My head is spinning and my heart is aching. Tomorrow will be five years since Julia was diagnosed with type 1 diabetes. That's not the hard part. The part that is getting to me is that from tomorrow forward, she will have lived longer with diabetes than she lived without diabetes.
It feels like yesterday, taking her to the doctor, driving to the emergency room. I can still remember every moment. It also feels like so long ago. We have come so far. I remember when we left the hospital I was so scared. Scared that I would mess up. Scared of her getting sick. Scared of ever letting her out of my sight. And yes I have messed up, I am human after all. She has gotten sick but we survived. And I do let her out of my sight but with our Dexcom with share, I always know how she is doing.
I am so proud of her. She is so strong. She is wise beyond her years. She has empathy for others and is so responsible. Five years ago I had no idea the amazing young lady she would become. I just knew my sweet little kindergarten girl's life would never be the same. It hurt then and that still hurts now.
I've known this anniversary was coming. It has been weighing on my heart for a while now. She mentioned it at dinner last night. It was just a casual comment. "Sunday is my five year diaversary." No big deal. She wants to go to Benihana or out for sushi on Tuesday to commemorate it. So we will. We will go out and celebrate her strength and her future. I will borrow a little bit of that strength. I will be okay because she is okay.
Saturday, November 7, 2015
Tuesday, June 25, 2013
Broken Hearted
On Friday, I learned horrible news. One of the counselors from our diabetes camp died. I have not been able to stop thinking about it. He was only 22. I only met him briefly last summer but that doesn't change the fact that his life was cut short. He was at camp for family camp b last year. He helped my daughter climb the rock wall. He let her put a site on his stomach when she wanted to try putting a site on someone. He was kind and smart (majoring in chemical and biomedical engineering while minoring in chemistry and biomedical engineering). He had a great laugh and his smile was infectious. He had type 1 diabetes. We need a cure.
Tuesday, March 5, 2013
Never Say Never
Well it has happened, we have used glucagon. Thankfully it wasn't as harrowing a situation as it could have been. Typically glucagon is used when a pwd has such a low blood sugar that they are unconscious and unable to intake any fast acting sugar. Julia was never unconscious and I am very thankful for that. But it has definitely been a very long few days.
It all started Saturday morning when Julia woke up with a stomach bug. This was not our first encounter with type 1 and stomach issues so I was ready to spend a long day testing BGs and having her sip on high carb drinks. We camped out in bed with Disney sitcoms, Gatorade, 7-up and a whole lot of test strips. The day was passing without anything too dramatic.
Joe needed to get to batting practice before his game so I drove him over while Bubba took a turn with flu watch and got dressed for the baseball game. Bubba was going to be heading over to Joe's game and then heading to work for the night. I came back home and did another bg check along with a ketone check. High bg and ketones can be very dangerous. Julia's bg was in range but her ketones started to rise from trace to moderate. Now the best cure for ketones is insulin and lots of fluids. The problem was Julia's blood sugar was hanging out at about 97 and there was no way to force lots of fluid because one sip too many and we were on the express train to pukeville. Right about then, Bubba got a message that Joe threw up at the ball field. Seriously. He left to go check things out and bring Joe home. When he arrived Joe was doing much better and thought his lunch did not agree with him. The game started with Joe in the outfield. The game ended quickly for Joe when he christened the field with his stomach contents.
For those of you keeping score at home, we are at two sick kids and a husband on the way out the door to work.
Bubba left. Luckily it was just Joe's lunch not agreeing because he was fine the rest of the night. For Julia the outcome was not as rosy. She wasn't holding anything down and the ketones kept rising. Ketones can develop when a person hasn't eaten, any person not just a person with diabetes. She kept getting more and more listless. I had been in contact with her doctor. He said at this point the choice to go to the ER was mine or I could try to stay at home a little longer. I really didn't want to go to the hospital unless we really needed it. I watched her number stay steady and the ketones climb and then stay right where they were. No longer moderate. They were large. She was more and more out of it but I kept slipping in fluids and then poof, she snapped out of it. The ketones started to clear up and my little girl was back.
Sunday we stayed quiet. She didn't throw up at all. We battled back the last of the ketones. She was worried about Monday. She was worried about having to go back to school and eat the food she was supposed to eat in the time allotted her.
Bubba and I had another plan in store. Joe turned 10 on Friday but Bubba had to work all weekend. We decided to take the kids out of school and go to the Lego Store and to lunch. That would also take care of Julia's nerves about eating within the school's scheduled time. We had a great day. Joe was in heaven at the Lego store. We had lunch at the ESPN Zone. Julia didn't eat a ton but she ate and everything seemed okay.
