Get Me Out of Here

The first week of summer came and went in a flash. As always Wyatt and my days are filled with appointments. The first big appointment of the summer was his cardiac MRI. This is the test that lasts about an hour, sometimes longer if he moves too much. I usually sit there on pins and needles hoping that he can get through the whole study, and this time wasn't any different. I gave him his anxiety medicine like usual but it didn't work quite as well this time. About 35 minutes into the study he was ready to get out. I could hear him say some colorful words and start moving around. Then he yells GET ME OUT OF HERE, I CAN'T BE IN HERE ANYMORE. I waved down the tech and we decided to get to the last part of the test that shows if there is scar tissue in his heart muscle. We explained to Wyatt it would only be a few more minutes after he gets the contrast....the contrast made him nauseated. This has NEVER happened. before. He yelled again GET ME OUT OF HERE...I'm going to throw up. The tech and I ran to him and luckily he only spit up and they were able to get him back in for the last few minutes. I sat counting the minutes hoping he could get through it then I hear...GET ME OUT OF HERE again but thank God he was pretty much finished.. They got the images they needed. New scar was seen but after a closer look it was there last year too. So unfortunately it wasn't what we wanted to hear but thankfully, we go to Columbus in July and see if we have any changes in treatment but for right now we will be happy it was not much worse than before.

As I write this we are in Gainesville for his trial visit. This is our first trip when he is totally non ambulatory. To say I was nervous beforehand is an understatement. I thought about this day since he said he wasn't going to walk anymore. As we rushed around the house, I fussed...we have to "GET OUT OF HERE. We are running late." I hadn't thought about having 2 wheelchairs in the van, getting the handicap tag, and then the increase in people at the airport. Anyways...WE DID IT!

We made it through TSA. Wyatt said it wasn't that bad getting patted down in his chair. I was aggravated because the TSA guy asked if he could stand up and Wyatt said "NO". The guy then asked, "you can't stand at all?" WHAT THE HELL!?!?!? I thought but I didn't say anything and they were really nice after that. Sorry just had to vent about that a little. We made it on the plane and Wrigley was his awesome self and walked to his spot without us holding his leash. So we will claim success for today!

I can't post this update without mentioning my baby. Wynston went and spread his wings in Arkansas at Camp Ozark for 2 weeks. He got on a bus with a bunch of strangers for a 9 hour bus ride to camp. He had to hand over his phone when he got there and can only communicate with us by mail...I have yet to receive a letter. I have seen pictures from his time there and he is having an AMAZING time. I just know when Patrick and I get there on Saturday he is going to say...DON'T TAKE ME FROM HERE. He is getting time not in his brother's shadow. I can't wait to hear all about it and spend some special time with him driving home.

Sorry for not having a deep heart wrenching post this time because right now I think we are just coasting through life. It's been hard for Patrick and myself to process everything that has happened in the past few months. It may be a little while before I get to post again because I'm taking some family time and GET OUT OF TOWN for a bit. We are going to the Grand Canyon and then to the PPMD Connect Conference for some recharging.