I can’t believe we’ve been home from Ohio for a full week today. It seems both longer and shorter at the same time.

Mylin continues to love being home and back to school. I truly think they have been better since we got here. I said this before, but it still rings true. Since we came home and jumped right back into school life, and when we left we had just started summer vacation, our time in Ohio seems so separate from our life here. But we brought back a totally different kid. A healthier kid!! Every day, I continue to be surprised when I come home from work, after Mylin’s been at school all day, and they are still awake! They are awake with more energy than they have had in literal years! They have been able to eat more normally even with diabetes, than they have in years as well. They have continued to refuse the school golf cart escort to get them to any of their classes. One of the twins hurt her foot during cheer practice this week. She is on crutches, and had to use the golf cart escort. When the driver pulled up, he said I’ve been wondering when you would call me. You are a junior right. She had to tell him that she was the sister to the kiddo he had been told about previously that had major surgery lol.

Last week school was all half days. This week each day is a full day. Mylin has started to have a bit more pain, and today had nausea for the first time in several weeks. We think that’s likely due to how much they have been on their feet. They also are starting to have a small growth on the side of their stoma (tummy tube area) which is also causing a little bleeding. The tube is supposed to come out a week from yesterday. We are more than looking forward to that! The tube has been Mylin’s main compliant for at least 3 weeks. We have not used it since we were on the 11th floor in the hospital. By next week, the stomach and intestines that were all Frankensteined together we have had enough time to heal in place, so that tube can finally be safely taken out.

Our minds continue to be blown at how well Mylin is doing. I prayed again and again that recovery would be even better than the doctors or I, or any of us for that matter, could imagine. I said I definitely still believe in miracles. I am seeing that in real time and it is amazing! Mylin has life in them again. It’s not just in what they’re able to do. It’s the energy they carry. it’s what they’re able to eat. It’s the color in their skin. It’s the level of their humor. It’s the hours that they’re awake and how much they interact with us now. Literally life-changing.

Diabetes has been more than we thought it would be. Obviously, this wouldn’t have changed our minds either way (and for us, Mylin was already prediabetic due to how dead the pancreas was ). It’s still absolutely worth what we’ve been given by the TPIAT. A lot of people had just told us was, “Diabetes is so manageable now with modern technology. It’s barely even a thing.” That’s definitely not the whole truth. Now that we’re part of the diabetic community, we know this is something that is upsetting to people with diabetes. When what they’re going through is downplayed. In reality, diabetes takes up so much of your mental space and physical time. It’s a new constant thought on your mind. It’s counting carbs for every bite Mylin eats, and even worse, trying to guess the carbs in something you didn’t make. Hoping you give just enough insulin without giving too much and without going too little to ensure that your kids stays safe and healthy. It’s alarms going off in the middle of the night because your kid has blood sugar that’s either too high and still rising or crashing much too quickly. Both of those things that have given new fears of things you hadn’t even thought about before like ketones and diabetic seizures. It’s another alarm because the CGM (constant glucose monitor) has gone off-line for more than 30 minutes, sometimes several times during the night. This means that the insulin pump can’t give insulin because it doesn’t know how much to give. It’s replacing an insulin pump four times in a row, because it was an entire bad batch. Now your child is bleeding in four different places with bruises all over. It’s sleepless nights like we have a newborn again. It’s the nervousness of having your child away from you, so you can’t help them with something that’s brand new. It’s driving your teenager EXTRA crazy because you’re worried in a whole new way (and you just watched your child go through an intense surgery a few weeks ago), constantly checking in. “What did you eat? your blood sugar is so high. Hey, did you catch that? Your blood sugar is crashing. Do you have your skittles on hand so you can do your 15 every 15.” And the poor kid is starting to feel like an independent teenager for the first time in a really long time, and so you’re driving them bonkers! It’s buying new lunch and snack boxes with special labels so you can label each individual square and how many carbs it has. That way when your child is outside of your care, it’s easier for them to carb count and enter it into their pump, ensuring they stay in the healthy range. It’s the hot nervous feeling you feel when you see blood sugar levels are plummeting, and your kid is still in class and you hope that they are dealing with it well on their own. I could go on and on, but I think you get it. Diabetes is definitely NOT easy.

Again, even with all of that, we would do it all again in a heartbeat. We knew the surgery had the possibility of being life-changing. We just didn’t know how quickly we could possibly see the results. We had a very, VERY sick kid. For a very long time. One that before this, we were offered little to no hope for a future even as good as the one we see right now. Just 6 weeks post surgery! We are starting to see Mylin truly come back. I really can’t say that enough. The incision is healing awesomely. They have a slightly larger scar where it started to have an infection two weeks ago, but other than that scar looks so much better than I thought it would! My has been even rocking crop tops and showing it off!

Thank you to each of you who continue to reach out and show all of us love! I’ve had so many people ask how school has been for Mylin since that first day back. Thank you to all of you for following along and encouraging us through all of this. I still plan to update when we have appointments in Ohio and anytime there’s any changes.

I hope this helps other people that were in the same situation as us. I can’t tell you the hours I spent on the Internet looking for any type of hope that we could give Mylin a better life than what they were living. For over two years and innumerable amount of hours, I searched and searched for any answers at all. I am so beyond thankful for my pediatric pancreatitis support group and their help getting us to this point.

I can’t wait to share with you all of the amazing things that I know My is going to do! Just look at this amazing child (ok ok teen)!!!💙