Day 118

well diabetes is really hard.. and is a lot of work.. and just kind of stinks..

BUT honestly I can say that some really great things have come from this trial in our lives... One of them happened last week.

Well several months ago Craig told me that he wanted to get his Eagle Scout Rank before he was 14.  He wanted to get his Eagle project done before then.  Ok, great!
Then he told me that he wasnt sure "what" he wanted to do, but that he knew he wanted to do something for the hospital.
I didnt really want him to just do a "collection" project.. I wanted his to really DO work , put a lot of time and heart into it..
When he told me his project idea, I was super excited!
He decided he wanted to host a carnival for the kids at the Childrens Hospital.

This was several months ago.  He has put in countless hours (with his dad) of sweat and hard work.. He chose and designed 6 carnival games. He had to get donations from several
hardware stores and also received some cash donations that helped immensely with supplies.

They built these games and worked so hard on them. He received a bunch of prizes donations of great thins for the kids at the hospital.  He wanted items that they could use in their rooms.. He had puzzles, slinkys, color books, markers/crayons, games, Legos and so much more!
 I am so proud of my boy!!

But again, to the point..had diabetes not entered his life, he may not have even thought to do this project.  Through his trials he has blessed so many people.  The night of the carnival 100 people attended... He said his favorite part was "the kids faces when they came in and as they had fun"
  The pictures tell the story..enjoy!!

 a couple games ready to paint.. I was happy to get my house and garage back after the event!

 shopping...

the ring toss game!

 each game was made from scratch.. sheets of wood and an idea!!

 Plinko.. the more detailed game of them all!263 tiny dowels were used to make this game!  each with the top painted a different color.. this game was a lot of work for Craig, but looked really cool!!

 target toss!

 these 2 put a lot of work into this event!

Diabetes is a huge trial but it doesnt overcome his life.. He triumphs above it! Great job Craiger.. You are such an awesome young man and we are proud of you for serving so many kiddos at the hospital and giving them such a fun night!!
Kids came in in wheel chairs, hooked to IVs, with neck brace even.. all ages from 2 years and up.  It was such a great experience to see the sweet kids enjoying their evening an just having fun!  
Many people can be bitter.. poor me.. but he has really turned this trial into something amazing.  I hope he continues to fight this disease with such humility and strength. 

Day 117

Because Diabetes is a family disease...

do our other kids have to get shots? no...
do they check their blood every day? no..

But honestly everything our diabetic kids do, affects our family..


Time..  The time we have for our non-D kids is much more limited.. Its sad to say, but its true..  Taking the time to go to meetings with schools, endo appointments, even just the time before meals to check glucose, add carbs and dose is time taken away from the family..  This was one of the hardest adjustments for my non-D kids.. They felt unimportant.. because their needs were set aside because of the urgency of our D kids..
Thats hard for a parent.. You want all of your kids to feel loved and appreciated.  But the fact is, when your diabetic child has a blood sugar of 52 and you have to run and get them a juice, monitor them and recheck, that is the most important thing at that moment..



The expenses of diabetes affects our family.. I now work 30 hours a week outside of the home to help pay for the diabetic supplies.  This is the first time in 10 years that I have worked outside of the home.. Clothes arent washed, dishes not done and dinner not always ready because I am working.  My kids have to get ready for school by themselves because I am at work by 630 am.  These arent life changing things, but they are definately changes..and adjustments made because of diabetes..

The exhaustion of it all... lol, yes, when mom is getting up at night to check glucose..and sometimes up several times due to lows, or highs, she is tired!!   Sometimes I feel like a zombie!  I never get a real nights sleep!  on top of it, keeping up with all of the kids' activities, homework, and life is exhausting!!  So im a little grouchier, a little less patient (ok, a LOT) ..

Although there are a lot of changes a family does when a child is diagnosed, you do it all as a family.  We go and volunteer for JDRF as a family..
We do the Diabetes walk as a family..
We go through this journey..as a family.
We support eachother adn do our best to make everyone feel oved adn important. 
Our non D kids know that this is a life threatening disease and they help look after their siblings.

