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.

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.

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.  

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."

Magic Numbers

There are some number I absolutely love to see.

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

Woo Hoo!  Diabetes win for us!

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.

Julia & Uncle Tony at the JDRF walk in November

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!

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.

Joe catching

Our family has been busy lately in the midst of softball/baseball season.  Practices and games take up most of our time.  Bubba is managing Julia's team, The Heartbreakers, and assisting for Joe's team, The Reds.

Julia up to bat 

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.  

Relaxing with cousins

I love how her hair in flying in this picture!

Joe hunting for eggs

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.

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.  

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.  

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.   

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.
    

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...