Day 513, Grit your teeth--Admitted again

It's been a rough week around these parts.  I wish with all my heart that my blog posts were filled with joy, celebration, smiles, and roses.  And we have those moments curtsey of our kids.  But for the most part, Hunter's last few days have been instead filled with him suffering from severe muscle pain.  He's a pretty tough dude, so when he says he feels an 8 or 9 out of 10 pain, we're doing all we can to make him comfortable.  At home that was consisting of a pain patch that's slow release and pain pills that wear off ever few hours.  I hate to see him like this.  His feet and hands have gone numb again, and he is so so weak.  Getting out of a chair, anything squatting, lifting his right arm above his head, and even overall hand strength is all difficult for him right now.  We headed to Houston around dinner last night and got here around midnight.  The drive was excruciatingly painful for Hunter.  After exam, he was admitted to the bmt floor of Houston Methodist.  We are in good hands.  

His labs this morning were about the same.  Hemoglobin 9.6 and platelets 198 meant his steroids are at 30 mg/day.  All his organ enzymes and muscle enzymes looked to be functioning properly from the blood tests.  Right now the doctors are thinking this pain is steroid related.  I'm not sure if it's his body being tired of high dose steroids, or that its grown dependent on the steroids and now is feeling the withdrawal as his dose gets lowered.  If it's withdrawal pain, it may possibly get worse before it gets better.  Lovely.  General consensus is to take pain medicine to try and get him back to comfortable and functioning.  They are aggressively treating his pain in the hospital.  I am currently typing from the waiting room as Hunter gets a head and neck CT to check on his arm weakness.

I try and strike a balance on my blog between the truth of the good/bad/ugly of Hunter's journey toward wellness and the happiness that three busy boys bring to our lives.  The truth is that Hunter is in a valley right now.  Sometimes its hard to be real without sounding like we're ungrateful for all that God has already done in Hunter.  We are thankful for all of those people around us who are helping us put one foot in front of the other, and for the prayers offered for him.  This too, will pass.  But for now it's overwhelming.  Hunter has been through so much and is absolutely exhausted.

In more lighthearted news (that I already had uploaded before we came to Houston so I'm leaving it).....

On our last official day of summer we went to the Perot museum in Dallas.  Their traveling exhibit was the "World's Largest Dinosaur."  Benton LOVES him some dinosaurs, and I had seen some friend's pictures and knew we had to go.  I'm talking Benton knows dinosaur names, eras, and diet, and where they lived.  Last year at Pre-K during their dinosaur unit he and his teachers had a deal worked out during carpet time that if she looked at Benton he pronounced the dinosaur name for her.  Hunter's platelets were low, so my dad went with us instead.  Museums are right up Poppa's alley.  We all enjoyed spending the day together.

         

digging for fossils

dinosaur heaven

Poor sleepy thing fell asleep rice krispy in hand.  He woke up, ate it, and went back to sleep.

Benton has loved every day of his school so far.  I knew he would.  I taught with his teacher and he's hit the jackpot of Kindergarten teachers.  Look at this adorable face.  I'm so proud of my biggest boy, and excited to hear of all his new adventures.

Two weeks later, it was these guys' turn.  They were not around big groups of kids for the majority of the year last year to protect Hunter, so this feels very new to them.  Caleb said that as long as Clayton was going with him, he was excited.  

Our families are craving prayers.  Macey is currently 23 weeks pregnant in the hospital having occasional contractions.  Baby Sadie is doing great and growing, and we need for her to stay put for many more weeks.  Hunter is worn out and does not want to hear any more bad news.  Our words are failing us.  We seem to only be capable of pleas for relief.  Thank you for all of those who prop us up when we can barely stand.