Tuesday, January 28, 2014

10 Day Post-Op Update

Is it too soon for me to call SPML a big success? Probably so LOL but I'm SO encouraged already!

Andrew did such a great job being brave before surgery. I was really proud of him and I know everyone's prayers made such a huge difference and gave him a lot of peace.

Waking up was terrible, it always is for him. He and anesthesia don't mix. But I just don't think there is much they can do to avoid that :-(

Pre-Op Snuggles with our brave Tiger

Sleepy Time ;-)

Resting at home


We were so glad to get Adam back at home too!

Snuggles & Silly Faces

Poor baby over did it a bit on day two (so much mommy guilt on that day!) and needed a very long afternoon nap. He was hurting quite a bit :(

Day Three: Getting around better every day and bearing more weight. I've never seen him nap this much!

Back at School on Day 5!!! The first two days back he only made it half the day but he got stronger every day. For the first week back at school he borrowed a wheel chair for long distances.

Snuggles with Pa

At 9 days post-op, he's getting around amazingly well, just needing a little extra help with stairs and distance.

10 Days Post Op:
He begged us to let him play in his teams' first basketball game. Heart breaking but doctors orders are to sit out this season. It's going to be tough for him to sit on the sideline but we don't want him to overdo it too soon.

He's up to PT 3 times a week and tolerating it very well. I can't wait to see him after the cast comes off but I know it's going to take some time to regain the strength in his leg.

The most encouraging thing so far is that he is tolerating his nighttime knee immobilizer for the first time EVER!! Even after Botox he couldn't bear it for more than a couple hours. He would cry in terrible pain, it was heartbreaking. Post SPML he has worn it all night, every night without complaint! He is even reminding me to put it on him at bed! Before he would hide it or rip it off as soon as I was out of the room.

This tells me his spasticity is better and he's more comfortable. I couldn't really say that after any of the Botox treatments so I'm really happy so far!

YAY, praise God!!! I hope that things continue looking so positive!

Friday, January 17, 2014

Today is the day

"Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

Andrew and I spent a long time reading scripture and praying before bed last night and today I think he feels ready for what is before him.

Andrew typically has a bad time waking up from anesthesia and goes a bit crazy. His sensory issues go into overdrive and he tries to rip off anything connected to or touching him and will fight the staff when they get near him. I've always said his survival instincts are very strong ;-). I'm praying today will be better for him and that he will wake up as calm as possible.

Please also pray that SPML will be a huge success for Andrew!!

Thank you all so much for being there for our family today and always!!

I'm hoping after today we won't need these clunky things again, hopefully he can get back into bracing that's more comfortable and less inhibiting.

New twin tigers for each of the boys.

Roar!! Our theme song this week. So fitting for Andrew!

"You held me down, but I got up
Already brushing off the dust

You hear my voice, you hear that sound
Like thunder gonna shake the ground

You held me down, but I got up!!

Get ready 'cause I’ve had enough
I see it all, I see it now

I got the eye of the tiger, a fighter, dancing through the fire
'Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
'Cause I am a champion and you’re gonna hear me Roar!"

I am so thankful to God, Many Praises to his glorious name!

Thursday, January 09, 2014

All roads lead us to . . . SPML

I haven't blogged much lately about Andrew and his daily struggles living with Cerebral Palsy but there has been a lot going on behind the scenes over the past several months. For anyone just randomly stumbling on this post: Andrew was a 25 week preemie twin who suffered high grade bleeding in his brain in the days following his birth. His progress has been nothing short of amazing. Through much hard work and hundreds of hours of therapy and medical procedures over his 7 years, Andrew is a typical first grade boy who also happens to have an orthopedic impairment.

Andrew's cerebral palsy is mild left spastic hemiplegic cp and it has been hard finding the best approach that fits his particular needs as most kids are diplegic (affected on both sides of their body symmetrically). Andrew is also extremely high functioning and while being a huge blessing, that strangely complicates things because he has "a whole lot to lose" if we get this wrong. The choices we make now will impact his quality of life forever so you can see why this has been such a difficult process.

