A great early Christmas gift - great check-up!

We left town on Tuesday afternoon - right after Carson was home from school. We likely would have taken him out a little early if it hadn't been the last day before vacation (which means holiday party and we are NOT going to be the parents who deprive their kid from the day each kid looks forward to at school).

He did bring home his train - it is so adorable! Pics to come!

We got on the road - had a brief stop in Fergus Falls for a diaper change - and our next stop was St. Cloud. We met Nana Jane at a McDonalds. After a quick visit and goodbyes to Grace (although she was so excited to see Nana that she waved us off pretty quickly) we were on our way again. As we buckled Grace into the familiar mini van, we could tell she remembered it. She was so giddy and silly about it. She was also going to watch hockey as Papa Ron was coaching a game that night. She was very excited about that too. Reports are she had a ball and loved to see people who watched her grow the first 17 months of her life.

Next stop was a Target along the way for a couple of things and then on to Ronald McDonald House. We were in a different 'house' that we've never been in before. It's one of the newer areas and it was beautiful. Not that parts of the house aren't great, it was just very different. It was essentially a one bedroom apartment. The couch in the living room pulled out into a bed. There was a three season porch off of the living room. It was perfect for our night. 'The Twelve Days of Christmas' is a big deal at the house. Each day for twelve days a family staying there gets a bag of goodies. On Christmas Eve there are many, many presents for the family. Well, there were three '12 Days' bags waiting in our room since the room had been vacant for a couple of days. Carson had a great time checking out the treats.

After a bit of exploring around the house, it was way past our bedtimes.

We were at Children's Imaging on Wednesday morning by 6:55 a.m. After some paperwork, Carson had to drink a bunch of oral contrast. Thankfully they put it in 7 -up, so that helps get it down. Pop for breakfast, but oh well.

I should explain why Carson needs the CT's. Carson has EBV, which he developed post-transplant. In immune-suppressed kids, EBV can turn into PTLD. We've been watching his EBV levels for nearly 8 years now. If developed, PTLD is often in the lymph nodes, so the CT scans watch his major lymph nodes and can detect even the slightest changes. Carson has a nodule on his lung that we've been watching for four years now too, so that scans keep an eye on that too.

Very thankfully, Carson's immune-suppression medication (Prograf) has been tapered the last few years. EBV thrives on high Prograf levels in a system. So, the lower the Prograf, the lower the EBV levels. That makes everyone happy. For the typical person, you are EBV positive or negative (and 95% of the population is positive even if you don't realize you've had it). With Carson, we know he is positive, so we measure the amount of the virus in his blood stream each time he has labs.

Now, back to the CT's. Once the contrast is in, the clock starts to wait one hour before we can do the scans. The tech came out and put some emla on (numbing cream) for the IV site. All the while Carson is playing some Nintendo game. He decided that I should play too. Yeah...he smoked me.

Soon it was time to head back. This place is familiar, so that helps.

We've had this tech at least three other times (I think more, but it's a blur...). She is awesome. IV is started and he is doing great. We practice holding our breath for some of the scans. All is set. Scans of his head and neck are fine. Then we're starting on his chest and pelvis. Carson announces he feels like he is going to throw up. Sure enough, up comes a bit of the contrast/7-up concoction. He quickly finishes the cans and we get him settled down and reassure him that he's not sick that it is the medicine.

He did such a great job and gets to pick out a prize. We toured through the adorable bathrooms too - he gets a kick out of them (pics to come of those too!).

He is starving so up to the cafeteria we go. Thankfully, it is hard to mess up breakfast, so we grab all sorts of food. We're all hungry. Carson easily ate twice as much as I did.

We gave him the option of going to back to RMH or to Macy's Santaland. He is wiped out, so he opts for RMH. In many ways, we're not surprised. We cozy on the couch and watch cartoons. While there, another '12 Days' bag arrives - a Build-A-Bear! Carson is excited about his new buddy.

We grab lunch and it's back to the medical complex for the appointment with Dr. Sharp. Dr. Sharp was going to retire this month after a 50 year medical career. He decided to hold on one more year. This man is brilliant. He is one of the doctors we owe Carson's life to.

After a visit with his GI fellow (who checked out Carson's morning scans and reported that all looked great - no changes and the lung nodule is the exact same size again!) we see Dr. Sharp. We're once again dropping Carson's Prograf. Now he'll be on 0.5 mg in the morning and 0.5 mg in the evening. Post-transplant he was on 0.5 mg three times a day. Keep in mind that he was a 12 pound baby back then. Now he's 60+ pounds. There is certainly a lot less Prograf in his system now! :) YEAH!

Next year we'll likely have a liver biopsy for Carson (been a few years since we've done one) and then taper again. If Carson's system can tolerate it, it is very likely next year we'd drop to 0.5 mg once/day and then two years from now drop to NOTHING!!!!! Frequent lab draws will tell us how Carson's body does with all of this so we can stay on top of anything brewing. We have had the okay to do labs every 8 weeks, but with a change like this, we'll move back to every 4 weeks for a few months.

Dr. Sharp didn't even examine him. :-) For liver patients the proof is more in scans and lab results, so that was not a big surprise. We got some quick pics with Dr. Sharp and we were on our way.

We were thrilled!!!!! We tried to explain to Carson what a big deal this was. We know we're more excited about it than he is. Even if he stays at where he is right now, his immune system is already boosted and and in a better place. Yeah, yeah, yeah!

We were already checked out of RMH. The snow was starting. We were on our way back home. We met Nana Jane again at McDonalds. We were thrilled to see Miss Grace. We think she grew in the nearly 24 hours we'd been apart. She had lots of stories to tell. Grace's staying with Nana and Papa was a 'Win-Win-Win'. Grace would have had a tough time with the early morning, the appointments, etc. Most likely only one of us would have taken Carson and that would have been harder for him. So, it helped Grace out. Of course, it took quite a bit of arm twisting to convince Nana and Papa for an overnight visitor (wink!) so it was a win for them too. And it helped us out to focus on Carson's appointments and to be there for him, so a win for us too. I have a feeling this won't be the last time we arrange this, as it worked out so well! :-) (That is if we can convince Nana and Papa again!!!).

Nana packed supper for us - so 'Nana'! We giggled as we saw the cute holiday plates and napkins as we trekked and ate through the miles. Again, so 'Nana'! We love you!!!

We were trying to beat the weather - it was snowing/raining in Fargo/Moorhead and we certainly wanted to be home for Christmas. We didn't have any stops from St. Cloud to Moorhead. We had two tired and cranky kids, but oh well. The last few miles weren't very nice, but considering a road trip in December, we were thankful to have had good roads for most of it.