Monday, May 2, 2016

Week 141: Awareness

Only two visits to Children's Hospital last week, and both of them planned, so we will count that as a success.  The first was a previously scheduled follow-up with a GI specialist to talk about Lemon's gastric emptying rate.  Honestly it was a pretty boring appointment, since there's not that much you can tell about gastric emptying from looking at someone sitting on a table in front of you.  So, most of the appointment was us sitting in the room while the doctor sat at the computer and ordered some tests.  It didn't seem like we really needed to be there at all--the whole thing could have been done over the phone, including discussion of the details of the imaging tests.  As you might imagine, tests that look at the stomach emptying require that you put something in the stomach first.  So, the doctor asked us if Lemon would eat two scrambled eggs or two slices of bread.  I said it depended on the time-frame.  If he meant "before Lemon starts first grade," then I could feel fairly confident about the bread, but the eggs seem unlikely.  Since what he was actually talking about was 10 minutes (!), we are looking into options that can be put in through the G-tube.  They really want solids, and want to be able to image it going down the esophagus, too, but you've got to take what you can get, and I know we aren't getting two scrambled eggs.

The other appointment was for Lemon's broken elbow.  The old cast finally came off, and they took some more x-rays without the cast which show that the bone is still broken but not displaced.  So they put on a new cast and will take that off and take more x-rays next week.  We're definitely hoping to avoid surgery to put in pins, but time will tell.  Coincidentally, it was super hero day at the hospital.  Although Lemon was not at all interested in interacting with the adults in poorly-fitting superhero costumes, he was very excited to receive his own cape, mask (which he refers to as "glasses"), and hat. 

Lime has really gotten the knack of crawling, and perhaps more importantly, he has figured out how to get from lying on his stomach back up to sitting.  This has made him a fundamentally happier human being.  It's hard to believe that in just another few months, he'll be walking!  His relationship with Lemon is continuing to grow.  The two of them crack each other up all day long.  Since Papa Bear is away for a few days, I've also (by necessity) lived out my dream of bathing them together, which is sort of cuteness overload.  Unfortunately it requires all 3 of my hands to keep them both upright in the tub, so I don't have any pictures yet, but I will try to find a way.

As some of you already know, May is cystic fibrosis awareness month.  Of course, in our house, every month is cystic fibrosis awareness month, but May is the month that we as a community raise awareness of the disease and our fight for a cure.  It is also Great Strides month, when we as a community raise money to support the life-saving research that is being spearheaded by the Cystic Fibrosis Foundation.  The work that the foundation is doing represents Lemon's best chance for a long, healthy life. 

After the year that we've had, I can say two things.  The first is that we owe everything that we have to the people in the CF community who raised money and did research before Lemon was born.  Without the therapies that were discovered through that work, Lemon would not be where he is today.  The second is that we need a cure.  The therapies that we have now are vastly better than nothing, but they are do not treat the root cause of the disease, and that is what we need. 

So, if you've enjoyed following along with us for the past year, please consider donating a few bucks to our Great Strides team.  I know there are about 150 of you who read this blog every week, and another 100 or so who read from time to time.  If each of you put in just $50, we'd raise over $10,000 for the research that will save Lemon's life.  Click here to go to our team's fundraising page.  Give whatever you can.  Thank you!

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