Sunday, August 2, 2009

First off, I want to let you guys know how our appointments up at UNC went this week.
Everything went GREAT!!
Besides the minor details like.... I put on all my eye makeup (and that can be a lot sometimes), then forgot mascara.  Yes, lots of eye makeup- NO mascara. This is a problem. And you'd better believe I put our nursing services to work by sending her down to the gift shop with my credit card to see what she could do. 
But, Alas, her talents with medicine could not help her to produce mascara out of thin air. And I went the whole day mascara-less.
THEN, there was something in my contact ALL day (probably all that eye shadow without the mascara- barrier holding it on the eyelid) so at the end of the day I felt like I had a scratched cornea!
Now, besides all THAT, I couldn't have asked for more.
He saw the airway folks first and they decided to bronch him in the next couple of weeks! I can't believe it!
Now, of course when they do the bronch there are any number of things they could see that would give them reason not to take his trach out but if they don't see anything to give them pause they'll go ahead and take it out. 
Then we'll stay in the hospital for a few days to make sure he can breath okay on his own.

I won't lie.
The whole idea of going back to stay in the hospital and going through a procedure with the potential for dissapointment is a little(lot) unnerving.
But I was reminded today that "When we fear God, we have nothing else to fear. But when we don't fear God we have everything to fear."
I've got to remember that whatever takes place on that day is going to be what God has fully intended for Shepherd and He alone is who writes this story... and HE CAN BE TRUSTED.
So hopefully, I'll hear from them on Monday to schedule the big day
! Please pray!

On another note, the urologist (looked at his kidneys) decided that it looks like we won't have to do anything surgically about his kidney. It appears to be functioning and as long as Shepherd doesn't get urinary tract infections while on antibiotics (which he has been on since birth and will continue to be on for the next couple of years) then he should be fine. IF he gets infections then they will have to remove one of his kidneys. But I think everyone feels good about how things look currently.
The nutritionist met with us and is still trying to figure out how to get him gaining, while nursing some,too. It's a little bumpy still at this point. He needs to be gaining about an oz. a day and at this point he is not consistently gaining at that rate. But only time and working out the kinks will tell. We have lot's of options, though. Speaking of Shepherd bulkin up, how hilarious is thhis picture of one of our friends little girl who is.... only 3... weeks... older than Shepherd. Don't you think they bring out the best in each other?

Well, that's the medical stuff.

As far as "regular" life goes, we've been busy with, oddly enough, weddings and funerals. Over the past month Noah has done two funerals and done two weddings, both of which I sang in (the weddings, not the funerals), so that has kept us both very busy.
He's out of town tonight for one of the funerals but by the merciful hand of God, I have a night nurse.
They've been having a hard time about once a week getting us a night nurse and all I have to say about that is calling it a "night" is quite deceiving. Don't people sleep at night? a little?
Between suctioning, false alarms going off, feedings , and diapers- I literally don't sleep. Please pray they find people to cover the future nights coming up. Ultimately, I don;t want to complain though. Most family's with home health are much worse off than us. And for us this is a season. For some families this is the rest of their lives. And then there are the many families who don't qualify for home health but have children MUCH sicker than Shepherd. They never get a nurse, or a break, or sleep, and may or may not have family and friends like we do.
So, no more complaining here. 
We are tired, though. And though on most levels I think we are loving life right now. There are so many subtle things that have big impacts that we haven't quite figured out yet.
I feel  like I'm in this odd place where I'm really enjoying life right now and yet my soul is not satisfied. I feel distracted and disoriented lots of the time and find it difficult to focus.  And there is only one person who requires my focus- and that's the person of Jesus Christ.
I just find it very easy to be self- relient in this season. I find myself trying to solve problems soley with the resources in front of me. I tend to think more about my weaknesses than my Father's strengths. I have very little time alone. It's very easy to be distracted. And the idea of being disciplined or getting up earlier to make sure I get to gain perspective before my day begins seems my strength.
 You see. 
I don't want to structure the patterns of my life by what I can do, but by what God can do. 
And thought it seems impossible, I believe he can help me to do WHATEVER it takes to get time alone with Him. When it comes down to it, I just desperately miss deep intimacy with my Saviour. There is nothing else in all the world that can satisfy like His nearness. And in all the busyness and newness of life in the recent months, I've become so distracted.
Yes, I need physical rest but I need spiritual refreshment all the more. 
Of course this makes sense since we are not just physical beings but spiritual beings we need not only to be physically cared for and fed but spiritually even more.
So I'm off to bed so that I can be purposeful about my day tomorrow. So that I can do the most important things, without distraction and with purpose, I pray, with the help of my loving, mighty Father. 
I hope that all makes sense. Sometimes it doesn't even make sense to me. I'm just glad I serve the patient God that I do.

shots from the past week or 2

Haddon hangin out with a gal pal after church. 
Well, actually she stalked him, but wouldn't you with a handsome guy like that?
These are of the boys "camping like cowboys" on our back porch in the middle of summer, with flannel blankets, around a "campfire." But hey, cowboys do it.
And so do we.


Anonymous said...

both my girls made it in the blog post! yay!! the pic of charlotte w/ shep is hilarious!!! i still like the idea of her being his bodyguard :) and noahs' idea of selling lip implants to match avery and haddon's lips :) such cute pics of them!! and i appreciate your post about intimacy w/ the Lord. I thought what Larry talked about on Sunday was lukewarm worship! if i can just start getting to bed earlier so i can get up earlier like you's hard to realize that physical rest will never bring me as much refreshemnt as spiritual nourishment! love reading..hope to hang out again soon!


Ana Lisa said...

Love the pics!! I will be praying!
Love Ya!!