Day 651, First day of the rest of our lives:)

Today is a milestone day for us.  Since day one of transplant, Hunter's day has begun by taking his Prograf.  If you've followed us for a while, you might remember that this is the immune suppressing medication that prevents Hunter's body from fighting donor cells.  As long as he was on Prograf, he was also vulnerable to infection from a virus or bacteria because it holds his body back from mounting an appropriate response to any foreign invader.  He took several antibiotics, an antiviral, and an antifungal daily to prevent infection developing.  For the last three weeks he's been slowly decreasing his Prograf dose.  Today, Day 651 post transplant, is his very first day to be off Prograf.  Praise God for walking with us every step of the way!  Our transplant journey, Lord willing, is drawing to an end.  The "old me" might stress and worry about what could happen.  We've encountered plenty of complications since transplant.  Now I have no doubts that whatever may come, we are not alone.  It is a choice to worry or trust, and we choose peace.  We covet your prayers for Hunter--that he will have no more curveballs or auto-immune problems as he is off his rejection medication.

Hunter has a week and a half of rehab under his belt.  Inpatient rehab is every bit as awesome as we had hoped.  Each day has a structure and a purpose to get independent enough to come home.  He's busy from about 7:30-3:30 with eating, respiratory treatments, occupational therapy, physical therapy, and recreational therapy.  We love love love his therapists, and they've got some pretty cool toys that help support his nerves and muscles relearn their movements.      

Hunter has been in bed unable to move a muscle for the majority of five long months.  Not only did the muscles waste away from not using them, the nerves had to heal enough to transmit the messages from his brain to tell them to move.  The demyelination created gaps in his nerves that interrupted the signal from his brain telling his muscles to contract.  The more he tries to move, the more his nerves try to bridge the gaps to reconnect.  So imagine over and over trying to move your feet without seeing them move.  Eventually his body will heal enough to make his muscles move.  At first motion is slight and jerky, then the more he practices the better and faster the connection.  It will be a long process to regain the strength he lost after that.  His arms started to regain some movement the beginning of January.  He now has almost the full range of motion in his arms, but they are very weak.  It is progress that he can lift anything (banana, washcloth, toothbrush) against gravity.  His knuckles are still a little stiff, and that keeps him from being able to grip very well.  But he is gaining independence each day.  Today he sat up, brushed his teeth, washed his face, and combed his hair with only assistance getting set up.  I love watching him work.  He is the true definition of a fighter, and he's giving his recovery every bit of effort he's got.

You might just think this is Hunter sitting on a table.  What you probably don't realize is that since Hunter started therapy in September he has required two people to assist him to sit up.  He had no abs or back strength to hold up his trunk.  One person sat behind him supporting his shoulders holding him upright and the other stood in front to make sure he didn't fall forward.

Standing tall!  He has a sling under his behind that lifts him up and helps the nerves in his legs remember that they're supposed to bear weight.  

Hunter has recreational therapy daily.  We've played balloon volleyball and as soon as the weather was above freezing went outside.  Since September Hunter has been outside for one dinner in Houston, one hour on the patio in October, and two ambulance rides to and from Clements hospital.  He said it felt amazing:)

Tuesday:  elbow support, toothbrush tucked inside the cuff on his palm, only could brush about 20 seconds

Friday:  brushed himself, only needed help putting toothpaste on, and rotating the toothbrush 

This contraption took away gravity on his weaker right arm so it didn't fatigue so fast.

 Last night we had a special treat!  Mom and Dad are headed to Haiti on a mission trip with Live Beyond for the next week and flew out of DFW.  Benton tagged along to see his Daddy and rode back home with me.  It was a fun hour and a half for us all and a special time with our big 6 year old.

My boys look good!

Love you Mom!  I can't wait to hear all about your week in Haiti.

Last weekend in Abilene we ran into Uncle Michael working.  I just love this picture!  My boys are growing so fast:) 

Mini-Hunter convinced me they needed dessert after lunch.  This face is hard to resist.

Benton and Clara didn't complain about their after school snack either!

I can't help sneaking in and watching them sleep.  It's hard every week to drive away from our precious kids.

 They had a little message for Hunter this week.    

  As always, I ask for prayers for our family as we are apart.  Hunter and I are missing our boys.  We are ready to be home.  I can't fully express our thanks for all that pray and help our family.  Meals are delivered, our boys are driven to and from school, mail still continues to arrive, and we are blessed by many phone calls and text messages encouraging us.  I am amazed and humbled but all those who continually give their time week after week to help us.  

I got to see precious Sadie and Macey one afternoon this week.  She is thriving, growing, and inching closer to the day she gets to come home.  Pray that the infection is totally and complete gone from her little body after this round of antibiotics.  She's one tough and loved little girl.  Hudson and Chase are ready to have their girls back!    

Sadie gets PT too:)  She's working on her fitness!

Please also pray that Hunter's nerves and muscles get stronger.  As his nerves heal it is very painful.  He says his legs and feet feel like someone is stabbing them.  Please pray this is over soon!  Hunter's desire is to walk and be fully healthy.  He needs to put on weight and muscle.  After months and months of continuous feeds, his stomach and appetite aren't used to a meal schedule or normal portions.  He is still getting some tube feeds through the G-tube in his stomach after meals and at night.  Yesterday in therapy they put him in a harness that holds him upright on a treadmill so his legs could practice the walking motion.  The tube was in the way and he couldn't be lifted up.  His therapist told him that he needs to work on getting his feeding tube out.  This weekend he is calorie counting to see if he can eat enough by mouth to maintain and gain weight.  We need to fatten him up to get that tube out!

After months and months of struggles and hurdles, we are rejoicing with progress and improvement.  Hunter's blood counts are low but stable.  Please pray those come up.  He hasn't had any more bleeding.  We are thankful and excited about being OFF PROGRAF!  After 651 days, almost two years, Hunter's immune system will be on it's own for the first time in his 32 years.  Praise God, the healer and protector!  Hunter's life is a miracle.  It has not been easy, but it's been blessed.  The same could be said of his time in rehab right now.  It's painful yet a time of growth, exhausting and inspiring but so necessary.  We pray we are being molded and changed into the people God wants us to be, and that we can boldly share our journey with others!  We put all our faith in the Lord, because we can't carry the stress of this load by ourselves.  Life after Prograf, here we come!!!