Monday, July 6, 2009

What's new around here?

I think it is needless to say, "Oh my goodness, I've been soooo busy, haven't had time to write, it's just crazy over here, please forgive me,yadayadayada......."
That's life, right? I won't annoy you with explanations.
Moving on.

"I'm gonna knock you out"

"Momma said knock you out"
So he may not be able to knock you out with his massive guns quite yet, but our little Shepherd is gaining strength daily.
He is weighing in at a whopping 9lbs as of today's weight!!
This is how Shepherd feels about life these days. I can't get enough of that face.
! He continues to eat by himslef by bottle and without an NG tube. He goes back to the cardiologist on Friday to have an ECHO to look at his heart, an xray to look at his fluid accumulation, and an overall check up. Hopefully at that point they will FINALLY take him off the Monogen formula and he can start getting breastmilk (we'll also attempt to learn nursing at that point. I know it's been 3 months and he never has tried, but he's learned bigger thing so far). He's doing really well. 
This morning, I leaned over his crib, talking to him, and he just smiled and cooed(in his heart, not actually) well, the smile actually, the coo silently. 
I am so grateful for these moments with Shep, but I cannot help but think of the other parents who didn't get those moments, and be heartbroken. Last week we found out that Shepherd's neighbor in the PICU passed away unexpectedly. She was a month older than him and also had a congenital heart defect. All week long, I have been thinking about them and grieving for their loss, especially as I experience moments they never got. Please pray for their family and so many others who are walking an unbelievably painful road right now.

Aslan is proudly wearing his Ronald McDonald House shirt, while making sure his "pretend Shep" get's a good once over. He has been practicing his suctioning  and a number of other medical procedures so that he'll be ready for med school/kindergarten next year.
If you'll notice his hand pounding on the bench above, that is how he makes the "heart beat." 
He frequently informs us that Shep needs to be suctioned because he is "soundy" (that's medical jargon). The other day a woman form the home health company asked him to show her how to suction (seeing as she is the one who trains all of the home health nurses in trach care). He talked her through EACH step perfectly, pushed the rubber chest of his doll so that it would sound like air coming out his trach, then suctioned him. 
Their considering hiring him.
And he has gratefully taken on the role of hand-washing police around the house, informing ANYONE who considers touching Shep that they must wash their hands FIRST.
Were so excited that the RMH contacted us the other day to ask us if they could use our families story for their next fundraiser. We are so excited to be able to help them in anyway and share our story to benefit other families. They are going to set us up with a photographer to take family pics, then interview us. What a wonderful opportunity. We love that place!!!!

As you can see above, the boys are having a real hard time adjusting to having the nurses around. It's tough but they're so resilient.

All of Shepherd's bottle's match his outfits. What?!? Don't your kid's too? What kind of parent are you??!?

Just because his bottles match his outfits does not mean I dress my son in drag, though. 
The above picture is actually one of yours truly as a baby. 
Creepy, huh? I mean cute, huh?

And last but not least, among other developments around the Joyner house, is Haddon's affection for carrying guns in his pants.
Apparently he saw someone storing his gun in the front of his pants (Don't ask me where. It's not like they watch shoot-em-up cowboy movies almost daily).
Since then, he has decided that if it's a good idea to stash away your gun in your pants, then why stop there? 
No matter the size of the gun or the number of tools... anything can be stuffed in there.  
No really, anything.


Anonymous said...

Thanks for the update Steph...your kids are so awesome :) I am glad things are going well. We're still praying for you guys! Hopefully I'll see you at church one day soon.

Andi said...

Who needs a tool belt! What a great post about the boys - treasure these sweet moments!Thanks for sharing them with all of us :)

Betharoo said...

Your boys are too funny! I love it that Aslan tells everybody to wash their hands and pretends to be doc. He's so smart! And Haddon with his diaper full of tools is just too funny! LOL!!! I am so glad to see things getting back to a happy home routine! We keep praying for ya'll.

Joey & Page Craft said...

I just love reading your blog postings. They give me such encouragement and joy. Your precious boys are too cute for words. I loved seeing you the other day, we will do it again when Sayde can join the bunch!!
love you