Post Mike Poole (aka, the enforcer;)

I forgot to update the blog with Kaz's progress since spending two weeks in April with possibly the best trainer on the planet! While Kaz participated in 2 hour intense training sessions 5 days a week, for two weeks we not only saw major improvements in his attitude towards reaching goals, but also motor wise an entirely different kid by the end. From the first day Mike had Kaz doing things that no one else seemed to be able to do? It seemed mindless the basic fundamentals and activities of movement that he was having him do, but while he was there, everything seemed to click. He was standing independently, taking steps like we'd never seen before! Even the first day.
Preston and I were in shock. There's definitely new emotions that were tapped into...considering it took almost 5 years to see our son take his first "real" steps.

Here's a video I put together just after leaving Texas that recaps everything from his SDR surgery as well as what he did while in there.

https://www.youtube.com/watch?v=5SJmIg-K9RI

Since returning home, all three of us have stayed dedicated to Mike's workout plan. This requires about an hour of our day (3-4 days a week). This workout, on top of horse riding and weekly visits to Cardinal Hill. We've seen our boy get stronger each day.

Here's the latest video from today. He actually turned in another direction while walking all on his own. It's a slight turn, but it's a turn ;) He can make it across his room independently. Now, our goal is to get him ambulating around the house a little better before returning to Texas in October for another week of training.

Training Day!

Our boy has been doing a ton of work through the fall and now almost to spring! We have been fortunate to see so many changes in him. He has achieved continuous progress in the area of self-sufficiency as well as his motor skills. He is transitioning from walker/canes to seats on his own and climbing up on things easily. SDR has done wonders in killing spasticity (tightness) in his legs. Also, following his tendon lengthening in September, his steps have become so nice and flat. 

Exciting things are in the works in the next couple of weeks. An opportunity came open for Kaz to attend a 2-week intensive with an amazing physical therapist that specializes in working with kids with CP... In fact, this therapist works closely with the docs in St. Louis that perform both surgeries Kaz had last year. This trainer is originally based out of the United Kingdom, however last year decided to plant a location in the US to service kids here. I have been following him since Kaz had SDR, dreaming of the day he could experience an opportunity of his own with what some say is the best in the business. Since opening business in the US, Mike Poole (therapist of Walk This Way USA) has been pretty impossible to get in with because of the high demand here... But God always works when we least expect it. Last month they had a cancellation and next thing I knew I was booking flights, hotel, and a chance for Kaz man to meet a trainer/coach of a lifetime!

So just like that, we are heading to Houston, TX for two weeks at the end of this month in hopes of taking a few more steps in the journey to get our boy on his feet. Of course we would appreciate the prayers and support leading up to this trip and while we are away.
"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance, perseverance, character; and character, hope." - Romans 5: 3-4

One week post PERCS

To say this surgery was the "icing on the cake" would be an understatement!
We've all seen an incredible amount of improvement within the past week. Every day and every step Kaz improves! 

The first few days post-surgery were a bit shaky, however once he worked out the "ouchy", he hasn't stopped for a minute. We started back to therapy Thursday (the following day after returning from St. Louis) and began the post-surgery trudge to get Kaz back. 

Now, he's back - with FLAT FEET! His steps look amazing and he's doing just great being back to school and his normal routine. 
He made it entirely on his own today with his walker at school! I'm so thankful as his mommy for the constant communication from his loving teachers and therapists as well as the wonderful caretakers we have for him while at work.

 

We continue to yearn for and believe the day is near for him to reach another milestone. 

Until then...

"With this in mind, we constantly pray for you, that our God may make you worthy of his calling, and that by his power he may bring to fruition your every desire for goodness and your every deed prompted by faith." 2 Thessalonians 1:11

SURGERY DAY - PERCS

Our morning started very early, with a 5:45am checkin! We strolled across the pedway one last time... This has been a major "perk" of our hotel being connected to the children's hospital.

We were quickly called back, once again being the first in the line-up for Dr. Dobbs today.
Kaz honestly acted like a pro, as if he had just done all of this before?! ;)
We gave him snuggles, said a prayer, and off he went with his little lamb "Brother".

Before an hour had passed, the phone rang from our little "Kaz" cubicle and Dr. Dobbs was on the other end sharing that Kaz did wonderful and everything was completed as expected.

To our surprise Kaz came out of this surgery much less effected than with SDR! He immediately started talking and for the most-part was himself... Biggest plus has been, there has been ZERO nausea!

It has made such a huge difference this go-around. He feels so good and we are all just ready to get home now! He's been eating (his norm;), anxious to watch ninja turtles, and even asked to go to the garden this afternoon (where he asked to be photographer). 

Tomorrow therapy comes and will work a bit with him regarding post-op instructions and what we need to be working on. Looking forward to the soreness wearing off and believing for FLAT feet and balance to come very soon for our Kaz man.

