One foot in front of the other
One foot back to counter it
Days like these you’ve got to find it in some other way
It’s all or nothing baby
Avalanche, start inside of me
Avalanche, down through the trees
Avalanche, start inside of me
Avalanche, hell down through the trees
“Avalanche” by Matthew Good
I read an email from Susan at The Family Room —who didn’t tell us she was celebrating a birthday this week —earlier this evening and was all set to reply when Nik started howling like he hasn’t done in a couple of weeks. Had he not been in his chair with the pump running it definitely would have been one of those drop to the floor, head slamming episodes. It lasted roughly 40 minutes. Off and on , waves of pain and tears and head hitting coming one on top fo the other. Spent from the effort, Nik has been passed out cold in his crib for nearly two hours now.
Poor Nik was scrunching up his eyes and flicking his right ear and screaming, punching his face and crying and he STILL kept trying to hold my hands to do “If you’re happy and you know it!” It broke my heart. I guess he wanted to do the song/clapping because it’s his favorite thing to do and it makes him feel good. The juxtaposition of the clapping and the teary, scrunched up face…it was all I could do not to cry in front of him.
I thought I was hanging in just fine lately until this happened. We’ve managed to string a few good days together in a row —the nights, not so successful yet. You know, seeing how much it takes out of him and then how far back it sets him when it goes on and on…this is what makes me worry about the future. How can he make the continual progress if he keeps getting dragged down by the cycle of pain and recovery? It’s like we take a giant leap forward and then go toppling off the mountain peak. The falling is the hardest; the initial ascent is rough too —until we find our rhythm again and can catch our breath for just a little bit. It feels like we keep gaining momentum and then we hit a patch of ice and go tumbling down again.
Not the behavior or the skills that Nik is learning and mastering. It’s his health that takes the hit and then he seems to have a fairly significant regression or stagnation. It comes and goes in cycles and seems to take so much out of him. When we’re on an upswing it’s fast-moving and exciting. When the squalls hit, it’s as if an avalanche tumbles us, leaving us buried us for a while. We dig our way to the top and begin all over again. When we are in the trough of that cycle I’m not sure I can see the forest for the trees.
There’s been no real movement on the medical front in so far as finding any answers or any greater comfort for Nik; our appointment with Dr. House’s team isn’t for another three weeks. Meanwhile, we’ve got some other things coming up on the horizon. There’s a multidisciplinary evaluation next week which I am really looking forward to. It’s done by a team of therapists who work with the Developmental Pediatrician whom we see twice a year. They are wonderful people and they really like Nik a lot. More importantly, they haven’t seen him since before we pulled him out of school; I am eager to see what kind of progress they think he has made.
Equally important will be the recommendations they make for Nik’s therapies. I will not be surprised if they recommend an increase in all areas and hope they can help me make the case with Medicaid to increase services. Over the summer, Medicaid had authorized two sessions of each discipline per week instead of the one they cut back to in October (after we pulled Nik from school). Not that I want to increase the number of appointments we have, really, but they did make a huge difference.
After the team evaluation there’s Nik’s four year old check up (!!!) followed by another sedated hearing test (ABR). We had to reschedule the appointment with new neurologist until the end of the month so we had enough time to gather all the necessary records to send in advance. We will also get to see the cardiologist and the pulmonologist this month, too. That’s in between seeing the orthotist to adjust Nik’s ankle-foot orthotics and seeing the Rehab Engineer to adjust the seat and foot plates on Nik’s chair…and to possibly order a special bed for Nik. Oh, and I think there’s Christmas in there somewhere, too!
Whew, putting all that in writing makes me grateful that I have started to ask for help.
In another health update —mine— I am finally getting the coughing crud mostly under control. It turns out I contracted a staph infection —NOT MRSA — on the heels of a plain old upper respiratory infection and it turned into tracheitis. Not highly common in adults —we usually get bronchitis then pneumonia — it is basically croup. Well, you know, I like to think of myself as a kid at heart! Before I went to the doctor this week and got some antibiotics and cough syrup with codeine (that’s my excuse for my rambling writings this week!), it felt like a mule team had been tap dancing on the base of my throat and I was coughing so much, especially at night that I was hoarse and experiencing some embarrassing hygiene situations if I coughed too hard (don’t make me spell it out, people!). It’s still not so great at night but that may simply be aggravated by Nik’s renewed nocturnal waking this week. Still, I feel much better and managed to actually go work out this morning. I had to reintroduce myself to my trainer it’s been so long!
So, like I said in my previous post — you know the antithesis to this one? —it’s been a very full week.