Reality Check...and Mate!

If there's one thing I have learned in my 34 years of life is that life can throw some face hitting curve balls. I've watched several friends lose a parent way too soon (the most recent being this month), I watched a family member grieve and move on after the accidental death of their 8 year old child, and learned as a parent how to handle difficult news about your children.

For me, the first parenting "blow" happen when I learned that Aiden had not only a peanut allergy, but also an allergy to all tree nuts. We had give Aiden peanut butter a few times after he turned 2 and each reaction got worse and worse, which the last one lead to hospitalzation. Now luckily his throat didn't completely close on him, but the itching of his mouth and throat were bad.  For Keith and I it was "hard to swallow" this news being big peanut/peanut butter lovers, but also we live in a world where EVERYTHING is manufactured on a tree or peanut plant. So we're on constant watch and can't really buy non label bake goods anymore.

The next parenting blow, came last October when learning at my 20 week ultrasound that Jonathan had a birth defect. I'm sure if you have been reading this blog, you know the emotions I had there and will spare all of the reiteration.

Today, I turned on the TV to watch the news and I found myself speechless, horrified, and just overwhelmed with emotions as a parent, but also as a human being, when I learned about the shooting at a CT elementary school. I know as humans we all want to pity ourselves and what we're going through from time to time, but today I was reminded that there are others suffering a little more then you. I was also reminded how bittersweet life is and how quickly it can be taken away. There were 20 sweet innocent lives lost and 6 adults who died trying to save them.

So as I head into this holiday season, I'll be constantly reminding myself to tell my children I love them a little more then I do, hug and kiss them  a little extra, but revile in each moment of joy, sadness, madness, and silliness because shockingly it could all be gone tomorrow.

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.