Day 87, Pound a Day

Clinic today was short and sweet.  Which was a little unfortunate, because we've had nothing else better to do:)  All kidding aside, it has been a quiet week at the RV.  We can see the light at the end of the tunnel, so we are just trying to pass the time until we can come home to our kids.

Hunter stepped on the scale and gained 7 pounds since last Monday.  Everyone at clinic was impressed and said to keep doing exactly what he's been doing!  He's been loading up on protein and eats every couple of hours around the clock.  He is building up his leg muscles and gaining his strength back little by little each day.  His blood counts stayed stable, and his platelets increased quite a bit.  Thankfully, another steroid reduction was in line for today.  He started out taking 120 mg of steroids a day and is now down to 50 mg for the next three days then can drop again Thursday to 40 mg a day.  Hunter was getting 2-3 hours of sleep when he first got out of the hospital because of the high dose steroids.  His mind just couldn't shut off.  I am happy to report that he is getting more like 5-6 hours plus a nap in the afternoon.  He feels so much better.

The only thing that didn't look exactly as we had hoped from today's bloodwork was the liver enzymes.  They stayed about the same.  Before we can come home, the liver levels need to be more in the normal range and as of today are still elevated.  That is our big prayer for this next week.  If liver enzymes decrease, hemoglobin stays stable, and we are able to wean down to 20 mg of steroids without issue, we might could be back home in two or three weeks.  That will be close to our 100 day mark.  Please pray with us that Hunter's liver and hemoglobin continue to move in the right direction!

Several of you have asked why I'm not blogging much, and the answer is that we haven't had much to blog about!  Hunter is walking, eating, and trying to rest.  Houston got lots of rain this past week, so we've been stuck inside quite a bit.  We have made a few outings into carefully chosen places, and Hunter got some new socks and shoes that hopefully won't make his feet go to sleep.  I got a new pair of sandals as well:)  Another after dinner excursion was to get ice cream at Marble Slab.  Amy's Ice Cream was recommended to us, and it was the first time that Hunter took off his mask in public and ate inside instead of in the car.  We may have to turn into middle of the afternoon eaters for a while to avoid crowds in public.  Anything normal feels incredible!  We are just happy to be making progress.

Can you see Hunter's baby hairs?  It's starting to come back.

Hunter has kept himself busy.  He has run out of things to sell that he has with him, and has resorted to "flipping" items on ebay.  Oh my.  He did buy me a new sewing machine, so I shouldn't complain too much.  Someone might should take away his credit card and internet;)  This week I've managed to watch three seasons of Downton Abbey but can't make myself watch the season finale because I already know what happens.  Exciting stuff around here I tell you!

The boys spent the weekend with Nana, G-Daddy, and Aunt E in Angel Fire.  Hunter and I tried to contain our jealousy at them being in the mountains.  They enjoyed every minute and played hard until they crashed into bed.  

Clayton found a tractor with a trailer...doesn't get any better for this boy

Strawberry ice cream, a G-Daddy special

Not sure who's having more fun here

It's just not a picnic without kit kats and orange fanta

Look mom, I'm wearing a mask like daddy.  Silly boy!

 Erinn has got lots of good stuff planned for our guys this week!  As we get closer to coming home, our little family of five will be in isolation until it is safe for Hunter to be in public.  He will be cleared to be around healthy adults much sooner than kids, so our guys will be missing out on lots of cousin time.  They are trying to get in some friend time while they still can.  Benton and Clara are in their happy place here!  These two are best buds.

 We are so thankful for peaceful times at the RV.  Hunter isn't hurting or nauseous, and is getting much better rest.  It is truly a blessing to think what God has done for us.  We also can't help but imagine being home with our boys soon.  We ask for prayers that Hunter will continue to stay free from infection, keep gaining weight and muscle, that his hemoglobin continues to increase and that his liver will heal so that we can go HOME healed!  It feels so good to even type these words.