Tuesday, December 30, 2014

Doctor update

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We had a not so good day yesterday. Let's start with the good news first- 24mm of bone- it's very exciting! I love growing bone! 

Now for the not so good. 
Rory has physical therapy every day at the Paley Institute. She is not a big fan of physical therapy, she is in this "mommy mode" where she only wants me to touch her and do anything with her leg at all, which is funny since when we do bath, pin cleaning, and stretches she screams so loud everyone in our apartment buildings can hear! It's nice that she has so much trust in me, but she needs to let other people help her too. 
Each week she does measurements on her straightening and range of motion in her knee. Every time she does the exercises with her physical therapist, she resists them completely. Not only does she resist, but she kicks too! When she does them with me she screams and sometimes kicks, But does not resist the way she does with her therapist.
So today, at or they took her measurements it was nowhere close to 90°. Her straightening was fabulous, but the wonderful 90° bend we had last week has now become about 78. Her therapist said that they could've bent her more had she not been resisting so much. I was not a happy mom.

Right after her therapy we went to her doctor, Dr. Paley was out of town so we met with Dr. Robbins who is wonderful. When he looked at her measurements he suggested decreasing pain turns from four times a day to three times a day until her range of motion improves. This was hard to hear because it knew she didn't have her range of motion because she was being stubborn (which she must get from her dad- hahaha). If we did only 3 pin turns a day it would put us in Florida until about May or possibly June. 

There are three main reasons for stopping lengthening or ending in early. One of them was nerve pain, the other: infection (which we have had our fair share of), and lastly range of motion. If we keep going down a few degrees in our range of motion each week eventually she will have no range of motion. I was completely disappointed and upset leaving the appointment- because I know she can do better than 78 degrees! 

As we were packing our gear Dr.Robbins came back in and said since it was her first low range of motion to continue with four pin turns, but take measurements again in a week and if the measurements are still poor then we are going to have to reduce pin turns. 

So...until Rory does better at physical therapy she does not get any special treats. Normally we have a little dessert after dinner, and we didn't have it last night. The biggest consequence is that today at physical therapy i was not allowed to go back in the room with her. She was crying the whole way to the physical therapist office and did not want to go by herself, once she does not resist her therapist and lets them help her; then Zin and I can go back there and be with her. She is in there right now and I know it's almost the hard part of her stretches so I pray she does well. Lord knows I don't want to be here till May or June! 

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