Amidst all my praise for all the progress Roger has made, there is one area in which he has not improved. It’s his feet. When he was little, Roger never wanted to be barefoot. Then, there were a couple of years that Roger would only wear rain boots. It was when he was 3-5 years old. Any other shoes would cause him to meltdown.
Sneakers have been really tricky. We used to be able to do Velcro sneakers. But, alas, the Velcro starts to be less effective/less sticky and Roger would meltdown trying to reattach the Velcro over and over again. We decided, since the Velcro were never tight enough, to do lace up sneakers. He has been using lace up sneakers since he’s been in baseball. That was how we got him out of rain boots for one day a week — he had to wear sneakers if he wanted to play baseball. Thankfully, he eventually gave up the rain boots and will wear either sneakers (for school and baseball) or flip-flops.
Every morning has gotten increasingly worse since spring break. It used to be tying his shoes 2, maybe three times, for him to be okay with them, for the shoes to be tight enough for him. This morning I tied his shoes five or six times before we left for school. He was in tears, screaming and hitting his head. They still did not feel right to him. I told him we had to leave or he’d be late. Once we got to his school, he asked me to tie them one last time. I did.
It’s so heartbreaking to see my son react like that. When he was younger, he had many more meltdowns and would hit his head. He outgrew/out-therapied the majority of that. It’s just the damn shoe issue that keeps rearing it’s ugly head. It will subside for a bit and then get ridiculous, and then subside, and then get out of hand again. I am wondering if it is linked to anxiety. Obviously there is a sensory component but for it to flare up, I think there is something else going on: anxiety, OCD, control issues. These are the only times he gets violent — recently with hitting himself in the head and in the past (January 2018) with him hitting his head into my back.
Tomorrow he has baseball and I know the shoe tying will be a nightmare in the morning. He’s also informed me that he is getting a small hole in the toe of his shoe and that he wants to buy new sneakers tomorrow. Oh boy, sneaker shopping with Roger is a whole other story!
I look forward to Sunday when he can wear his flip-flops.
This week has been mentally exhausting for me. I had my second neurosurgeon opinion on Tuesday (3rd opinion overall, including last year’s orthopedic surgeon opinion). All surgeons agree that I should have surgery. Two told me the time frame was up to me while one told me I needed to have it in 2-3 weeks (all were looking at the same MRIs, x-rays, reports). I had read that for cervical surgery one should have a neurosurgeon instead of an orthopedic surgeon. That narrowed my decision to two.
After consulting with my husband, asking on a few ACDF Facebook groups, texting/messaging nurse friends, and writing a pro & con list, I made my decision by Wednesday morning. It was an incredibly difficult decision filled with much anxiety and sleeplessness. I didn’t have a “gut feeling” about one doctor as I had with the ulnar nerve surgery. Each surgeon had polar post-surgery protocols. That made my decision much more confusing. I was not only choosing a surgeon but choosing which recovery I thought would be best for me. One said I would be in a collar for 3 months 24/7, the other said I would be in a collar for two weeks when I was up and about (not while sleeping/sitting). Thankfully I am OCD, so researching is second nature!
This week I also began seeing a new psychologist. I am trying “telehealth” which is basically skyping with a therapist. My new insurance uses Amwell, so I thought that with my time constraints it would be an easy solution. It was the perfect timing with surgery happening in less than four months from now.
The psychologist was a good fit. She understood having a special needs kid, my stress level and, overall, current situation. I feel like it was almost kismet that I made the decision on which therapist to use. The past few weeks it has been suggested to me (by independent sources) that I should use Mindfulness-Based Stress Reduction. The psychologist also made this referral. She told me a couple of websites to consult, one being a link to a free MBSR online course. I read the Introduction/Getting Started sections and will, formally, take the plunge this upcoming week. It is an eight week course which requires 30 minutes of practice time per day. That will be difficult but I really want to make this commitment to myself. (If anyone is interested, the website is palousemindfulness.com)
Today I have the best of intentions to clean the remainder of the house while my son is out with daddy this late afternoon. In anticipation, I have been doing a little bit of dusting here and there. Oh my, my back/neck/arms hurt! I am doing NOTHING intense, just walking and mildly dusting.
My thoughts as I continued to dust: do I even need another neurosurgeon appointment?! (I do just in regards for timeframe surgery may be necessary). A few days ago I read through blog posts from July describing my neck/arm/head pain and remembered how physical therapy made it more unbearable. I guess the months that the pain diminishes or lessens in degree, I forget about the painful months. I don’t have many readers to my blog but this journal really helps me in keeping a log of pain (physical and emotional).
