After visiting the pediatrician today, we were able to reschedule Abbie’s surgery: April 26th. We covet your prayers leading up to it, as we have expanded the scope of the surgery a bit.
Abbie lost some weight during her recent illness, and the Botox we are planning to use in her arms is apportioned by weight. The surgeon can only use so many milligrams of it per kilogram of Abbie’s weight. There were three planned injection sites on each arm: in the thumb area, on the forearm and in the bicep. In trying to parcel out the limited amount of Botox, and looking at how stubbornly the thumb likes to lay on her palm, we agreed that simply injecting Botox into that strong muscle would not accomplish much. We felt it better to use the available Botox at the other two injection sites and do a muscle release for each thumb. This entails nipping the muscle and then putting Abbie in casts for a few weeks post-op to allow her thumbs to learn their new position.
The lower extremity work will still include removing the hardware from her hip surgery, and replacing the rods in her femurs with longer ones, but we have also decided that since the surgeon will be right there, releases of the gluteal muscles would be helpful. He did this during her hip surgery 1.5 years ago, but said that he “undercorrected” them, because he didn’t want to overdo it and have her end up with contracted hamstrings. That is definitely NOT a challenge for Abbie, so he is going to loosen them further now. This will make it easier for her to sit up straight. She can do it now, but as soon as we seat her she scoots her bottom forward and rolls her sacrum under so she ends up sitting in a horrible position. She won’t need any casts on her legs, thank goodness!
She is getting back in the swing of school, and worked very hard for me today. I had the voice output portion of her switch sitting on the floor near her chair. As we began doing reading, and she was consistenly using the switch to answer questions, Panda became very curious. He figured out that he could press the switch with his nose to have it say “yes.” Abbie and Panda both got a kick out of that! I think she liked having a homeschool helper today.
Because we want Abbie to recover completely from her illness, and want to avoid exposing her to any other bugs, she will not be attending school before her surgery. Afterwards, with casts on both arms, and sore legs and bottom, she will not be ready to go back to school for several weeks. That basically takes us to the end of the school year. The school has offered something called “Home Hospital Instruction” while she is out, but it’s only 3 hours a week. We have gotten into a good routine lately, and I think adding in a tutor for only three hours a week would cause more upheaval than it may be worth, so we’ll continue schooling on our own for now.
We had a full, wonderful day on Easter. I hope to post some pictures soon. We were blessed with much delicious food, many good friends, and the joy that true freedom brings.
May God bless you today!