We made it home in time to get to Joe's baseball game. Julia ate her dinner there, not all of it but still she seemed to be on the mend. Joe's team won. Woo Hoo! We came home and everyone went off to bed. I checked Julia at 10:45 and she was 76. She said she was feeling shaky so I gave her a juice box. Fifteen minutes later and she said she feels like she is dropping and her stomach is hurting. I checked her number and grabbed a bowl 72 and a whole lot of yuckiness later, she says she feels horrible and she can tell her number is dropping. Click, poke, wait...62. We were out of options. I opened the glucagon and prepped for a mini dose (you can read what that means HERE). Twenty minutes later she was 139 and easing off to dreamland. I spent a long night checking and watching. She woke bright and early this morning and spent the day resting today. No more throwing up. She is happy and although not all the way back to normal, she is doing pretty darn good.
I, on the other hand, have been on the verge of tears all day. The glucagon itself didn't scare me but I have lost a security I have held since her diagnosis. Every time I explain to someone what glucagon is or talk to a newly diagnosed family who has the fear of an unconscious child in the forefront of their mind I could always say, "We have never used it." It was always just the back up plan, the worst case scenario. I know we did not have to use it in the way it would have been to be the worst case. But we have used it, I can no longer say never.
It all started Saturday morning when Julia woke up with a stomach bug. This was not our first encounter with type 1 and stomach issues so I was ready to spend a long day testing BGs and having her sip on high carb drinks. We camped out in bed with Disney sitcoms, Gatorade, 7-up and a whole lot of test strips. The day was passing without anything too dramatic.
Joe needed to get to batting practice before his game so I drove him over while Bubba took a turn with flu watch and got dressed for the baseball game. Bubba was going to be heading over to Joe's game and then heading to work for the night. I came back home and did another bg check along with a ketone check. High bg and ketones can be very dangerous. Julia's bg was in range but her ketones started to rise from trace to moderate. Now the best cure for ketones is insulin and lots of fluids. The problem was Julia's blood sugar was hanging out at about 97 and there was no way to force lots of fluid because one sip too many and we were on the express train to pukeville. Right about then, Bubba got a message that Joe threw up at the ball field. Seriously. He left to go check things out and bring Joe home. When he arrived Joe was doing much better and thought his lunch did not agree with him. The game started with Joe in the outfield. The game ended quickly for Joe when he christened the field with his stomach contents.
For those of you keeping score at home, we are at two sick kids and a husband on the way out the door to work.
Bubba left. Luckily it was just Joe's lunch not agreeing because he was fine the rest of the night. For Julia the outcome was not as rosy. She wasn't holding anything down and the ketones kept rising. Ketones can develop when a person hasn't eaten, any person not just a person with diabetes. She kept getting more and more listless. I had been in contact with her doctor. He said at this point the choice to go to the ER was mine or I could try to stay at home a little longer. I really didn't want to go to the hospital unless we really needed it. I watched her number stay steady and the ketones climb and then stay right where they were. No longer moderate. They were large. She was more and more out of it but I kept slipping in fluids and then poof, she snapped out of it. The ketones started to clear up and my little girl was back.
Sunday we stayed quiet. She didn't throw up at all. We battled back the last of the ketones. She was worried about Monday. She was worried about having to go back to school and eat the food she was supposed to eat in the time allotted her.
Bubba and I had another plan in store. Joe turned 10 on Friday but Bubba had to work all weekend. We decided to take the kids out of school and go to the Lego Store and to lunch. That would also take care of Julia's nerves about eating within the school's scheduled time. We had a great day. Joe was in heaven at the Lego store. We had lunch at the ESPN Zone. Julia didn't eat a ton but she ate and everything seemed okay.
We made it home in time to get to Joe's baseball game. Julia ate her dinner there, not all of it but still she seemed to be on the mend. Joe's team won. Woo Hoo! We came home and everyone went off to bed. I checked Julia at 10:45 and she was 76. She said she was feeling shaky so I gave her a juice box. Fifteen minutes later and she said she feels like she is dropping and her stomach is hurting. I checked her number and grabbed a bowl 72 and a whole lot of yuckiness later, she says she feels horrible and she can tell her number is dropping. Click, poke, wait...62. We were out of options. I opened the glucagon and prepped for a mini dose (you can read what that means HERE). Twenty minutes later she was 139 and easing off to dreamland. I spent a long night checking and watching. She woke bright and early this morning and spent the day resting today. No more throwing up. She is happy and although not all the way back to normal, she is doing pretty darn good.
I, on the other hand, have been on the verge of tears all day. The glucagon itself didn't scare me but I have lost a security I have held since her diagnosis. Every time I explain to someone what glucagon is or talk to a newly diagnosed family who has the fear of an unconscious child in the forefront of their mind I could always say, "We have never used it." It was always just the back up plan, the worst case scenario. I know we did not have to use it in the way it would have been to be the worst case. But we have used it, I can no longer say never.
