Day 476, Unexpected

I had just finished this blog post last Tuesday about Hunter's latest clinic visit when we got news that we needed to start praying for Hunter's brother Chase and his wife Macey.  Without going into too much detail, they unexpectedly lost one of the twin girls that she was carrying despite extraordinary efforts to save them both.  The Hanner family is grieving the loss of a little girl we will never get to meet here on earth, yet so very thankful that a healthy sister is on her way for big-brother-to-be Hudson.  It has been heartbreaking to watch Chase and Macey suffer through the loss of a child, and the future they've spent 17 weeks imagining will look different now for their family.  Through it all I've heard Chase voice the same words I've said many times, "I don't know how people make it through hard times without faith."  Please continue to pray for them as the upcoming months will be full of highs and lows.  Benton summed it up quite well when he cried that he was going to be happy when their baby came but really sad too.  This just gives us one more reason to look forward to heaven.  We love you Chase and Macey.    

          

As we packed up to leave for our clinic visit on Friday morning, I told my mom not to expect anything big at this appointment.  If all went perfect, maybe Hunter would get to reduce his steroid dose by a tiny bit.  As it turns out, his platelet count came up nicely to 269, right in the middle of the 140-400 normal range.  Dr. Carrum was very pleased with his response to the smaller dosage of the Nplate injection he got the week previous.  Last month as Hunter's platelet count got higher he just stopped the Nplate.  This time, he is going to get smaller and smaller dosages weekly until he no longer needs them to keep up his platelet count.  Slow and steady wins the race.  

He is also going to alternate taking 10 mg of steroids one day and 5 mg the next for a couple weeks, and if he maintains his platelets then go to 5 mg daily.  After a month or so on 5 mg, he will very slowly start to wean off his rejection medicine.  The last attempt at cutting back on his Prograf was stopped by his legs going numb due to the nerve in his back.  This time will be much much slower.  

Hunter's medical team in Houston get a big kick out of him.  They're always making comments about his cowboy boots and every appointment ask "what are you trying to negotiate this week car man?"  As they were reviewing his medication list, Dr. Carrum thought he was ready to stop his antibiotic.  We did not expect this until he was off his Prograf.  He is also switching him to a less severe anti-fungal.  Hunter was thrilled at this news.  The Vfend he has taken since college is hard on your body and makes you very sensitive to sunlight.  If I took it I would probably be sick to my stomach.  His medication list now only contains his steroids, Prograf, an anti-viral (to keep shingles in check I believe), and one anti-fungal to protect his lungs.  We could not wait to share the good news!  Hunter has taken a daily preventative antibiotic every day since he was diagnosed with CGD at two years old.  After 29 years of being dependent on a pill to kill bacteria, we had a lot to celebrate.  Plus, he got his first vaccines.  Total body chemo wiped out all the immunities that he had from childhood, so he has to get all the vaccines over again.  Four shots later and we were on our way.  

Saturday was our 11 year anniversary, so we had a lot to be grateful for.  The last 15 months have taught us to celebrate new freedoms, to take time to reflect on where you've come from, and then to get back on an even keel because new challenges may present themselves.  I'm so proud to be married to Hunter and I'd do it all over again.  I've loved him since I was 15.  This last year of our marriage has been the hardest by far, but I can honestly say Hunter and I have truly depended on each other, our families, and our faith in God to get through it.  

We stayed in the Woodlands an extra day for our anniversary.  We ate, shopped, went to a movie, and ate some more:)

Friday night we ate at the Rainbow Grill.  It was recommended by a friend and so delicious.

Saturday dinner at my favorite!

We played a little Top Golf before heading back to Abilene for VBS at church.

Before we left, the boys and I have been in the hot grind of a Texas summer.  We had a big rain and Hunter called on his way to work and informed me there was a good mud puddle.  The boys were good and nasty by the time we finished.

We saw a movie with our cousins....it was a big hit.

The only way to beat the heat is head to a pool!

Caleb the little trickster jumped off the diving board for a good two hours.  This time he went backwards.

Way to go brave brother!

We met Nana and G-Daddy for some bowling and to hand off the boys for our trip to Houston.

They had a blast overseeing some expansion at the dealership and playing out at the farm.

Despite the looks on their faces, they're really excited to go to DiDi's house.

Saturday and Sunday they spent with Honey and Poppa.  They love selfies like most little people I know.

Sunday night was back to normal...this is every night trying to get these guys to bed!

As you can tell, we've been on an emotional roller coaster over the past two weeks.  Extreme joy at Hunter's progress followed by sorrow.  In every situation, we call out to our heavenly Father to guide our steps and give us strength to just keep walking.  Please continue to pray for our family:  for Chase and Macey and their precious baby girl, for Hunter to stay free of infection, and for his body to continue to get stronger in anticipation of getting off his rejection medicine in the not to distant future.  I'd also love for you to join me in asking that his platelets just fix themselves.  Much love to all of Team Hanner.