Friday, July 10, 2009

My talented sister came over with her family to spend the 4th of July with us and blessed us with some of her beautiful photography. Thanks, sissie. Your amazing!!!!!
Below are some of the shots she took.
And yes we use a wheelbarrow instead of a stroller around here. Now that we have chickens, we're just THAT kinda country.
Shep went to the cardiologist today. Everything looked about the same. The narrowing in his heart remains the same. We are praying it will grow with him as he grows but I don't think the doctors are holding their breath. They mentioned again today the possibility of another heart catheter and/or the possibility of open heart surgery. It was the first time they had mentioned going into the OR as a possibility in a while and I must admit it was more than little unnerving. 
We want so much for this chapter is Shep's life to be over, to move on to being a healthy, happy little boy. But if we've learned anything, it's that Shepherd has a God that loves him and his parents very much and he can be trusted with these kinds of things.
So it's just  a matter of watching and waiting to see what will happen. 

I also talked with the airway folks recently and they plan to schedule his bronchoscopy for August/September. At that time, if everything looks good, they'll simply take his trach out and put a bandage over the hole, while they watch him in the hospital for a couple of days. As long as he can breath good on his own, he's good to go.
Please be praying for this. If for some reason, during the bronch, they don't think he's quite willing to de-canulate (take his trach out) then we'll have to wait for another 6 months to try again. They don't usually let kids de-canulate during the winter months because of all the illnesses that go around during the winter.

Other than that, the really BIG news is that my 3 1/2 month old who has not EVER EVEN ONCE had the chance to nurse is, as of today, nursing like a CHAMP!!!! It's almost like he's got some sort of divine help or something. Weird.
So I don't plan on getting much sleep for a while but I am DELIGHTED at this answer to prayer. At our appointment today they took him off of the special formula he was on. Hopefully, his chylothorax is completely healed and we will not see the likes of that $200 a can (that lasts 4 days) formula again. Dr. R (our cardiologist) also took his diuretics down again. He would really like to get  him off of those completely, as they are hard on the kidneys and can even cause deafness in babies who are on high doses for long amounts of time. 
So that's it. I would call it a successful day- that is if you measure progress by victories and not by cleanliness. 
And I am looking forward to a weekend!!! Oh, how I love that Friday feeling, knowing my honey is gonna be home all weekend. (Speaking of my honey- he recently taught a short class called "Loving Discipline"  at our church. I hear it was pretty good. If your looking for some encouragement, check it out here) Just look under The Gospel Centered Home classes and look for Noah Joyner.
 We already started the weekend off with a family movie night. It was a great Western called "Seven men from now." 
I love making a pallet on the floor full of blankets and pillows and letting clean little boys whose hair smells oh so delightful cuddle up all around to watch a movie. Ahhhh, weekends.

And you gotta be kidding me with this!! Are you dying right now? I am already dead. 
They are SOOO adorable. Don't you wanna cuddle up with blankets next to these sweet things and just soak up whatever moment you can get? 
Well chances are you can't cuddle up with these three, but I am sure there's someone you can cuddle up with to savor a moment.
A moment like this one, one the fourth of July. 
Savoring this moment only cost us approximately 225 mosquito bites to get.

And this moment with my BFF/sister. Ohhhh soooooo swweettt! 
Love you sissers.

I hope you all have a great weekend, seeing the joy God can bring into any season of life. Sometimes it seems like it lasts forever, sometimes we struggle to find even moments- but they're there.
Just ask Him to show them to you.


Anonymous said...

1. That's so exciting that he is nursing! yay!! I'm so happy for you both!

2. Your boys are so adorable. Love that pic of the 3 of them!

3. You look so beautiful in the pic w/ all 3 boys. Love your hair. Now I want a haircut again.

4. My phone is dead, but I will write soon to see if i can come visit. Miss you so much! Love you guys!

Heather Cantalupi

Andi said...

Speechless! I was just praying for you the other day in regards to nursing - how awesome is our great God! I love your posts - your writing and the pictures! Thanks for sharing your life with us - you SHINE Jesus my friend! Much love and prayers from DC :)

Ana Lisa said...

I can finally log in again!!
You look gorgeous! And your boys are precious!! I love all the pics!! Keep 'em coming! Praise God for ALL He is doing!! Love you!

Stephanie said...

oh, i just get welled up with tears when i read about His work in your precious family!!! these picrures are SO great. esp. of the 3 boys!!!
WAHOO for the nursing! miracle!! so excited for yall!