"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Friday, August 14, 2009

Michigan Keepsakes

Connie's Grandma Marybelle and the daughter of a friend from church, Hannah Martin, handmade him pillowcases and a blanket for use during his upcoming hospitalization. They are all themed after things he loves--Elmo, Thomas, animals and monkeys! Below are the pics I took of them. Aren't they cute? Thanks Hannah and Grandma! My brother's family from Texas came up for a visit this past week and brought with them a special cross and pocket charm for Connie to take with him too. Thanks guys! There's even a pic of him eating a snack while I took the pictures.

This one even says "brave". . .

Thursday, August 13, 2009

Event for Connie's Fund

Hello Everyone! One of Conway's biggest fans, Carol Stadler, has graciously volunteered to organize a fundraising event to benefit Connie and help out with the health insurance premiums (COBRA) and lodging, etc. for his trip to Michigan. On August 24th, from 5pm-8pm, we hope you can make it out to the Applebee's in St. Peters for some food, fellowship and fun--for a great cause! You will also have the opportunity to purchase a "Pray 4 Conway" wristband and give Greg and Mary Kathleen a hug on Connie's big cath/pre-op day. Click on the link above for directions. You MUST present the coupon in order to have a portion of your meal donated to Conway's fund.

Getting Closer

You know you're getting close to the surgery date when the doctor's office calls you and wants you to start decreasing and stopping certain meds. During the catheterization and the EP study, they will actually be inducing atrial flutter so that they can map out exactly the part that will need to be cauterized or whatever during the surgery. Therefore, he needs to stop the amiodarone by next Monday and we've already cut his dose by one third. Now we just have to cross our fingers that what he's taking now is enough to prevent an episode of flutter before the 24th! Also, he needs to stop the coumadin about 10 days before any invasive procedures so that means today or tomorrow will be his last dose of that. I think Colleen is checking with Dr. Bromberg to see if he just wants to have us send in a pacemaker tracing today and if it shows no high rates just stop the coumadin now.

I am really going back and forth between feeling like I'm dying to get up there and get this part of the process over with, and wishing we could put it off another six years or so. I just don't know how I'm going to deal with those eyes looking at me with that "how could you do this to me" look. It's not like we can tell him it's for his own good and reason with him. It's not like we can say, "but you'll be able to go up the stairs again and play and have more energy." I am starting to think he prefers being carried around and spoon-fed anyway!

He had speech today and did great. He's getting a little fiesty when it comes to only wanting to play with what he wants to play with. He was loving these cards that Ms. Chris brought but when she wanted to play with something else to work on a different skill, he balked and fussed until she gave in and let him play with the cards. He's even got her wrapped around his little finger now! Oh well. She agrees that we can push him after he's feeling better. Stinker.

Wednesday, August 12, 2009

The Rest of the Pics

Tuesday, August 11, 2009

Pre-Surgery Portrait Shoot

We took the family out today for an updated family portrait (we haven't had a "real" one made since 8/07) and some shots of Connie before the big day. I'll post a teaser now and the rest after Greg works his magic on them. Our scanner is horrible and the cd they gave us have the pics in their original, yucky state.

Sunday, August 9, 2009

It's been a few days. . .

. . .so I thought I'd update to tell you all nothing much has changed! We are liking the rather mundane, dull, boring, etc. last several days. Connie hasn't thrown us any curveballs and it has been nice! We've been spending lots of time with family and friends and his cousins from TX even made a special trip up here to see him. He's been eating more (actually asking to eat!) and has generally been acting like he's feeling better. He even climbed the stairs a few times and is carrying his laptop around again! He has a couple of "regular kid" things coming up on the calendar including library story time and a couple of "not-so-regular kid" things coming up like more labwork and a pacemaker phone transmission. He's getting his labwork done tomorrow to check his INR and next Monday, we are going to check the pacemaker and if it shows no history of high rates or atrial flutter, then he'll come off the Coumadin on 8/17, a week before his cath. I thought I'd share a cute thing he did tonight. He and Mookie were sitting at the table having a bedtime snack and watching Wall-E while Greg and I were in the living room. When it got to the part where the rocket was landing and there was an explosion, he yelled out, "Oh noooooooo" so emphatically it was ridiculous! It was such appropriate timing and so hilarious! Greg and I just started laughing and praising him. We didn't even think he was paying attention to the movie at all and then out of the blue comes this comment!