Tuesday, March 15, 2011


"God grant me the serenity to accept the things I cannot change, courage to change the things I can and the wisdom to know the difference." 

Bella and her helmet... Bella and her torticollis... When will it all end? There does not seem to be a light at the end of the tunnel and it's so frustrating. Bella had her appointment with the orthotist today, as well as a physical therapy appointment. I left both appointments feeling very disappointed.

Our appointment with the orthotist went okay today. It wasn't good, it wasn't bad... it was just okay. The orthotist said that once Bella is a year-old we will probably only need to be seen once a month. Once a month is definitely better than twice a month but I am so ready for Bella to be finished. She is making progress in the correction of the asymmetry of her head, but she is progressing slower than if we would have began treatment earlier in life.

I've been doing a lot of thinking recently and I feel very frustrated with the progress Bella has been making in physical therapy, or lack thereof. Bella began physical therapy at the age of 6-months and has made little to no progress. It seems like every time she begins to make progress, she gets sick or something happens and her neck reverts to the tilt. Take this past month... Bella has been sick more than not and this causes her to revert to tilting her neck. I usually don't address the tilt while she sleeps when she is sick because who wants to be stretched and manipulated when they're already sick? And she's getting older and it makes the stretching exercises even more difficult. She fights me when I try to stretch her and it's down right violent at times. She will often throw her head back and she has actually caught me off guard a few times. She screams and cries and it's a miserable experience for both of us. Sometimes it's more trouble than it's worth. The physical therapist mentioned a neck collar of some sort that can help correct her tilt. The only problem is that she can't wear the collar and the helmet at the same time, so we have to wait until she is finished wearing the helmet... Grrrrrrrrrrr!

I'm really frustrated... I'm frustrated that all this wasn't diagnosed until she was 6-months-old and I'm frustrated that she is not progressing faster. And apparently, I'm not the only one who is frustrated. Today, after speaking with a family member, I was grilled on Bella's progress and basically told to obtain a second opinion. This family member thinks Bella's head shape is fine and the helmet should be removed and that she should be finished with physical therapy by now. I tried to explain that while Bella has made progress with the helmet, progress will be much slower because of her age. I'm not giving up on the helmet until the specialist gives us the okay. I also tried to explain that she has made progress in physical therapy, but we've experienced a few setbacks recently and she has regressed. I'm not giving up on the physical therapy until the physical therapist gives us the okay. 

Patience is a virtue, a virtue have not always been able to adhere by. I need more patience to deal with the helmet and physical therapy. I recognize that I need to be more patient and I recognize that other people need to be patient with the decisions Ian and I make for Bella. Most parents wouldn't have wasted their time or money to correct the torticollis or the asymmetry of their child's head. It's time consuming and expensive. I know we made a good decisions to address both and I will continue to stand by our decisions. 

We cannot change the fact that we began treatment when Bella was 6-months-old, we are able to change Bella's physical health by continuing with treatment and we are hoping for the best results possible.

Sorry for such a somber post, but today was a very difficult day for us. Luckily, there is always hope that tomorrow will be better... and it will be. 

Love always,
Ian, Kim & Bella

1 comment:

  1. You are doing all the right things!! You are dedicated parents and Bella is so lucky to have you both. Things will work out, they always do. Time and patience!