Perspective....and the new reality

We had an ortho appointment for Jonathan last Weds. This was the first appointment he had since June. Over the last 5 months, I really haven't thought about surgery or what's to come, I really took to the whole "enjoy your baby" mantra that was reiterated to me over and over. The only reminder I have had of JP's FH is his leg, but this appointment has become the turning point.

We have officially started down the first road of our journey. Jonathan had an X-ray last week, which was something I agonized over for weeks prior to the appointment. While I wasn't worried about the X-ray....I was worried about  JP sitting still FOR the X-ray. This kid is non stop from the moment he is awake to the moment he goes to sleep.  He's crawling everywhere, exploring, pulling himself up, etc. So my thought was, he's never gonna be still enough for this X-ray. I was proven wrong, while he wasn't completely still, he didn't move all around either. He did very good and they were able to get the pictures of his legs they needed pretty quickly, I was impressed. LOL!

The above is his X-ray- it REALLY put things into perspective for me. While I always knew that Jonathan was missing a bone and the other was shorten, this is the first picture that we have of  it, outside of the ultrasounds. I look at this and think "Wow! I get it now." As you can see, he's missing that tiny little bone (the fibula) on his right leg and his bigger bone (the tibia), looks like it's half the size. The tibia is significantly shorten and bowed, which you can see in this picture pretty well. We're happy to report the top portion of his leg (the femur) are equal length and his hip and knee joints look good. The estimated difference right now is 5 cm (which is about 2 inches).

For the time being, Jonathan will be getting an AFO (ankle foot orthodic) to help him stabilize the leg when standing and make up for his difference. The AFO is call a Foot on Foot. Some kids do well and others hate it, so we'll see how he does, but it might be more comfortable when it comes to walking.

The current treatment plan is for an MRI in May/June so they can really get an idea of what he has vs what he's missing, especially with his ankle, and then surgery will be at 18 months (Aug/Sept). The first surgery will be to reconstruct his ankle (chances are he's missing part of the joint) and then straighten the tibia out.  After the surgery, he'll be in a fixator for several months, while his bones heal. Once Jonathan's finished this first step of the process, he'll still need a shoe lift to make up for his difference, until we have the first lengthening surgery (which would be around 6-8 years old).

As JP approaches his 1st birthday, I've now come face to face with our new reality.  I'm starting to see all the things I agonized over while pregnant become real and I'm doing my best to embrace it.