Nathan is making progress with his cochlear implant, which is good because we had not seen much at all for a few months. In order to speed up the process of getting a good map, which has already taken 8 months, we are now seeing our audiologist once a month instead of the normal once every three months appointments. We have our next appointment on August 8th.
Today we saw our Physiatrist, rehab doctor. His is the main doctor that works with the boys for their CP. He is planning to see both Nathan and Owen in spasticity clinic on August 9th. In spasticity clinic they will be seen by him, an orthopedic surgeon, a neurologist, and more therapists. Since I am throwing around some unfamiliar terms here is a definition to help explain.
In its most general term, spasticity is “increased resistance to passive movement or muscle stretch, which can interfere with mobility, self-care, positioning, and ultimately lead to joint contractures. This occurs when there is an illness or injury which affects the brain, brain stem, or some area of the spinal cord. Individuals who have spasticity have increased reflexes and clonus ( a rapid up-and-down movement about a joint in response to muscle stretch).
In Spasticity Clinic Nathan will be reviewed and a decision will be made if he will receive botox in his legs again, followed by serial casting for about four weeks, along with knee immobilizer, etc or if we will begin a discussion of surgery to lengthen his hamstrings. Most of the time the surgery is done on kids who are about 4. Nathan is going to clinic to get all this "brain power" together to figure out the best plan of action for him.
Owen will be attending Spasticity Clinic too. Owen does not have Spastic CP, but Dystonic CP. Owen is going to Spasticity Clinic to be seen by all the doctors and therapists even though he is not spastic so that he and Nathan can be together and I don't need to make another trip up to Children's Hospital for Movement Disorder Clinic. Everyone will observe Owen and make a future plan of action for him too. Here is a definition of Dystonic CP.
Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurologic features.
We also discussed and will begin moving forward on getting Owen some augmentative communication devices. I think right now that may look like some apps on the iPad (which he LOVES). Everyone believes both boys are cognitively on level. Owen especially gets very frustrated when he cannot communicate to us appropriately and when he is frustrated he tightens his muscles and it becomes painful for him. This devise will not take place of any progress and work we are doing in verbal communication but will just enhance it, allowing Owen to not be so frustrated so we can actually work on the words he is wanting to say. Owen is starting to say more and more words on his own and repeat what we are saying. We have noticed that some times he has difficulty answering questions and will just move his lips and his tongue around for a while. The doctor believes he has some dystonia in his tongue and face making it harder for his muscles to formulate a response some times.