St. Louis Bound!

I'm beginning to "pin" some ideas of places we can visit as a family prior to Kaz's big surgery! The options are endless...I never realized how much St. Louis had to offer. From the world-famous zoo to the massive arch, so much of this spot is FREE to visitors I'm discovering, which makes this whole planning thing even more fun. We will only have a couple of days prior to being hospital-bound, but I figured we should live it up while we can!

Another thing I've been ISO (which means "in search of" - don't worry I just figured this one out myself;) are some neat surprises for Kaz. I thought this would be something fun to shake things up a bit and a way to get his mind off of the yuck of surgery and hurting. I've stumbled upon a few things that I know will make his day! If only I could get Florida Georgia Line or Lady Antebellum in the flesh to appear, the kid probably wouldn't shed a tear ;) For now, we'll have to stick with pirates and ninja turtles!

These snow days somehow make the time drag along...waiting...
But I must say, our time together is precious! I'm so thankful for these extra moments to make memories with my ever-growing 3-year-old. 

It's all becoming REAL!

The prayer of Kaz walking one day (completely on his own) once seemed like a dream. I've always been in hopes that one day he would reach this goal, until the other day I realized... This is MY dream. Of course as a parent, you want your children to experience everything you did growing up and more! For him to walk in my mind, was always a requirement in order to truly enjoy life to it's fullest and experience everything I'd ever want for Kaz. I guess I just assumed all of this was his dream too?!

Until the other day when he was talking to a good friend of mine, it all seemed that we were both in agreement. That's when the surgery got brought up and Kaz starting talking about it with her. For the first time I heard him utter the words I'd been selfishly dreaming of the past three years with no hesitation at all... "I'm having surgery, and I'm going to WALK!". Until that day Kaz had never said he was going to walk and honestly, I can't say he minded being carried around too much. 

However, now that we're dreaming the same dreams and have our hopes set high, I say it's safe to say Kaz is now ready to accept this challenge and it's all becoming REAL!

We will spend the second week of April in St. Louis, with Kaz's surgery date scheduled for April 7th.

In the meantime, keeping him healthy and finalizing all the details are in the works. After following so many families that have gone through this same surgery, I now know it's truly a lifestyle shift. Today, I met with my employer to confirm details for my long-term leave and will be taking the rest of this year off following Kaz's surgery. I plan to be as involved as possible, attending therapy and providing home therapy daily!

Our family is believing for BIG things! Now that Kaz is finally onboard I don't think there's much that can stop him. Prayers along the way are so appreciated!

Nothing Comes Easy!

I should have known then, when Kaz decided to show up unexpected that May day at 9 weeks pre-term! Things haven't been at all predictable or planned from his first breath and very little has changed since. However, one thing I know for sure.... No matter how many road blocks we hit, there's always an answer that keeps us going ~ Never a dead-end!

I was naturally wired to be a "planner" and "multi-tasker"... to have it all together! Except one thing I hadn't learned yet - that's impossible. When life is involved, this element of perfection somehow evaporates. For so long I've enjoyed control and the micro-managing of life, however I'm so glad I've finally been broken of that habit to see that I can't control this crazy world.

Initially when we started this surgery journey, I was excited to the extreme after finding out that Kaz was a candidate, considering it is such a wonderful opportunity for him and our family! Then all the paperwork, evaluations, possibility of therapy not being covered through insurance, more paperwork, phone calls, new braces before surgery, booking the hotel, where can I find a wheelchair?! All of these questions and more along with my usual worries begin to creep up in my mind....

Then, after three days of high blood-pressure and trying to forcefully "mama bear" take control of the situation, I put on my best face and said one prayer for my son and for God to be right in the middle of it all.

Once again, I was quickly reminded...

"Do not worry. Learn to pray about everything. Give thanks to God as you ask Him for what you need. The peace of God is much greater than the human mind can understand. This peace will keep your hearts and minds through Christ Jesus." ~ Philippians 4:6-7 

News We've Been Praying For!

After a little over 2 weeks since we applied for Selective Dorsal Rhizotomy surgery (SDR), we received a call with the news we've been praying for! In order to receive this very rigorous and lengthy surgery, the performing doctor has to give his stamp of approval that the patient is a good candidate.

Along with the application paperwork and xrays, we also sent a very detailed video where Kaz had to show his motor skill ability. From this, the doctor determined much more than I ever expected!

When the lady called to give me the news, she not only told me that Kaz is a perfect candidate for SDR, but also shared that there is a very good chance that he will be an independent ambulator following the surgery! That basically means he will WALK...and on his own! We are looking forward to heading to St. Louis this Spring and meeting Dr. Park and his staff, that we have heard nothing but good things about:)

Now the plans begin.... Transportation, equipment, hotel, and lots and lots of paperwork.
Luckily this surgery is COVERED through insurance, however the therapy is not. This is a huge piece in making this surgery successful afterwards, as we will basically live at therapy with him needing PT 4-5 days a week, 2-3 hours a day! We hope by our doctor requesting additional visits to our plan everything will work out.

I'm so excited for my boy and ready to walk right by his side along this journey! I know great things are ahead for him...

Surgery Possibilities!

We finished off 2014 with lots of changes! New house (renting while we build) and now embarking on the steps to a possible surgery for Kaz that could really impact his future.

Since Kaz has been getting botox for over a year now following serial casting, we have seen some great improvements! After botox he can now get decently flat-footed once he is stretched out well or taking steps with his walker... major progress from the start, where he was completely tip-toed with no balance. The downer about his botox is that it does wear off, and sometimes faster than we'd like.

Our doctor in Cincinnati suggested looking into a possible surgery to relieve Kaz of his spasticity (tightness) permanently. Of course instantly we began the search! After consulting with a Cincinnati neurosurgeon that seemed to identify Kaz as a "perfect candidate" for surgery, I went in "mommy-mode" and began googling like we all do ;)

I stumbled across a doctor that has been doing this exact surgery for over two decades. After digging deeper, I discovered he was a pioneer of this specific surgery, performing over 2,500, and lives only five hours away from our Kentucky home.

All paperwork is filled out, therapy assessments complete, video evaluations uploaded, and prayers said! Now we wait.... For THE APPROVAL from the DOC.

A few verses that we are beginning to repeat more than ever along this journey...

"For we walk by faith, not by sight" - 2 Corinthians 5:7

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11