Monday, June 6, 2011

Long day

I have to say that I LOVE having a camera on my phone. I have always enjoyed capturing as much of life as I can in pictures, but taking a big honkin' camera with you everywhere you go just isn't feasible all the time. Having a camera on my phone helps me to be able to capture the everyday stuff that I normally wouldn't...or helps when I forget my other camera or flat out don't want to lug it around, which seems to happen quite a bit these days.

Nate had a big day at the Shands Med Plaza today. We left at 6:45 this morning and pulled into the driveway at home at around 4:30 this afternoon. It was a long day. However, the little guy was an amazing trooper once again, never once complaining or whining about anything whatsoever.He had the 6 hour gastric emptying scan again today...a repeat test of the one he had when we were in Houston, except for the fact that he was on his motility meds this time around where he was off them for the test in Houston. We want to be able to compare the results to see how the meds are making a difference in his GI motility. Essentially, he had to lay completely still for 90 minutes while a camera took pictures of how food moved through his stomach and intestines...then come back for another short set of pictures at 4 and 6 hours post eating. We should get results within the next few days.After the gastric emptying test, we met with our GI again since his tube placement should be coming up soon (we meet with the surgeon Thursday). It was a straight-forward appt where we talked about how long the hospital stay will be (about a week) and what formula they want to put him on (they are going to contact Houston on this one). Seeing the docs and nurses in our clinic here is almost always a treat...I say that tongue in cheek, as I never thought I would utter such phrases. However, since we have been part of "the system" for over 3 years now, Nathan is pretty widely known around the med plaza. He sees multiple specialists, so he is there quite often. We've been there long enough that the nurses call out to him with waves and smiles as soon as they seen him in the full waiting room and everyone else pretty much knows us by name. He is definitely spoiled with stickers and toys and hugs each and every time we are there. It is always heart-warming to see your child being loved and doted on by others.

(His absolute favorite hiding place in the waiting room at the med plaza)

So the day went very well. Although, we did pick up some results from the labs he had run last week, and they were a bit off in different areas. If he weren't looking so good right now, I would be more concerned...but in all honesty, he is doing great (aside from not gaining weight in a few months). His white count was a tad low again and his IgG levels were lower than they have been in 2 years, so I am praying earnestly that he won't get sick before our vacation or his tube placement. At least it's not winter time with his levels being low like this. He also had another few immune levels that were off, and when talking to our immuno's nurse practitioner, she said that she had already planned to discuss his labs with his immunologist when she gets back from a conference tomorrow. This kid is always a mystery. I wish I was able to see more of what was truly going on inside his little body...what kind of war was being fought in there.

But today I am exceedingly thankful for a little guy who goes with the flow. Who doesn't mind being completely strapped down to a table with a large boxed camera inches away from him for an hour and a half. Who will let me know when something itches so I can scratch when he can't get his hand free during tests. Who cries in fear but willingly holds out an arm so that a needle can be inserted and blood gathered. Who tells strangers "hope you have a good day" after they finish whatever test they have to do on him. Who gives open-armed hugs to his favorite nurses and sly smiles when he asks for more than one sticker. Who never ever complains about the circumstances of his life, but tackles it all with a strong and courageous spirit, a sometimes nervous smile on his face, and an ipad in the crook of his arm. He is my Nafey boy, and God has blessed him with more strength for a little boy than I could have ever imagined.


Kyla on June 7, 2011 at 11:00 AM said...

It is pretty amazing how so many of these kids who have considerably more difficult lives than their peers can also shine so much brighter and share so much strength and joy with those around them. I see it with KayTar, too.

Wanda on June 7, 2011 at 7:50 PM said...

I love you!

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