On Friday we saw the Ponsetti doctor about Therese's clubbed feet. Although he had not casted a child with spina bifida before, he said her feet were pretty flexible for her age and that he thought we have a good chance of success. We will have to get her casts changed every week, which means 7 hours of driving, and on the third cast we should know if it is working or not. They put the first cast on that day, and life for her has certainly slowed down. She was our speedy knee-walker, but now can barely drag herself around the house on her tushie, or pulling herself along on her tummy. She can no longer get into her chair at the table by herself, or up on the step stool to wash her hands and brush her teeth on her own. She also cannot have a bath. She was very proud of them the first day, and excited that she had pink fiberglass on the outside, which they let her choose. She said she wanted to go to "my China," meaning the orphanage, and show her friends that she is getting her feet fixed. She acted much more subdued than usual once the reality of her casts sunk in. The weight and awkwardness are going to be very hard to live with for the next few months, but we know the end result is well worth it. We just have to watch out when we pick her up, because those casts really hurt if they hit you, or someone standing below, and we are trying to keep the casts from scratching up all the laminate floors. She didn't like the old pair of Mr. B's tube socks we tried the first day. They were not pretty enough for a princess. She liked the bright leggings I tried next, but they last only a few hours before they are shredded by the friction. The next plan is duct tape.
Here is Therese with her pink casts. These things weigh as much as she does.
Since she didn't like the tube socks, here are the bumblebee babylegs that she found much more fashionable.
Here is Therese with her pink casts. These things weigh as much as she does.
Since she didn't like the tube socks, here are the bumblebee babylegs that she found much more fashionable.
The day before we left, we were talking about it at breakfast, and she said, "I no have little feet? I have big feet like Fermin?" It was very funny. Fermin proudly has the biggest feet of all the kids in the family and he held one up for admiration. She is so excited about getting her feet so that she can wear shoes. I'm trying to remind her of that when she is annoyed at the casts. She was really worried about how she would wash her hair, which she loves to do. I promised we would put her on the counter in the bathroom and wash it in the sink.
John will have a new shunt put in on this Thursday, the 17th. We would appreciate prayers for him. It is hard to split the family up to cover the hospital, the home, and the trip for the 2nd set of casts. If he does well he should be home Friday afternoon. I tried to explain the surgery and how the doctor was going to help his head not hurt anymore. He was worried at first about whether they would cut off his head, in typical little boy fashion, then he said he would have "a little tiny head, like baby." He told me over and over, "I be brave, I not cry." He even make his big brothers laugh by clowning around and sawing on his own head with his hand.
Yesterday we went to get the pre-op paperwork and labs and had a very traumatic afternoon. They just couldn't get a blood draw on him. I lost track of how many times he got stuck, in both arms, both hands, and both legs. Even though he talked all the way there about how brave he was, and that he wasn't going to cry, that lasted only for the first poke with the needle. Three different nurses tried, then they sent for an anesthesiologist who poked him many more times before giving up. Twice they got a tiny bit but the veins blew. So they are going to wait and draw the labs after he is asleep on Thursday. One of the nurses said that she has veins like that too, and that she has spina bifida also. His veins are also hidden under a layer of insulation, which makes them very hard to see at all. Every time they tried a round, and gave up, he would stop screaming and crying and announce, "I ready to go home." It was a hard several hours and John was SO happy when I said we were going home, once they contacted the neurosurgeon and got permission to postpone the blood draw until right before surgery. He has a lot of needle marks and bruises, which he has enjoyed showing to everyone. At least if you get hurt, you get to show your wounds off.