I am in no way a medical professional...I only share my stories. Please do not take anything I say as medical advice.
Tuesday, January 22, 2013
Until there is a Cure there is Camp
I don't know how to put into words what a special place camp is. Camp Conrad-Chinnock makes my heart happy. I feel at peace when I arrive and refreshed and renewed when I leave.
We have come in the summer twice. This is the first time ever that there was a family winter camp. I am so glad that we decided to go.
As we drove up the mountain and started seeing the snow the kids were getting so excited. I started to feel a great sense of calm that only camp can bring. It was so cool to see camp in the winter. The snow covered ground, the pool covered in ice and all the cabins with snow on the roof tops, it looked like a postcard.
We spent the weekend with friends that hold such a special place in our hearts. I've seen the posts online about having a commune for families who are dealing with Type 1. Camp is that commune. We may not live there year round but the time we are there is magic. We all speak the same language. We know the struggles that we face day to day. There are no explanations needed.
The kids went sledding. We drank hot chocolate. We had highs and lows. We were in a snowman building contest and a newspaper fashion show. We bolused. We sang karaoke. We played. We lived. Every day I pray that a cure for diabetes is found. Until that day comes, we will go to camp.
This is the video put together by the camp staff showing some of the fun we had. Thank you DCES & Padre Foundation!
We have come in the summer twice. This is the first time ever that there was a family winter camp. I am so glad that we decided to go.
As we drove up the mountain and started seeing the snow the kids were getting so excited. I started to feel a great sense of calm that only camp can bring. It was so cool to see camp in the winter. The snow covered ground, the pool covered in ice and all the cabins with snow on the roof tops, it looked like a postcard.
We spent the weekend with friends that hold such a special place in our hearts. I've seen the posts online about having a commune for families who are dealing with Type 1. Camp is that commune. We may not live there year round but the time we are there is magic. We all speak the same language. We know the struggles that we face day to day. There are no explanations needed.
The kids went sledding. We drank hot chocolate. We had highs and lows. We were in a snowman building contest and a newspaper fashion show. We bolused. We sang karaoke. We played. We lived. Every day I pray that a cure for diabetes is found. Until that day comes, we will go to camp.
Sunday, November 18, 2012
JDRF Walk 2012
We had such a great time at the walk this year. The weather was amazing. So much better than last year's pouring rain. Team Julia was out in force in our hot pink shirts. Our team was very easy to spot all day. Julia designed them and she was so pleased with how they looked.
I always feel so uplifted on walk day. It fills my heart to see our friends and family come out and support us. We were able to raise over $5000.00 for JDRF. I am so proud of our team and thankful for every donation we received.
One of the kids turned to me while we were walking and said, "I hope they do it."
"Do what?" I asked her.
"Find a cure, that would be really great," she said.
I couldn't agree more.
Thursday, October 25, 2012
Team Julia
We are gearing up for our JDRF Walk this year. I have put together a walk video again this year.
We would love to have you join our team.
http://www2.jdrf.org/site/TR/Walk-CA/Chapter-LosAngeles4041?px=1370530&pg=personal&fr_id=1890
We had such a great time last year and I would love our team to grow this year.
We would love to have you join our team.
http://www2.jdrf.org/site/TR/Walk-CA/Chapter-LosAngeles4041?px=1370530&pg=personal&fr_id=1890
We had such a great time last year and I would love our team to grow this year.
Tuesday, September 25, 2012
Bringing Diabetes to School
Well we did it. Julia let me talk to her class this year about Type 1 Diabetes.
In kindergarten I talked to the class. She didn't have much choice. She was at school one day and then she was in the hospital for a week. So when she came back, it just made sense to explain where she has been and what had happened.
In 1st grade she didn't want me to talk about it. I tried to find out why she didn't want to and I never really got a straight answer.
One thing I have heard her saying is that she gets tired of the questions all the time. She doesn't like kids asking her what she is doing when she is checking her blood sugar or using her pump. She just didn't want to talk about it. So this year I tried telling her that I would do the talking and answer all the questions so she wouldn't have to. I told her that maybe if I explained things, the kids would stop asking her. And then she got exciting news. She was going to be the very first star of the week. She got to make a poster all about her and she would get to share something in class every day.
As we were coloring her poster I asked what she wanted to bring to share. Of course she had a plan for every day. One of the things she wanted to bring was her Lenny the Lion. We got Julia's' Lenny after Family Camp this year. The president of Medtronic Diabetes came to visit camp and took the names and addresses of all the kids with diabetes at camp. She then shipped each one their very own Lenny fully dressed and outfitted with a real pump, pump site and CGM sensor.
