It has been quite a day! We thought we were going to have to do a $1300 repair on a bad air conditioner or buy a new one. Because of the hour, I'll skip the story, but we were blessed today by the company announcing today that they are going to fix it for FREE!
Next, I also found out that three letters came today from Trialnet. Those three letters announced that Ryan, Will, and Ben are still negative for type 1 antibodies!!! YEAH!!!! Antibodies usually show up in the first five years of life. Ben was tested at age one, but had been gluten-free & mostly dairy-free up to that point. I dreaded the possibility that he could be positive. I'm so relieved!
Then I found out that my uncle had a heart attack this morning. He is doing well, but still please say a prayer for him. Thanks!
Thursday, October 20, 2011
Sunday, October 16, 2011
Condemnation
Andrew went back to Vanderbilt the end of September. His numbers had been fluctuating quite a bit. I wanted to make changes the week before we went, but I knew the doctor would be looking at the data from the last two weeks, so I didn't want him to over correct for changes I already made. I expected him to raise his nighttime basal, decrease the daytime basal, and perhaps adjust some carb ratios. He had been running high (or very low) at night, so I knew the A1c would be up. Sure enough, it was.
The doctor's first comment when he entered the room was, "So, how long has he been running high?" If it were that simple, I promise I would have given him more insulin. The doctor looked over the numbers himself and then decided they were too random to make any changes. He noted that for every bad number there were good numbers and that if he just raised the insulin, he would tank Andrew. We can't just ignore a rising A1c, so he started asking Andrew lots of questions. Finally, he settled on, "What was his favorite snack?" Andrew answered, "Cheesits." Okay, no, Andrew doesn't eat lots of cheesits. Ryan is a very skinny 14 year-old and asked for some a couple of weeks before the appointment, so I got them. We hadn't had any in a long time, and Andrew had enjoyed some too. The doctor decided that fat might be the problem. He said he wasn't asking us to change our diet, but to watch the fat content and use an extended bolus anytime he had a high fat snack or meal. He wanted me to call back in a week and talk to him again.
I can't explain the condemnation I felt. The A1c so feels like a parenting report card. A good A1c makes you a good parent and a bad A1c makes you a bad parent. That's not true, but it is how it feels. I was a perfectionist as a student. My mom sat me down before high school and warned me that I might make a B and that it would be okay. I didn't think so. To fail now when my child bears the consequences of my mistakes is beyond upsetting. So I obsessed with everything he ate. I found an app that would calculate all the percentages for me so that I could tell if our meals were "balanced" or "high fat". Most of our meals are just fine. But I played with the boluses and recorded every bite, activity, and event in Andrew's life so I could explain everything to the doctor if needed. I made sure every snack was "balanced" and nearly came unglued when on my way home from work I found out he ate apples for a snack. I know in most homes that's a good thing, but it my warped world, that's "unbalanced"! Did he have any protein with that?
I try to live life separating condemnation and conviction. Condemnation isn't healthy, but I'm convicted of something I'm supposed to change, I want to. When the week was up, despite all the additional angst, Andrew's average on the CGM was identical to what it had been the week before. I was more convinced than ever that the basal rates needed changing. I called and we raised the basal at night and lowered it at day. The rollercoaster lows & highs stopped & the nighttime numbers have come down. We had one night were he was really low, but he had played really hard outside with some friends. That's the part that is so hard to quantify with Andrew. His average this week is back down to what it has traditionally been or a little lower. I have been convicted that I need to analyze the data more often. It gets so easy to just react to the moment and not look for the patterns. Andrew deserves better. I've scheduled data downloads & review on the calendar, and I've taught Andrew to download the Dex. I'm supervising breakfast more closely now because Gene is having to leave earlier for work four days a week. I'm calculating percentages on some meals, but not obsessing over it.
For there is now no condemnation... at least until the next doctor visit.
The doctor's first comment when he entered the room was, "So, how long has he been running high?" If it were that simple, I promise I would have given him more insulin. The doctor looked over the numbers himself and then decided they were too random to make any changes. He noted that for every bad number there were good numbers and that if he just raised the insulin, he would tank Andrew. We can't just ignore a rising A1c, so he started asking Andrew lots of questions. Finally, he settled on, "What was his favorite snack?" Andrew answered, "Cheesits." Okay, no, Andrew doesn't eat lots of cheesits. Ryan is a very skinny 14 year-old and asked for some a couple of weeks before the appointment, so I got them. We hadn't had any in a long time, and Andrew had enjoyed some too. The doctor decided that fat might be the problem. He said he wasn't asking us to change our diet, but to watch the fat content and use an extended bolus anytime he had a high fat snack or meal. He wanted me to call back in a week and talk to him again.
