Casey wears splint or gloves on her hands that are designed to keep her hand and thumb open instead of in a fist. She has had to wear some version of these since short after birth. You can see some of her baby NICU pictures with little blue plastic ones. The first set were to open up her fingers. The first pair did not do much at all for her thumbs. Later we moved to a neoprene model that was focused on opening her thumb and did not really do much for her fingers. When Casey is relaxed or sleeping she is pretty good about getting her fingers open so we figured that the focus should be on the thumb if we have to choose one. Casey has been wearing McKie Splints for years. They are easy to use, easy to clean, affordable, etc. Just before she switched from ECI to MISD (Arpil) ECI wanted us to try out a new splint that would focus on her thumb, fingers and even wrist. Sure, why not.
We had them measure Casey’s hands, fingers, wrist, etc and order the gloves. We got them right as she switched to the school district. We tried to use them a few times after we got them but they just seemed off. The fingers sit on this big board like paddle and they are so massive. Casey can not do anything with her hands while in the gloves. Usually they are designed for kids to wear all day. There is just no way with these that we could ever get her to go more than 20 minutes. We finally called the company that ordered them and took her back up today to get them refitted. They remeasured and told us that the gloves are SUPPOSED to fit like that. What an awful design.
We had to go out in the rain to get to the appointment. Then the building was totally impossible to get to. We had to circle all around and go hunting for the actual suite. Then they told us that the glove was designed to be unusable basically. So frustrating. We have decided that next week when Casey goes in for her Orthopedic follow-up we are going to see if they can order us better ones. I am pretty sure they are going to want to do new AFO’s as well so maybe we can get them all done in one sitting.
Casey’s vision teacher/therapist and occupational therapist are going to start coming again next week. Still no word from Speech. I liked ECI so much better than the school for therapies. They worked all year and were so much better about scheduling and setting goals and stuff. I think I need to find another source for Casey’s therapies. The school can be extra but I don’t think they are working out as her primary source.
Casey had a GI appointment last week. Things went well. She weighed 29lbs. A few weeks before she was only 27 for her Neuro appointment. I told the GI doctor that I was really worried because she had lost weight and so I was trying to push her food a little to make up for all the leaking. He said that the aggressive rate we have been hitting for her is a good amount and to keep her on it. He also said not to worry about the 27 from Neuro. He said that they are not exact in weights and that it may have been off a little. He also warned that we be sure not to get her on the heavy side either. Such a balancing act. We need her to gain weight and grow, but not too much.
I think that is about it for now. We have a few more appointments and another round of Botox this month. I will post updates as we have them. As always, we hope everyone is doing well.