So Julia and I talked about if maybe on the day she brought Lenny, I could come too. I would explain diabetes and the kids could all touch Lenny's pump so they wouldn't be so curious about hers. She agreed. So armed with a fluffy lion in a Hello Kitty shirt and tutu rocking a purple pump and a sweet girl also in a Hello Kitty shirt and tutu with a pink pump I was ready. I also prepped by watching Misty's daughter's powerpoint . It is a very simple straight to the point explanation about Type 1. It was exactly what I needed and wanted.
In kindergarten I talked to the class. She didn't have much choice. She was at school one day and then she was in the hospital for a week. So when she came back, it just made sense to explain where she has been and what had happened.
In 1st grade she didn't want me to talk about it. I tried to find out why she didn't want to and I never really got a straight answer.
One thing I have heard her saying is that she gets tired of the questions all the time. She doesn't like kids asking her what she is doing when she is checking her blood sugar or using her pump. She just didn't want to talk about it. So this year I tried telling her that I would do the talking and answer all the questions so she wouldn't have to. I told her that maybe if I explained things, the kids would stop asking her. And then she got exciting news. She was going to be the very first star of the week. She got to make a poster all about her and she would get to share something in class every day.
As we were coloring her poster I asked what she wanted to bring to share. Of course she had a plan for every day. One of the things she wanted to bring was her Lenny the Lion. We got Julia's' Lenny after Family Camp this year. The president of Medtronic Diabetes came to visit camp and took the names and addresses of all the kids with diabetes at camp. She then shipped each one their very own Lenny fully dressed and outfitted with a real pump, pump site and CGM sensor.
So Julia and I talked about if maybe on the day she brought Lenny, I could come too. I would explain diabetes and the kids could all touch Lenny's pump so they wouldn't be so curious about hers. She agreed. So armed with a fluffy lion in a Hello Kitty shirt and tutu rocking a purple pump and a sweet girl also in a Hello Kitty shirt and tutu with a pink pump I was ready. I also prepped by watching Misty's daughter's powerpoint . It is a very simple straight to the point explanation about Type 1. It was exactly what I needed and wanted.
So off to school we went. I was nervous and I could tell she was too. When we got up in front of the class, she wouldn't even speak. She was standing next to me but kept her eyes down. I explained that type 1 diabetes just happens. There was nothing she did or didn't do that caused diabetes. I explained that her pancreas doesn't work and that the pump is her pancreas. She brought her eyes up and carried Lenny's pump over to the kids to be passed around. I explained how she has to test her blood sugar and it is just so we know how to keep her healthy. I talked about how she can eat anything and do anything. She was smiling and added how she went to Hawaii this summer. I finished up and asked if anyone had any questions for me. She would call on the kids and I would answer the questions. By the time we finished, she was the one who was answering. I closed by telling the kids that if they ever had any questions about diabetes they could ask me anytime.
I feel like it went well. I hope it helps.
Monday, August 20, 2012
Sometimes Diabetes Hurts
We have been having a great time lately and I have so many drafts about the exciting things we have been doing. Camp, Catalina, Hawaii and all the while diabetes is with us. But today was not fun.
We did a site change this morning and things at lunch appeared fine. But by the time dinner rolled around (at my mom & dad's house) it became obvious that things were not fine. Her BG kept creeping up and ketones were starting to appear. So I reached into our handy dandy backpack and guess what? No new set. As I mentioned, we have been traveling and packing very carefully for airport security and plane flights. And we made a mistake. Things were moved around and the back up sets got moved to another place. Luckily I had syringes so I was able to do the correction, cover dinner and account for her basal insulin with a couple shots. Julia does not like shots but she did what we had to do.
When we arrived home, we put on a new site and got tucked in for bed. She started telling me how she wishes her life wasn't so much about diabetes. She wished that it didn't take up so much of her time. She doesn't like having to explain to friends what she is doing and what all her stuff is for. She asked if we can please go to family winter camp because there everyone gets it. It hurt to listen to the sadness in her voice and to know at 7 she has a long road ahead with diabetes.
That wasn't what hurt the most though. The moment that hit my heart was when I went to check her just now. She was half asleep and rolled over and asked what I was doing. I told her that I was there to check her number to see how she was doing. She rolled over gave me her hand, puckered her lips so I would give her a kiss and said, "Thanks, Mom."