Despite Botox and serial casting that we've done as recently as August-October, the structure of his left leg just can't keep up with his current growth. His heel cord tendon has gotten so tight that he can no longer flex his ankle at all and has developed a contracture in that joint. Over time this has lead to his leg turning inward so that without his braces he walks on the left outer edge of his foot (an acquired club foot). All this is causing deformity and tightness throughout his leg and straining his knee. His gait has become noticeably more pronounced and we've had to put him in more extreme orthotics and shoes to best accommodate these challenges. As a 7 year old boy he's become much more vocal about his frustrations with his "dumb tight muscle" :-( and often asks me why "everyone else" is now riding bikes without training wheels and not falling down all the time like he is. This hurts my heart.

But most important is making sure we help Andrew get the treatment and care he needs to give him the best possible range of motion and prevent unnecessary pain whenever possible.

The past several months we've been praying for direction while researching treatment options for him. I've talked to different surgeons from pretty much one side of the country to the other trying to find out who and what is the best fit for Andrew.

The options ranged from the recommended major "traditional" multilevel orthopedic surgery to a promising neurosurgery on the spinal cord nerves. I spent a great deal of time learning everything I could about these and they each have their different risks vs rewards but both are invasive with a longterm recovery process (4-6 months to get back to baseline).

Kenny and I really struggled to find the same page/direction/timing and nothing felt right in my gut about what to do next and when.

But . . . After a series of "circumstances" that can only be explained by God's providence, another less common procedure kept intersecting our path. Again and again it would find me, from unrelated sources when often times I wasn't even seeking it out.

Selective Percutaneous Myofascial Lengthening (SPML or PERCS as some refer to it). We just so happen to live within a few hours of one of only three surgeons in the entire country that are doing it. Through my research I learned that people are traveling from very very far away to come to Texas just for this particular surgeon and his method. We were fortunate to get both a phone consult followed by an in-person evaluation and gait analysis where we learned Andrew was in fact a great candidate for this procedure. I felt very confident in the abilities of all the surgeons that we've consulted with throughout this process but I have such a great sense of peace about the plan that we've made for Andrew at this point in time.

Surgery is set for Friday January 17th at UTMB. The beauty of this procedure is that it is getting results while also being minimally invasive compared to the other options. No extensive hospital stays, no full leg casts/wheelchair, no major risk of complications (beyond the standard surgical/anesthesia risks). Music to my ears. And if for some reason we don't quite get the results Andrew needs, it can be tweaked in the future or we can always go back to one of the other options later on. But if we went that more extreme direction first, we could never "undo it" and start over if we weren't happy with the results. And if we DO get the results that we are hoping for, well then we've completely avoided or at least postponed some major surgeries for our sweet boy. So it just makes sense to us to try this first.

It may sound like a no brainier but getting here was a challenge because this procedure is still "new" and out side the box of traditional medicine. Even Andrew's long term pmr doctor was pushing very aggressive orthopedic surgery on us. And we did explore all the options fully, meeting with or talking on the phone with various physicians. In many ways I really feel that we have had to chart our own path and that's a difficult place to be in as a parent. Very much wanting to make the right choices for the longterm well being of your young child. I know every child is so different and I completely respect other parents that have likewise followed their research and instincts down a different path.

So your prayers for Andrew (and us) are very appreciated. Please pray for the surgery to be safe, free of complications, and that it would be successful. Pray that the surgeon's hands will be guided and guarded as he performs the procedure.

Andrew will come out of surgery set in a walking cast below his knee and if all goes smoothly we can head home the same day. He can return to all his activities/school as soon as he feels up to it. Andrew will be in the cast for a month and then will be undergoing all new bracing and shoe fitting to reflect the changes from the surgery. During this time Andrew will continue with his ot/pt regimen and will likely step up his pt visits to help maximize the benefits from the surgery.

Will Andrew suddenly be able to ride a two wheel bike and keep up with all his friends on the playground? Our expectations for this are hopeful but realistic. While we will always believe in and encourage Andrew to pursue all his goals, the fact is despite advances in modern medicine, there is NO cure for cerebral palsy. I'm confident that by the Grace of our Almighty God, Andrew will continue to bring Him glory as he lives his life, meeting every challenge head on and reaching the full potential that is out there for him.

For more info on SPML visit:
What is SPML?

We are so blessed.