After last week’s physical therapy appointment for Andie, I was just drained. We went there expecting one thing and ended up with something completely different. As far as we knew, Andie had Torticollis and would need some physical therapy in order to loosen the neck muscle associated with it. We were told that we’d probably only need to meet with the therapist a couple times and would learn exercises to do at home and then we’d we good to go–not the case at all.
We met our PT, Angela, and she had us strip Andie down to her diaper and then place her on this big mat covered with a fresh white sheet. She started off asking us a bunch of questions and then she started her assessment. She had Andie follow toys from one side to the other while on her back and tummy and did some other assessments to check her spine, etc. As she was doing this she said that Andie has a very classic case of Torticollis–there’s no denying that she has it whatsoever.
Then she asked us if we noticed that her left eye was slightly smaller than the other (it looks like it’s closed a bit more than the right side) and we said yes but never thought anything of it. She then pointed out that Andie’s forehead on the left side bulges out a little more than the right side which is actually causing her eye to appear that way. In addition, she pointed out that on the left back side of Andie’s head it is flatter than the right. The back right side rounds out a lot further and when you look down at the top of her head you can see that there is an asymmetry occurring.
It turns out that the Torticollis has caused her head to become misshapen because it is still so soft. Angela called her case Deformational Plagiocephaly. She then took meaurements of Andie’s head and told us that there is a 14 mm difference (which she says is significant) between her left and right side. She referred us to an Orthotist to have a head scan done in order to see about a cranial remolding orthoses (remolding helmet).
At this point I had a huge lump in my throat. What in the world was happening?! How could acid reflux cause all of this?! We went in so lighthearted about the whole thing and all of a sudden we’re hearing that Andie’s head is misshapen and that she might have to wear a helmet 23 hours out of the day, every day, for however many months. Oh and that helmet? Not covered by insurance because it is “cosmetic” so we are looking at somewhere in the range of $3000 if Andie needs one.
I wanted to cry right then but I didn’t. The PT could tell by the look on my face that I was overwhelmed and she tried to reassure us about everything. She is very confident that between working with her at home, going to physical therapy (we are now going 2x a week per her recommendation), and possibly her wearing this helmet, everything will be fixed. I am beyond grateful that Andie is in no pain and isn’t facing something like an illness, etc. but it is still so hard to hear that something isn’t right with your child. I cried later that day and haven’t cried anymore about it since. I want to be as positive as I can about the road ahead and what that might look like especially because I know that everything can be corrected–it’ll just take work to get there!
Andie’s next physical therapy appointment is tomorrow and Angela will begin teaching us some exercises so that’ll be great. I really like her and I’m glad that we’ll be seeing her every time for PT. They have us scheduled until March but who knows, maybe we won’t need to go that long! The head scan has also been scheduled for the 23rd of this month so please pray for the best possible outcome; whether that means she doesn’t need a helmet at all or she’ll only need it a few months.
Andie is still a happy, smiley, healthy baby and she’s been meeting every developmental milestone she’s supposed to–that is a lot to be thankful for!!