Thankful

I am so thankful that we survived the insanity of football season on two levels (high school and college), I'm taking the night off.

And I celebrated by eating a piece of chocolate we keep on hand for our cabineers.

Well, actually, two pieces.

Oh, okay, three.

Yes, I am thankful.

Lucy

Getting into the Spirit ...

Yes, it is the week before Thanksgiving.

Yes, I've already started thinking about Christmas. In fact, this week I've been involved in my favorite Christmastime service project: Operation Christmas Child.

Operation Christmas Child is a mission of Samaritan's Purse, a Christian relief and evangelism organization led by Franklin Graham (Billy's son). The idea is simple. Shoeboxes are filled with trinkets and little goodies and delivered to needy children across the globe. I'm not talking about children whose parents live paycheck-to-paycheck or who do not own the latest video game. I'm talking about children who have never had a pair of shoes. Children who will take their treasured box home to the one-room hut where they live and share the contents with everyone in their family. Children who will be thrilled that their shoebox is of the plastic variety so it can be used for much-needed storage space.

That's Glenn, packing boxes

The great thing about OCC is that it can involve all ages. When my children were young, they loved the trip to the dollar store to fill up their shoebox. They would agonize over which toy or treat the unknown recipient of their box would like best. They would proudly deliver their boxes to the collection spot at church. Now grown, Erin still fills a box on her own.

Our church is a collection site for our town. I spent a morning this week packing box after box into larger boxes for shipment to the regional facility. Last I heard, more than 800 boxes had been crated up.

The shoeboxes stack up quickly

If you're looking for a way to give back this season, think about filling a shoebox. What a simple way to bless a child. And in the process, find a blessing yourself.

Ethel

Thursday Thnippets on Wednesday

MJ, who would love to feel this good again!

MJ's doctor likely won't be making any more bets that involve her fan club. Brenda, her super-duper caregiver/sidekick/lifesaver, just reported that MJ received 810 cards TODAY. JUST TODAY! The doctor's challenge was 80.

MJ and the Incredible 810 eCards... in ONE Day!

Thanks to all who helped show MJ that she is loved! Now she'll have to get well so she can go home before her room's floor collapses. Or before she starts getting billed for paper and ink. Or a new printer!

The doctor says tomorrow's challenge is zero cards. Sorry, MJ, you've no doubt already lost that :)

* * * * *

Emily

Annabelle (SMA-free)

(angel) Linnea and mama, Diana

SMA's devastation packs a powerful punch in many ways, including the obvious (the loss of a child) and perhaps not so obvious... like trying to stay afloat financially. Diana Lee is mom to an SMA angel (Linnea) and another on earth (Emily), as well as a third daughter, Annabelle (SMA-free); three beautiful little gals. Her husband, Nate, started SMASpace, for which SMA families are extremely thankful, and he was our first blog follower!

Diana makes and sells jewelry to help finance Emily's medical expenses, and it's beautiful. Katie had no trouble finding a couple of things for herself :) Any orders for Christmas need to be in by November 30, so don't delay. Just go to this link and click on the 'Hope for Emily Jewelry' photo on the right sidebar. When you find something you like, email the item number(s) to Diana at diana@hopeforemily.com. If you'd like the metal hook for the earrings in sterling silver or 14k gold, please indicate that in the order and add $2 to each pair.

* * * * *

Gwendolyn Strong, inspiration for the Petition to Cure SMA

If you haven't already, please take a few minutes to urge Congressional support of the SMA Treatment Acceleration Act by signing the Petition to Cure SMA. The goal of 100,000 signatures is easing into sight, with the signatures currently numbering over 75,600! What a great gift 100,000 signatures would be to SMA families in general and the Strong family in particular for their mammoth efforts in getting this petition going.

* * * * *

Stellan, all smiles for a good reason!

The latest Stellan update is that he has been doing GREAT since his surgery!!!

****

And with that, someone around here needs to track down the housecleaning fairy. Nezzy, you there???

Lucy

Prayers for Jonah... and his Mama

Cutting straight to the chase, here's Patrice's post tonight about Jonah:

not good

Things are not looking good for Jonah on the eating front. Only 11.5 ounces today, and only one of those was a decent bottle. All the others were no more than an ounce. Some he refused altogether.

I have been in tears all day. I'm so frustrated I can barely stand it.

I called the pediatrician's office today, explained what's going on, and Dr. B called me back within ten minutes. I think she reads the blog so already kind of knew what was going on. She said, "How are you doing?" I started sobbing and told her I was losing it. She said, "It's time. You know that, don't you?"

And I do know. I don't think we can put if off any longer. I've tried everything. He's just not taking it. We're all going crazy. The back of his ears are bloody and raw because of how he flings himself back, twists himself around, and fights the bottle. He won't eat solids. He won't take a sippy cup. He won't take it from a syringe. He won't take it from a regular cup after about four sips. I can't quit after thirty minutes, because it takes me thirty minutes just to get him drowsy enough to even have a chance. And even if I stop and try two hours later, it's the same thing. He doesn't know what hungry means.

It's time. And my heart is breaking.

It's not the g-tube itself. I think it would definitely be an improvement. It's the intubation that terrifies me. I'm so afraid that it will cause blistering, scarring, and will lead to a trach. And that's a whole new set of issues.

We have an appointment next Wednesday with the surgeon. Honestly, I don't know if we'll be able to wait that long to get the process started. I'm at the point of counting wet diapers just to make sure he's staying hydrated.

Every day like this feels like a million hours.

I'm just so tired. And poor Jonah. I can't even imagine how it is for him. He's got to be hungry, but just doesn't know how to feel better. He's not getting any of the extra vitamins and stuff I'm supposed to be giving him. And almost his whole right butt cheek is raw. He screams and cries in pain every time he has a poopy diaper. And I'm there. Causing the pain. Shoving the bottle. Being the bad guy. Always.

Sometimes it's just too much.

Jonah and his folks have been on our prayer list ever since we 'met' them in February. Many more prayers and a bundle of cyber hugs are headed their way....

Lucy & Ethel

MJ and the Doctor's eCard Challenge!

OK... there's nothing we like more than a challenge... especially when it comes from a doctor :)

MJ's doctor has 'ordered' 80 eCards for MJ - TOMORROW! As he expressed doubt that it can be done (seriously, surely he didn't mean that. This is MJ!), then by all means, we'll do it!

Here's the scoop:

Easy ecard instructions (trust me) -

1. Go here to create a card
2. Choose a card from the selection
3. On the next page, you have the option of using the default image, choosing from the ‘card’ gallery, or downloading a picture (one of your own or one from the internet)
4. The info you will need:
Patient’s first name (top line) - MJ
Patient’s full name - MJ Purk
Patient’s room number - T5103

That’s it - do as many as you can, and feel free to pass the info on!

NOTE: The cards are printed each morning a little after 9:00, so keep that in mind. If they don't arrive in time for tomorrow's printing, they'll be done Wednesday... which is fine, of course :)

If you prefer, real cards can be mailed to:

Nationwide Children's Main Campus

c/o MJ Purk, Room T5103

700 Children's Drive

Columbus, OH 43205

MJ deserves as many cards as she can get. So we're off!

Sorry, kitchen and vacuum cleaner.

Lucy & Ethel