{"id":273,"date":"2026-08-13T04:30:08","date_gmt":"2026-08-13T04:30:08","guid":{"rendered":"https:\/\/cota.org\/cotaformylinscrankypanky\/?p=273"},"modified":"2026-08-13T04:30:09","modified_gmt":"2026-08-13T04:30:09","slug":"a-full-week-back","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaformylinscrankypanky\/2026\/08\/13\/a-full-week-back\/","title":{"rendered":"A full week back!"},"content":{"rendered":"\n

I can\u2019t believe we\u2019ve been home from Ohio for a full week today. It seems both longer and shorter at the same time.<\/p>\n\n\n\n

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\u2019s 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\u2019ve 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.
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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\u2019s 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\u2019s 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.
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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\u2019s not just in what they\u2019re able to do. It\u2019s the energy they carry. it\u2019s what they\u2019re able to eat. It\u2019s the color in their skin. It\u2019s the level of their humor. It\u2019s the hours that they\u2019re awake and how much they interact with us now. Literally life-changing.<\/p>\n\n\n\n

Diabetes has been more than we thought it would be. Obviously, this wouldn\u2019t have changed our minds either way (and for us, Mylin was already prediabetic due to how dead the pancreas was ). It\u2019s still absolutely worth what we\u2019ve been given by the TPIAT. A lot of people had just told us was, \u201cDiabetes is so manageable now with modern technology. It\u2019s barely even a thing.\u201d That\u2019s definitely not the whole truth. Now that we\u2019re part of the diabetic community, we know this is something that is upsetting to people with diabetes. When what they\u2019re going through is downplayed. In reality, diabetes takes up so much of your mental space and physical time. It\u2019s a new constant thought on your mind. It\u2019s counting carbs for every bite Mylin eats, and even worse, trying to guess the carbs in something you didn\u2019t 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\u2019s alarms going off in the middle of the night because your kid has blood sugar that\u2019s either too high and still rising or crashing much too quickly. Both of those things that have given new fears of things you hadn\u2019t even thought about before like ketones and diabetic seizures. It\u2019s 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\u2019t give insulin because it doesn\u2019t know how much to give. It\u2019s 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\u2019s sleepless nights like we have a newborn again. It\u2019s the nervousness of having your child away from you, so you can\u2019t help them with something that\u2019s brand new. It\u2019s driving your teenager EXTRA crazy because you\u2019re worried in a whole new way (and you just watched your child go through an intense surgery a few weeks ago), constantly checking in. \u201cWhat 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.\u201d And the poor kid is starting to feel like an independent teenager for the first time in a really long time, and so you\u2019re driving them bonkers! It\u2019s 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\u2019s easier for them to carb count and enter it into their pump, ensuring they stay in the healthy range. It\u2019s 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.
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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\u2019t 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\u2019t 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!<\/p>\n\n\n\n

Thank you to each of you who continue to reach out and show all of us love! I\u2019ve 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\u2019s any changes.<\/p>\n\n\n\n

I hope this helps other people that were in the same situation as us. I can\u2019t 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.
<\/p>\n\n\n\n

I can\u2019t 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)!!!\ud83d\udc99<\/p>\n\n\n\n


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I can\u2019t believe we\u2019ve 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. 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