Day 551, Week of Blessings

I know it would be a lot easier to update more than once a week, but I arrived HOME late Wednesday night and have been soaking up every second possible with three little boys.  It was a moment I'll never forget when Benton opened up his eyes Thursday morning and I was next to him in bed.  This has been a blessed week.  Hunter continues to make tiny improvements day by day, and we have also celebrated the arrival of our precious nieces Kinsley Blake and Sadie Rae Hanner.  I've had many moments when I've wondered what God was doing in the lives of our family, but a whole lot more that I've appreciated that the events in our life are under HIS Almighty control.

Things can change very quickly in a hospital setting.  Last weekend had been pretty uneventful.  Hunter continued to make very small gains in his movement, and was getting more and more comfortable with his new tracheotomy and feeding tube in his stomach.  Mark went home Sunday night to get some work done at the dealership.  He had been with Hunter since September 22nd when we were careflighted from Abilene, so we were excited that Hunter was well enough for him to leave his "hospital night buddy" and go help Chase.  Chase had been splitting his time between Macey in the hospital and trying to be Mark, Jana, and Hunter at the dealership all the while taking care of Hudson at night.  That's a lot on one person, but you would never hear him complain.

Macey had a few contractions Sunday during her twice daily monitoring.  Monday she just felt a little uneasy.  Jana has some sort of sixth sense, and decided to go ahead and shower and head over there.  When they checked in a month ago, the doctors told them that they can be from Macey's hospital room to a delivered baby in 10 minutes.  All the sudden, we got word that she was about to deliver her precious Kinsley.  I can't even imagine.  Kinsley will forever be in our hearts and a loved part of the Hanner family. Chase and Macey are sad to not get to have her here on earth, but thank God for the grace and love they feel from God choosing them to be her mommy and daddy.  A few hours later Sadie arrived weighing in at 2 pounds 14 ounces and 15 inches long.  She has a long road ahead, but God has big plans for this girl.  She is tiny, beautiful, and we are all in love.  The Queen has arrived:)

Daddy and his daughter's handprints:)

Hunter's myelin around his nerves is beginning to heal.  He has progressed from just being able to barely make muscle flickers last week to now being able to squeeze specific muscles on command.  His hands and feet are the most distant from his brain, so those signals will come back last.  His shoulders, triceps, and forearms can contract and generate some movement.  His left hand can almost make a fist and squeeze.  His right is a little behind his left because it lost the strength first.  He can squeeze his abs, glutes, thighs, and hamstrings but they are all very weak.  It is harder to point his feet or wiggle his toes.  He has now been in a bed for almost 6 weeks.  It would take time to regain strength from that alone, not to mention that his brain and muscles have a slow connection because of the demyelination that occurred. At therapy they work on things like sitting up on the side of the bed.  He is doing a lot better at controlling his neck muscles and posture, and is able to slide both his arms forward and backward on a pillow.  He still needs support to help him sit up, but can lean from side to side and use his core to stabilize somewhat.  After about 10 minutes sitting up, he's exhausted.

This is a workout for him to sit up in the chair.  And he's practicing breathing off the ventilator just with humidified oxygen:)  

Hunter's muscle that controls breathing, the diaphragm among many others,  was also severely weakened.  This caused his respiratory failure, along with his lung clot and pneumonia.  Thankfully, the ventilator allows him to slowly build and exercise this muscle too.  Slowly over this last week the settings on the vent have been turned down during the day.  Wednesday he did his first trial breathing totally on his own with no support.  It was very nerve racking for him.  Thursday and Friday he spent several hours off the ventilator on a trach collar just with humidified oxygen support.  Just mention the word trach collar and his heart rate shoots up.  I've never known Hunter to be a worrier, but I know he would appreciate prayers for calm and peace as he takes back his breathing.  He will continue to stretch out the time off the ventilator during the day while resting on pressure support at night.  This will be a slow process to get completely off breathing support.  We have found the nurses, respiratory therapist, physical therapist, and doctors at Zale Lipshy to be an incredibly caring and encouraging bunch.  We are thankful to be recovering at such a world class organization.

visit from his brother last Saturday

Sending Mark home Sunday

October 15th was National Infant Loss Awareness Day.  I am wearing my Hope Mommies shirt to support Macey and all the other countless women who have suffered great loss but choose Hope that they will be reunited in heaven.  

