Mikey's journey is just beginning

[Guest guest]

Warning: I'm very wordy. )

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. Our only concern is we

might be moving to Oregon in October. They said that while his expected

timeframe is 3-4 months, he could be done sooner. Maybe we won't have to travel

back to Arizona. Here's hoping! I'm optimistic since he improved even more

this month, just with positioning and PT.

Does anyone know of anyone who does band decorating in the valley?