what a week.

michael jackson died.

kendall pulled her tube out with the balloon intact and we had to actually go to an ER to get it put back in.

kaylen fell off her little push-car, hurt her head, gave us a little scare, and the proceeded to drop a deuce on the carpet in the basement.

and oh yeah, we’re back to indepth cystic fibrosis testing for kendall.

i don’t even know if i can muster up the strength to rehash today’s appointment right now. I go back and forth between numbness about it, and then wanting to just pretend like it didn’t get brought up. The two options we were given today were like bad and worse, and out of those, CF is actually the better one. so the second round of testing began today.

Basically, her GI doctor and her pulmonologist both agree that she is malabsorbing/dumping her food. The main cause of malabsorption is pancreatic insufficiency. The two main causes of PI in kids is cystic fibrosis and an even harder to swallow diagnosis, Shwachman Diamond syndrome.

Now – there is still a chance that is NOT actually having pancreatic insufficiency. Right now no one knows what else could be causing her to be so symptomatic of PI, but there’s a chance its not TRUE pancreas issues. There is also the fact that her newborn screen did come back the second time as normal, the fact that Ben passed an initial carrier screen, and that she did have a very low initial sweat test number all very much in her favor. While i can’t quite wrap my mind around what exactly i feel about all this, I know that God continues to hold us through it all.

I don’t know what to feel or think right now. I don’t know if i feel anxious, or if i am just taking this new wait in stride with the other waits we seem to be perpetually in with kendall. I guess i feel like, right now, it’s probably not worth getting worked up over, since there are still a good amount of “outs”, but its good to have  our way eased into this, that it won’t be such a shock if we do end up going farther down this path.

So ok enough of that.

Today was the culmination of a crazy week. The kind of culmination that makes you realize when you go to stand how very tired your legs are, and you realize that they have the done the hard work of keeping you upright in spite of every instinct you might have to just let them crumple of the weight under which you find yourself operating on a day to day basis. Maybe tomorrow I can wake up and forget about today, for a few days at least.  Just let the thoughts toss around in my sub-conscious for a few days while the conscious part of me gets to pretend like i won’t have to deal with a possible life-threatening, terminal diagnosis for my baby. And maybe, in pretending, it will be true.

But overall, in the big picture, the real life scheme of things – we are blessed.

for the moment, everyone is healthy, and mostly happy. We have birthdays coming up to celebrate, family coming in to town to help celebrate, and beautiful weather to enjoy it all in. Really nothing to complain about.  so we won’t ! 🙂

next post – the grisly details about kendall yanking her tube out last friday, better than an IV injection of caffeine for getting my heart racing!!! THAT was fun times!!

speaking of caffeine….i am soooo tired. i should go to bed. i can’t wait to re-read this rambly post in the morning and laugh at how little sense it all makes!

t

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Comments

  1. I wonder why I was not told about the duece on the basement floor? Sometimes ignorance is bliss.

  2. Hey Ben and Terra,

    Grandmother told me you had a blog, so I looked it up. You are an inspiration and I hope you get some well deserved rest. I’m thinking about you all. God Bless, Julie, John, Hannah and Emily