"And my God will meet all your needs according to the riches of his glory in Christ Jesus." 

Philippians 4:19

SDR Followup-Evaluation + Meeting Dr. Dobbs

Today we had back-to-back appointments in St. Louis. We haven't seen Dr. Park since Kaz's SDR surgery in April, so we were looking forward to the appointment and hearing how he felt regarding the progress Kaz has made since surgery.

Luckily he was pleased, and Kaz is still on-track. He is stronger, has much more endurance, and learning to manage life more independently. Although he's not taking independent steps consistently, we are planning to implement some new tools that will hopefully help steps come sooner. 

He tried out tripod canes during our therapy visit and seemed to do wonderfully. I'm so excited to get these and begin practice at home!

Our second appointment was with Dr. Dobbs in the orthopedic department here in the same children's hospital. He is the surgeon that specializes in lengthening tendons...

We have known that an additional procedure to get Kaz completely flat at the ankles would more than likely be needed. So, today Dr. Dobbs decided Kaz was a candidate for the surgery they call PERCS. This surgery is done mostly in the heel cord, however he decided for Kaz, the best location to perform surgery and lengthening would be in the calf. This area is extremely tight and should loosen up his legs to help Kaz get flat as well as assist him in learning to balance and another step in getting him to take steps independently. Good news is he will not be required to be casted following surgery! He also won't have any real "restrictions" post surgery, which means he can go right back into therapy, start school back next week, and straight back in to normal Kaz life!

Surgery will be first thing in the morning! This surgery is much more minor than SDR, however still a surgery. Please pray for our boy and the doctors/nurses tomorrow as they work on Kaz and help him get another step closer!

Jesus replied, “You do not realize now what I am doing, but later you will understand.” ~ John 13:7

This Month - There's MORE!

This month Kaz has the big follow-up appointment with Dr. Park in St. Louis. We will get to hear how Kaz is doing based on the doctor's expectations, now that he is almost 5 months post SDR surgery! Our boy has made major improvements in strengthening his core as well as stamina over that time. He also is beginning to get more comfortable isolating the use of individual muscles, when before SDR, every muscle worked together to attempt one small motion. 
Kaz worked so hard during the summer, attending therapy 5 days a week, while also doing countless hours and stretching and work at home! Now, with school starting back, he still attends therapy 3 days every week.

We still notice Kaz staying on his toes when he walks with his gait trainer. This means, there is likely MORE to come during our visit. We are quite certain Kaz will have another surgery while in St. Louis. This surgery is considered "minor" compared to SDR! Only a 1-night stay at the hospital if all goes as planned. After this surgery (PERCS - which is a tendon lengthening procedure), he should be completely flat-footed without needing to prompt him like we do now. This will in turn, help him focus on balance and independent steps, rather than fighting against that last bit of tightness left.

We are hoping and praying for a wonderful outcome of both the followup visit as well as the potential surgery! Of course, we'd appreciate your support in prayer as well.

Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:11-12

SDR + HOME = Therapy...Repeat...Therapy...Repeat...

Kaz has almost finished up the recovery phase post surgery...

After the first two weeks of SDR, he seemed to have reached his "pre-surgery" abilities. 

Now to review what's been going on since we returned home...

Daily therapy was a struggle from the start since Kaz #1 has all new therapists! #2 has to do this thing every day! and #3 is WEAK WEAK WEAK! (Since getting basically 2/3 of his nerves cut that control his lower extremities it does require a major reteach of how those muscles should work properly)

We ALL started out dreading our time... 

Casts were put on day 1 returning from St. Louis in order to give Kaz's tendons and legs an extra stretch and boost post surgery. He sported them for the first two weeks and now is cast-free since he quickly showed results from them with a great range of motion in his ankles and decent heel strikes.

Week 2 of therapy he met the robot - AKA "Kaz Rock" (he named it;).

This machine is amazing and he is now walking up to 2,200 steps, while learning the fluid motion of walking as well as building muscle and holding a percentage of his body up each step. He has also started initiating his own steps in the machine. This seems to be a wonderful tool to encourage him:)

Now, on to Week 3...

Once the cast were removed Kaz has been much more himself...finding ways to maneuver across settings and now incorporating things he's learned during therapy in his regular daily routine (this may make me happy just a little;).

Other than therapy, we've really just begun to get back in the swing of our "normal". Since I'm off for the rest of the school year, it has been so nice getting to be there literally every step of the way... This kid even takes me on lunch dates! 

He tells me every day how happy he is to be back home and playing with his favorite friends...

Looking forward to the 4th week, post SDR, Kaz has a long road ahead....but with your prayers and his never-ending persistence, he will get there!

"He performs wonders that cannot be fathomed, miracles that cannot be counted." Job 5:9