I can't explain the condemnation I felt. The A1c so feels like a parenting report card. A good A1c makes you a good parent and a bad A1c makes you a bad parent. That's not true, but it is how it feels. I was a perfectionist as a student. My mom sat me down before high school and warned me that I might make a B and that it would be okay. I didn't think so. To fail now when my child bears the consequences of my mistakes is beyond upsetting. So I obsessed with everything he ate. I found an app that would calculate all the percentages for me so that I could tell if our meals were "balanced" or "high fat". Most of our meals are just fine. But I played with the boluses and recorded every bite, activity, and event in Andrew's life so I could explain everything to the doctor if needed. I made sure every snack was "balanced" and nearly came unglued when on my way home from work I found out he ate apples for a snack. I know in most homes that's a good thing, but it my warped world, that's "unbalanced"! Did he have any protein with that?
I try to live life separating condemnation and conviction. Condemnation isn't healthy, but I'm convicted of something I'm supposed to change, I want to. When the week was up, despite all the additional angst, Andrew's average on the CGM was identical to what it had been the week before. I was more convinced than ever that the basal rates needed changing. I called and we raised the basal at night and lowered it at day. The rollercoaster lows & highs stopped & the nighttime numbers have come down. We had one night were he was really low, but he had played really hard outside with some friends. That's the part that is so hard to quantify with Andrew. His average this week is back down to what it has traditionally been or a little lower. I have been convicted that I need to analyze the data more often. It gets so easy to just react to the moment and not look for the patterns. Andrew deserves better. I've scheduled data downloads & review on the calendar, and I've taught Andrew to download the Dex. I'm supervising breakfast more closely now because Gene is having to leave earlier for work four days a week. I'm calculating percentages on some meals, but not obsessing over it.
For there is now no condemnation... at least until the next doctor visit.
Thank you for supporting the Walk!
Thank you to all of you who donated toward the cure and to those who came out and walked with us! Every dollar counts toward a much needed cure! It was a perfectly beautiful day! Here is a picture of the team after the walk:
Therafit sponsored out team and paid for our shirts this year! Thank you Therafit!!!
Trialnet came for the first time and I got to get Ryan, Will, and Ben rescreened locally, which was so very nice! Autoimmunity usually develops in the first five years of life, so I'm not that worried about Ryan & Will. I'm a little nervous about Ben. I hope to get three letters all on the same day saying they are all negative! Dr. Russell from Vanderbilt came. He is so nice & was great with the kids. Here he is with Andrew:
Trialnet came for the first time and I got to get Ryan, Will, and Ben rescreened locally, which was so very nice! Autoimmunity usually develops in the first five years of life, so I'm not that worried about Ryan & Will. I'm a little nervous about Ben. I hope to get three letters all on the same day saying they are all negative! Dr. Russell from Vanderbilt came. He is so nice & was great with the kids. Here he is with Andrew:
Saturday, September 3, 2011
Walk To Cure Diabetes 2011
We are walking again this year for Juvenile Diabetes Research Foundation's (JDRF's) Walk To Cure Diabetes! I so want to see a cure for this disease and a prevention before Kaitlyn has to walk this road too. Andrew and Kaitlyn helped create this video today using Animoto:
If you can help, please donate at goo.gl/G6LWY. Thank you!
If you can help, please donate at goo.gl/G6LWY. Thank you!
Saturday, August 13, 2011
More Disney
Monday, we went to Hollywood Studios. The Rockin' Roller Coaster was the favorite ride of all the parks for the oldest kids. Ben loved the playground & Disney Junior. Gene & I loved Beauty and the Beast. While at Hollywood Studios, Andrew had a low blood sugar in the low 50s. We had been at Disney for six days and had never left the property. We had used up all the juice and most of the candy that we had brought with us. We had glucose tabs that we'd been given at the exhibit hall, but we were out of the one flavor that Andrew actually likes (sour apple from Publix). I saw a stand selling bottled sodas and felt like I could get soda into him faster than I could convince him to eat the cherry tabs. Andrew looked like he was dropping fast, so, despite the line, I asked, "Excuse me, but my son is having a low blood sugar. Could you please give us a Sprite now, and then we will stand in line to pay for it?" He did, and Gene stood in line while I tended to Andrew. When Gene joined us, he said the cast member refused to let Gene pay for it!
