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! 

Monday, December 29, 2014

Doctor Day!

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Today we have another doctor appointment.  Her doctor appointments are different from the appointments we see the PA's for- today is where they will take an X-ray and measure how much bone she has actually grown and see how that bone is doing.  These days are always pretty nerve wracking for me (hence me blogging early in the morning)!

I am always so nervous, and being a mother of a child with CFD- I have every right to be nervous, one X-ray could mean anything: a surgery, a increased pin turn, a decreased pin turn, extra time here in Florida...anything.  I have been so concerned with her pins and the infections that I always forget to wonder how much her bone is growing and if it is growing on schedule.....Today I find out!

I will probably have the silly feeling in the pit of my stomach all morning, up until we talk to the doctor, I have learned to bring ginger everywhere I go ;)

I will tell you this, there aren't words to describe the excitement I get when the doctor tells me how much her bone is growing.  To see her pre fixater X-ray side by side to current X-ray: its completely unexplainable.  I feel like screaming and crying and jumping for joy!  It just shows that all the hard work we do here at the house is working!  The screaming and crying during our stretches, its working; the daily physical therapy, its working, and we have to stay on top of it!  Its one of the best feelings I have ever had in my life- I get tears in my eyes now just thinking about it!

So, I'm drinking my coffee, and I feel like a young child waking up on Christmas.  Im so excited to see what Santa brought, but in the back of my mind there is the little voice telling me Santa may have just brought coal.   Right now, I have to be optimistic, there is no reason for me to be pessimistic.

I can't wait to tell you all how much bone we have!

Thursday, December 18, 2014


Pin It She did it!  She hit 90° today and her physical therapy. I couldn't be prouder, I feel like having a party. But since it's just me and then here we are going to bake cupcakes instead! Could not be prouder of my girl! 

Thursday, December 11, 2014

Bone growth!!!!

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We just went in for our two week check up. And good news, Rory has grown 8 mm of me bone!  The way her bone was cut in surgery it was not fully straight, which is normal, and is why we do not have a full centimeter of growth yet.

 Everything looks pretty good except the bone is solidifying awfully quick. We are going to go back in one week instead of two weeks just to double check the bone and make sure it doesn't get too hard too fast. If it does start to solidify we may have to increase her pin turns from four quarter turns a day to five or six. Although this may sound good to you some people meaning the bone will grow faster, all I can hear is difficulty and tightening of ligaments. Physical therapy is already extremely difficultand I really do not wanted to get and he harder!  Right now, I am not going to worry about anything until it happens, since there is nothing I can do about it now!  However it is always nice to know that the bone is growing!

I will try to find some spare time to work on updating everyone more frequent however both girls have me preoccupied right now!
 It is just so reassuring knowing that bone is growing!

Thursday, December 4, 2014

Video From Rory!

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