Sunday, August 29, 2010

A Moment in Time

The Jonas Brothers concert totally rocked!  Those guys are talented!  I absolutely enjoyed it and loved being there with Taylar.  I've been to many concerts but it has always been with my hubby and sister.  It was different, but great being there with her.  She screamed, danced and sang along through the whole show (Blood sugars pretty high all day because of all the excitement too, but I told myself it didn't matter that day.)  Even though we were surrounded by mostly teenagers I was singing and dancing along too.  Hey, If you knew what we spent on tickets you would have lived it up too!

During the show there was a "moment" that made it all worth it.  I don't even know if you'll understand it but I have to tell you about it.  First of all, the name Nick Jonas has become a household name around here.  We talk about him checking his blood sugars and what he would chose to eat etc.  It's pretty funny but when you listen to their music every single day and have such a strong connection of knowing he has type 1, you start to feel like you know the guy.  Taylar has written letters to the Jonas Brothers and everything. 

Anyway, Taylar had made a couple of signs for the show.  Our seats were dead center 3 rows from the stage.  Yes, I said 3 rows!!  So needless to say when they were singing to us they were literally right in front of us. So here comes Nick down toward the front of the stage playing his guitar.  Taylar held up her sign that says, "Nick, You're my type 1".  Nick looks at her sign, reads it, looks right in her big brown eyes and gives her the cutest smile and nod as if to say, "oh, you have type 1 like me. I get that."  Taylar put her sign down and gave me the biggest giggly hug ever.  Meanwhile I was trying not to cry seeing how happy she was and how much this meant to her.  She was so happy to actually "tell" Nick that she was like him.  They have something in common that a lot of people just don't understand.  It was definitely a "moment" she won't forget.  Even the people behind us said, "Oooh, he just read her sign!"  They were happy for Tayar too.

Nick and Kevin.  Yep, we were THAT close

I don't know if you can understand why this was such a big deal to us but it really was.  Taylar looks up to Nick Jonas.  She looks up to him because he is living out his dreams of making music, making movies, traveling, making tv shows... all while living with type 1 diabetes.  He is a perfect example of "you can do anything you want to do".  He does not hide his diabetes and he refuses to let it stop him.  Who wouldn't want their daughter looking up to someone like that?  That's not even to mention that at his age, Nick Jonas is also the National Chairman of the JDRF Walks to Cure Diabetes this year!  Check out his video message here.

Monday, August 16, 2010

Jonas Obsessed

Taylar has always loved music and dancing.  It really is something she is passionate about.  This year will be her 5th year of dance lessons and there is always music playing in our house.  So enter a music group with a band member who has type one diabetes and you have one obsessed kid.  Taylar is officially a bit obsessed with the Jonas Brothers.  The youngest brother Nick who has type one like her to be exact. 

On the anniversary of her diagnosis my husband and I gave her tickets to one of their upcoming concerts!  We spent waayy too much money on these VIP tickets but it doesn't matter.  She deserves it.  It was the perfect way to tell her how proud we are of her and the way she has handled all she has been through during this past year.  Finger pricks, carb couting, multiple daily injections, switching to a pump... it has been a lot and she has handled it like the "rock star" she is.

 Nick Jonas wrote a song about his diagnosis when he was 13 years old.  Here are the lyrics:

A Little Bit Longer

Got the news today

Doctor said I had to stay

A little bit longer and I'll be fine

When I thought it'd all be done

When I thought it'd all been said

A little bit longer and I'll be fine

But you don't know what you got 'til it's gone

And you don't know what it's like to feel so low

And every time you smile or laugh you glow

You don't even know, no, no.

You don't even know.

All this time goes by

Still no reason why

A little bit longer and I'll be fine.

Waitin' on a cure

But none of them are sure

A little bit longer and I'll be fine

But you don’t know what you got 'til it's gone

You don’t know what it’s like to feel so low.

And every time you smile or laugh you glow

You don’t even know, no, no.

You don’t even know, no, no.

You don’t even know, no.

But you don't know what you got 'til it's gone.

And you don't know what it's like to feel so low, yeah!

And every time you smile or laugh you glow

You don’t even know!


So I'll wait 'til kingdom come.

All the highs and lows are gone.

A little bit longer and I'll be fine.

I’ll be fine.

Sunday, August 8, 2010

OmniPod Arm Bands

Taylar has been using the OmniPod for three months now.  We haven't had any pod failures that others have warned me about, and overall we are very happy with it.  There have been a couple times, however, that the pod has been knocked off accidentally.  This occurred when Taylar was wearing the pod on her arm.  Well, the only solution I could think of was wrapping the pod to her arm somehow.  I used an ace bandage type thing, a wrap by 3M that sticks to itself, and a sock cut off above the heel to create a cuff.  These things worked but were not exactly the best.

Enter me being obsessed by finding a band that works and my mother in law.  She can sew anything and makes the most beautiful quilts you've ever seen.  To my advantage, she loves it.  She has even made clothes for the girls which is a nice.  Me?  Nah.  I can cook, but don't ask me to sew.  Maybe a button or two but it's really not my thing.  Anyway, I ran the idea of some kind of stretchy arm band by her and voila, this is what we've got!