Tuesday, we checked out and headed to Blizzard Beach for the day. We started at the first aid station to check in the spare insulin and Dex sensors that wouldn't weather a day in the park. We didn't have to do that any other day since we could leave the extras at Aunt Estelle's or the hotel. They were very nice and it worked out great! We left in the afternoon and we were back to Aunt Estelle's in time for a late dinner. We rested and did mounds of laundry on Wednesday, but headed back for another day at Epcot on Thursday!
Epcot was probably Gene's favorite park, but it was the least favorite for most of the kids. They did like Mission: Space and Test Track. I really liked Soarin'. Andrew's blood sugar ran high all day. We were getting in line for the Nemo ride when Andrew turned to me and said, "I have to go to the bathroom, and I won't be able to wait." He rarely has this problem, and it was only because of his blood sugar. Why was it so high? I don't know. Remember Hollywood Studios ran him low. It's the nature of the beast. We stopped to talk to the cast member at the entrance. I showed her the GAC and explained the situation and asked if she would be able to reunite us with the rest of our party. She looked at the card and explained that we were already approved for an alternate entrance. We should get the rest of the party and use the handicapped entrance instead. I wouldn't have normally used the GAC on that ride, but I have to admit that it was nice!
We spent the weekend resting and visiting with family. Monday, Ben had a special day with Aunt Estelle, and the rest of us returned to Magic Kingdom. Ben still hasn't asked where we were. It was a very busy, very hot day, so we needed to use the GAC more that day than any other. It was a truly magical vacation, and I would love to go back! However, I'm pretty sure it was a once in a lifetime experience for us.
Tuesday, we checked out and headed to Blizzard Beach for the day. We started at the first aid station to check in the spare insulin and Dex sensors that wouldn't weather a day in the park. We didn't have to do that any other day since we could leave the extras at Aunt Estelle's or the hotel. They were very nice and it worked out great! We left in the afternoon and we were back to Aunt Estelle's in time for a late dinner. We rested and did mounds of laundry on Wednesday, but headed back for another day at Epcot on Thursday!
Epcot was probably Gene's favorite park, but it was the least favorite for most of the kids. They did like Mission: Space and Test Track. I really liked Soarin'. Andrew's blood sugar ran high all day. We were getting in line for the Nemo ride when Andrew turned to me and said, "I have to go to the bathroom, and I won't be able to wait." He rarely has this problem, and it was only because of his blood sugar. Why was it so high? I don't know. Remember Hollywood Studios ran him low. It's the nature of the beast. We stopped to talk to the cast member at the entrance. I showed her the GAC and explained the situation and asked if she would be able to reunite us with the rest of our party. She looked at the card and explained that we were already approved for an alternate entrance. We should get the rest of the party and use the handicapped entrance instead. I wouldn't have normally used the GAC on that ride, but I have to admit that it was nice!
We spent the weekend resting and visiting with family. Monday, Ben had a special day with Aunt Estelle, and the rest of us returned to Magic Kingdom. Ben still hasn't asked where we were. It was a very busy, very hot day, so we needed to use the GAC more that day than any other. It was a truly magical vacation, and I would love to go back! However, I'm pretty sure it was a once in a lifetime experience for us.
Sunday, July 31, 2011
Fun at Magic Kingdom
The conference officially ended with a farewell breakfast on Sunday morning. We extended our stay two more nights at the same conference discounted rate. I admit I loved being on site and able to ride the buses and enjoy the extra magic hours!
Sunday, we headed to Magic Kingdom as soon as we finished breakfast. We met my aunt & cousin too. We got on the Splash Mountain & Big Thunder Mountain first before the crowds were too long. We spent a few hours at the park and then left for a break. Ben and I headed back to the hotel for nap, but the older kids went to the Contemporary with my aunt to check out their pool since it was closer. My aunt had made reservations for the girls to go to tea, so the boys headed back to our hotel anyway to rest until the heat let up.
