Making Room for a Shifting Plan

It (is) has been a tough road to recovery; particularly at night. Some nights over the past almost two weeks (tomorrow is two week post-surgery point), Josh has slept only 3-4 hours. I feel very much like the parent of a newborn right now. Absolutely no energy. We certainly understand now why a tympanoplasty is rarely performed on children this young–that is, you have no idea if they are in pain, hearing strange sounds (I’ve read from adults recount of the experience that this happens), popping ears, some sort of residual memory of surgery cropping up? Just not sure. We just continue forward and it seems that although one day might be worse, the next is better and so, on a whole, forward progress. I finally started using his sensory brush again on Monday, just once a day at this time. I think that is helping to reintegrate his systems. He had become so inflexible once again that there were only two shirts he’d wear (both Buzz Light Year) and one pair of pants (size 18 mos., which he’s somewhere along the way dubbed his “Buzz” pants). This increasing inflexibility was a signal to me that all of our hard OT work over the past five months was just running down the drain, after a week or so of lots of Curious George and Bernstein Bear videos (to keep Josh from moving around too much) and no brushing. Thus, Josh was receiving very little proprioceptive input.

Also, the big news is that we are deferring our John Tracey enrollment for one year. When JTC learned about the Tympanoplasty, they suggested the delay. Josh won’t be able to have a hearing test in his right ear until at least the end of August. And so we will not know his current hearing levels. For this reason, I’m thinking no hearing aid in that ear either, but waiting to talk to the ENT at our post-op and then his audiologist. At this time, Josh still seems to have very little hearing in that ear. We know, however, it can take a long time for the hearing to return after a tympanoplasty. John Tracey Clinic wants him coming when he is at his hearing best, not his hearing worst. We agreed that this makes sense and we were also concerned with flying so soon after the tympanoplasty. We certainly didn’t think it was worth risking the ear drum repair. And so we will be home his summer. I am not even sure that I’ll put Josh in his school for the summer session. Hannah is going to take care of Josh a bunch this summer as it works well with her early start at school in August, she will be an RA this coming year, and a June trip to Japan. I am thinking that this should be a summer where Josh just gets to be a kid. Of course, he’ll still go to OT and perhaps a new SLP that is more focused on speech fluency, which is his current language issue right now.

I’d like to share with you a quote that I keep sharing in my yoga classes. It is a quote I found valuable during a difficult time in 2007 and I dug it out of my 2007 journal recently. It keeps rattling around in my brain.

“Life is not the way it’s supposed to be. It is the way it is. The way you cope with it is what makes the difference.” Virginia Satir

  1. Sarah said:

    After Jadon’s 1st surgery (in the US), he had horrible nightmares and woke up a lot. We didn’t realize until later that they were probably caused by the pain medication.

    So sorry that the sensory stuff is in full gear. It makes sense that he would regress in that, but I bet he’ll move forward more quickly as a result of having already worked on the sensory therapy.

  2. Julie Coleman said:

    I’ve been thinking of you guys and wondering how Josh was doing. Hoping that you have more good days than bad as he continues to heal. So glad Hannah will be able to help out this summer. 🙂

  3. Poor kiddo – surgery is so hard on kids. I hope he has more restful nights soon – those long nights are hard on everyone. Good idea to defer JTC for another year. He’ll be a year older (the three year old classroom rocks, as does the 4 and 5 y.o. classroom), and he’ll have a better hearing picture than at the moment. I love that quote, by the way!

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