We flew to Columbus for our first follow up at Nationwide Children’s Hospital on Tuesday of this week. There are no direct flights, so flying out here is always a full day event. By the time we landed in Columbus, grabbed a late dinner and got to the Ronald McDonald house it was around 1 AM.

Before coming here, Mylin had been doing much better. Still complaining about some stomach pain, as well as incision site pain. However, much better than they had been the week or two before.

We had three days of appointments.

The first morning we saw our pain psychologist and social worker. They said My continues to be great, and they encourage them to live as normal of a life as possible. We then had a couple hour break, so we walked around the Franklin Park Conservatory. We’re super thankful that the Ronald McDonald house was able to provide those tickets for us. It was nice seeing it all decorated for a fall and was perfect weather to walk around. Later that afternoon, we had an appointment with everyone on Mylin‘s diabetes team. That involves about five doctors and staff members. Definitely a roomful. They all gushed over how amazing we have been doing with Mylin’s blood sugars. Daniel and I are both very into me measuring things out and trying to get as close to exact carbs as possible, which is translating into Mylin being very similar. We have also learned a lot about Mylin‘s body. We know there are certain foods they just can’t have at dinner time or evening times or none of us will sleep. Things like sushi, froyo, or frozen mango, need to be lunch items or no one sleeps. It is slow to respond to insulin as well as slow to respond to carbs. When we’re correcting low blood sugars, we’ve learned to do half the carbs recommended, or on the other end, Mylin will go very high and for quite awhile. When it came to some of the questions we’ve had about the quirky blood sugars we’ve had recently, the diabetes team said they were as confused as us. They came in with printouts of Mylin‘s blood sugars since we left, said Mylin‘s blood sugars really don’t seem to have a pattern nor a rhyme nor reason. Usually, they can pick up patterns on people’s blood sugar, and be able to give feedback, but of course for Mylin that’s not the case lol. We had a night just a week ago that before bed their blood sugar crashed for no known reason. We brought it up, and hours later it’s skyrocketed for no reason. They had not eaten since five or 6 PM and he we were at 1 AM with skyrocketing blood sugars. Those blood sugar stayed up through the night even with two boluses. Daniel continues to get praises about being the most on top of it diabetes Dad they have ever had! It was good to hear how well they felt we were managing things.

The second morning our alarm went off at 6 AM which would be 3 AM San Diego time 😴. We were both tired to say the very least. That morning we had to be checked in at the hospital at 6:45 AM for our mixed meal test in the infusion clinic. We had to bring Mylin in fasted, not having anything to drink or eat since before midnight the night before. Also, at least an hour before the test, we were to turn Mylin‘s insulin pump completely off. I’d be lying if I didn’t say I had anxiety about this test. Because we have been so watchful about Mylin’s blood sugars, I was nervous about how high the test would take them. When we arrived after check-in, they took us to the infusion room. There they first do a Big round of bloodwork and labs. Once those are all drawn, Mylin drinks a Boost meal replacement shake with no insulin on board. Their blood is then drawn at the 15 minute mark followed by every 30 minutes for two hours straight. This is the best way to test how those transplanted islets are working currently. We don’t have those results back yet, as they take the longest. However, I can tell you that Mylin‘s blood sugar did great! Although it did go high, it’s gone higher when they have bolused properly and already had insulin on board! So that was a relief. I did feel bad for Mylin. They have difficult veins and almost always end up needing either an ultrasound or specialist to come in and get their IV in place. For the first round of bloodwork one IV was fine and then the vein collapsed. After that, it took four more IV placements before they finally got one they were able to draw blood from. That means Mylin had an IV poked in their arm five times yesterday. Their hands were definitely sore. The great news is Almost every single result was leaps and bounds better than it was pre-surgery!

