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...

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.

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.  

And thanks to all of our supporters, we reached our goal and more than DOUBLED it! At last check, we have raised over $5300!  

 We added the other thermometer onto our original one.  Julia loved coloring it in with every donation we received.  


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.  

Today I Remember, Tomorrow We Celebrate

Today is the day one year ago Julia was diagnosed with type 1 diabetes.  We have come such a long way but I can't help looking back on that day.

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):
Extreme thirst Frequent urination Sudden vision changes Sugar in urine Fruity, sweet, or wine-like odor on breath	Increased appetite Sudden weight loss Drowsiness, lethargy Heavy, labored breathing Stupor, unconsciousness (taken from www.jdrf.org)

Today I remember the heartache and pain of seeing my little girl so sick.  Today she is a healthy strong 6 year old and I am so grateful for that.  Tomorrow we will celebrate...