Sarah's Story

Dear Friends and Family,
I can't believe it is already June 2.  This day has been looming over my head and creeping up.  It is not a day that I choose to remember, but here it is and I can't believe it, but so are we.   This has been an amazing year for our family and for Sarah.  Our lives have been turned upside down and inside out and we've landed on our feet.  We've settled into our new "normal" and even though life is still very hard, it is still very good!  Sarah is the most amazing girl.  I can't believe how well she has adapted into her new life and with such spirit and happiness.  She is courageous and so strong.
I've put together a video about her diabetes and her new life.  Please take the time to watch it with an open heart and an open mind.  This is our life every day, every hour.
We are walking on August 22, 2015 in Idaho Falls to support Junior Diabetes research.  For Sarah, it's something we have to do.  We need to support her and all the other children who deal with this disease.  I invite you all to save the date and to come and support her in this walk.
Please let me know if you plan to join us and I will order a shirt for you and tell you how to join our team.  Thank you for all your support.  We love you all.

A Good Experience

2 weeks ago at a very small and informal Diabetes conference at the college, we got to listen to a totally inspiring story of Miss Idaho's diabetes diagnosis and the reasons why she chose to pursue Miss Idaho and Miss America.  It brought tears to my eyes as Sarah sat there and listened to words of advice about not trying to be what your peers want, but to figure out who you are and be the best you can.  She learned about using your disability to make something awesome out of your life.  Until now, Sarah has been so admit about not having a pump, tonight was the first time she's actually considered it.  Through Sierra, she saw that a pump does not hinder your beauty or make you weird. 

Carb Counting Mama

I just counted my 915th meal (that doesn't count the many, many desserts and snacks in between).  It would turn you into a carb zombie too! I am a pro.  

Before and After

I think in the rest of the family's sees Sweet's one years diabetes mark would be June 2nd because that's the day she was diagnosed.  It goes back earlier for me though, because it was in March that I started to notice a difference.  I cannot blame myself for not knowing something was wrong at that time.  It was a very slow progression and as everyone knows, small changes over a long period of time go unnoticed.  She was just extremely thin.  I can, now, compare pictures of her and see how sick she looked.

I had to go and delete all the pictures of her from March to June of 2014 because they make me soooo extremely sad.  My baby was very sick and we didn't know, but the pictures tell a different story.

This picture of her with the flower in her hair was the only one I allowed myself to keep and I can barely look at it without breaking down.  I remember this day so well.  It was nothing special, just a first spring walk along the canyon rim. 

So as I reflect upon the last few weeks of March, my heart is filled with feelings I cannot explain.  I won't try because, quite frankly, unless your a T1D parent yourself, there is no way to understand no matter how willing or how hard you try.

                                April 2014                                                             March 2015

These girls are two very different girls.  Sweets would say, the one before diabetes and the one after diagnosis.  She has changed and she knows she's not the same girl.  Anyone would say in shock "of course she is.  Just because she has diabetes doesn't make her different. How can you say that"?

Well, in retrospect, her personality hasn't changed.  Sweet's hopes and dreams, likes and dislikes, sassy attitude and all are all the same as before,  but she is physically changed and her life is changed.  A part of her (her pancreas) has died and that has changed her forever.

Sweets is a special girl full of extreme energy, drama, emotion, and fortitude.  There is nothing halfway about this kid and anyone who has lived around someone who is that dramatic about anything and every detail in life, knows that it can be an exciting roller coaster ride full of ups and downs. 

I can't go so far as to say that she has embraced her disease, but I am surly surprised at how well she has taken it and at how much she has learned over the past 10 months.  There is nothing, and I mean nothing, that she hasn't done, that she's wanted to, because of diabetes.   She has not self -pitied or cried or complained about life.  She is not depressed or sad.  She wishes she didn't have it, but who wouldn't.  She understands that she needs to keep herself healthy and will make good choices in what she does and doesn't eat to keep her levels steady.
I wish I could write post after post of awesome things that we've learned, or people that we've come to know, or how diabetes has impacted our lives for the good, but actually.............(and I am not trying to be negative) there really isn't.
All I can write about is our experiences and what is going on.
So here it is.......March......a year from when I first noticed something different about Sweets......and it's been a rough week emotionally.
I am just so thankful that she survived.....that our family is still in tact after this crazy year......and that she's happy.

T1D fears and night checks

Last night we had to try and try to tell Sarah that she was ok to go to sleep.  I felt so sad to think that my daughter was just laying in bed trying not to fall asleep because she was afraid she was going to die that night.  She has to put her complete trust in us and the only reason she allowed herself to sleep is because of that.   I can't imagine being just 11 years old and having to live with that fear.  It makes me want to punch something.

