The day after Memorial Day, Kenzie had 2 appointments at Boston Childrens Hospital. These were neurology based, the first we met a new doctor in the movements disorder clinic, and the second appointment was with her regular neurologist Dr. Rodan. Overall, Kenzie is doing well and if anything is progressing, not regressing, which is good. The largest setback so far is that Kenzie hasn't gained appreciable weight in over year, almost a year and half, and is staying between 24 and 25 pounds despite efforts to increase her caloric intake. This is most likely caused by the excessive amount of energy Kenzie uses at all times, especially with her involuntary movements.
Both doctors agreed that thus far, the newest medication Kenzie had been started on, the levodopa, which helps her with some of her extra movements and stiffness, is helping and she is tolerating it well. As she is still having some dystonia and stiffness especially with her hands, they are starting her on another medication called artane that will hopefully help her control her fine motor functions better. We have started this at a low dose and will gradually increase over the weeks until we know that Kenzie will tolerate it. The only real side effect potential is sedation, and if noticed, we can scale back Kenzie's dosage. There is yet another medication that the doctors believe could really benefit Kenzie with her movements, but she does not weigh enough to be offered it yet.
The least favorite part of Kenzie's visit was the obligatory visit to the lab for blood work. Every other visit this is done to check her organ function, as well as levels of certain elements in her blood. The results are up on the hospital's website, but I have not heard from the doctor yet if there is anything different this time around. Dr. Rodan is also ordering some further testing for Kenzie, which for the most part is routine and ensuring that everything with Kenzie is functioning as it should.
The first will be with a cardiologist for an echo cardiogram just to check and ensure her heart is doing what it should. There really isn't any concern here, but with a condition like Kenzie has this needs to monitored on an annual basis. Also being ordered is a swallow study. This involves Kenzie drinking a fluid and multiple X-Ray's being taken to ensure that Kenzie is drinking and swallowing appropriately, and that she is not at risk for aspiration. I do not have dates for these yet, but anticipate most likely these will happen over the course of the summer.
Our next appointment in Boston is currently in July, and is centered around orthopedics and nutrition We will post updates when we know the other tests will be taking place. In the meantime we have had a few local appointments, and Kenzie has received her AFO's, which are ankle braces that provide support for her to practice standing and walking. An abdominal torso brace is being made and we should have that within a few weeks. We have also started the process of getting Kenzie a wheelchair / stroller. More on that to come.
In summary, overall, Kenzie is stable and doing well other than some eating / gaining weight issues.. Lots to monitor and lots to do, it is a long road but she is well worth the effort!!