Just the other night I was downstairs watching a movie..
My son text me and said , "Madi just woke up and was sweaty, she might be low.  But she went back to sleep"
I ran up to check her and she was 63.. what would have hapened if he didnt tell me and she just slept? maybe a seizure? I dont know... but how thankful I was that he told me and knew what to look for.  He knew it was important information and let me know immediately!  He is 12. 

Day 116

I feel so bad that I havent been blogging..I just started a Mon-Friday job to help pay for all of our "new" expenses... Who knew diabetes was such an expensive disease?? I didnt thats for sure!!
Every Friday I post a "why we walk" post on facebook.. Here was Fridays...

why we walk.. I now have an mon-friday job.. Which I have not had in a very long time.. why? because the monthly cost of diabetes is SO much.. And we have amazing insurance... but what it doesnt cover every month adds up..
home owners Insurance on insulin pumps $120
Insulin $50
Glucagon $25
Pump and meter care (batteries, pouches, ect) $30
Juice boxes $15
Glucose tabs $10
Protien bars/jerky $50
Free snacks $20
Gatorade $15
extra supplies $100
Doctors bills $70
$505 extra in bills per month just from diabetes, and Im sure Im leaving something out! we want a cure!!
http://www2.jdrf.org/site/TR?team_id=81558&fr_id=2410&pg=team


We are walking this year and each friday I post a reason we fundraise and why we need a cure..  

on another note..
Today at church Madi had to check her glucose.. She started checking and a little girl said "Ew.. thats disgusting!'

I felt so sad for Madi... She has to do it and she is so used to doing it now that I guess I didnt think someone would think its gross...It made me sad to know people will say those things to her.. although this little girl has no idea and was just saying what she thought, it still sucks!  Madi may have said the same thing before she knew anything about it you know?? but no mom wants to hear someone say that to their little girl....

Also this week.. Miss Madi and I got a pedicure.. Anyone elses T1 kiddo have really coarse feet?? Madis are so bad! It was nice for her (and I) to get pampered.. Havent had a pedicure in like 6 months!! Since I got paid I decided we needed one!!

Day 115

 I have really enjoyed making these pump/CGM pouches.  I love getting new orders and making custom pouches for all different people.  Here is a message I received today that made my day:
"Hi Teri,
We received the package. Oh my!!! If you could have seen the look on her face. She was so thrilled. You were so amazing to include the additional two chevron pouches! I cried with joy....just to know that there are still nice people like you in the world. You made our day. You know how much these T1D kids go thru. It's so nice when something lovely comes from it! Thanks again! I have already emailed my T1D mom friends to share with them your store on etsy. Thank you for your wonderful thoughtfulness. The pouch and belt are adorable!
With appreciation,
....stacie"

I can make them for any pump and have a ton of fabric.  Just let me know what you/your child likes and I can send you fabric options!!

Like me on FB:
https://www.facebook.com/MadiolaDesigns

Or check out my etsy!!
http://www.etsy.com/shop/MadiolaDesigns

Day 114

this is diabetes today.. and it breaks my heart..

A kinked pump tube (cannula) :
meaning she wasnt getting insulin for who knows how long.. making her upset, hungry, sick feeling and her blood sugars in the 300s..
She woke up and came downstairs feeling "really hungry" so I checked her blood adn it was another high, so we took her site out.. and this is what it looked like.
A clear kink in the tube. 

Not a happy little girl.. my sweet Madi....I hate this disease and what it does to her..

Day 113

Landon was working on a school project where he had to artistically make a poster about his life... He did it in pencil so I traced it in a this sharpie for him.. Then I cried... Here is what he wrote about his life: 

 "When I was born I met my brother. We loved to play and were best friends. Then what seemed like a short while, my little brother was born. As we got older we learned baseball. We played in our backyerd, I loved it. I used to love school but I dont anymore. In a few years my sister was born. When she was born, I learned to care for her. But I didnt know that everything would change one night. Craig told me he had diabetes. I was confused because I didnt know what it was. But in a few months, I did. One day after school I came to the car and my mom said Madi has diabetes too. My mom cried.. Madi hates it. And that is how my life was changed. That was last year."

