Wednesday, October 10, 2012

Update on the Maxy-Moo

For those who have been following along, we took Max to the craniofacial disorder unit at Doernbecher Children's Hopsital at OHSU (Oregon Health & Science University) today to have his head evaluated for plagiocephaly (basically, flat spots on his head).  The nurse-practitioner was very nice and determined that the plagiocephaly was positional in nature, that is, due to him holding his head cocked to the right all the time.  She measured his head and said there is a 10 mm asymmetry, and 10-12 mm is the range at which OHSU recommends a helmet...but that's no guarantee that insurance will pick up the tab.  So, we're going to meet with the orthotist and have him fitted for a helmet.  The orthotist will send all the information and the prescription to insurance, and they'll either say yes or no.  If they say yes, hurray!!!! If they say no, well, Max gets to have an asymmetrical head, because helmets cost between $1900-$2500, and we don't have that!  But the good news the NP shared with us was that in OHSU's studies where they follow up with families who pursued the helmet option and those that didn't, both groups felt equally happy with the decision they made and felt that their child's head looked fine to them.  For Max, it will essentially be a cosmetic thing.  I'm still hoping that insurance will pay for it, but if they don't, it's good to know Max is going to be okay.  His head is growing at a proper rate, and the most important thing is that he continues to get physical therapy and stretching for his torticollis.  If that gets corrected, the NP assured us that his head shape will take care of itself.
I'm so grateful that we live in a city with a Children's hospital and lots of specialists.  I can't imagine living hours away from a hospital.  I'm grateful that Max has excellent insurance and to all my fellow taxpayers in Oregon who are contributing to it.
And I know, I need to get some pictures of the boy up here! It's been a while. But for now, I need to get Ruby up from her "nap" (i.e. quiet time in her room...no sleeping took place during that time!)

2 comments:

  1. Hi! Just found out our son has tort. Were you happy with your pt? We are looking for one in the portland area.

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  2. Hi kjo! Yes, we loved our PT. We went to Neurotherapeutic Pediatric Therapies in Oregon City, but I see that they have a NE Portland location as well. We saw Rachel Wachter at the Oregon City office and she was wonderful. Max is now 5 and you would never know that he had torticollis at all. My daughter also had OT at Providence Children's Development Institute (located at Providence Portland Hospital) and we had a great experience there as well, and I know they do PT as well. I wish you and your son the best! Please contact me with any further questions at jgracelowe@gmail.com.

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