Today was our last day of appointments. We were going to meet with four different sets of people. We first met with Christie, our home girl. We love that girl. We had compiled a list of Questions we had for her. Questions like do we have any exercise restrictions, can Mylin‘s 25 pound Frenchie lay on their stomach yet, can Mylin go deep sea fishing, can Mylin ride roller coasters, do we think Mylin will be healthy enough that Germany for college is still an option for them, when can Mylin start drinking bubbly drinks, and lastly, how often will we be returning? the great news is no restrictions! They just don’t want the dog jumping on Mylin’s stomach, but Mylin can do pretty much everything right now. Mylin was super pumped about being able to drink bubbly drinks again. She told Mylin that they should absolutely be good to go wherever they wanted for college. also, Mylin is doing so well that it’s confirmed. We will only need to come back once every three months for the next year before we switched to every six months as long as Mylin is still doing this well! Coming back 4 times a year versus 12 times a year is such a big difference! that will be so much easier on us. We are beyond thankful for every bit of that great news. She felt Mylin’s stomach and said she would talk to Dr. Freeman our G.I. Doctor Who would be coming in to see us next about possibly starting a different bowel regimen. since that’s what took us to the ER two weeks ago, and what is still causing some pain. she also said that the incision looks perfect. She said that what happens is at first it’s completely numb so you don’t feel anything and then as things start to reconnect and heal you’ll feel the pain, so that’s why Mylin has new incision pain
. She told us she is just beyond happy with how well Mylin is doing. She also said that when they did their first meeting after we left, she had Mylin’s back to school picture up on their whiteboard for everyone to see as they were walking in for the meeting, and it made everyone so happy! She was tearing up as we were talking about how well Mylin is doing. We gave her a big hug before she walked out of the room. Our G.I. doctor came in next. He talked to us about the medication he would be ordering for the new bowel regimen. He came back in to say our insurance denied it, but they’re alternative is absolutely not something he wants Mylin to have so he would have to go to bat for us and let us know how it all goes. Other than that, he said Mylin is doing incredible. Our next appointment was supposed to be nutrition, but Mylin is doing so great with everything. (They gained 6lbs and have been eatinh food for every meal!! No mor relying on weight gain shakes on the day to day.) He said they didn’t feel like we needed to wait around for that. We were also going to meet with the girl that runs their social media (they want to share Mylin’s story), but she is just going to have a phone conversation with us. Which meant we got to leave early!

We left the appointment, went back, packed up, cleaned up, and checked out of the Ronald McDonald House. We’re thankful to get to fly home before the weekend. We had lunch at Mylin’s favorite Ramen place, and Mylin is currently shopping at their favorite bookstore.

One of the biggest things for me about being here, is I can fully compare it to how things were when we left. At home it’s like things happen little by little and you don’t get the full picture. Even then the days all blur together between the many good and the hanful of bad. Being back here knowing that last time we were here, I was still pushing Mylin around in a wheelchair, and even then how much more awake they were and how much more energy they had compared to both times we came for our consultations. Then being here now. Mylin is asking me after we’ve had a day of appointments and already walked around the Franklin Park Conservatory, if I wanna go to the mall! After our appointments, yesterday, we drove an hour away to a pumpkin patch, and then another 20 minutes to the world‘s largest loaf of bread. Then we headed back to Columbus got some food and went to the Columbus zoo lantern festival. We were there for three hours until 11 PM. According to my watch, we walked about 6 miles yesterday total and Mylin had enough energy for it all! They did take a nap before the conservatory and while I drove in the car, but they were keeping up. We stopped one time because exercise can make blood sugars drop low. So walking around the zoo cause their blood sugars to fall. Mylin took their carbs. We sat for about 20 minutes to let the blood sugar raise up high enough that we were able to walk again and have normal blood sugars. There have been big smiles and lots of laughs. At one point, Mylin told me stop making them laugh so much because I was making their incision hurt lol. I can’t believe how much they have been able to do and overall how good they have felt!!

We are just so thankful!

See you in 2027 OHIO! ✌️