OK. So it took me some time to sit and blog since my birthday. I've had too much in my head I had to work out and get straight. Things like Clayton's school, the question of his therapy services, his primary care doctor situation, my school, George's school...priorities. I needed to get some things straight. So on to the updates...
Clayton's last scans from April were good and we scan again in September. If his September scans are good that will be three years post chemo with clear scans. That's a milestone. We will also be doing another stent replacement in September. We will visit with the Orlando Urologist in October to get a better game plan on his kidney and sometime between September and December we have to find a good week to go to Dallas. So we are going to have a busy fall.
Which leads me to my decisions. I had applied to go to grad school through Troy online getting a Master's in History with the thought that I might could teach on the college level and possibly have a schedule that would work with Clayton and provide a second income. I went through the motions, was accepted and even had my schedule, but ultimately I had to decide it wasn't best. Sadly, I don't have time, while also focusing on my health, Clayton's medical, Clayton's school, Clayton's therapy and helping George stay on track with his school. We made the decision years ago that George's job was to work and mine was to care for Clayton. Which means our goal is for George to finish school and get a better paying job and for me to manage everything Clayton. So no school for me. It's hard for me because I hate sitting still. I would love to travel the country doing something different every few months. So feeling like I'm sitting still in my current situation always leads to me brainstorming new ideas to mix it up. None of which work with our reality, but I brainstorm none the less. So, since I was running out of time to make these decisions, I really had to take the time to sort it out before August.
Then there is Clayton's schooling. After talking with folks at the county, public school really will not work for Clayton. They either offer a few hours a week of homebound services or all day school days; one is not enough and the other is too much. Clayton needs more than the homebound services, but anyone who knows him knows an all day school day won't work for him. I was semi hopeful they might have something that would work because it would give me a much needed break, but they don't. So homeschool again it is. Plus I can't lie, I hate the idea of having to answer to someone anytime we want to keep him out of school. Some days he could be having a bad day and other days we might want to go on a vacation, who knows, but I have zero interest in answering to a school system for that. I love the flexibility of homeschooling. And since I have to stay at home with him anyway...As for people wondering why I "have to" stay home with him...childcare in general is ridiculously costly, imagine childcare for a special needs child like Clayton. Even on two incomes, we couldn't afford that; we were having issues with that when I was working.
Which brings us to the next update...Clayton's therapy services. The Autism center in the area finally opened and we signed Clayton up. We have done his speech therapy evaluation and his occupational therapy evaluation and are about to start his sessions. I really like the center so far and am excited for Clayton. Our insurance covers his sessions 80/20. Which is decent, but would still be tough with four sessions a week on top of his medical expenses. But here is the kicker...insurance only covers 30 sessions per year. 30 sessions per year when taking 4 sessions per week (2 speech, 2 occupational), you do the math. Not gonna get us very far. So as great as the place is and as much as we think we like it, I have no idea how we are going to be able to get him the continued services he needs. Still working on that one. But the good news is for now he's in.
Clayton has to be one of the most expensive children in the history of expensive children. I think it is only fair if God grants us wealth to cover these expenses...just saying.
When you have a kid with whom so much goes wrong it can easily feel like you just can't win. Cancer, kidney disease, 100 degree scoliosis/kyphosis (twice), autism, non verbal, respiratory issues, MH precautions, I can go on...but you get it. It's a lot. A lot of situations in which winning is not the term that comes to mind. Especially when you have fails like being shunned from your pediatricians office all because as parents we reserve the right to decide what is best for our child. As I've said before, we choose not to give Clayton full vaccinations. Quick recap: He had all of his vaccinations up until 3 yrs and had to discontinue them during his cancer treatment. After much consideration, we decided the best route for us was to pick and choose which vaccinations where necessary risks and which where not. We have seen enough that we are not comfortable injecting his seemingly sensitive/traumatized body with every vaccination, given that scientists and parents can not seem to agree on their safety. So we choose to proceed with caution. Anyhow, we discovered no private practice pediatrician will touch him unless we agree to full vaccinations. That led us to the Sacred Heart Pediatric Care Center. But that was really not our cup of tea for multiple reasons. So it occurred to me that a family practitioner might not feel the same way as a pediatrician. After all, plenty of adults are walking around not fully vaccinated. I did have one office tell me no and then...ba- bam! Score for Rachel. After checking out that route and asking the recommendation of a dear physician friend, we found Clayton a LOCAL family practitioner that is happy to give him the vaccinations we are comfortable with and abstain from those we are weary about. Winning.
I needed that. Its been a tough few weeks.
Again, my stance on vaccinations is my personal decision. It is not a fad or decision made for trivial reasons. Having been with Clayton on every step of his medical journey, I believe he should qualify for a medical exemption due to the sensitive nature of his body and his uncommon reactions to various things. Some doctors disagree with my decision because he is not currently considered immunocompromised. However, those doctors don't have to care for him 24/7 if something goes wrong which is why ultimately it is my decision. And seeing as he is already autistic, that clearly is not my concern so please just don't go there.
As for me, my doctor decided to tell me I had Generalized Anxiety Disorder. No shit sherlock. This I know. Have you met my family? Anxiety is a common theme. The problem isn't that I have Generalized Anxiety Disorder, the problem is that I have Generalized Anxiety Disorder and a kid like Clayton. It's like a twisted joke to have the two...together. In cases such as these it should be one or the other, not both. So anyway, after years of Clayton stress, things going downhill, no end in sight, everything with my recent pregnancy and increasing physical symptoms of stress, I have finally gotten some meds. I am not big on meds; though I don't agree with the stigma around them. I prefer to manage things naturally if possible. For a while that worked for me, but eventually things got to be too much. My neurologist and family practitioner agreed I was showing too many physical symptoms of stress and needed help to correct the chemical imbalance that has resulted from 7 years of extreme stress. So I'm trying some meds for maybe six months to see if they help. Lord I hope so. Again, I hope people have the sense to distinguish between anxiety and depression. They are completely different. I have anxiety...and for good reason. I am not however depressed at all. I love my life and I want to be present for it.
As for my back, I have a Vertebral Hemangioma. It is a benign tumor on my spine (T8) that protrudes into my epidural space which consequently causes some of my symptoms. The majority of these benign tumors are not symptomatic and need no treatment. Since mine is symptomatic, I am waiting to see a neurosurgeon to see what course of treatment, if any he would like to take. Since it is a benign tumor though, it will be 2-3 months before I get to see the neurosurgeon. He seems to be a busy man. In the mean time, if my symptoms need management, my neurologist can handle that. If my symptoms get worse, I might can get in to see the neurosurgeon sooner. So nothing on that front right now.
I think that covers the main updates. I'll try and post more often!
