Haddie has been making a lot of progress recently. She has been doing a lot of what we call planking. She will lay on her stomach and we will hold down her legs and butt. We will give her a little support and she will lift her head and neck all on her own. This is huge progress for her. We are hoping this leads to more and more trunk control.
Haddie has also been given the privilege of getting a Go Baby Go Car. Her therapist at Marietta Memorial selected her to be one of three students to get this car. They basically let us pick a Toys R Us battery operated car and they fit it to Haddie. The cool part is that they will install buttons that Haddie can push so she can control the car. We choose a pink Jeep. This is Haddie getting fitted for it. It will be a good therapeutic tool for her moving forward (pun intended)
We also believe she is able to express what she wants using her eyes. We will ask her yes and no questions and tell her to look one way if the answer is yes. Most of the time she answers the way we think she would. We can also hold up two objects in front of her and ask her to choose which one she wants and she will do it. We have a connection to an engineering professor who has developed an eye gaze system that allows people with ALS to communicate with their eyes. Many of them cannot control anything but their eyes so he made a program that could allow them to communicate using just that. These are people who had full function and lost it. So we wondered if he could create something for a kid who is still developing and figuring out how to function. We have begun to talk to him about developing something for Haddie. We plan to make a trip at some point to meet this guy and let him meet Haddie. We are hopeful that this could be the start of something really good for Haddie's communication in the future.The sad news is that we have a surgery on the horizon. Had has been taking Botox shots over the past few months and these have helped loosen her up. It took a couple tries to get the right dose but it has been working good. At our last appointment the doctor asked us to get hip xrays on Haddie because she seemed tighter in the hips. The xray revealed that her right hip is dislocated and her left hip is starting to dislocate. Kids with spastic muscles like Haddie have a hard time putting pressure on the legs which in turn keeps the hips up in the socket. The only option (besides doing nothing) is a surgery where they will cut the bone and push it further into the socket. They will do this on both sides. She will need to be in a brace for 3-6 weeks afterwards...that is if she has good bones. If they have any problems they will have to put her in a cast instead. We are praying for the brace.
We have no way of telling if Haddie will ever walk. But we do know that this will prevent her from having the chance. So we are going to put her through it in order for her to have that chance. She's a tough little girl.
Her little sister continues to grow and be a light in our lives. She's a little ball of joy. She seems to get along with Haddie pretty well. She knows not to pull Haddies hair and she tries to shake Haddie's hands to get her smile. We are blessed to have these two girls in our lives. We appreciate your continued prayers and thoughts. We head in for surgery November 6th, so we'd ask for your prayers again that day. God is good.