“Mr. President, the Soviet ships are turning back.”
“Thank heavens. Action stations stand down. Set condition three throughout the ship, but keep the alert fighters at high readiness. The enemy may be licking their wounds, but they’ll regroup and come back at us hard.”
Blood pressure down. Thank you enalapril.
Heart rate down. Thank you propanolol.
Food staying down. Weight going up. Heart function slightly better. Thank you Cosmic Cookie.
Pulmonary valve is still kaput, hanging there like a sheet in the wind, letting Ari’s blood slip backwards where it shouldn’t, and thus increasing the load on his heart. ‘Cause that’s what he needed, right?
Why can’t he just get a hangnail or something?
It seems every time Ari shows a symptom, it could be nothing, could be something, and could be a raging problem.
You know what they say, if you hear hoof beats behind you, think horse before you think zebra. Throw up happens. More likely reflux than ebola.
Seems Ari’s an exotic little boy. Let’s hope he doesn’t learn to dance.
As for surgery, Ari’s like an aging pro athlete headed into the playoffs. He’s not at 100%. He’ll need surgery in the off season, but for now he plays on while the trainers keep him buffed up and ready to roll when the lights go on.
In Ari’s sport, if he keeps winning, he keeps playing. How long? Who knows. The doctors don’t even want to guess. Every month and every pound gets him closer to better (but not good) pulmonary valve options. Right now they suck…this one lasted 4 months.
Ari’s been gaining 20 to 30 grams a day since going inpatient for treatment. As long as he can keep this up, he’s winning.
If he don’t, you know…
When I write updates, I always ask myself, “Okay, where are we now.”
First thought that came to mind this morning, we’re waiting. Working and waiting. Waiting for a miracle.
Scuffle for a nickel, struggle for a dime.
Forget about your troubles, leave the past behind.
How come the future has to take such a long, long time,
When you’re waiting for a, when you’re waiting for a,
When you’re waiting for a miracle?
Thus the title of the update. Then I realized it’s not exactly right. Sure, we’re waiting for the next move. Waiting to see what happens.
But we’re not waiting for a miracle. We’re living with him.
Much better.
So it’s back to “regular” life. You might think I’m being cheeky when I say that, but it’s actually quite regular (Miralax helps) and quite fun. Right now we’re listening to Sylvia’s Mother, trying to decide if we like the original Dr. Hook version or the Bon Jovi cover.
Personally, I’m torn. JBJ sings it well, but he changed a few words. You can’t change Shel Silverstein lyrics. Blasphemy! But it sounds good.
Ari seems to like it when I sing it. He smiles at every plaintive falsetto “Please Mrs. Avery” I belt out.
I guarantee you he’s the only one.
Let us know which one you like better.
—————————————————-
—————————————————
On the subject of waiting for a miracle, got word late yesterday that Ari’s cardiac ward buddy, six month old Mickey White, got his new heart last night. Early indications are that the transplant went well. Next few days are tenuous, and then the long road begins.
Rock it, Mick.
And a special shout out for Mick’s dad, hang in there, homey.
Echo of Hope 
Ari, I couldn’t help but think of you and your parents last night. I woke Kaleb to give him his midnight meds and he “roared” at me quietly…. embracing his inner lion, no doubt encouraged by your visit last week at CHB. Hang in there buddy! Your dream team is building their plan and Dr. MacGyver is the best you can get… Keep giving mom and dad those dashing smiles; it makes everything perfect.
Always sending good thoughts that little munchkin’s way….give him kisses on his feet for me….mwaaaaaa!!!
Mike, I heard you sing that song to Ari as we strolled the CH corridors, and I saw his reaction. I don’t know which version it was, but that’s the one I vote for.
Zayde
‘Listen to the mustn’ts child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never have’s, then listen close to me…. Anything can happen child… Anything can be !”
Geez I have to go with Dr Hook ’cause that’s the one we really sang along with all those years ago , scratchy vocals and all. However if I had a choice in whom I would want to be singing to me if I were Sylvia I would definitely go with Bon Jovi !
Yay, so great that your home. Ari is looking better every day. I love seeing his beautiful smile. Big hugs to all of you. Oh, and Dr Hook but not by much. JBJ and Richie Sambora are better to look at and their version was pretty good.
So sorry you are back at CH but they are the best as you know.
. Sending healing thoughts your way, hoping the med regime can buy Ari the time he needs….I will never forget the day I met you at Joe’s in Framingham when Ericka was 17 weeks pregnant and you had just been scheduled for prenatal surgery. Its been interesting, sometimes heartbreaking and sometimes really funny to follow along. 🙂 My thoughts and prayers are alwasy with you.
So glad to hear you are home! I will have to explore both videos before voting!
Carpe diem!
Dr. Hook. Hands down. No contest.
Ari and mom/dad. You’ve all been an inspiration to so many people. Ari’s gonna be a “lady killer” with those eyes and handsome face. Just keep smiling and know that many people love you and are praying for you. Ben’s great aunt, Sigrid
Ari, I see that you are not a person who quits his game in the middle of the runway. I have all the trust in you! And, I am sending all my extra stength to you via the legendary cosmic cookie.
Glad you’re able to be at home. And you’re right to enjoy the moment (s). Loved Hook the best! Hugs and prayers, including Mickey of course.
You are an amazing family! What a precious little boy! We pray for you all every day!
Keep listening to the music! Such great medicine for you all.! I voted Hook ( grittier and plaintively real) although I do like JBJ…hugs to you all.
One of my favorite songs….ever! Can’t tell you how many times I’ve played this video & CD (over the years) over and over again…. (Love JBJ too, but sorry Hook’s got this one hands down in my book!) This song will now be yet another trigger that makes me think of Ari and I will imagine that beautiful, sweet smile whenever Daddy’s being silly singing “PllllllllllllllleeeeEASE, Mrs. Avery…..” Keeping you all in my thoughts and prayers and that certainly includes little Mickey White… miracles everywhere! xoxo
Glad to hear Ari is home and jamming out with you guys! Lots of love!
Hook Hook Hook, how can you beat a “houseboat” for the location and gravel voice of those boyze? Not too mention their “meds”. Speaking of which so good to hear Little Ari is responding to his meds and that he’s home where he belongs. He is incredible, most take after his “parents” xxx
No day but today. I try to think we are blessed becaue we know up front to savor every day instead of not realizing that until it’s already passed us by. ❤ to all three of you!
JBJ does a commendable job. Lot’s of production, which is cool but I still prefer the original. Thanks for that blast from the past! More importantly, what wonderful news for little Mickey. Of course we are all praying for him. Ari, you’re doing so well, little guy. Keep it up. Big hugs.
Your comment “But we’re not waiting for a miracle. We’re living with him,” is exactly right. Joy in the moment – savoring the moment, that is what each of us have the opportunity to embrace or deny. Seize the day.