There is a possibility that an unknown

  low blood sugar could make someone with Type 1 Diabetes slip into a coma and die in their sleep, but there are also precautions to take to make sure this doesn't happen and it is rare that someone is neglectful enough to let it.  Still, the possibility is scary enough that I do check her BG in the middle of every night.  Not every T1D parent does, I don't necessarily need to either because she is never low because we know how to prevent it.  Still, the nagging possibility propels me to her room in the middle of each night.

A snippet of the last few moths......a snippet

-Measured our pizza with a ruler on Friday and measured waffles on Saturday.  Weighed rolls on Sunday, weighed a banana Sunday night, weighed a potato on Tuesday.  Counted out blueberries on Wednesday morning, counted out pretzels Wednesday for snack, measured out popcorn with a cup on Wednesday night.  So goes the meal prep, every day, every meal.

-The other day I was driving by myself in the car and was extremely hungry.  I had not taken the time to eat breakfast.  I looked over and saw the bag of Pepperidge Farm cookies sitting in the passenger seat.  I immediately scarfed down three.  Then I almost threw up and started to cry as I realized what I had just done.  Just the other night Sweets was asking for one and I had to tell her no because there were too many carbs in one to eat without taking insulin and it wasn't a good time for me to be giving her any more insulin that day.  I had just eatin' three of them.  I took advantage of the fact that my pancreas worked, and without me thinking of it, ate three of something my daughter had begged and begged for.  I felt, and still, feel awful.  I didn't need three cookies, they weren't good for me anyway, and here I sat stuffing my face with them.  I felt so guilty for taking advantage of something my daughter fights for every day.

-Sweets got sick the day after Christmas and it seems like, whenever she gets sick enough to be down for the day with a fever, it messes up her levels.  Not for just the day, but for good. We were also out of town.  I waited it out for a week and they never went back to how they were with the ratio's and doses she was on.  I tried to move her carb ratio up, but that did not work.  So I checked her Ketons each day and finally called the endo because that's what I do when I consistently see levels in the 200's for every check.  What?  Endo's aren't suppose to go out of town for a week!!  Luckily she had a Ped's appointment in a couple of days.

-  Before our Ped's app. we went out of town again.  I have never had to check Sweet's Ketons so much as I have in this week.  Alas, I forgot her Keton strips and she measured over 300 when traveling to our destination.  We just about turned around and went home.  We did decide though, that diabetes was not going to rule our lives, so we stopped at a Walgreens and then at a Walmart to find Keton strips.  Who knew they were so popular?  Walgreens was out and I picked up the last box at Walmart.

-Sweet's numbers were creeping and creeping up week by week, so a call to the endo fixed that.  We have now split her Lantus into two seperate doses.  6 units in the morning and 6 units at night.  Amazing!!!  That fixed everything.

- Today Sweets mentioned to me that no one ever.....ever invites her over to play.  She told me she thinks it's because she has diabetes now and no one wants to bother with having her over.  I cried that day.

- Big day for Sweets.  She got her favorite Lofthouse cookie for a Valentine's Day treat in her classroom.  I never do this......but I gave her 3 units and let her eat it all.  See how happy she is?

-Ugh.....insurance is not covering her short term insulin (Novalog) anymore and they are making us switch to Humalog.  Our endo talked to a pharma rep and she got us a sample of a half unit dosing pen and a vile of Humalog to go with it.  Not many patients use the humapen that comes in half unit doses.  I am happy that we got a free pen and a sample.  It's a very pretty pen and comes with it's own leather hard bound case.  It looks a bit like something a pair of eye glasses would come in.  The pen is a pretty emerald green and sweets has decorated it with stickers.

- Steady numbers, averages looking good and are going down.  Sweets has an appointment with the lab this week on Thursday.  They are taking blood and checking her thyroid because she is not gaining weight (she only weighs 67 lbs) and there are other sypmtoms as well.  Also they are checking for Chron's Disease.  I have not told her she is going in for testing.  I am just sure she will be crying.......(I will be too on the inside, but confident for her on the outside).  Blood draws have always made me afraid.

Hide 'n' Seek

One of these things is not like the other, can you see it?  Kudos if you know what that is.  I have found them on the garage floor, in Sweet's bed, on the kitchen floor, under the car mats, on the window sill, under the rug, in the bottom of my purse, in between couch cussions, and on the kitchen counters. 

She goes through 5-8 of these a day and will test herself wherever she may be at that time.

Test Strips.......expensive little buggers!