Posts Tagged ‘perthes’

Memories and Milestones

Posted: June 20, 2017 in Family Life
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Memory is a funny thing.  Some of the things we hope to remember often elude us, while other more difficult or painful memories seem to continually resurface.  But then there is the practice of purposeful remembering.  Scripture continually points us to this practice, which was instituted by God for the people of God.  And the point of purposeful remembering throughout Scripture is for the people of God to focus on what God has done and continues to do.  His grace, mercy and provision continually abounds to His people.  So we are called to purposefully remember His forgiveness, faithfulness, promises and deliverance in spite of our (mankind’s) continual pattern of rebellion.

It was on this day, June 19, three years ago, that we are purposefully remembering.  It is colea day we have marked to remember as one of the many days where God showed His faithfulness to our family and to our son, Cole, specifically.  It was this day where after the initial diagnosis of Perthes disease, where I watched my son get rolled down a hallway to the operating suite at Children’s Hospital of Birmingham.

And while some of the initial feelings have either faded or been replaced the memories still remain… purposefully.  It would be easy to take these memories and put them in a storage container labeled “The Past” and just move on.  After all, Cole’s future looks promising and his daily functioning is beyond what we could have even processed sitting in that hospital waiting room three years ago.

So why remember?  Because God calls us to.

coleOur story, and more specifically Cole’s story, is wrapped up in a greater narrative that God is telling.  It’s a story of the amazing design of a Creator, the sin and brokenness (including Perthes disease) of a people and the beauty of redemption that comes through the hero of this story – Jesus Christ.  And the good news doesn’t even end with the hero… it ends with that same Creator God, making “all things new.”  What’s broken will be restored once and for all.

That’s why we remember.  Because when we do, we are telling THAT story through OUR story.  Cole’s story is one of a faithful God who has amazing plans and purposes for His children, even if they are plans we wouldn’t have chosen.  And they are good plans, even though some of the stories don’t seem to have happily ever after endings.

It’s been a whirlwind of a three-plus year journey for Cole.  But it’s been one most certainly marked by God’s faithfulness.  We’ve done a major surgery, a spica cast, a wheelchair, a walker, a cast removal, physical therapy, a second surgery, another wheelchair, another walker, many trips to the radiologist for x-rays, multiple consults and follow-up appointments in Alabama… just to name a few memories and milestones on the medical side.  Then of course there’s been milestones in life… birthdays to celebrate, the ability to play and compete on sports team and to run and simply enjoying being a kid.

 

All that to say… we purposefully remember.  We celebrate the memories and the milestones of a good God with a good plan for Cole.  The journey’s not over.  There’s more follow-up visits to come as we journey through the remainder of the disease and healing process.  But we’ll remember along the way.  And it’s with gratitude that we remember all of you that have walked this road with us through encouragement, prayers and your support.  We are thankful.  God is good.

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Hope Renewed

Posted: January 9, 2017 in Family Life
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Hope is really an amazing factor in life.  In fact, I couldn’t imagine life without hope.  Praise God, it is through a relationship with Him through His Son, Jesus Christ that we can truly understand and have hope.

It’s been awhile since we updated you on Cole’s journey with his Perthes Disease.  And I guess to a degree that is good thing, since there hasn’t been much to report since his surgery this past June.  He was back on his feet pretty quickly and seemingly back to life as “normal” which has been pretty amazing and we never want to take “normal” for granted.  Especially considering where we were a few years ago when we started this journey.

And while we can honestly say there has been a foundation of hope all through this journey… it has understandably been dim at times.  But praise God when our hope is renewed.

Cole traveled up to Birmingham for his 6-month post-surgery check up with Dr. Killian over the Christmas break.  Unfortunately, I wasn’t able to be there with him this time as I was with a team of college students from our church serving in Haiti.  It was hard being away, but I was so excited to get a good report even while in Haiti.

Dr. Killian looked at the x-rays and progress the disease is making and more importantly, Cole’s recovery.  Everything is looking good and on track but we still have some more time ahead of us on this journey.  His hip is healing nicely as the bone continues to grow back and solidify.  He does still present a leg length discrepancy, although it is smaller than last time.  Dr. Killian wasn’t too worried about this and we won’t make any decisions until after some growth spurts and an evaluation when he is around 13 years old.

So after some looks at his flexibility, walking and running… Cole was… off and running.  And that is how he has spent this fall anyways.  He was cleared to play flag football earlier this fall and he had a great time out there learning the sport and competing.  Right now we are in the middle of soccer season.  So needless to say, his leg is getting quite the workout – all the time.  And he was excited to hear that he won’t need another check-up for 18 months!