And now Im crying again.. No one knows how things affect each person in a family.. and how a lifelong disease affects everyone.. We have all noticed a huge change in Landon since all of this.. He is much more closed off and harsh.. It broke my heart to read this.. I love my boy so much!! My sweet Landon

Day 212

A year and a  half ago, I knew absolutely nothing about T1D.
January 2012.. Our 12 year old son craig just wasnt feeling right.  He was constantly tired and eating.  I figured he was just growing..
He was always thirsty and having to use the bathroom every 20 minutes. Thats when we knew this wasnt just a growing 12 year old, something was wrong. 
I took him to the doctor assuming he had some kind of infection or something.  I waited in the waiting room as he went in because, well he was 12 so he was "too big for mom to come".
I figured he would come out with a prescription and we would be on our way. 
The door opened and the doctor called me back.  He sat me down and said "I think your son has diabetes"
I looked at my healthy, active, young boy and wondered how this could be true.

 

The doctor explained that it was an autoimmune disease and sent us home to get some labs done the next day.
Well, the next day, he was sent to the hospital and was there for 4 days.  My heart was broken.. I wished I could take this disease from him..

Our life quickly became a lot more complicated. Days were filled with finger pokes, calculations, insulin shots and a lot of worry.
Craig was getting 6-7 shots a day, fighting highs and lows, learning to live with this lifelong disease.  He had to adjust at school, and with his baseball, he had to sit out if he was too low to play, he had to do a lot of things that most kids cant even imagine.

Just 3 and a half months later our 4 year old Madi was showing some of the same symptoms, going potty every 20 minutes.  I wouldnt let me mind go there.
I thought maybe she was just being a 4 year old who was having too much fun she didnt have time to go potty..  My husband took her to the doctor and again I really thought she would just get a prescription and be fine.. I called him to see if they had gotten to see the doctor yet and he said "well, we did and now we are on our way to the lab, they think Madi has diabetes too"
My heart broke again.. I just couldnt believe it.
That day we ended up in the hospital with her blood sugar up in the high 400s.. We were there for 3 days..

We have learned to deal with the daily struggles of Type 1.
We have learned that anything can affect a persons blood sugar.  Stress, illness, excitement, activity, even sleep.  On a daily basis they do calculations, finger pokes, shots, and struggle to keep their numbers in range.  We have had several 2 am lows, which involve their blood sugar dropping, me running downstairs to get juice and and waking them up to drink.  Their sleep is completely interrupted, their life is filled with responsibility, worry and a lot of pokes.   In one year, each child has at least 2500 finger pokes and 2000 shots.. per year. 

Anything they do, they have to constantly be checking their blood sugars and insulin to make sure they are in a safe range.

These kids cant  go swimming ,
 
 play a sport
 
or do anything without focusing on their diabetes and making sure they arent too high, or too low and have a seizure.  Their bodies go through ups and downs on a daily basis.. It is a lot for a child to worry about.

Type 1 diabetes is a 24/7 disease.. It doesnt care if its a holiday, if you have plans, are on vacation or even if its your birthday.  Madi spent her last birthday in the hospital with complications of this
disease.
 

This is why we walk and fund raise. For these 2 kids.

.and for all people with T1D around the world.
I fully believe there is a possibility for a cure in their lifetime.
There are trial happening right now, transplants, beta cell testing, bionic pancreas testing.. 
We raise money for a cure.. for research.   With your help, research can continue.

I asked Craig to tell me what a cure would mean to him..
"life with a cure would make me feel more secure.  My life would have less worries.  I could play baseball and do things I love, and do them like a normal kid.  I wouldn't have to get shots and finger prick several times a day. "

then I asked Madi, what she would say if there was a cure and she said "Yahoo!"

So this is why we do it all... we raise awareness and funds for research so they just be kids.

 http://www2.jdrf.org/site/TR?team_id=81558&fr_id=2410&pg=team