With Hunter stable and making gains, I left Hunter with his parents for a few days and headed home.  Mom and Dad had plans for well deserved rest and relaxation for the weekend, so it worked out perfectly.  Mom was in Dallas Wednesday with my Aunt Janet for a checkup, and they drove me home.  We had two tough nights in ICU with Hunter, so I was very glad for a ride back to the boys.  It's been a happy reunion, and good to sleep in our own beds.
  

tired puffy eyes, don't care;)

meeting Sadie

 Benton requested that we eat lunch with him Thursday and Friday.  There is nowhere else I'd rather be.  Friday morning we met up with Ashley, Aunt E, and Aunt Michelle and their littles.  It was good for my soul to spend a few minutes with these ladies.  They have all spent countless hours driving my kids to and from school, making sure they get naps, fed, bathed, hugged, and loved.  If I can't be there to kiss their scraped knees and bumped heads, I'm glad they are in my place.  Mom and Dad work full time, so it takes quite a bit of teamwork during the week.  These three, my parents, and many many more are taking care of our kids so I can take care of Hunter.  Families from our church provide evening meals most nights, lunchables appear for school, and there is never any shortage of people willing to love our family.  Our church family takes care of each other, and for that I'm so incredibly grateful.  Thank you to all of you who have sent meals, cards of encouragement, care packages, stopped by to hug our necks, text messages telling us you're praying, or facebook comments.  They are deeply appreciated and make our burden just a little bit lighter.

Not too bad for 4 three year olds and one who's four:)

These cousins were happy to see each other!

My childhood friend Kayla picks Benton up most days from school.  Please notice that they were writing "I love Benton.  I love Eva."  Then Benton wrote "Poop."  This might have been Hunter's favorite picture of the week.

This is probably the last that you'll hear for now about our Team Hanner page for Be the Match.  Hunter's ride has been postponed, but his fund raising page is still active.  Thank you so much for all of you who contributed in his name to Be the Match.  I have almost completed my hundred miles and our family really enjoyed the time spent being active together.  Hopefully someday we will have a big ride to celebrate.

logging miles

Impressive #teamhanner selfie Zach!

Hunter's cousin Summer has been organizing all her friends to pray and log miles for Hunter.  It has been precious to receive lots of texts just like this.  Thanks New River Youth!

Go Team Hanner!

I decided to go ahead with ordering Team Hanner #hundredforhunter shirts.  These aren't raising money for Be the Match, they're just for fun.  If you are in Abilene or can pick them up in the DFW area, just click on the link and tell me what size you'd like.  You can pay me when you get them.  They will be around $15.  If you are out of town, please email me to make payment arrangements then order your size.  My email is in the link.  We will get them shipped to you once you've paid.  I'm planning on placing the order Wednesday.

These are American Apparel shirts, and may run a little small.  The say BeTheMatch.org on the back.

  Whew!  Thanks for sticking with this update if you've made it to the bottom.  It has been one wild and blessed week for the Hanner family.  As always, I have some prayer requests.  Please pray for our precious Sadie to continue to grow big and strong.  Macey asks specifically that we pray that her tummy begins the process of digesting nutrition.  We also praise God her first brain scan was clear of bleeds.  She will continue to receive scans throughout her recovery and we pray her brain is protected as she develops.  Hunter and I give thanks that his muscles have started to improve.  It was very difficult to continue to watch them get weaker and weaker over the last six weeks.  Hunter also needs prayers of peace as he spends more and more time off the ventilator.  He just doesn't feel secure in his breathing on his own.  We pray that he will feel strength, comfort, and courage as he spends time practicing breathing on his trach collar.  Sadie Rae and her uncle Hunter Ray need prayers for their lungs, strength, growth, and for all those taking care of them!  It takes a team of prayer warrior for these two:)