Last night, I looked over at my son beside me in bed. It caused he most excruciating pain. I must turn my body when I am upright and looking side to side. It brought tears to my eyes realizing surgery may be closer than I hoped.
Despite my sleep deprivation, we had a fabulous Sunday at Fort Worth Zoo. The weather was perfect and the animals were mainly awake and visible. The last time we went to this zoo, Roger was three years old and not at all interested in the animals. His autism made him only interested in fans, the train, and other inanimate objects. This time he had more interest in the animals but really was interested in the dates on plaques. His brain must be filled with pages of dates. According to him, he takes pictures in his mind that he pulls up when he talks about specific people in history. He will be looking at a book and if he needs to put it down to go to a class or therapy, he says he has to first take pictures with his mind. It is so interesting to hear him vocalize how his mind works.
Yesterday and today were days to get back into the regular routine of school and work. I am adjusting better to life in my upstairs office, although I still have hiccups that require almost daily calls with IT. I am still trying to figure out the balance of housework, Roger’s therapies/classes, trying to exercise, and my job. I have decided to let some things I wanted to be weekly to go on a bi-weekly schedule. I think that may help out my stress level. I have also asked Rob to take over Roger’s after school schedule every other Wednesday so I can deep clean the kitchen and bathroom. It may not be exciting to you, but it’s been plaguing my mind.
I wish my mind was filled with pictures that I pull up, rather than lists of scheduled activities!
Let me catch you up: Thursday and Friday nights I had terrible allergy attacks at night and, therefore, slept terribly. Yesterday, we still ventured to the St. Paddy’s Day festival in Lewisville but I was in a foul mood. Some of Roger’s behaviors that I may have overlooked on more rested days, I got quite upset about yesterday. So, last night I decided to take Zyrtec-D since it is always a go-to when my sinuses get really bad. However, it’s been a few months and I forgot that horrible side effect it has on me.
I fell asleep around 11 and woke up wide awake at 12:25. I tried for over 3 hours to fall back asleep, even taking melatonin. My last attempt at sleep was counting backwards from 1,000 (which is in a sleep meditation I sometimes listen to). When I could easily count backwards and not get tired, actually be more awake, I realized it was time to get up.
I got up and started working at 3:45 am. I usually only have an hour – 90 minutes of work to do on Sundays. I was worried Roger would wake up and not fall back asleep, but I could not be a prisoner to the bed anymore. Of course, Roger woke a few minutes past 4 calling for me. I told him to either lay in bed and I’d put on the light or lay on the couch outside of the office. He chose the latter but never fell back asleep.
We came downstairs after I was done with work at 5 am. I cleaned up the kitchen some, got the animals’ water dishes refilled, filled up the dishwasher, and sat with Roger while I drank two cups of coffee. Then I started a wash and decided to start riding my bike and blog.
We still plan on going to the Fort Worth Zoo today. I actually think my exhaustion will hit later today or, most likely, in time for work on Monday morning!
It is the Friday of spring break. Unfortunately, it was not quite a break for us. My husband and I had work and my son was in camp all week. Luckily, he was so excited for camp each day and said he had a best friend at camp. Last night, we went to Main Event and played video games and Roger got to play laser tag with a friend from his school. Today, after camp, my husband is taking him to the park and then we will all go to my parent’s place for dinner (bringing over Chinese food). Roger is probably a bit disappointed I did not go to the park, but I woke up with horrible allergies. It’s that time of year when I start having days that feel flu-like but know it is just what happens when the weather is nice. I get to only explore the great outdoors on hundred degree days that are allergy-free. This is truly not fair!
I have decided to have another appointment with the neurosurgeon I met with last year prior to my ulnar nerve surgery (who recommended traction). I have an appointment with him two days before my follow-up with the new neurosurgeon. As you can see, I am really wanting avoid surgery!
I have not received a call from the imaging place yet re: x-rays. I called them yesterday and they did not get the order yet. They said they will call me. So, this afternoon I emailed the neurosurgeon office via the patient portal and will follow up with both over the phone on Monday early afternoon, if I hear nothing.
Now that a couple of days have passed, I feel like the idea of surgery is a long-past memory. I am cheerful, despite allergies. I am loving my new office arrangement and ordered a new, larger turquoise rug (to compliment the orange walls), so I can stretch during breaks.
Tomorrow hopefully my allergies can subside so we can enjoy a day outside in the gorgeous weather. There is a St. Paddy’s Day Texas Style festival in Lewisville I would like to check out. I have also heard the Dallas Arboretum is beautiful. Hope you all have a fabulous weekend!