We did a site change this morning and things at lunch appeared fine. But by the time dinner rolled around (at my mom & dad's house) it became obvious that things were not fine. Her BG kept creeping up and ketones were starting to appear. So I reached into our handy dandy backpack and guess what? No new set. As I mentioned, we have been traveling and packing very carefully for airport security and plane flights. And we made a mistake. Things were moved around and the back up sets got moved to another place. Luckily I had syringes so I was able to do the correction, cover dinner and account for her basal insulin with a couple shots. Julia does not like shots but she did what we had to do.
When we arrived home, we put on a new site and got tucked in for bed. She started telling me how she wishes her life wasn't so much about diabetes. She wished that it didn't take up so much of her time. She doesn't like having to explain to friends what she is doing and what all her stuff is for. She asked if we can please go to family winter camp because there everyone gets it. It hurt to listen to the sadness in her voice and to know at 7 she has a long road ahead with diabetes.
That wasn't what hurt the most though. The moment that hit my heart was when I went to check her just now. She was half asleep and rolled over and asked what I was doing. I told her that I was there to check her number to see how she was doing. She rolled over gave me her hand, puckered her lips so I would give her a kiss and said, "Thanks, Mom."
Friday, August 3, 2012
Magic Numbers
There are some number I absolutely love to see.
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Do you see the time stamp on that? 2:01 am When I see that number at that time, it starts a whole bunch of questions. Is she dropping? Should I set a temp basal reduction? Should I give her a little something to hold her over? Do I just let it go?
Last night I chose to just let it go. This morning we woke up to this
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Last night I chose to just let it go. This morning we woke up to this
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Woo Hoo! Diabetes win for us!
Wednesday, May 16, 2012
A Special Thank You for a Very Special Person
In our family we have had a Mother's Day tradition where my mother, sister and I go to the movies while the men in the family stay home with the kids and prepare dinner for us. Last year, was my first Mother's Day after Julia's diagnosis. In fact it was exactly 6 months since Julia's diagnosis. Everyone came to our house and I left Julia here with Bubba and the rest of the family.
This year, Bubba had to work and I wasn't exactly sure how it would all work out. Those who know me know I don't like to ask for help. I am also not a big fan of giving up control. There has been a family member who has looked out for Julia since her diagnosis. He has stepped in and asked to be shown how to care for her with out me ever asking if he wanted to. In fact he is the only person besides Bubba or myself to give Julia an injection. He is my brother who also happens to be Julia's godfather and I appreciate him very much.
Usually if I am leaving Julia with someone, I also leave very detailed directions including carb counts for any food that may be eaten,. On Sunday, I went to the movies with my sister and my mom and he took care of everything. I told him where her supply bag was and that was it. He measured food. He checked her blood sugar. He bolused her snack. He even handled a low. It was the best Mother's Day gift I ever could have asked for if I would have asked. Thanks Tony, you are the best!
This year, Bubba had to work and I wasn't exactly sure how it would all work out. Those who know me know I don't like to ask for help. I am also not a big fan of giving up control. There has been a family member who has looked out for Julia since her diagnosis. He has stepped in and asked to be shown how to care for her with out me ever asking if he wanted to. In fact he is the only person besides Bubba or myself to give Julia an injection. He is my brother who also happens to be Julia's godfather and I appreciate him very much.
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| Julia & Uncle Tony at the JDRF walk in November |
Sunday, April 22, 2012
Just Checking In...
First of all, I can't believe it has been so long since I have written a post! I guess that is a good thing. We are living our lives with diabetes without letting diabetes run our lives.
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| Joe catching |
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| Julia up to bat |
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We are spending a lot of time at the ball park. Both kids are enjoying it so much and Bubba and I are too.
Last Easter was our first holiday pumping. That was a huge relief for us. Most of our family holidays involve a whole lot of food and while Julia was on shots, it was a struggle to work that out. This year we have more experience on our side and am happy to report that not only was it a great day with family, Julia's numbers during our celebrations were between 72 - 131! Trust me I was shocked too. Those are great numbers and most of our "regular" days don't look anything like that.
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| Relaxing with cousins |
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| I love how her hair in flying in this picture! |
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| Joe hunting for eggs |
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| Our Family |
Our spring break was full of fun as well. One of the things we got to do was meet Charlie Kimball and hear him speak about living and racing with diabetes. He is a driver on the IndyCar circuit and was so great. I promise to write a post soon just about that.
On a personal note, I am becoming more involved with our JDRF chapter. I am now a peer mentor to recently diagnosed families. I decided to help because after diagnosis, for our family, it was so great to have someone we could talk to who completely understood what we were going through.
So there you have it...we are doing well, just busy. Taking our Type 1 trip one day at a time. Luckily our trip lately has been pretty darn good.
Thursday, February 23, 2012
Let's Play Diabetes
About a month ago a fellow blogger wrote a post about her daughter's stuffed animals that have diabetes. I was inspired by her post (because all of my daughter's stuffed animals have diabetes) to look for a play pump for Julia to put on her toys. I found T & J Designs and ordered two for Julia. One for her stuffed bunny & one for her Fancy Nancy doll.