When we got back, the line at Space Mountain was too long. Members at CWD had recommended getting a Guest Assistance Card (GAC) for our diabetic children in the heat of summer. The heat alone does crazy things to their blood sugar & they may have to stop to deal with highs & lows & extra restroom breaks, etc. Disney agreed and had someone at the Coronado on Wednesday to help us with them. Our GAC allowed Andrew to wait in a cool place or use an alternate entrance. Roller coasters were an easy place for me to justify using the card. If he has to unplug his pump and leave it behind to ride the ride, he didn't need to spend forever standing around with no insulin. We only used it on roller coasters, but it really made a huge difference!
Saturday night, Ben made it until almost 9:00 & then started saying, "I want to go home (meaning the hotel)." Ryan had been out until midnight the night before so he decided to return to the hotel with me. The three of us and a stroller got to right in front of Cinderella's castle just in time for the Wishes Nighttime Spectacular. The lights in the park went down & there was literally no way we could make it through the crowd, so we just watched. It was an amazing light show that turned the castle different colors. Ryan is old enough to appreciate how difficult that was to do, and he was mesmerized! It's harder to have magical moments with kids as they get older, but, despite the fact that Ben was still crying to go home, that was my magical moment with Ryan. When the light show was over, we did try to get out of the park before the actual fireworks. We weren't entirely successful, so when we got into the bus poor Ben uttered, "Now we're safe." We tried to take him a store or restaurant to hide for any fireworks after that. The rest of the family enjoyed the Electrical Parade and stayed until midnight on Saturday. Sunday night, Ben made it until almost midnight, and the older kids enjoyed extra magic hours until nearly 3 am!
Sunday, we headed to Magic Kingdom as soon as we finished breakfast. We met my aunt & cousin too. We got on the Splash Mountain & Big Thunder Mountain first before the crowds were too long. We spent a few hours at the park and then left for a break. Ben and I headed back to the hotel for nap, but the older kids went to the Contemporary with my aunt to check out their pool since it was closer. My aunt had made reservations for the girls to go to tea, so the boys headed back to our hotel anyway to rest until the heat let up.
When we got back, the line at Space Mountain was too long. Members at CWD had recommended getting a Guest Assistance Card (GAC) for our diabetic children in the heat of summer. The heat alone does crazy things to their blood sugar & they may have to stop to deal with highs & lows & extra restroom breaks, etc. Disney agreed and had someone at the Coronado on Wednesday to help us with them. Our GAC allowed Andrew to wait in a cool place or use an alternate entrance. Roller coasters were an easy place for me to justify using the card. If he has to unplug his pump and leave it behind to ride the ride, he didn't need to spend forever standing around with no insulin. We only used it on roller coasters, but it really made a huge difference!
Saturday night, Ben made it until almost 9:00 & then started saying, "I want to go home (meaning the hotel)." Ryan had been out until midnight the night before so he decided to return to the hotel with me. The three of us and a stroller got to right in front of Cinderella's castle just in time for the Wishes Nighttime Spectacular. The lights in the park went down & there was literally no way we could make it through the crowd, so we just watched. It was an amazing light show that turned the castle different colors. Ryan is old enough to appreciate how difficult that was to do, and he was mesmerized! It's harder to have magical moments with kids as they get older, but, despite the fact that Ben was still crying to go home, that was my magical moment with Ryan. When the light show was over, we did try to get out of the park before the actual fireworks. We weren't entirely successful, so when we got into the bus poor Ben uttered, "Now we're safe." We tried to take him a store or restaurant to hide for any fireworks after that. The rest of the family enjoyed the Electrical Parade and stayed until midnight on Saturday. Sunday night, Ben made it until almost midnight, and the older kids enjoyed extra magic hours until nearly 3 am!
Family Day at the Coronado
Saturday was Family Day at the Coronado Resort. We slept in a bit in the morning, checked out the FFL scavenger hunt, and then had a character lunch catered at the convention center. Mickey, Minney, Goofy, Donald, Woody, Jesse, and Chip and Dale were all there! The lunch was complete with great food, good photo ops, hula hoops, a DJ and dance floor, and lots of new friends!
After lunch, I took Ben back to the room for a nap, and Gene took the kids to ride the surrey! They had a wonderful time as you can see!
We could have spent the entire day just enjoying the resort. In the evening though, we couldn't resist the chance to see the magic at Magic Kingdom!
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