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Wednesday, June 30, 2010

Mikey's DOC Band Journey Begins

Despite severe torticollis and upper-body weakness and asymmetry (to the extent that he refused breastfeeding), Mikey had a perfectly round head until four months old. Around two months old, we started with positioning, stretching and chiropractic care. He always took two steps forward and one step back. When he stopped taking steps forward, around three months, we started craniosacral therapy. Again, two forward, one back, until there were no more forward, around four months. Shortly after we stopped CST, he developed a little flatness on the left.

We tried homeopathy next, mostly for overall wellness, but soon after our evaluation with the naturopath, we discovered that he was, in fact, aspirating, as I'd suspected since he was a month old. We discontinued the homeopathy when his feeding tube was put it. Somewhere between four and five months, his head suddenly bulged out to the right. It happened over about a two-week period. We finally asked for a referral to physical therapy.

We had our PT evaluation at the end of April, just shy of six months old. By this time, the plagiocephaly was pretty severe. The PT showed us more exercises and stretches that we could do through the month of May while we couldn't do PT because Mikey was having surgery to take down the vascular ring causing his aspiration.

June 1st we had our final appointment with the surgeon, since Mikey was healing perfectly. (Check that off the list!) Then we went to our first official PT appointment, where she told us his improvement was so slight that we should get a helmet. (Add that to the list.) This was the first time anyone said "helmet" to us. I left that appointment crying, refusing to take the information. I had a number of reasons to be upset. The biggest reason was because of everything we'd been through to this point; this was just ANOTHER brick in this unending yellow brick road, and we still couldn't see the emerald city.

I realized that we had been doing everything right, and we were quickly losing time, since he was now seven months old, so this is our only option. So we had our pediatrician-required appointment with the craniofacial surgeon to get their blessing. Then we waited and waited. I finally contacted Cranial Technologies (the company contracted with my insurance) to schedule the evaluation myself. I'm glad I did, since there was a wait to get in.

We had our evaluation yesterday, and they said that he was a great candidate, and he should be a lot worse, based on his history. They said that while his expected timeframe is 3-4 months, he could be done sooner. Here's hoping! I'm optimistic since he improved even more this month, just with positioning and PT.

We should have his imaging appiontment very soon, and we'll get the helmet two weeks after that.

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