As I alluded to in my first post, my partner and I are both disabled. While we both have cerebral palsy, his has always been more severe than my own. We have been battling for the past year against the as-yet-unexplained decline in his function.
Born with a mild case of hydrocephalus, I underwent surgery to place a shunt in my brain before I was four days old. Two eye surgeries and a surgery on my Achilles tendon followed before I was three. At five or six, I underwent a surgery to lengthen the catheter of my shunt in my abdomen, and at nine I underwent my last surgery to date.
On a Thursday morning in February, I noticed a lump on the side of my neck. Cody got concerned, so we decided to go into the Urgent Care clinic. They sent me to my neurologist who promptly ordered a CT scan and X-ray and referred me to the neurosurgeon who had done my shunt revision when I was a kid. We were in his office that Monday. Within five minutes, he said he wanted to place a second shunt that following Thursday, since the lump was likely cerebrospinal fluid from a fracture in the shunt catheter. Obviously, that scared the hell out of me to the point that I had never been so terrified before in my life. I elected not to undergo surgery immediately, and instead got a second opinion from another neurosurgeon. The second doctor reassured me that as long as I was asymptomatic of shunt failure, undergoing the surgery was not necessary at this point. I figure though that I may need the surgery in the next few years.
Cody and I first met in 2009 over the internet and he moved here to Green Bay in June of 2012 after our friendship morphed into a full-blown relationship. Since then, I’ve been trying my best to help him overcome his abusive past and move forward both physically and mentally.
He was born significantly premature, and his cerebral palsy originated when they tried to wean him off the ventilator in the NICU. His brain suffered hypoxic brain damage and as a result he has had to deal with CP his whole life. His father and, indeed, almost his whole family is completely ignorant when it comes to how to treat someone with disabilities, Thus he had to learn to appear as independent and as “normal” as possible to lessen the abuse as much as possible. However, that got harder after a childhood surgery, after which he could no longer walk without the aid of crutches.
A physical therapist once described cerebral palsy to me as a semi-degenerative disease. Not in the typical form such as MS or ALS, but more along the lines that your body will age faster. Nobody told that to Cody’s body. Since 2014, he has been steadily losing function. It was difficult for him to walk by the time he got his wheelchair in July of 2014, and by October, we were concerned enough that we got him in to see a neurologist who did an MRI to rule out multiple sclerosis. While Cody had a lesion, that was not enough to confirm a diagnosis of MS.
In the fall of 2014, he was diagnosed with gastroparesis, a condition where the stomach is somewhat paralyzed. That came after weeks of him throwing up after eating anything solid and eventually progressed to him immediately regurgitating water. A quick visit to the doctor and he was immediately admitted to the hospital. He was dehydrated and it took about a day for him to start eating. Now he has a somewhat restricted diet, though due to our economic situation he is not always able to follow. He has not had to be hospitalized for that since. In the last year or so we have started looking into options for a longer-term fix other than diet. Our two primary options are a gastric pacemaker and a Roux-en-Y gastric bypass. Cody is more wanting to go the gastric bypass route, since pacemakers do not last requiring future surgeries to replace the pacemaker. Pacemakers also have higher chances of rejection and infection. That had been scheduled for today, but had to be cancelled because I did not realize that the appointment was for 9:45 in the morning. Neither of us are morning people, and we would have to get up at 7 to be able to make it there on time. Something I never do if I can help it.
In Spring of 2016, his psychologist confirmed something I had suspected for some time, that Cody was on the autism spectrum. This was, for us, a relief. Cody knew he wasn’t awkward or weird, and I knew that we could find him support through local agencies, however, unlike some, neither of us ascribe to the “quiet hands” doctrine. If Cody needs to “stim”, self-stimulation for those unfamiliar with the concept, as long as it’s not overly loud, I encourage him to do so.
We are trying to get him fitted for Knee-Ankle-Foot Orthotics and had went down to UW in Madison for an appointment with their Orthotics department. That appointment was on a Friday, and the next week after that, we received a call that since they were out of our insurance network and there was one in network closer, that we would be required to go there. So now, we are waiting to hear back from this new clinic to get this process restarted. What is even more frustrating is we would be down in Madison in just a couple weeks had insurance just let us keep going. Now, we are starting all over from scratch and have not even gotten in to see them.