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?
SPML-FAQ's

We are so blessed.

11 comments:

Lynn said...

Thank you so much for this update! Am so glad you kept on checking into things because this does really sound like a great option! Oh how I pray that it helps this amazing little man! If it works will he still have to have a brace on at night?


2 Samuel 22:29-33 For thou art my lamp, O LORD: and the LORD will lighten my darkness. For by thee I have run through a troop: by my God have I leaped over a wall. As for God, his way is perfect; the word of the LORD is tried: he is a buckler to all them that trust in him. For who is God, save the LORD? and who is a rock, save our God? God is my strength and power: and he maketh my way perfect.
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Lindsey: Mama of Andrew, Adam, and Ally said...

Thanks Lynn! This surgeon said that if the brace is still really painful at night after surgery that he would suggest not using it because it won't benefit him if he can't sleep well. That works for me!

Lynn said...

Oh good! I know I can't function nearly as well when I don't get sleep. It had to have been effecting Andrew during the day, too!
Know I'm always here praying.
Psalms 71:1-3 In thee, O LORD, do I put my trust: let me never be put to confusion. Deliver me in thy righteousness, and cause me to escape: incline thine ear unto me, and save me. Be thou my strong habitation, whereunto I may continually resort: thou hast given commandment to save me; for thou art my rock and my fortress.
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Lynn said...

Lifting up prayer!
Psalms 71:12, 14-16 O God, be not far from me: O my God, make haste for my help...But I will hope continually, and will yet praise thee more and more. My mouth shall shew forth thy righteousness and thy salvation all the day; for I know not the numbers thereof. I will go in the strength of the Lord GOD: I will make mention of thy righteousness, even of thine only.
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Lynn said...

Focused on Friday and praying so that Andrew has the very best outcome!
Isaiah 53:4-6 Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted. But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed. All we like sheep have gone astray; we have turned every one to his own way; and the LORD hath laid on him the iniquity of us all.
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Lynn said...

Christ went through all this for us, that we might have hope! Praying!
Isaiah 53:7-10: He was oppressed, and he was afflicted, yet he opened not his mouth: he is brought as a lamb to the slaughter, and as a sheep before her shearers is dumb, so he openeth not his mouth. He was taken from prison and from judgment: and who shall declare his generation? for he was cut off out of the land of the living: for the transgression of my people was he stricken. And he made his grave with the wicked, and with the rich in his death; because he had done no violence, neither was any deceit in his mouth. Yet it pleased the LORD to bruise him; he hath put him to grief: when thou shalt make his soul an offering for sin, he shall see his seed, he shall prolong his days, and the pleasure of the LORD shall prosper in his hand.
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Lynn said...

Christ suffered in our place that we might have the hope of Heaven! Always praying!
Isaiah 53:11-12 He shall see of the travail of his soul, and shall be satisfied: by his knowledge shall my righteous servant justify many; for he shall bear their iniquities. Therefore will I divide him a portion with the great, and he shall divide the spoil with the strong; because he hath poured out his soul unto death: and he was numbered with the transgressors; and he bare the sin of many, and made intercession for the transgressors.
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Lynn said...

Praying like crazy that all goes well tomorrow!!!!!!!!!!!!!!!!
Psalms 145:14-18 The LORD upholdeth all that fall, and raiseth up all those that be bowed down. The eyes of all wait upon thee; and thou givest them their meat in due season. Thou openest thine hand, and satisfiest the desire of every living thing. The LORD is righteous in all his ways, and holy in all his works. The LORD is nigh unto all them that call upon him, to all that call upon him in truth.
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Lindsey: Mama of Andrew, Adam, and Ally said...

Thank you Lynn, that really means so much!! Today while we are waiting I will be meditating on all these great verses you've shared this week.

Ruth Crawford said...
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Ruth Crawford said...
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