With the impending snowstorm, we decided to leave EC on Monday night. We stayed at the Hilton Garden Inn in Rochester; it is connected to Mayo via the skywalk. Finley liked the big bed better than the "orphanage crib" the hotel provided.
Tuesday morning our consult with Dr. Bite (plastic surgeon) began with pictures taken from EVERY angle, like mug shots, including from the top-down, from the chin-up, etc. Dr. Bite's nurse measured Finley's head while another woman took notes...one thing we learned - everyone at Mayo travels in small groups. You know you're the big doctor when people travel with you to take your notes and do your "dirty work".
Waiting for Dr. Bite...waiting a long time for Dr. Bite...
Waiting for Dr. Bite...waiting a long time for Dr. Bite...
Dr. Bite finally arrived and was very nice; he examined Finley to be sure his skull bones weren't prematurely fused (this would require surgery). He discussed the causes of plaigocephaly; suprisingly, it probably started in utero! When Finley was in the womb, the way he was wedged-in most likely started the flat-spot...then it became worse on the outside by sleeping on his back. This took away a teeny-bit of the tremendous guilt I'm suffering with right now.
Based on measurements and observations, Dr. Bite told us Finley's plagiocephaly is "moderately severe" and he's a great candidate for treatment; he is at the optimal age for quick treatment. The final decision was up to us, but we didn't have to discuss it, we knew the right decision.
We then moved to the Physical Therapy / Occupational Therapy department; they took laser measurements of Finley's head. An order was sent for his light blue helmet; it will be ready in two weeks. We discussed what to expect with treatment, what up-coming appointments will be like, his adaption to the helmet, etc.
Finley was prepped for measurements, he wore a silly stocking cap.
Finley was prepped for measurements, he wore a silly stocking cap.
The measurements were taken via a laser machine; nothing touched Finley or was the least bit uncomfortable for him.
I often wondered if Finley's flat-spot (plagiocephaly) was caused by torticollis (tight neck muscles that would cause him to favor looking/laying one direction)...surprisingly his slight torticollis is caused by the plagiocephaly! Total opposite! We met with a physical therapist, she felt that Finley has fairly good range of neck-motion (she wouldn't really classify it as torticollis), she showed us a few stretches to do on Finley's neck. An interesting tidbit...there has been a noticeable pattern of "reflux babies" that have torticollis and plagiocephaly. Perhaps the reflux discomfort has them favoring certain positions; no research has been done, but it it a trend the PT has noticed....coincidence that our recent 911-scare was due to reflux too???
The motor skills of children with plagiocephaly will sometimes be delayed; right now Finley is spot-on for his skills using his adjusted age (4 months) and some even with his real-age (5 months). The PT showed us a few exercises to practice rolling, tummy time, etc.
The motor skills of children with plagiocephaly will sometimes be delayed; right now Finley is spot-on for his skills using his adjusted age (4 months) and some even with his real-age (5 months). The PT showed us a few exercises to practice rolling, tummy time, etc.
As treatment begins we will be monitored and have adjustments by the occupational therapists. PT will check-in to be sure his neck doesn't get stiff, and Dr. Bite will see us once every 4-6 weeks to monitor progress; he will decide when treatment is over.
Our timeline of events....
- December 23rd - Finley's custom-made helmet will be fitted around his ears and head. He will begin wearing the helmet, it's a gradual transition into wearing it. He'll start by wearing it for one hour, off for three, and so on until he's wearing it for 23 hours each day.
- December 30th - We return to be sure Finley is adapting to the helmet and that the fit is correct.
- January 9th - helmet adjustment by OT - as Finley's head grows, the inside will be shaved down to accomodate.
- January 26th - helmet adjustment by OT
- February 10th - helmet adjustment by OT; meet with Dr. Bite for him to monitor progress.
- February 23rd - helmet adjustment by OT
Further appointments will be made down the road, we will continue with the OT adjustments and monthly reviews with Dr. Bite. I will attend the "big" appointments - when we get the helmet and the appointments with Dr. Bite. Grandma has offered to take Finley to the adjustment appointments; after my twelve-week leave, my remaining sick-time is minimal.
My mom thoughts...
The silver lining....
- One look around the waiting room quickly reminded me that we are LUCKY. There were many children with severe mental and health issues. WE DON'T HAVE THAT. So while I'm exteremly disappointed that Finley needs helmet therapy, things could be SO much worse.
- The doctors and therapists reminded us that we will be very happy with the results and things will move quickly (3-4 months).
- The gradual change will be noticeable in just one week!
- We will no longer constantly need to reposition Finley from his flat-spot, the helmet will do that for us.
My perfect little boy... who will be even more perfect in a few short months...
1 comment:
That last picture is priceless...hang in there, the next few months will go faster than you can imagine!
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