Yesterday they arrived. She is so happy. She has pretended her dolls and animals have diabetes since her diagnosis. She used a play syringe and a spare meter that we never had strips for to test and treat them. Seeing how happy she is to see her dolls be like her does my heart good.
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Fancy Nancy from the book may not have diabetes, but in our house she does. There was even a spot on the order form where you can put the type of pump used so they both have Medtronic pumps just like Julia. It is nothing fancy, just some foam with a sticker and tubing with a simple round band aid for the site.
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There is a mom on Facebook trying to get Mattel's attention so they can make a "Diabetic Barbie" . Her daughter brought it up after the media coverage about making a "Bald Barbie". Will they do it? Who knows. Maybe they can just make some accessories like pumps, meters & kits that are Barbie sized so those who want them can order them. Some say that play time can be an escape from the day to day of diabetes. I think pretend play can be therapeutic. Seeing Julia's smiling face as she takes out their pump or tucks their pump belt under their clothes shows me that this was just what she needed.
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Thursday, January 26, 2012
Rough Patch
I am beaten. These high numbers are too much for me to bear. I am not talking about a random high here or there. I am talking about higher than are healthy that I can't budge. I am talking about constant tweaks and emails with her doctor to try to bring them down. It is not working. We have upped basals, tightened insulin carb ratios, still not working.
There aren't ketones so that is good. It is not constant. She has been under 100 pretty regularly at the 2 am check. Yes, you read that correctly. We struggle with the highs during the day and avoid the lows all night.
I am tired and angry and frustrated. I fear the 10:30 am snack text knowing that she will be out of range and I am on edge until the lunch time check hoping that she will be back in range. (She isn't).
I am distracted. I have forgotten appointments. I am not fulfilling my commitments. I am hurting because I know this is hurting her. I think about the long term consequences of high blood sugars and my stomach turns upside down.
They say it is always darkest before the dawn. I need to see the sun.
There aren't ketones so that is good. It is not constant. She has been under 100 pretty regularly at the 2 am check. Yes, you read that correctly. We struggle with the highs during the day and avoid the lows all night.
I am tired and angry and frustrated. I fear the 10:30 am snack text knowing that she will be out of range and I am on edge until the lunch time check hoping that she will be back in range. (She isn't).
I am distracted. I have forgotten appointments. I am not fulfilling my commitments. I am hurting because I know this is hurting her. I think about the long term consequences of high blood sugars and my stomach turns upside down.
They say it is always darkest before the dawn. I need to see the sun.
Monday, January 16, 2012
1 Year of Blogging
One year ago today I started this blog because I felt lost. My daughter had been diagnosed with diabetes and I was overwhelmed. Then, she got sick for the first time since diagnosis. I had all of these thoughts and feelings flying around in my head and I knew if I didn't get them out, I would go crazy. So I wrote about those scary 24 hours and I felt better.
Things have come a long way in a year. We have come a long way in a year. Are there times I still feel overwhelmed by diabetes? Of course. But now I have found a whole community of people who understand what I am going through and help me to see we are not alone. I have also gained confidence in my ability to care for my daughter. Are there times that I feel confused? Of course. But now I know that is how it will be with diabetes. Diabetes doesn't always make sense and the more I accept that the easier my road is.
Thank you for being a part of our journey so far and I hope you continue with us on Our Type 1 Trip...
Things have come a long way in a year. We have come a long way in a year. Are there times I still feel overwhelmed by diabetes? Of course. But now I have found a whole community of people who understand what I am going through and help me to see we are not alone. I have also gained confidence in my ability to care for my daughter. Are there times that I feel confused? Of course. But now I know that is how it will be with diabetes. Diabetes doesn't always make sense and the more I accept that the easier my road is.
Thank you for being a part of our journey so far and I hope you continue with us on Our Type 1 Trip...
Saturday, December 10, 2011
A1C How Great a Change Can Be?
We had our 2nd visit with our new endocrinologist. I was hopeful after we met with him the last time that we would see an improvement in her A1C. An A1C test measures Julia's average blood sugar over the last two to three months. The higher her result the greater risk she has for diabetes complications in the future. At her initial visit with him in September, her A1C had gone up from 7.4 to 7.8. So I was hoping that we would be at least back to the 7.4. I was blown away when he ran her blood and we came up with a 6.6!
I was so pleased and so was he. He was also very kind and said he knew that a change like that could not have come without a lot of hard work and dedication on our part.
I knew after our first appointment with him that making the change was the right thing to do but my heart still felt heavy. Not anymore. Now I have real concrete proof that this change was the right thing to do.
