Mylin had their follow up appointment with their Ohio G.I. doctor yesterday at 10:15 AM. I had forgotten to bring the diabetes bag from the car, and ran like hell to grab it before our appointment. We had been running later than I like to, because I spent the morning cleaning the room at the Ronald McDonald house and putting our suitcases in the car. As I ran back into the hospital, I saw our G.I. doctor and he asked if everything was OK. When I told them I was just making sure I was gonna be on time for him, he said “I’m grabbing a coffee. I’ll be right Back. You’re all good.” I’m a on-time is late kind of girl. During the appointment he kept commenting on how great Mylin is doing. Mylin was complaining about the pain in the G-tube and the increase in discharge from it. He assured us that all of that was normal based on the increase of activity, and told us that that’s one of the last pains kids tend to complain about. Since it has to be in there for 6 to 8 weeks, by then a lot of the other pains have left and that thing is still driving them crazy. We did set a date to get the GJ tube out. It’ll come out on August 18! Our doctor here in San Diego will do it. Dr. Freeman (our Ohio GI doctor) said he couldn’t get over the fact that Mylin was doing so well and especially with nausea. He said nausea was the absolute most thing he was worried about for My. I can remember during our consultations, they had told us they could help Mylin with their pain, but the nausea they weren’t sure. Since the pancreas had affected the stomach so badly, they weren’t sure how much of it would go away after the pancreas was gone. Dr. Freeman, especially, drove home the possibility of that during consultations. My hasn’t had any nausea in days!! I can’t even tell you how many years it’s been since that was the case. Like I had mentioned in several of our first posts, I had been taking Mylin to the hospital, specialist, and even the ER since about first grade off and on for severe stomach, pain and nausea. The nausea had gotten worse way before the large pancreas attack two years ago. I am so thankful that they are free of that! Mylin was complaining about the pain around the G-tube and that it was radiating around their back, so we wanted to make sure it was for sure good. He didn’t seem worried about that. He said everything looks normal and it’s healing well. He thinks it’ll go with the tube when it’s gone. It’s also likely due to our increased activity. I told him that as I was about to go to sleep the night before I couldn’t help, but to think about the fact that the last few days had been the most I have spent with Mylin awake (they barely had energy and a lot of times their body would just shut down to where they would sleep with the majority of the day ) in two years. It was blowing my mind. He asked us if Christie had talked to us about going home, and I said she had. He asked us when she was thinking… if she was thinking at the end of the week. I told him we are leaving this appointment and going directly to the airport. He said there went his joke. He was going to try to tease us that we weren’t gonna get to go home quite yet, but told us we were free to do. Free to go HOME!!!

The trip home was exhausting. Our first flight was so delayed that we were likely going to miss our layover in Chicago. Our suitcases ended up on that flight and did not make it to San Diego, so I’m guessing we would have missed our flight. Our next flight changed gates twice and then was delayed by an hour and a half. When we arrived in Denver, that flight was delayed as well. We got home pretty late last night. However, today was the first day of school. So we stayed up getting lunches ready, and helping Mylin get everything prepared for the morning. I told them that they didn’t have to go since we had had such a long day. They insisted! They absolutely wanted to go to school! They were so beyond excited to be back for the first day of school.

(pictured Daniel suitcase that he left behind because we thought he’d be coming back to take over and mine would be here longer, one large suitcase of nothing but medical supplies and medication, one backpack, full of only diabetes, care items, one suitcase of all of Mylin’s gifts and goods they’ve accumulated since being here, and then a backpack for me and a backpack from Mylin)

The night was hard. We were already exhausted and of course, the CGM would decide to disconnect. We had alarms going off several times during the night. It would wake us up. We’d have to go in check on Mylin, sometimes do a finger prick, mess with the CGM. Eventually, in the middle of the night, everything came back online and we got a little bit of sleep, but man did that 6 AM alarm come early this morning!

The best news? Mylin did make their first day of school! You would’ve never known that kid was traveling for 12 hours yesterday, or that they were woken up several times during the night for diabetes issues. They were up and at’em. They went to school with their CGM on their arm, their insulin pump on their thigh, and their GJ tube hanging out on display, just totally rocking it!

Daniel and I had contacted the school already to let them know about some of the accommodations Mylin would need. Since Mylin isn’t allowed to lift much still with the abdomen healing, they need a rolling backpack. They also carried a small lightweight backpack with all of their diabetes gear in it. Mylin‘s school campus is really big! I wanna say there was a day when I was standing at the front gate and Mylin was out of class at the back and it said Mylin was like .5 miles away. Due to this, we had requested that Mylin have access to golf cart chaperones to classes. We were nervous about them over exerting themself.

Well, it turns out Mylin refused to use that golf cart chaperone at all! They walked to every single one of their classes on their own. They took care of blood sugar lows on their own. They only complained of a little back pain from being up and around so much. I worked until 7:30 PM, and I thought for sure I would be coming home to Mylin asleep in their bed. Instead, I came home to a Mylin that was happy and wide awake and STILL had energy! I mean, I can’t tell you the last time I saw this kid have this kind of energy!! (They are still awake as I am typing this at 9:40pm playing with their dog!!) My mind is utterly blown! Daniel and I are so happy for Mylin! It was crazy to watch all three of our kids walk into high school together today.

it’s so weird being back home. Especially coming back the night before the first day of school. It’s like we’ve been thrust back into our normal life. Almost like the surgery and Ohio hospital life is completely separate from what’s happening here. Like this summer was a strange time warp. Now we’re back… back into traffic, school, figuring out meals, can friends stay the night, who’s taking who to practice, and being so busy you barely have a minute to blink. Then when you do, blink, it’s another day. Except we have a healthier more ALIVE kid than we left with. What a wild and wonderful thing.

We’re all home together again! ❤️