JDRF

Since Craigs Diagnosis we have really stuck with JDRF as a way of coping with it all.  Helping, advocating and educating really helps us get through it all.

 This year we did a coin drive at Madis school. The amazing school full of awesome students brought in over $900 in coins!! I couldnt believe it!!

Today we went to my older boys school.  Craig spoke at teh assembly along with Nick Boynton.  I met him through my Heroes of Type 1 project and hes super nice.  He and Craig did such a great job at the assembly and it was great to hear their different perspectives and stories.  Next week we have a Dodgetball tournament at the school, a dress down day as well as a school walk on friday! 

Im thankful for the opportunity we have to help out JDRF and that my kids enjoy it and are not shy about advocating!!

 Craig, Madi and Nick Boynton

 LOVE this one!! SHow off those pumps!

The school principal and our friend Mr. McComb!

November is Diabetes awareness Month!!

I am SO beyond excited to share all of the photos I have taken over the past month. 
I decided to do  Diabetes Awareness Project with my photography.  I have met 30 different people who have type 1 diabetes and photographed them.  It has been such an awesome experience. I have met some brave kids! and adults!  All with different stories and challenges. 
I will be sharing in November, but I thought I would share Madis picture. Each person gave me a quote on what they wanted people to know about Type 1 diabetes.  I will be posting one person each day in November, with their story and a quote.
It is so telling of each person when you read their quote.
 Madis quote might not seem that deep, but it reminds me that kids made fun of her and a boy said, "EW get away, I don't want to get diabetes!" and another kid told her it was disgusting that she had diabetes... She what does she want people to know about Type 1??
 "You won't get diabetes by touching me or being my friend!"
She is one tough girl, but it makes her sad when people dont want to be her friend because she has diabetes :(  

 I cannot wait to introduce you all to these brave people! Coming in November #herosoftype1project on instagram, Teri Lyne Photography on facebook, and Ill also be posting to this blog each persons quote with their picture!!

Is it November yet!????

Type 1 slow him down??? ppsshhh!!

Well, Craig decided to do dive this year.  He is liking it!  Its pretty fun to watch!  He wore his CGM the whole time.. Had to wrap it though.. We've had a tough time keeping it on for the 7 days with all this pool time!!  We have to wrap it with medical gauze.. waterproof stuff!  But it works for the most part... Hoping we can keep this one on for a whole week!! 

Craig never lets diabetes stop him from doing what he sets his mind to! He goes to Dive practice and if they dont have practice one day, he goes to baseball practice (open field or pitching practice for fall ball)  Some days, he goes to baseball.. then dive!! He is one driven young man!!

 

lots of stuff!

Its been a whirl wind around here to say the least!!
Both kids got approved for CGMs and they are both hooked up! 

 Its been good. and not so good.. We have been trying to problem solve since the start. First Madi was terrified to get the CGM site. Then she got it and it wasnt as bad as she thought.  We had a couple long nights in a row with lows.. Here is the second night of the kids on their CGM:

 "I think I should do a video diary for a night in the life of a d mom.... This is both kids right now.. Madis alarm went off so I got her a drink to bring her back up.. Craig had his in his room but I thought if check him.. Apparently he slept through his alarm because he was 43!!! I'll be keeping his in my room from now on. Both kids got juice, now I wait 15 minutes and hope their sugars come up.. Then they need a protien-carb food.. Sleep is not in my future."

I kept thinking, "I shoudl be getting more sleep..right?"
But the great thing about the CGM is the alarms!! theres so much less guessing! I love that.
One problem we are having is with Craig.
 He is doing baseball and also is on the HS dive team.. SO he is in teh pool A LOT! they sensors dont want to stay on. We have tried skin tak.. and Tegaderm.. Now he put the site in his arm and is wraping it with waterproof medical tape so we will see if that works better!  Any ideas are welcome!!