But that just affirms and renews our hope. Our God is such a faithful God.  We resonate with the words of the Psalmist, “But you, O Lord, are a God merciful and gracious, slow to anger and abounding in steadfast love and faithfulness” (Psalm 86:15).  And we also echo Psalm 147:11 as we have learned that “the LORD delights in those who fear him, who put their hope in his unfailing love.”  

Thanks, as always, for following us and praying for us in this journey of hope!

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IMG_2149If you are familiar with the Bible, then I’m sure one of the more familiar stories is Jesus’ encounter with Peter one night out on a lake.  The winds and waves were buffeting the boat the disciples were in and suddenly they see what appears to be a ghost walking towards them on the water.  Jesus speaks up and gives one of his more frequent commands – to all of us as his followers – by saying, “Don’t be afraid.”  Whew.  Not a ghost.

Then Peter, in one of the more brazen moves as a disciple, says “Jesus, tell me to come out to you on the water.”  And Jesus simply says, “Come.”  What an awesome invitation.

And next thing you know, Peter gets up off his seat in the boat, swings a leg over the edge and starts walking to Jesus.  Of course, we know the story goes on to add a bit of terror and sinking to Peter’s story, but Peter did what many of us feel so paralyzed to do and that’s simply to stand up and walk… in faith.

Not to over-spiritualize the moment, but today was an exciting day as Cole was able to stand and walk.  He didn’t have to leave a boat in the middle of a storm, but he did leave behind the safety of his wheelchair.  So he’s gone vertical with the aid of his walker!

Now he is mobile, with his immobilizer and walker… and like Peter’s crazy courage, Cole is filled with the same spirit… much to his mother and I’s dismay at times!  Because now that he is mobile on his own, we just have to be very careful that he doesn’t fall for risk of breaking his femur (since he has holes all the way through in a few places).  And for those of you that know Cole… careful isn’t usually an adjective that lands in the same sentence with his name.

We were also able to take the dressing off and get our first look at the scar, but we’ll save you the pictures on that one!

Needless to say, we appreciate your prayers for his safety and healing.  By God’s good grace, it’s been going far better than we anticipated!  We’ve got a big month of healing ahead still, but he is making progress days by day and for that we are incredibly grateful!

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.” (Ephesians 3:20-21)

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It’s really hard to define normal in a household with four boys.  Seems like everything is always changing.  And Cole’s “normal” has most certainly changed over these last two years.  But we’ve learned to roll with the punches and embrace each change that leads to a new normal.

Recovery here at Brooke’s parents has been far better than recovery in the hospital room, but this was true last time as well.  Cole is learning to adjust to his very limited mobility, although he has his moments of non-compliance.  Like when Brooke turned her back yesterday and then returned to find Cole had moved himself from the couch to his wheelchair.  He’s not fully understanding why he just can’t get up and go.

But the new normal has him sleeping fairly well through the night.  Each night has been better.  He’s limited in sleeping positions, but we’ve managed to sleep without his leg immobilizer on, which I know has been a welcomed breather (for him and for his leg)!

During the day, we are thankful for conversation, brothers, grandparents and technology.  We move from movies, to games, to the iPad, to card games, to books and then wheel around the house from time to time.  Cole is getting pretty adept at maneuvering by himself in the wheelchair.

Praise God that his pain has been very minimal.  In fact, we aren’t using much of his prescription pain medicine.  This has been a huge answer to prayer.  As has been the progress of his recovery since we have been discharged from the hospital.  So again, thanks for following our journey, supporting us and praying with us.  We are believing God for continued health and healing for Cole because of His grace and goodness.  “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.” (2 Corinthians 12:9)

There was a familiar face standing at our door.  Dr. Killian, who has guided us, counseled us and been a phenomenal pediatric orthopedic surgeon for Cole had finished the surgery and stood ready to give us the report.  All in all, the surgery was fairly quick and successful.  In one hand, he held and x-ray and in the other a baggie with Cole’s hardware.

As he proceeded to share with us the medical details of the procedure, our hearts breathed a sigh of relief just in hearing the words, “Cole did great and he’s waking up in recovery. He’ll be back in here in about 45 minutes.”

But the big takeaway from the surgery is that the healing of the hip is continuing while the disease enters the final stage.  There is about 20% of his femoral head that hasn’t fully grown back yet.  That hip as it has grown back is nearly double the size of his healthy hip.  There isn’t really an explanation or solution… just something to watch as he continues to grow.  But the size may cause problems in the future and lead to an hip replacement at a later age.  There was still some inflammation in the hip surrounding some of his tendons.  But praise God, everything was successful and Cole’s prognosis is good.

After a while, the next sight we saw was a hospital bed with an alert Cole, complete with popsicle in hand heading our way.  We were overjoyed to see him and to see him doing well.  As he transitioned into the room, his vitals looked good and we were given the go ahead for discharge.  But that is when a wave of pain set in and we decided to stick around a bit to let him rest and get another dosage of pain medicine in.

