The week started off traveling down to the Boston Children's Hospital campus at Waltham. There we started the morning getting pelvic x-rays and then meeting with Kenzie's orthopedic surgeon, Dr. Shore, along with his fellow. The good news was that the pelvic x-rays did not show any further progression, so the hips are still in joint and do not need treatment at this time. The bad news is that Kenzie's knees and hamstrings are now the focus of attention. Kenzie still cannot straighten her legs out, which is unusual for her age, even with a condition like hers. The normal and suggested treatment would be surgery, at first to insert two screws into her knee. This would serve to slow down the growth of the front of her knee so that the back of the knee could grow and catch up. In the same fashion, either close to this or at some point the idea of lengthening her hamstrings is still up for discussion. However, there is a roadblock to having surgery right now, and that is that Kenzie is too small. While we all know that she is a peanut, she needs to grow to have the surgery. Also noticed during the exam was that due to Kenzie's posturing and positioning, and that her spine is still flexible, she is at risk for scoliosis and may already have some.
Looking at Kenzie as a whole, Dr. Shore is starting the process of convening a complex case review. This is a process where all of Kenzie's specialists in Boston get together to discuss the best course of action and prioritize what Kenzie needs to have a good quality of life. Certainly standing, or walking, is high on the list, so the knees are a big topic of discussion. Dr. Shore is also going to bring forward the idea of a surgically implanted medicine pump that would pump a medicine called baclofen into Kenzie, which would in turn help her tone. A group consensus is needed on this, as Kenzie is on other medications for tone, and there needs to be a good balance with all of them. So there is a lot going on, a lot coming, and the future seems busy.
In the afternoon, we were at the Augmentative Communications Clinic, which is basically two hours of play time for Kenzie while an occupational and speech therapist try out multiple devices to see what could Kenzie communicate the best. Examples being an IPad with apps where Kenzie can tap on buttons that will talk and communicate what she wants / needs / or just has to say. There was also an eye gaze computer that tried out, where it finds Kenzie's eyes and then when Kenzie looks at the computer, wherever she looks it clicks on like a mouse. Very creepy and unreal at the same time. It seems the most likely outcome of this will be an IPad with the apps. Insurance will not cover an IPad, but they may cover the application. So we have been pricing all of this obviously because we want the best for Kenzie. We will be seeing this clinic every 3 months, so by the next visit we should have a much clearer idea of what Kenzie will be using.
The week ended with a return trip the main campus of Boston Children's Hospital. It was injection day for Kenzie, so we arrived at the hotel the night before and reported to the hospital bright and early Friday morning. Kenzie is never happy for this, and seemed to know it was coming as she didn't sleep well the night before. Overall the procedure went well, there was some minor bleeding and bruising during the procedure, but it didn't affect anything. They also did a couple of new injections into Kenzie's ankle / foot area to try and get her to loosen up and flatten her feet. After the procedure we headed back to the hotel as Kenzie needs rest afterwards. They had tried a medication to help her sleep during anesthesia, so that she wouldn't wake up so angry and screaming. It seemed to work, and for the most part once we were back at the hotel she napped or kept it calm. We headed home on Saturday, and she had a mellow weekend as she was still tired and probably angry at the whole deal!
We have a lot coming up. On March 19th we have to travel back down Boston Children's at Waltham for a functional vision test. Given that we have already made the trip up and down 2 times in the past week, we will probably have to battle traffic and do this all in one day. Then, in the first few days of April we head back down to the main campus in Boston for two appointments, one at the nutrition clinic, and the other at the extra movements disorder clinic. SO there is a lot on the plate and coming up. We appreciate everyone's thoughts and prayers while going through this, Kenzie is a tough cookie!
Here are some pictures from the week:
