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.  




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!

Sunday, November 18, 2012

JDRF Walk 2012

video

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.

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.   



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."