We started doing the stretching that Suzan taught us in therapy before every feeding. At that time, the girls were still eating 8 times a day, so we got a good amount of home PT in between our visits with Suzan. We went every Monday for about 2 months and finally once Jolie reached 100% range of motion we started going bi-weekly.
We continued to stretch her several times a day and she continued to improve every time we made a visit to Our Children’s House.
One day we walked into therapy and I made the comment that Jo has been so straight the past couple weeks. Suzan pointed out that she noticed that Jolie had started to hike her shoulder to compensate for the straightening of her neck, so we learned some new stretches in therapy. We would encourage play with only her right hand and arm for 10 minutes at a time to prevent that hike as well as leaning Jolie to her weakened side while holding the opposite shoulder down. She loved watching herself in the mirror while we did this. We would sing to her and dance, and the silliness of momma and dad would be of distraction for what stretching and exercises we were actually doing.
Finally around 7 months we transitioned to monthly visits.
At this point Jolie has full range of motion and just a 5-7% tilt. Technically the baby is ‘cured’ with just a 5% tilt, but Jolie was never consistent with that 5%. She continued to revert back to the tilt she knows, like a sense of comfort. I can only imagine it is tough work to hold her head straight, so she gets especially ’tilty’ when she is sleepy or doesn’t feel good.
Attempting to cover all our options, Suzan mentioned that some find success in using a TOT collar. Suzan explained that she wasn’t sure much therapy could cure Jolie’s tilt- almost like she was being ‘lazy’ with her neck. We noticed that she was straight about 80% of the time.. and the other 20%, she would either tilt completely or hike her shoulder up. We decided on the TOT collar for further correction and to see if this would resolve her tilt and encourage Jolie to hold her head straight 100% of the time.
About 2 weeks ago we ordered the collar and once it came in we went for a fitting with Suzan.
Waiting for Suzan!
No so bad..
We learned that Jolie has an extremely tiny neck. Not only is it really short compared to Perfect Posture Parker, but it is really little. She gets that from her momma.
..by the way.. what is it my child is playing with.. looks like some kind of chain saw toy??
She did really well with her fitting and didn’t seem to mind having it on for the most part.
Ove the last two weeks I feel like we’ve seen real improvement with her tilt. She wears the collar 3-4 times a day for about 15-20 minutes.
Some days dealing with Jolie’s torticollis has felt like a lifetime and other days I’m impressed with how far we’ve come since her diagnosis.
What I do know is that all the stretching, physical therapy, and time spent working on her functionality has been well worth it to her daddy and me.
Next month is thought to be Jolie’s last PT appointment with Suzan. Very bittersweet, as she has seen us through it all, but so exciting to think we could be finished and Jolie’s teensy neck to be normal. I am so very thankful our proactive pediatrician that decided that we did not need to wait another month before dealing with torticollis. We got Jolie into therapy quickly and was able to tackle tort head on and aggressively from a very early age. I’m also so very grateful for the solution to this disorder to being so common and easy to fight against. Throughout this past year, Jordan and I have been blessed with passionate and talented medical professionals- from my OB/GYN and perinatologist that carefully walked me through pregnancy and delivery and now with our amazing pediatrician and physical therapist, Suzan. There have been many blessings along the way, and I am amazed to see God’s hand in every single bit of it. I know He is always there- but there is something about the feeling you get when you can actually see His plan panning out just as he intended it.
He is so so GOOD.
August 28, 2013