still screamed just as much. Next time we are going to try wrapping her in lots of blankets to warm her up. We would try hydrotherapy (putting her in warm water), but we can’t yet because of the casts and her stubborn umbilical cord.
We’re not doing good emotionally. Charley is near tears every time he does PT. He told me he feels like a Nazi torturer when he can’t get the baby sweat smell off his hands afterward. I can’t do it at all. After PT we both hold her and rock as she whimpers with these sad, hurt little eyes for quite a while afterwards. It’s getting where she will start to cry when we put her down on the couch (where her PT takes place) or touch her at all.
She no longer curls her fingers around my thumb when she breast feeds. If my thumb touches her hand, she flinches.
