Day 299, Adjusting at home

After a really good clinic visit last Friday, we were given the all clear to come home.  His hemoglobin, white count, and platelets were excellent and had recovered from the dip in hemoglobin the previous week.  His 5th and 6th MRIs of his spine came back unremarkable.  The neurologist and Hunter's team in Houston came to the conclusion that he probably had some sort of lesion around his nerve in his vertebra that caused some swelling and disruption in normal nerve function.  Nothing irregular has shown up in all the multitude of tests, so we just have to trust the very smart people who have taken care of Hunter since transplant to interpret what Hunter describes to them.  We appreciate the fact that Hunter's doctor regularly consults with Texas Children's and they have seen strange autoimmune responses in CGD kids that they have transplanted.  This would be classified as unusual.  While it is possible to have Graft vs. Host Disease of the nerve, it is very rare.  Hunter does not have any of the telltale other signs of GVHD such as a skin, eye, mouth, or liver complications.  He is still 100% donor.  So right now, the theory is lesion around the nerve and not GVHD of the nerve.    

Hunter's steroids were reduced to 50 mg daily, and he will decrease again to 40 mg tomorrow and 30 on Saturday.  We go back to Houston next week with the plans to reduce again.  Steroids make him vulnerable to infection, so they want to get him off them ASAP.  He starts physical therapy today to work on his coordination three times a week.  His walking is also complicated by the fact that his feet are completely numb since the Lyrica is out of his system.  His Prograf, the anti-rejection medicine, was decreased a little to 2 mg.  It felt like a tiny victory that he didn't go back to his full dose.  After he weans off the steroids, we will try to taper off the Prograf again.  In the meantime, Hunter is very tired.  He doesn't fall asleep until 3 or 4 in the morning on steroids, even with a sleep aid.  Nerves are very slow to heal, so Hunter may be dealing with the coordination issue for 2-6 months.  This is not really the news we wanted.  

After rushing out of town in a panic, it felt really good to come home to our kids.  We can't say enough to thank our families for dropping their plans and taking such good care of our little guys with no notice.  We even came home to some new trees planted in our yard.  Thanks Jordan!  The boys are having a blast with all the dirt, and we've enjoyed this springlike burst of weather.      

I sure missed these three little faces!

Headed home!

G-Daddy wrestling

Aunt Ernie ordered the boys they CUTEST ninja turtle cake pops.  They loved them!

Poppa took two happy guys on a four wheeler ride,

And to the zoo.  Clayton told me this peacock was "scary like a T-Rex."

cutest little watering helper I know:)

Boys+dirt=good time

It seems like Hunter was just getting healthy sleep habits before this hit, so we are both adjusting to functioning on a lot less sleep.  We know this setback could have been much more serious, and are so thankful for all those that have prayed for Hunter throughout this journey.  This will all eventually be ok.  But when we thought we were almost done, 2-6 months of nerve healing before he is steady on his feet is tough to process.  He wants to be out kicking a soccer ball with Benton, not rehab.  We know that God has a good and perfect plan for our lives, and we put all our trust in Him.  It's good to be home and stable!  Pray with us for full restoration of nerve function in Hunter's legs, for protection from infection on steroids, and for our family as we go forward.