Some days, heck! some weeks are like this… one foot in front of the other. What are today’s priorities? What is about to become a crisis? (Ahem, for me it’s paying my 3rd quarter sales tax… I’m about to give up on waiting for my WebFile number to show up in the mail and just send it in SnailMail.) Since the kids started back to school, it’s been one long blur of medical appointments, tests, specialists, therapy (the marriage kind, sigh), and fighting off the blues.
First I’ll update you on Anna. She has a number of issues she’s currently dealing with. One is fatigue. We’re talking about falling asleep at school, sleep 12-13 hours at a time, and always being tired kind of fatigue. For a 10-year old, this is not normal. We found out in the spring that she has hypothyroidism which means that her thyroid gland has stopped producing enough thyroid hormone, so she started on synthetic thyroid called Levothyroxine. We had her levels checked three months later and I expected them to still be abnormal; however, they were fine. So chemically speaking, she is stable. But she is still showing symptoms of having hypothyroidism. So then began a very long process of ruling things out. She had a sleep study and EEG in September, then we followed up with her neurologist a few weeks ago. The EEG was normal. The sleep study showed 2 central apneas (cessation of breathing that is brain-based), 0 obstructive apneas (cessation of breathing that is usually structurally-based like large tonsils), and 20 hypopneas (mild ,shallow breathing events that are muscle-based). The neuro wanted us to follow up with the endocrinologist and Anna’s ENT doc.
We couldn’t get in to see the endo, so our neuro intervened and spoke with her by phone (and I love that I’m able to take care of so many things with him via email… I have such a great team surrounding Anna). Together they ordered a ton of labs… I think it was five vials of blood they took last week. We’ve seen the ENT twice now which is another issue Anna is dealing with. She’s been having trouble hearing. For quite some time, she’s been saying, “What? I can’t hear you.” She either won’t respond or say “what” multiple times. At first, we thought it might be an auditory processing problem. She had her hearing tested in late August and it showed moderate hearing loss in both ears. She had quite a bit of wax buildup so we went on a six-week crusade of hydrogen peroxide drops in both ears and eventually got both ears cleaned out. This week, we had a follow-up hearing test and guess what? She had the exact same results as before! She can’t hear and they don’t know why.
So the ENT wants to pursue an ABR, an evoked auditory brainstem response hearing test under sedation at the children’s hospital. I hate putting her under general anesthesia but we don’t know if her organ of hearing is damaged or if it’s a problem in her brain. I suspect it’s in her brain because the preliminary conductive hearing tests are good. If the problem is brain-based, there may be nothing they can do to help her hear better. Then we went over the sleep study results. The ENT said sometimes the adenoids grow back (did you know that? I didn’t! Anna had her adenoids removed last summer when she had a second set of PE tubes inserted in her ears) and he could take out her tonsils, check the adenoids, and replace the one tube that’s fallen out. But Anna had a very bad reaction to the post-op pain medicine last summer and was in a lot of pain for 2 weeks. I don’t want to put her through that again when we aren’t even sure her apneas are structural in nature. In fact, I’m more convinced than ever that her sleep issues are brain-based too. So I really said, “No” to the idea of surgery. I am 100% confident that her daytime fatigue is either related to something chemical, hormonal, or metabolic.
So that’s Anna’s update. She is doing well in school. We finally got bus service and she is enjoying riding the bus. But she’s been missing a lot of school for all of these appointments and anytime I drop her off late, she always cries. She cries when I have to leave her on the weekend or weeknights too and it breaks my heart. Curtis is quite concerned about this higher level of separation anxiety. I don’t know what to do to help her with it.
I’ve had my own health issues too (and of course, I worry about Anna’s future… will she have fibro and arthritis and connective tissue disease?). I was also diagnosed with hypothyroidism shortly after she was and my chemical levels are now good too. That was so weird though, just a few months apart with our diagnoses. I’m now over 10 months post-op from my knee replacement and that darn knee keeps swelling and swelling. Every 3-4 weeks, I get 40-55cc of fluid drained. I’ve started seeing a rheumatologist and after some testing, he’s started me on Sulfasalazine, an auto-immune medication. I’ll see him next week for a follow up but my knee is still swelling regularly. And no one knows why! Plus my vision has been blurry lately. I finally caved in and saw my eye doc and he said my corneas were inflammed. What the heck, right? Three weeks later, eye drops and a new contact solution, my vision is almost back to normal. Enough already!
With all of my appointments and Anna’s too, my own goals have slowed down. Curtis and I hit quite a bad rough spot in the last few months so we are seeing our marriage counselor once a week and digging into some deep core issues. Personal growth work is hard! So I’ve been chasing the blues around like a sad, sad puppy. Some days are better than others but I haven’t had the space to be creative or in touch with my writing, designing, or photography in very fulfilling ways. I’m hoping that by doing a big mental vomit here, I’ll start fresh with more hutzpah. I’m ready to smile and be happy again.
The only good thing about going through hard times is that things always turn around at some point and it helps you appreciate them that much more. Kinda like when you get sick… when you feel healthy again, you don’t take it for granted. I know everyone has challenges and I’ve been reluctant to share mine, but it’s such good therapy for me to write, that I needed to connect with you all. <3 Thanks for being there for me. Smooch!
