Day 292, Observation

At Monday morning rounds, the doctors at Scott & White released us from the hospital as long as we would follow up with Houston.  They gave us all their records, and we made it to Houston Monday night.  Jana went back to Abilene to take care of our boys.  We met with our transplant doctor at Methodist Tuesday morning.  I think he was surprised at how healthy Hunter looks.  His blood work was great and he could not believe the strength of Hunter's muscles and reflexes, given what he's heard about him.  Then they went for a walk and said "you look as drunk as a sailor, we need neurology to take a look at you!"  In addition, they took him off the Lyrica, which is the medicine that helps his numb "chemo feet."  We are still waiting on a few of the viral cultures to come back from Hunter's lumbar puncture at Scott & White.  We can tell Dr. Carrum would like to attribute this abnormality on some strange virus, but nothing has come back positive yet.   

We thought we would have to wait several days for a neurology appointment, but as it just so happened one his neuro friends was on the hall and popped in to have a look at him.  She took his scans that Temple sent with us, and wanted an MRI with contrast in addition.  That is scheduled for Thursday night.  The neurologist said it was hard to come to any conclusions without examining him when his symptoms were at their worst.  Dr. Carrum did want us to stay close by for observation.  So we've had several days to kill in our hotel with nothing medical on our agenda.  Hunter is still on 60 mg of steroids, which is a much higher dose than we wish he was taking.  The past couple nights have been rough.  A undesirable effect of steroids is restless sleep, and he wakes up to heartburn.  I've done our laundry, visited the workout room, seen two movies, and done a little spring shopping in addition to watching lots of the Olympics.  On the plus side, Hunter's knees and hips feel a lot better on the steroids.  Maybe this second go round of steroids will clear up some of the joint pain he's been experiencing.  We are doing our best to look for positives.    

Hunter feels like he hasn't improved very much the last couple days.  He doesn't slap his foot down as bad as he did last week, and we don't feel like we need to walk behind him in case he falls.  His sensation still isn't normal.  It's like his body can't figure out where his leg is in space, or when it will impact the ground.  He is much better at compensating and balancing despite the sensory problem.  His symptoms are so so strange.  We had a pretty far walk to get into our movie theatre, and Hunter felt much more comfortable holding my hand when walking than by himself.  I hate all this for him.  We are still disappointed to be going backwards.  It is hard to swallow that we were six weeks from being off all his rejection medicine and the prophylactic meds that go along with it to keep him healthy.  We don't know right now how far back this has set us.  I am so thankful for our friends and family that have sent us encouraging scriptures and messages to keep us going.  We aren't promised an easy life here on earth, just the hope of something better ahead, and that we will be stronger and shaped from our experiences.

"When you go through deep waters, I will be with you.  When you go through rivers of difficulty, you will not drown.  When you walk through the fire of oppression, you will not be burned up; the flames will not consume you."

Isaiah 43:2      

Pray for us to be able to walk through this in a way that honors the Lord.

Onto lighter topics, the boys are loving every minute of their sleepover at Nana's house.  I don't know quite how to take the fact that on Facetime they ask to spend "40 more nights with Nana."  I guess I'll just be happy with the fact that they aren't worried about our absence.  We will have some rude awakenings when we get back and life isn't all cupcakes, milkshakes, and cartoons.  It is a true blessing to have family that is willing and happy to love our kids when we are taking care of Hunter.  

Benton's school valentine party was today.  He was supposed to bring a decorated box and valentines for his classmates.  I hadn't started before we left town, so I asked Erin to help him over the weekend.  Benton ended up with a really cute dinosaur that he just loved.  When he got to tell about his box at his party he said "I like my box because it lights up and because Aunt E helped me make it."  Sweet boy.  As always, E impresses with her creativity.  She managed all this while keeping three busy boys entertained, fed, and happy while snowed in.  

Benton was so proud Nana came to his party!

 The little guys are having themselves a ball too.  They spent the day with Hunter's granny and Aunt Diann today.  I'm sure they were a big help making and frosting the cupcakes.

Please pray for the team of doctors that is trying to get a handle on what's going on with Hunter.  We ask that God blesses them with wisdom, clarity, and understanding.  We also humbly ask for prayers for healing for Hunter, for protection from infection while on steroids, and for strength to endure yet another setback.  We are grateful for all of Team Hanner!