Par’s yearly check-up with Dr. Kays in Gainesville, Florida was Tuesday, February 2nd—we left on Monday around 5:30 AM. The boys did VERY well-we only stopped about 3 times—and it was pushing 9 hours on the way there-so that wasn’t too bad.
We were welcomed “home” by our friends at the Homewood Suites—nothing like a warm welcome! They always take such good care of us—it was nice to see them again. We stayed in our “same room”—just on a different floor—which means they gave us a really nice upgrade from what I originally booked—so again, thanks!
We ate at Panera—and we were able to eat outside! That may not mean much—but it has been SO COLD in Birmingham lately that we haven’t been able to get any fresh air—so although it was “misting”—we enjoyed out dinner outside!
Everyone slept really well (answered prayer—it was going to be a long day!) and we were up and rolling around 7am.
All of our appointments were at UF/Shands--our first appointment was a chest x-ray. You may remember this contraption below. It looks pretty torturous—and believe me, Par’s crying would convince you—but it actually doesn’t hurt at all. Thankfully, Par is old enough not to have to use it—our big boy was able to stay in the proper position for the xray with just a little help from Rusty. Yay Par!
Next up was Par’s echocardiogram. I really didn’t know how this would go—but as you can see from the photos—they knew just what to suggest to have it go smoothly. Rusty and Par were able to enjoy a cartoon while she looked at his heart. He did really well—he never sits that still for that long for me!
And finally, our appointment with Dr. Kays. While waiting we were entertained by 2 Broadway stars in the waiting room. They currently star in Chitty Chitty Bang Bang—They entertained the waiting room with various showtunes—pretty cool—although we would rather have been able to meet Tim Tebow, but I digress.
We didn’t have to wait too long—which was a pleasant surprise! First Dr. Dickie—a resident interested in CDH came in to ask us some questions while we waited for Dr. Kays. She was very nice—and the prospect of having someone studying with Dr. Kays really makes us happy—there is only one of him—he really needs another capable surgeon with as much dedication and patience—we hope Dr. Dickie is that person!
Because of Par’s recent “fits” when we’ve gone to the pediatrician/flu shot—I really didn’t know how he would respond to Dr. Kays—but he was great—and actually, never stopped talking the entire time. In fact, Dr. Dickie had to take him out of the room to give Dr. Kays a chance to talk to us without Par’s constant interruptions—seriously—every 5 seconds—“Hey Dr. Kays. I have trains. I have Thomas, and Percy, and Diesel, etc” You could tell that Dr. Kays was tickled by him—but it was quite distracting.
So, Dr. Kays went over the findings from the xray, echo and physical examination. His xray looks great—no sign of scoliosis, you can clearly see his right diaphragm and you can clearly see his man-made left diaphragm (ie-the gor-tex patch). Both seem to be doing their job very well. The echo was a positive report as well. But, because of all that Par’s lungs/heart have been through—there is still residual issues that Dr. Kays will continue to watch—one being that the one side of Par’s heart is enlarged—most likely because of it compensating for his smaller lung. It isn’t anything for us to be concerned about—the valve pressures are all what they are supposed to be—so we’ll just watch it as Par grows—and it should “even out” in the following years.
Speaking of Par growing—Dr. Kays was very please that Par is now on the growth chart—even surprised I might add. He told us to keep up the good work and after next year’s check-up—we may only have to come back every other year.
But the highlight of our visit was the present that Par gave Dr. Kays. Of course, it isn’t mandatory that we take a gift each time—but I just couldn’t resist this time!
First, Dr. Kays opened a card that read:
“What do Dr. Kays and the University of Alabama have in common?
They both kick butt at the University of Florida!”
Then he opened the gift—a UA surgical scrub cap—with one side embroidered “Dr. David Kays” and the other “Par’s Surgeon, CDH Survivor ‘07”
He said he’d wear it—at least once. Hopefully this time doesn't count.
We decided to hop on over to the NICU III & II to say a quick hey to some of Par’s nurses-and let them meet Jack! We saw a few—we were able to get a picture with Karis and Elayne –Karis was part of the home stretch in getting Par home the last few days—and Elayne—I just can’t say enough about her! She is the Occupational Therapist who helped me to be successful in breastfeeding Par—I was so proud to show her how fat little Jack is from breastfeeding and of course, for Par to be able to say “hello” all by himself. It was a treat. Conveniently enough, were able to see some friends who live in Gainesville—they were actually at Shands during our visit-they were waiting on a friend having a LONG back surgery. It was nice to give them a hug and catch up—or catch up as much as you can in a hospital waiting area for 5 minutes. But it was nice to see them—and we hope to continue the tradition of saying “hello” with each visit to Gainesville!
On the way out of town we stopped by St. Augustine—our church while we were living in Gainesville—we like to light a candle and say a prayer as a family—we tried to explain to Par about praying for him in this church—I look forward to the day he actually understands.
And then…at 3pm….we hit the road. And would you believe it—we were home by 9pm and with only 1 stop. Amen.
Little did I realize how much traveling can mess up our loose schedule—it took us about 5 days to recover. Yikes….not looking forward to that again any time soon!
So…little Jack is not neglected by any means…but because he spits up all the time—giving him a bath really isn’t just a fun little treat so he smells like a fresh little baby—it is an essential element to each day so he doesn’t smell like vomit. Well…with a two year old running around---let’s just say the days get away and Rusty and I seem to be used to the smell. But…just to prove to you we are bathing this little monkey—here are some pictures. Have I mentioned how many times I change his clothes each day? I change his pajamas at least 2 times each night—all because of his spitting up! Yuck.
Jack is changing so much. He is cooing and looking around all the time—and he is trying to roll over. He rolls over on his side and scoots around with his little legs…and probably because there is a screaming two year old around all the time—he’s probably just trying to figure out how to get away. I don’t blame him.
We FINALLY had a real snow here in Birmingham this past weekend. Our weather men have been wrong a few times already this winter—so it was a nice surprise to actually have snow! This is Jack’s first and Par’s third—we had lots of fun watching it—and until Rusty came home, Par was happy to just walk around in the back yard while it fell! He would come inside complaining of wet socks—so I would change them and send him on out again. And then he’d come back again talking about his socks. He finally decided that the best way to fix the problem is to not have socks on to get wet—and off he went into the yard barefoot. Don’t worry---he came back in shortly to warm up—sometimes you just have to let them figure it out. And as you can see from the picture below…he was still figuring it out when Rusty got home.
Rusty and Par attempted to make a snowman at my request—so cliché—but I just had to have pictures of them working together—you know, father and son working hard. Well, they decided to just bury Jack in the snow—way more fun. So, if you ever wondered what you get when you mix Jack Frost and a Snowman….a Jack Man!
And since today is Valentine’s Day….a special tribute to my love—Rusty. He his my best friend—thank you for making me such a delicious Valentine Dinner!
We delivered a few Valentine Cards to some potential girlfriends in the neighborhood—check out our classy card below!
