Monday, May 5, 2008

Two weeks past surgery

Here are a few random pictures from the last two weeks: I call them "Quinn the runner", "Quinn the driver", and "Quinn the sleepy head".

We are all doing well. Quinn is doing great with the tube during the day--it pokes out from his shirt a little bit and he has adapted how he gets up on and down off of chairs. He is running all around like he is prone to do and is in great spirits.

At night as we get ready to connect his tube to longer tubing and a pump for the formula we find that Quinn is amazingly patient. We tell him what we are doing and he tells us what we are doing too :) We have to clamp parts of the tubes during this process and Quinn pipes in, "Clamp it!" We have a new evening routine and tonight it took us about a half hour to clean, connect, prepare, and pump so that is a huge change for all of us. Quinn is sleeping pretty well as are his parents. I usually check on him once or twice during the night just to make sure he is doing OK. We've had a few quirky moments of things going wrong and most of them we had been warned about--formula leaking in the bed, tubing wrapped around Quinn, or spilling water.

The new normal is developing and we are getting back into the groove with this new addition.

This week we have two appointments at Doernbechers--one with the CF clinic Tuesday morning and one with the surgeon on Thursday morning. Now that the surgery is done we enter the process of checking weight gain, growth, and if there are any changes that need to be made to the nightly feeding (Quinn gets about 600 calories over the course of 10 hours).

While this certainly isn't our first choice of things for Quinn to deal with, we can still see the potential benefits for Quinn in terms of weight gain and overall health. Quinn continues to be very healthy and we are so thankful for that fact! The weight gain contributes to his overall health--and I was thinking today about the amazing options available to us today that did not exist 40 years ago, 30 years ago, 20 years ago, or even 10 years ago. A feeding tube is really an amazing option! Our prayer is that the feeding tube help meets needs for right now and that ultimately, at some point, Quinn will be able to maintain his caloric needs on his own.

And Quinn, what an amazing kid. Thanks for caring about him and us!

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