It’s been just over 9 months since Jack’s life saving surgery. It’s also been just over 8 months since Jack left the hospital and he hasn’t been admitted since. It is crazy to not be in and out of the hospital, and I can’t get over how awesome Jack is doing!
In November, our family spent a few days in NYC as Jack’s dad ran the NYC marathon. It was our first family vacation that didn’t have any medical complications. Jack was so active that week that we had to suspend insulin during most days to avoid extreme lows.
In December, Jack got his wish granted. The family spent 4 days in San Francisco and Jack got to meet his favorite YouTuber. It was the most exciting week of our lives and crazy to experience something he spent so many days in the hospital imagining. Talk about epic life moments! They say never meet your heroes, but in this case, the experience was beyond all our wildest dreams. There are some amazing people out there.
We had our 9 month post TPIAT appointments this week in Cincinnati . Here are the highlights: Jack’s A1C is within normal range. His glucose control has been so precise that we are down to .05 units/hour for his base rate and we will be attempting to go insulin free by end of week. He has not had to give himself a bolus since October 22…This is HUGE! While nothing is guaranteed and we know one illness can put us back to nothing and puberty may prove to be a different story, in the current moment, his islet cells are working and we are about to be insulin-free. Keep him in your prayers while we make this major life adjustment (and his mom…I might be a total wreck right now…). Jack has also gained about 7 pounds. His bmi percentile is double digits for the first time in years, and the doctor said she’s happy to see he finally has a little ‘reserve’ in case he gets sick. We are continuing to work on weight gain and at least keep on the pounds we’ve added these past three months. For the first time in Jack’s entire life, when the GI doctor felt his stomach, she said it was soft. This means he’s no longer constipated 24/7 and that his digestive system is working properly for the first time EVER! All huge wins!
A couple other wins from these past 3 months: Jack got his best grades AND comments at conferences he’s ever experienced. There were no comments about easily distracted or short tempered or agitation. Every single teacher said he was a joy to have and a hard worker. Just goes to show how much his pain was effecting every part of his life. Another win: Jack did his first pull up last week! This might not seem big, but he has been trying almost daily for months. Last week he was able to do one which means his core is finally starting to fire properly. He continues to attend physical therapy twice a week to build back his strength and we are hoping he will be mostly there by 1 year. Finally, Jack now can change all of his medical devices himself. What used to take up to an hour and caused immense anxiety now is done independently in under 5 minutes. As his mom this is the biggest achievement as it gives me peace of mind to know he can do it himself.
Jack is currently training for his 1st 10k that he will be running in Cincinnati to celebrate his one year post-surgery. Some people on his pancreas team from the children’s hospital will also be running, so it will be very special. As Jack approaches his one year, this website will be changing its url to https://cota.org/cotaforjack/ so save this new one to keep up to date on progress! Fingers crossed our next update will be a successful insulin free experience!