Last week Deena had her first appointment with the orthopedic surgeon. After she came home with a fracture, I realized how important it is going to be for us to have an orthopedic surgeon close by that was a good fit for her. I called our orthopedic surgeon in Phoenix, Dr. Goggins, and asked who he recommended here in Tucson. He recommended Dr. Vincent and we saw him last week. I am happy to report that we loved him! He was very pro-walking, had great bedside manner, took his time talking to us and answering questions, and has other kiddos he sees with osteogenisis imperfecta (OI). I also talked to him a bit on his approach with kiddos that have spina bifida and liked his answers. I think I will be switching all my girls to him.
Dr. Vincent recommended removing Deena's cast (she had accidently peed on it so we were planning on getting a new one), x-raying her to see where she was at with bone healing, and then re-casting or splinting once we saw how she was doing. The x-ray looked pretty good and there is quite a bit of new bone growth. He said we could splint or even keep the cast off all together, depending on what I wanted. Because we are all still getting used to how to handle Deena, I decided a splint was the way to go. That way she would have the support, but also a little more freedom and movement. So far it has worked out really well for her.
We spent some time talking about our long-term goals for Deena. Right now the plan is to go in again in two weeks and check how her bone is healing. We will also discuss a plan of action for rodding surgery at that time. She had two femur rods inserted in India. They had decided she was doing well, though, and removed one of the rods. Apparently once you insert rods it changes the way the bone grows, so removing them is not a good option. Basically once you are rodded, you are often rodded for life he said. The other rod is not in quite right, but it's also not terrible, so he recommends leaving it for right now and then modifying it in the future. She will also need tibia rods. He wants me to research a bit on the types of rods, how the surgery is typically performed, and decide how many bones we want to rod at once. He does not recommend rodding the femur and tibias at the same time, because he said there is a settling period after surgery. He said we could either do one tibia at a time, and then the femur, or go ahead and do both tibias at once, wait a bit, and then do at least the one femur if not both. He explained to me how he performs the surgery, what the typical hospital stay looks like, what to expect, and all of that good stuff. He also said he believes Deena has OI type 3.
I can tell that Deena is already feeling better because she wants to be up walking constantly. Right now I just hold her, but I would like to get a walker for her soon. The walkers my other girls use are a little big and bulky for her, so I would like to get her something different. I am still working on getting her approved for insurance, though, so it will be a little while. Until then, our days look like this...
(In the waiting room)
Dr. Vincent recommended removing Deena's cast (she had accidently peed on it so we were planning on getting a new one), x-raying her to see where she was at with bone healing, and then re-casting or splinting once we saw how she was doing. The x-ray looked pretty good and there is quite a bit of new bone growth. He said we could splint or even keep the cast off all together, depending on what I wanted. Because we are all still getting used to how to handle Deena, I decided a splint was the way to go. That way she would have the support, but also a little more freedom and movement. So far it has worked out really well for her.
(Deena "helping")
We spent some time talking about our long-term goals for Deena. Right now the plan is to go in again in two weeks and check how her bone is healing. We will also discuss a plan of action for rodding surgery at that time. She had two femur rods inserted in India. They had decided she was doing well, though, and removed one of the rods. Apparently once you insert rods it changes the way the bone grows, so removing them is not a good option. Basically once you are rodded, you are often rodded for life he said. The other rod is not in quite right, but it's also not terrible, so he recommends leaving it for right now and then modifying it in the future. She will also need tibia rods. He wants me to research a bit on the types of rods, how the surgery is typically performed, and decide how many bones we want to rod at once. He does not recommend rodding the femur and tibias at the same time, because he said there is a settling period after surgery. He said we could either do one tibia at a time, and then the femur, or go ahead and do both tibias at once, wait a bit, and then do at least the one femur if not both. He explained to me how he performs the surgery, what the typical hospital stay looks like, what to expect, and all of that good stuff. He also said he believes Deena has OI type 3.
I can tell that Deena is already feeling better because she wants to be up walking constantly. Right now I just hold her, but I would like to get a walker for her soon. The walkers my other girls use are a little big and bulky for her, so I would like to get her something different. I am still working on getting her approved for insurance, though, so it will be a little while. Until then, our days look like this...
In other news, Deena has officially started homeschooling and is doing well. She has a pretty good attention span and enjoys doing her work. I am starting her off very slowly, but for now, it's nice to be in a routine again.
Deena is really sweet and keeps us laughing. She has so much personality! She loves singing and dancing, which Madi is really enjoying. She is doing well expressing her needs and her emotions, which I am thankful for. She loves snuggling and is a momma's girl for sure. She is such a blessing!