So for the foreseeable future we’ve got stitches (for about 2 weeks) and stillness (for about 4 weeks).  Honestly, he isn’t excited about either.  But since he has a void in his bones where the screws were, he is at a high risk for the bone breaking with any impact or fall.  He’s fitted with a leg immobilizer, walker and wheelchair.  So stillness here we come.

Psalm 46:10 says, “Be still and know that I am God.”  It’s a prayer I pray over my own life as slowing down and finding rest in God is often hard for me to do.  And while this verse speaks of a spiritual stillness, my prayer for Cole is that in this period of ‘forced’ physical stillness, He will find a God who is with him, loving him, healing him and sitting with him over the next month.

Thank you for your prayers today.  The calls, texts, FB messages and simply following us on this journey mean the world to Brooke and I and also to Cole.

image4Cole is in surgery right now as I type.  We just walked down the long hallway as a family (Cole got to ride down in his bed) and then we stopped at the bubble wall.  And then it happened… I had to let go.

Leaning in for one last hug, prayer and “Daddy loves you” is a moment any parent would want to hold on to forever.  Literally and physically.  But then the moment was over and I had to let go.  We had reached the limitations of how far we could go with Cole.  We stopped, let go and watched.  He continued on.  Rounding the next corner, he looked back with his sheepish smirk that I’ve grown to love.

Letting go isn’t easy, yet life is full of letting go moments.  So now as I sit here in his pre-op room… in the silence I’m left with my thoughts, emotions and my faith.  Writing is helpful for me in these moments.  One, because I don’t want to forget them.  But two, because it’s through the words of my heart that I gain a better perspective of the world around me.

Next to the letting go of a loved one at a funeral… watching a casket lowered into the earth, for a parent, the letting go of watching your child as they are wheeled back to an operating room is probably the next most difficult letting go moment in life.  Because its in the moments that follow that you realize just how powerless you really are.

But thankfully, as a believer, that’s where we realize that whatever or whomever we are letting go of is really an eye-opening reality to what we then can hold on to.  So as I sit here praying, I may have let go of my son’s hand, but I’m powerfully reminded that I’m holding on to the hand of God.  Or better said, He is holding on to me.  Isaiah 41:13 remind me, “For I hold you by your right hand–I, the LORD your God. And I say to you, ‘Don’t be afraid. I am here to help you.”  Words of life.  Words my soul can rest in right now.  Even when I’m called to let go, God never lets go.

What security we have in our relationship with God.  Through His amazing grace and awesome power we are reminded in John 10:28, “…and no one will snatch them out of my hand.”  I am loved.  I am secure.

And that’s why I can let go… in all areas, but even with my son right now.  Because He has a loving Heavenly Father that is still holding on.  And despite my love for him, there isn’t anyone else I would want holding on to Him in this moment.

So right now I have let go.  But I’ve let go to a God who never lets go.  And I can cry out in prayer right now knowing that He hears and He answers according to His good will and pleasure.

And thank you, again, for praying with us right now.  We anticipate the surgery will last about and hour and then recovery another hour after that.  And then I’ll hold Cole’s hand again.  And then we’ll update you as we know more later.  In the mean time, I’m thankful that in the letting go… I am held.  And in the letting go… I learn and experience more of the strong, love of God for me… the One who never lets go.

Photo on 6-16-16 at 10.46 AMIn some ways it is hard to believe that it has been two years since we first stepped into Children’s Hospital here in Birmingham and in other ways it seems like just yesterday.  I’ll never forget the emotions surrounding our early morning arrival in June 2014 to prepare for the first surgery that would start Cole with a necessary and hopeful intervention for his Perthes disease.  We were anxious and apprehensive not only with the surgery but with his future.  Yet God has been amazingly faithful to Cole and our family in this journey.  I’ll save all the details in this post, since you can look back into the “Family Life” category here and catch up on our story.

So today we are here facing another surgery.  This time around should be far less intense and invasive then the last go round.  But surgery is surgery… especially when you’re a parent.  But Cole is in good spirits, hungry, but overall his normal calm demeanor.  He’s asked a few questions along the way this morning, but generally understands this is a part of the path that God has for him.

Dr. Killian will open his hip back up to take out his plate and six screws.  No more setting off metal detectors for Cole… he’ll be hardware free!  Barring no complications, we may actually be able to go home and not even have to spend the night in the hospital.  That’s good news all the way around.

So we covet your prayers today.  We are so grateful to have such a community of family and friends that have stood with us in prayer on this journey.  Cole is third in line today and we are anticipating surgery around 11a CST.

Pre-surgery: June 2014 and June 2016