What's Hunter Up to These Days?

Probably the most frequent question I get asked (besides "Moooom, where's my ___") is "How is Hunter?"  And I usually say he's slowly getting better.  Which is true.  In the therapy world, he's come a very long distance {paralyzed to independent with his walking sticks} in a relatively short amount of time {1 year out of ICU}.  Praise God that he's allowed Hunter to continue to recover and regain function.

We have met lots of people along the way that are figuring out how to live life with conditions and injuries that are permanent, and Hunter is still making little improvements every day.  Still others are learning how to live life without a loved one, and Hunter is home with us.  Like many of you, I'm guilty of not being grateful for exactly where we are today.  I need to stop and smell the roses more, so to speak.  The human side of me wishes that everything was back to normal many months ago, in fact.  I'm sure Hunter does too, but he just keeps on smiling and going about his life.  He is an example of perseverance to everyone who knows him, including me.    

Here's a few FAQ about Hunter for February 2016:

Is Hunter still going to therapy?

Yes, he still goes twice a week to PT, for an hour each session.  The twins and I try and go a lot of Fridays to check in on what he's working on, and to see his progress.   He is working mostly on balance, nerve, and muscle re-education.  His muscles, tendons, and joints are still all really stiff from being bedridden and unable to move for so long.  Over this past month he's walked over 1000 feet without his sticks, learned to clear the ground on a jump, been maneuvering over and through obstacles he might face walking, and is working really hard at trying to get his glute muscles to fire.  Jodi explained that his back and leg muscles are bigger and work so much better that his body tries to go with what easiest.  This means a movement like a lunge is really challenging.  It also keeps his stride a little jerky and unnatural and causes back pain because you're not really supposed to totally use your back when you walk.    

Is Hunter able to work?

He goes into work five days a week, usually a little late.  Most nights he has trouble sleeping, because of nerve pain.  Thankfully, his bosses are ok with him coming in an hour or two later to catch up on sleep or to do his therapy.  Some days he makes it until closing time, but others he has to come home early.  Mark, Jana, Chase, or someone else try to make him go home on days that he looks like a bus hit him.  Hunter would not be doing as well as his is if it weren't for his family taking care of him at work.  I can only imagine how run down and sick he would be if he had to choose between recovery and working enough to feed his family.  We are blessed to work in a family business.  Hunter has transitioned from his chair at work to his sticks.  Most days he is totally out of gas when he gets home, but sometimes he can play a little with the boys.  We love his days off where he can catch up on sleep and be a little more active at home.  

How is his immune system?

Hunter is 100% donor, off his rejection medicine for almost a year, and is off almost all his preventative antibiotics/antifungals/antivirals.  He's just taking an antibiotic three times a week to prevent a certain type of pneumonia and 5 mg of steroids.  Because he's been on steroids so long, his body has quit making them.  He still has a baby immune system, and gets sick easily if he's exposed.  It takes him longer than me to get over colds and illnesses.  Hunter's CD4 count, which is a marker of the overall health of your immune system is still below what a normal healthy immune system would be.  His transplant team will check that level every 6 months, and expect that it slowly rises.  Right now he's got a flare up of shingles.  He had shingles weeks before transplant, so he recognized the feeling and got started on antivirals.  Not fun at all.  He thinks that his nerve pain medicine has helped him feel better than the last time he had shingles, or that his pain tolerance is higher.  Whatever the reason, he is still going about his business with shingles all over one side of his chest and back.

This made my heart sooooo happy!

Disclaimer:  Shingles pictures ahead!

What's next?

Hunter is already walking around the house without his sticks, but still uses them everywhere else.  It has been a lot of work for his body to get adjusted to not using his wheelchair at work.  Over the past few months he's gone duck hunting with his brother, played ball with the boys, had many wrestling matches, and been to the driving range to hit golf balls.  He wants to get back to doing everything he did before transplant and AIDP, and doing it well.  We have never been a family that sits around and watches TV, so he's anxious to get back on his bike and hit the ski slopes.  He has his sights set on a full and total recovery.  I think right now he would settle for normal sleeping habits, instead of getting a few hours here and there.  I often wake up and find him in his green recliner because it's easier on his nerve pain.        

Chase lovingly joked that four year old Hudson is more help setting up decoys and carrying stuff than Hunter!  They had the best time!

I told Chase "Do not let him fall on the ice.  And you have to send me a picture once you get there."  He delivered:)

Carrying my golf bag:)

He was not entirely pleased with his "old man swing" but didn't fall over.  Winning!

Mowed down by some light sabers

This letter recently came in the mail.  Five years ago, we opened ourselves to the possibility that God was leading us to consider a bone marrow transplant to cure Hunter of his CGD.  Then He set the events in motion for transplant to become a reality.  The chance that he could have a normal life expectancy and we could grow old together.  Two little boxes of Cord Blood, one selfless donor, and a lot of trust in Jesus totally changed our lives.  It's been a wild few years, and I'm thankful everyday for the family and friends who have prayed for us and walked with us as we struggled.  God has been present in the good, and even more evident in the bad.  He has put a lot of people in our lives.  We have been served by wise and capable medical teams that go way above and beyond to coordinate and lead us through a bone marrow transplant, many complications, AIDP, and rebuilding and immune system.  Next Monday we visit his neurologist from Zale Lipshy and hope to take a "victory walk" in the Neuro ICU to hug some nurses and doctors who have meant so much to us.  We know just how blessed we are.