Summer changes everything

Well here we are in the official days of summer. This summer is bitter sweet for us, as I feel like everything changes after this year. JP will have his surgery in little over a month and while I'm nervous about it, I'm trying to enjoy every minute of summer till then.  In recent years I feel like Summer goes quickly, but this year I'm sure will go in lightening speed.

I'm so excited that in the next few weeks we'll have  some time away from "life" and spent down the shore. This weekend we head to NJ with our good friends the Lovings. They're always so gracious to open their shore home to use and I'm so excited to get away with them and watch our boys play together. They have a son, who's a little older then JP, and Aiden absolutely adores him. So no matter what we do, I know it will be a fun time to relax and forget about life.

And we're looking forward to our week away to OBX which is right around the corner, as we leave on July 6th. We can't wait to spend a week away from "reality" and hang out with our good friends. It's always a good time!  

But once we're back I  feel like we'll be staring down to JPs surgery...of course we'll have a few weeks before this happens, but i know it  won't feel like that. 

James Right

When I start to think and reflect on this summer, I feel like everything changes and here's why....

1- come August/surgery-the leg JP was born with will be different/changed, while for the better it will still be strange as we've come to love the "little leg" that is "bent" and has a foot position outward.

2- It's the beginning of JPs journey towards lengthening/correcting his birth defect and our "new reality".

3- JP's birth defect will begin to "effect" my sweet Aiden, who's  already trying to compete with his brother for our attention all the time  now that JP talks and is active.

So we ask for your prayers for our family that we get to enjoy our vacations and time with some amazing and supportive friends! But also we ask for  help to prepare us for JP's surgery. We ask that you pray for our adjustment to this reality, while for the best for JP, it will have us encounter some struggles and tough times with each surgery  he has to go through in his childhood,while kids his age get to enjoy "normal" life.

Onward to Surgery

We had a check in/follow up appointment with Jonathan's Ortho doc this past Tuesday. The purposes of this visit was to discuss MRI results, get some new Xrays, and start surgery planning.

Not Jonathan's actual doctor- LOL

Of course, our doc is so awesome that she emailed us the Monday after JP's MRI and let me know she didn't see anything unusual for his condition.  The visit itself went wonderful, the xrays did not (mainly for the fact that Jonathan was not happy at all and I find Xrays getting harder each time).

We met with Dr. Nichols and she talked to us (and even showed us) the results of the MRI. I found it so interesting to see JPs condition outside of the xray (aka bone visual) perspective. A few pics (sadly) reminded me of the ultrasound I had at 20 weeks where I felt his leg/foot were a blob, but thankfully I know better. Dr. Nichols did tell us (which Keith reminded me she thought this on one of our first initial visits when JP was born and she did a manual exam/assessment)the MRI shows a residual fibula. In other words, at lower part of his leg/near the ankle joint JP has some fibula. I'm not sure what the case is of those that have the residual vs those who don't, but would be interesting to find out.

The doctor showed us a step by step diagram of what Jonathan's first surgery would entail.They will position his foot underneath his leg (vs the out and down position it is now). She described some of the bones that would be broke and reset (which I hope is right or at least how I understood), "fix" his ankle and straighten his tibia. The straighten of the tibia would require a donor bone to act as the wedge (or at least how I understand it).

So for me the take away is this- Dr. Nichols feels the best course of action for this surgery is to focus on position the foot right and straightening the bend, so her plan is to cast him for 6 weeks. For Keith and I there is a sigh of relief as we thought JP would have a external fixator (in my terms a big metal contraption that goes into his leg with wires and all). With the ex-fix there is a lot of extra care with turning pins and making sure there are no infections in said pins. So knowing we just have to deal with a cast, it seems this surgery is feeling easier. We will also only need to worry about altering his clothes (and for only one season! The fixator would have been on for 3 months. And the altering of clothing is more my preference then anything.) Jonathan will probably have his first lengthening next year or so, a little closer in sequence which will definitely involve the ex-fix, but I remind myself one step at a time.

 The amazing thing about Dr. Nichols is she likes to consult her peers/teachers. So her hope is to share JPs MRI with one of the "pioneer" doctors at Sinai and tell him of her plan to see his thoughts and visions. She is open to change her course if he feels that's best and to me that's why I love her!

So the plan for now is surgery August 9th a few days in the hospital and dealing with life in a cast for 6 weeks. Knowing my very active/crazy baby boy, it won't be an easy task, but to me and Keith a little easier then the ex-fix! There are no more doctor appointments between now and surgery, so we get to enjoy our summer with him and he'll have a pre-op appointment the week of surgery. We continue to thank everyone for their constant well wishes and prayers and will continue to need them as the surgery approaches! Why we feel this road might be a little "easier" (and I use that very lightly) without the ex-fix, it will still be hard to hand our sweet boy over for a 4 hour surgery.

Riding for the first time

Aiden recently completed (on May 31st) his first year of pre school. He was in their immediate class and did so well. He loved school, his teachers, and his friends. Aiden was so sad when it ended, but constantly reminded me it was only to September- LOL.

Since Aiden did so well, we decided to get him a big boy bike to celebrate. And lucky us, I found a green (his favorite color) bike on Craigslist for $25! So we gave it to him and he was super excited. We took Aiden to the park recently to ride his "new" bike and he loved every minute of it and can't wait to go back and try. Here is some pictures of him enjoy his bike!

My Heart Goes to Sleep

This past Saturday Jonathan had his MRI on his ankle to help the doctor prepare for his upcoming surgery. First of all, we want to thank everyone for their prayers, good thoughts, and well wishes!

Due to JP's age he had to be sedated for his MRI. This is something that worried me for months. I had dreaded it and tried to prepare myself for it, but truly there is no way to prepare for you to hand your child over to be put to sleep.

We had an early morning appointment, which was great because Jonathan wasn't allowed to eat or drink after 11, so we basically ran out of the house. When we got there we didn't have to wait long to start the process. We put JP in a gown and they gave him nose drops to relax him/calm him. It was funny how he became "drunk". He was giggling at everything and it started to make this process a little easier believe it or not. They then started the IV and I was truly in all how well he did. He flinched and let out a cry, but that was it.

The last part was administering the meds to put him under. I was holding JP on the bed and the doctor warned me that he would fall asleep quickly and to make sure I had a good hold on him, but I really wasn't prepared how quickly it would go. JP insistently feel asleep, but it was heartbreaking as he looked "lifeless" and that's when I started to get choked up.

The Anesthesia Doctor and Nurse reassured us he was in good hands and to go get a bite to eat and tried to relax. It's so strange to hand your child over to someone you don't know and trust them, it's not like they were the doctor we have built a relationship with, but they were amazing. Someone once said- When you have a Child, it's like having you're heart walk outside your body and Saturday that is exactly how it felt.

In the end, Jonathan did well with the sedition, came out of it well, and the MRI didn't show anything unusual.