I was so pleased and so was he. He was also very kind and said he knew that a change like that could not have come without a lot of hard work and dedication on our part.
I knew after our first appointment with him that making the change was the right thing to do but my heart still felt heavy. Not anymore. Now I have real concrete proof that this change was the right thing to do.
Friday, November 11, 2011
Our JDRF Walk 2011
Last Sunday was our family's first JDRF walk. We had such a great time. And although I am sure you have heard the song about how it never rains in Southern California, I can tell you the song is wrong. The first hour and a half we were there it was very wet.
It didn't dampen our spirits though. We were all ready for a great day. The kids danced in the rain at the Radio Disney Booth. They were soaked and cold but happy. Our team shirts turned out great and I was so excited for Julia to be able to wear hers. On the back of all the shirts it said "We are walking for Julia" her shirt said "I'm Julia." The problem was her I'm Julia shirt was too wet to wear! So we switched her to one of our extra shirts and my sister & my friend helped rig it so she could wear it around her waist.
By the time the walk started, the rain stopped and it was a beautiful day. It was so great having our friends and family by our side walking for a common cause.
Our team goal was $2500 so that we could qualify for a team tent.
Thank you to all of you. Those who walked, donated, supported one of our fundraising events, or wished us well, thank you. As Julia said, "It makes my tummy bubbly and my eyes watery," to have your support.
Tuesday, November 8, 2011
Today I Remember, Tomorrow We Celebrate
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| This picture was taken the day before diagnosis on my mom's cell phone. |
I have already written the story of her diagnosis but lately I keep thinking of one doctor we met. It was in the E.R. and it was brief and I have only recently come to fully understand that meeting. She was so grave in the way she spoke and looked so worried and was explaining some of the tests that were being run and that we would know more when the results were in. She was worried about the how acidic her blood was and whether or not there was cerebral edema. The next time we saw her the results were in and she looked so much more relieved. She explained that the acidity in Julia's blood was not as high as she expected and that her treatment would be much easier.
Like I have said before, I did not understand the seriousness of the situation. In my mind, the pediatrician told us it was diabetes and so we are at the hospital and they would show us how to get her healthy. I assumed that there was nothing worse that could happen than the diabetes diagnosis. We were very lucky. I just recently read about a family who was not so lucky. You can do so here if you choose.
Please read the signs and symptoms of type 1 diabetes. If you or someone you know is exhibiting symptoms please do not hesitate in getting them medical attention.
| Warning signs of T1D (these may occur suddenly): | |
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(taken from www.jdrf.org)
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Thursday, November 3, 2011
A Day in Our Blood Glucose Life
I have written before about our daily schedule but that just looks at the time frame. Today I am putting it all out there. I have taken a page from Julia's logbook (10/28/11) and I am going to share with you her blood glucose (BG) readings for the day. Every time we get a reading, she gets poked with a needle.
7:03am BG 68 Julia wakes up saying she is feeling shaky. That is how she describes a low.
7:25am BG 123 Recheck and before breakfast test combined. This is a much better start to the day.
10:07am BG 50 She told her helper she felt shaky. This is at school during class. I get a text with this info.
10:24am BG 125 Recheck and recess time check. I get another text with this info.
11:48am BG 83 Lunchtime check. Another text for me.
4:09pm BG 54 Julia is feeling shaky again. This is at home.
4:24pm BG 111 Recheck - back in range
6:05pm BG 251 Dinner time check
9:53pm BG 307 Evening check. This is high. We give more insulin and will recheck in an hour.
11:00pm BG 370 Recheck - That doesn't seem right.
11:02pm BG 372 Recheck - Change insulin pump site in case of poor insulin delivery
12:05am BG 340 Recheck to verify new site is working - not coming down as much as I would like
12:31am BG 334 Recheck still coming down just slowly maybe it is working?
2:00am BG 383 Apparently it is NOT working. Another site change and insulin dose given.
3:01am BG 262 New site working. Time for some sleep.
8:29am BG 122 Let's see what today brings...
Julia's range is supposed to be between 70 - 130 during the day and 100 - 150 overnight. We have days that are terrific and in range. We also have days that are horrendous and nothing makes sense. Just because she is pumping and testing regularly does not guarantee that she will be in range. Everything can effect her blood sugar. Being excited, being nervous, physical activity, lack of physical activity, anything can send her low or high. We are told that a number is just a number not a grade but it is so hard to not look at the meter and think that it somehow reflects on your ability as a parent. Seeing a random 300 pop up can be so frustrating or stubborn highs that won't come down. And the lows. Lows are so scary. Hearing her say she feels shaky, seeing her get so pale, I hate it.
