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
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...
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
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