These are the two bands my mother in law came up with.  They are made out of spandex which I thought would be nice and stretchy but would hold the pod in place.  Taylar says they are comfortable to wear.  The flower decal is a nice added touch.  Because it is made of spandex, Taylar wears hers in the water too with no problem.

The only change since these pictures were taken is that we (by "we" I mean my mother in law! I don't sew remember!?) added a bit of elastic half way around the top and bottom of the arm band.  This really keeps it from sliding down over the smooth pod.

I told her we should market them because I've found nothing like this around!  Pod users...what do you think?

Tuesday, August 3, 2010

A Date I Can't Forget

August 4, 2009

One year ago. On that day I was told that my then 7 year old daughter Taylar has type 1 diabetes.

One year ago today...

I felt like I was outside of my own body as I listened to my daughter cry and yell "I want to go home!" while a nurse put an IV in her small arm.

I watched with a queasy stomach and fear of needles while my daughter received numerous insulin shots every few hours that doctors said would lower her 700+ blood sugar level.

I watched Taylar while she slept in her hospital bed and finally let myself cry about her lifelong diagnosis.

I learned words like hypoglycemia, autoimmune, hyperglycemia, ketoacidosis, insulin, endocrinologist, glucagon, humalog, NPH, glucometer, and hemoglobin a1c.

I remember being gently reprimanded for letting Taylar eat a snack that I didn't realize should have been saved for her next snack time, two hours later.

As I lay in the darkness of the hospital I pictured Taylar going to college and calling home saying she forgot her medicine and how frantic I would be. I pictured her wedding day and made a mental note that she would need a short sleeved dress for shots, and thought of how much I will worry about her health if she and her husband had a baby. Suddenly, although she was only 7, her life flashed before me knowing it would be different now.

I took carb counting classes and a lot of other training sessions that completely exhausted me.

I didn't eat.

I didn't sleep.

I didn't know how I was going to handle all of this. I couldn't help but focus on the foreverness of this disease.

One year ago...

I fought off the nausea that was rising in my stomach and drew up a needle full of insulin and injected it into Taylar's arm knowing I would have to do that every single day, multiple times per day if I wanted her to be healthy.

I began to hate math even more than I did in school. So THIS is what they meant by saying, "You may need this math some day."

I reluctantly cleared out a kitchen cabinet and filled it with diabetes supplies like syringes, alcohol swabs, insulin, glucose tabs, lancets, lancing devices, blood glucose meters, blood glucose test strips, bandaids, ketone blood strips, ketostix, the ever-feared glucagon, a few log books, Calorie King, lists of important phone numbers... and anything else I may have forgotten to mention.

I began to face type one diabetes head on without an opportunity to ever, ever stop.

I cried often. I was hurting.

One year ago our lives changed.

----fast forward----

August 4, 2010

In some ways it seems like this last year has flown by but at the same time I feel like I've been doing this diabetes thing forever. It's a strange feeling. And now that it is one year, what do we do? Celebrate it? Ignore it? It's a weird day.

Now that I am in a better place emotionally and mentally, I can look back at those first few weeks I can see how far we have all come. I eventually got over my sick stomach when giving Taylar shots and I found a good calculator to help with calculating carbs and insulin! I try to not think of the foreverness.... but on bad days it's hard not to. We have participated in one JDRF "walk to cure" and I am on the walk committee for the next one. I am trying to educate people and raise awareness about type one diabetes by manning a JDRF tent at a local community event in September. Yes, I have come a long way. But you know what? It's not really about me. Let's talk about Taylar here.

This girl is amazing. The daily routine that she has put up with for a year astounds me. She is just so brave and strong and amazing and happy and....She inspires me! I could go on! She has also inspired others as well. Her nurse used Taylar as a "model" for a young girl deciding if she should go on a pump or not. Taylar sat in on their appointment and answered questions the girl and her mom had like a professional. When the appointment was over and the door was closing I heard the girl say, "I want that pump Mom."

 I received an email from a friend of mine, sent to me, but addressed to Taylar, about two months ago. Her son was diagnosed with type 1 about four years ago and absolutely refuses to talk about using an insulin pump. In this email my friend went on to tell me that because of seeing how brave Taylar and how she is handling her diabetes, it encouraged her to talk more with her son about using a pump. She used Taylar as an example and actually thanked Taylar! Just for being herself. Oh, his pump start date is in 5 days.......

Not every day in the life of diabetes is a good one, but nine times out of ten, my girl doesn't complain. I don't know how she does it. I am truly blessed.  It doesn't mean that we don't have bad days or that I don't cry anymore.  I feel safe here to say that I still do sometimes.  The difference is that I now know better how to handle things.  I can count carbs.  I know what numbers mean and how to calculate them.  I can draw up a syringe and give injections if I have to (although I'm sure glad Taylar's pump does this part for me now). I have the confidence now to do it.  I can do this.  I never thought I would say that but here I am one year later actually starting to believe it's true.