7:03am BG 68 Julia wakes up saying she is feeling shaky. That is how she describes a low.
7:25am BG 123 Recheck and before breakfast test combined. This is a much better start to the day.
10:07am BG 50 She told her helper she felt shaky. This is at school during class. I get a text with this info.
10:24am BG 125 Recheck and recess time check. I get another text with this info.
11:48am BG 83 Lunchtime check. Another text for me.
4:09pm BG 54 Julia is feeling shaky again. This is at home.
4:24pm BG 111 Recheck - back in range
6:05pm BG 251 Dinner time check
9:53pm BG 307 Evening check. This is high. We give more insulin and will recheck in an hour.
11:00pm BG 370 Recheck - That doesn't seem right.
11:02pm BG 372 Recheck - Change insulin pump site in case of poor insulin delivery
12:05am BG 340 Recheck to verify new site is working - not coming down as much as I would like
12:31am BG 334 Recheck still coming down just slowly maybe it is working?
2:00am BG 383 Apparently it is NOT working. Another site change and insulin dose given.
3:01am BG 262 New site working. Time for some sleep.
8:29am BG 122 Let's see what today brings...
Julia's range is supposed to be between 70 - 130 during the day and 100 - 150 overnight. We have days that are terrific and in range. We also have days that are horrendous and nothing makes sense. Just because she is pumping and testing regularly does not guarantee that she will be in range. Everything can effect her blood sugar. Being excited, being nervous, physical activity, lack of physical activity, anything can send her low or high. We are told that a number is just a number not a grade but it is so hard to not look at the meter and think that it somehow reflects on your ability as a parent. Seeing a random 300 pop up can be so frustrating or stubborn highs that won't come down. And the lows. Lows are so scary. Hearing her say she feels shaky, seeing her get so pale, I hate it.
Tuesday, October 11, 2011
Mommy Mantra
I saw this on a friend's wall on facebook last night (thanks Marte) and it really spoke to me as a D-Mom and as a mom in general. I hope it speaks to you too.
Sunday, October 2, 2011
Feeling Lucky
Last night we went to the 3rd annual Evening 'Round the Campfire. It is the big fundraiser for Camp Conrad-Chinnock. If you haven't read my posts about camp, you can read more about it here and see our pictures here.
We had a great night. We fancied up and headed to the Disneyland Hotel. I was excited to see some of the people we met at camp and hopefully feel that same sense of calm that camp
brought us.
I have mentioned before how thankful I am that we have the Gasparro family in our lives. Last night I was reminded of what a blessing they are to us. There were video montages throughout the evening covering different aspects of the camp and what it means to everyone involved. Several of the parents interviewed talked about how isolating diabetes can be. And although there are times when I feel alone, I know because of this family we never truly felt as alone as we could have at diagnosis and in our day to day with diabetes. They have been with us since day one and continue to be right by our side.
And while the entire evening was not exactly filled with calm, (Joe wearing a balloon hat literally as big as him, trying to have the kids eat catered meal and be an attentive audience, etc.) I left the evening feeling at peace. Seeing again and hearing the stories of the camp staff brings my heart such happiness. These young adults that happen to be type 1 who are so poised and such beautiful people really set my mind at ease for the future. They are so inspiring. I am so thankful that camp has come into our lives. I know that year after year camp will continue to be a safe haven for our family and for my daughter. She will always have a place where no one questions why she is doing what she is doing, where everyone understands how she is feeling, where she belongs.
We had a great night. We fancied up and headed to the Disneyland Hotel. I was excited to see some of the people we met at camp and hopefully feel that same sense of calm that camp
brought us.
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| Forever Friends |
I have mentioned before how thankful I am that we have the Gasparro family in our lives. Last night I was reminded of what a blessing they are to us. There were video montages throughout the evening covering different aspects of the camp and what it means to everyone involved. Several of the parents interviewed talked about how isolating diabetes can be. And although there are times when I feel alone, I know because of this family we never truly felt as alone as we could have at diagnosis and in our day to day with diabetes. They have been with us since day one and continue to be right by our side.
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| Photo Booth Fun |
And while the entire evening was not exactly filled with calm, (Joe wearing a balloon hat literally as big as him, trying to have the kids eat catered meal and be an attentive audience, etc.) I left the evening feeling at peace. Seeing again and hearing the stories of the camp staff brings my heart such happiness. These young adults that happen to be type 1 who are so poised and such beautiful people really set my mind at ease for the future. They are so inspiring. I am so thankful that camp has come into our lives. I know that year after year camp will continue to be a safe haven for our family and for my daughter. She will always have a place where no one questions why she is doing what she is doing, where everyone understands how she is feeling, where she belongs.
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