Im also taking a break from making pump pouches/belts.. I have been so busy with working 6 days a week, having 4 kids (2 with T1) and Im starting school in 2 weeks!  I will do custom orders if you email me though.. And I kept a few glucose meter cases up on my Etsy Page.  I felt so guilty taking them down because I know how nice it can be to have a new case.. Kids get excited about it.. but I just only have so much time in the day!

Both kids have started school! Madi is in 1st grade and her teacher is great!! Sh e even doses her for snack time! And Craig is a Sophmore (really?!)  and he is pretty independent  so he does everything himself..

Another exciting thing is that Craig was chosen to be a JDRF youth ambassador! Im eso proud of him that he isnt shy about talking about Type 1.. he isnt scared to tell his story, educate others and advocate for this disease! Excited for the things to come!

Love finding new things..A back to school MUST HAVE!

SO.... yesterday I found there perfect little snack bags.. Theres a size also for a whole lunch, but I found the smaller size and thought it was awesome!!
PERFECT for carrying meters on a hot day, insulin for a day trip, or any diabetic supplies for school, away sports games, ect!!
They had several colors.. We got a cute leopard print for Madi and just plain black for Craig.  They were only $11!!!
Last year I bought one of these style bags for Madi for her lunch and she will use it again this year! They last a long time and are well worth the price! 
SO, you put the whole bag in the freezer and the inside freezes.. It keeps items cold for hours!
We live in Arizona so these are super!

how was your summer!??

 well we are back from a 2 month vacation.. (Our paperwork is turned into the insurance!! Hoping the kids get approved for a CGM!!)

Back to school is right around the corner!

That means meetings with teachers, packing diabetic supplies, school shopping, teacher training, and preparing our kids for another school year. 


When you have a T1 kiddo, back to school is a lot more than just school shopping and sending them off to school..

Here are some things we do to prepare our kids AND the school for another school year with T1.

• Prepare the nurse:   for us, this means taking in a small tub of items my child will possibly need through out the school day.  Both kids will have items in class and their backpack, but here are items we give to the nurse:

     *carb/protien snacks like crackers and PB, pretzels & yogurt
     *boxes of juice and tablets
     *extra pump battery
     *Glucagon
     *Alcohol wipes
     *A meter for the nurses office 
     *extra test strips
     *extra pump tubing
     *Ketone strips

• Prepare the teachers & teaching staff:  I need to go in and train the 1st grade staff (all staff just in case her teacher is absent at any time).  We will cover what T1 is, high/lows, Glucagon, warning signs, carbs & intake, checking glucose, quick sugars and more.  Teachers will be able to ask questions     After the meeting, we will make sure that her teacher had the following items in class:

     *juice & tablets
     *carb/protien snacks like crackers and PB, pretzels & yogurt
     *extra test strips
     *a meter for the classroom
     *no carb snacks like beef jerky
     *Handouts of signs of highs/lows
     *A substitute paper with a photo of Madi on it for easy recognition in case of a sub
     *she will also have a very small bag to take to recess with a meter, glucagon and quick sugars in it.  I got a pencil bag that had handles and fit everything perfectly!!
    

•  Meet with school staff, principal and nurse to create a 504:  luckily we have a great school that we probably dont even need a 504, but I like to have one anyway.  Some specific things we put in her 504 are:

     *A parent is able to go on all field trips or a nurse will be sent
     *I will get a call if she is above 300 or under 80
     *absences diabetes related will not could against her
     *her carb ratios and a doctors order
     *She will be able to test BS in class to have less access to sickness at the nurses office.
     *She will be able to wear her pump pouch and belts in any color or style she chooses (she goes to a charter school with uniforms)
     *If her BS is under 80 or aboove250, she will not take tests until she is within range
     *school will text me before giving her any insulin to confirm amount.
     *she will have unlimited access to water and bathroom breaks
     *much more specifics on her daily checks as well

For Craig, since he is in high school he is independent with his diabetes.. Meaning he doesnt really need help unless there were a crashing low and he were unable to take care of himself.  For this reason, I email all of his new teachers and meet with them for a quick T1 education meeting.  We go over his needs and what to expect from him (and the teachers).  

