Sunday, October 20, 2013


Looks like a typical happy baby right?  Well this is so much more to us.  This picture represents a milestone for Brinkley.  If you look closely, you will notice that Brinkley's sleeper has a zipper.  Unlike most children this is the first time that my 13 month old has ever worn a zip up sleeper.  

Zippers are one of the many things I had never considered before having an extra special baby.  Up until late August Brinkley was dependent upon a feeding tube.  His button where you attach the tube is to the left of his belly button.  It would have been nearly impossible to feed him through the night in zip up pajamas.

The beauty of our journey is that we are learning to appreciate things that most families never have to think about.  We are learning to stop and notice the simple things, the small victories.  This zipper is one of those small victories.  It's one more thing to show us just how far Brinkley has come and how faithful God has been.  

Following Brinkley's last procedure in August he has no longer been dependent on oxygen or his feeding tube.  He's stronger and stronger everyday!  This weekend I've had another opportunity to see how far we've come.  The little guy now has three teeth.  They have come in one after another and just like any kid, he has been a grumpy mess.  He's had a low fever several times during this process, but this week it seemed to linger a little long for me.  

After two days of a low fever he started coughing as well.  Yesterday he was just miserable and very lethargic.  After seeing his temperature at 101.4 with Motrin and Tylenol, I decided I needed to take him to the ER.   The temp was even higher when we got there.  

When the resident came in to check on us I immediately recognized her from a previous hospital stay and she recognized us as well.  Her first statement was, "everyone in Children's Hospital loves this guy."  That was one of those good and bad things.  I hate that the little guy has been there enough that so many of them are VERY familiar with him.  On the other hand it is encouraging to know that they all care about him and want to make sure he gets the best possible care.  

There was a struggle to get lab work.  The attempts were not successful so we were told to come back this morning for a recheck.  Another resident that we met last night came to check on us as well as the attending physician.  After a through exam they agreed that he has a respiratory virus and sent us home.  What, no admission?!  Just another small victory!  A few months ago, a respiratory virus would have sent us to the PICU.  He doesn't even need extra oxygen support.  He gets stronger everyday and we couldn't be more proud of him!  

He still feels pretty crummy and has a nasty cough, so prayers are appreciated.  All in all he is ok and is keeping a smile on his face the whole time.  What a trooper!  We've got one tough and determined little guy on our hands.

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