Here are some fun pics from our summer vacation!

 Madi did her first BMX race! Strider adn she came in 2nd!

 Fishing day!

 Running around and enjoying the tire swing !

 Cowboy Kids!!

 Riding horses!

Madi ate tons of berries this summer!!! e had a lot of fun picking berries and making lots of Jam this summer!

About Diabetes, from Madi

I asked Madi a few questions since her Diaversary is tomorrow.. here they are..

Me: What is the hardest thing about Diabetes?
Madi: Getting my inset because it shoots in my body and it really hurts.

Me: Why is it so important to take care of your diabetes?
Madi: Cause if you are really high a lot, you could lose a leg or go to the hospital and have to get an IV.  If you get low and think its not a big deal, then you dont do anything about it then you could pass out.


Me: Whats it like to get shots and insulin all the time?
Madi:  hurts hurts hurts!!   It hurts and sometimes I cry.

Me:  How do you stay positive about diabetes?
Madi: kissing my mom all day! My mom and my dad help me with my diabetes.

Me: What does it mean to "win the fight against T1 Diabetes"?
Madi: Try to help people and try to find a cure.

Me: Why do you want a cure?
Madi: Because other people um.. sometimes diabetes hurts and I dont want other people to get hurt because it hurts really bad, so I hope theres a cure so nobody else has diabetes. 

Me: What have you learned from diabetes?
Madi:  I learned about shots and I need help with my diabetes.

Me: What would you tell someone who just got diagnosed with T1 diabetes?
Madi: I would say, "I hope theres a cure for you because I dont want you to have diabetes.  I dont want you to get hurt, and diabetes hurts."

Me: What can't you do if you have diabetes?
Madi: You cant eat candy unless you get dosed.  You cant live without insulin.

Me: What CAN you do if you have diabetes?
Madi:  You can swim in a pool, read books, take pictures, go to school, talk to people...You can do anything!

I love her answers.. It gives such insight on a childs view living with this disease..
Its hard, It hurts, but they can still be a kid and "swim in a pool, read books, take pictures, go to school, talk to people...You can do anything!"
I love my girl!!

Another Diaversary...

This year we decided to do a photo shoot for Madis Diaversary again. last year we did the super hero theme.. These kids fight so hard every day to live a "normal" life.. They struggle with so many things.. highs, lows, sickness, ketones, pump sites, finger pricks, weird looks from people, staring, lots of questions from strangers and friends, the emotional rollercoaster of Type 1... Its a lot to deal with.. So this year I wanted to show how strong and brave our little girl is..What do you think?!

She fights everyday to live a fulfilling life despite type 1 diabetes.  I believe this is possible with a great attitude, lots of bravery and strength!  People could mope and feel sorry for themselves, or they could get up every day and fight this disease!  Is it hard? heck ya! but its a choice.. Type 1 doesnt have to stop you from living a happy, healthy life, but its definitely a daily fight!  We wont let Type 1 win!

 Love this strong girl so much!! We dont celebrate the disease.. we celebrate the strength, bravery and courage Madi shows while living with it! We are proud of you Madi, you are awesome!

We did a couple outside.. here she is showing off her pump site.. She recently prefers her stomach as her site.. which is interesting since before she wouldnt even try it!

Been a while

 Im not sure I have much to say but that its beena while since Ive posted.
Our family is in the midst of baseball season... 3 boys playing baseball keeps us pretty busy!!
We love it though!

One thing thats been hard lately is Madi's site changes..
she went to getting them fine to now.. now she cries at the words "site change"
She cries and trembles when we need to do a site change. 
Its so hard as a mom..
NO, I dont want to poke her with a large needle..
YES, she needs it to stay alive...
NO, I dont want to hear her cry adn see her fear in her eyes...
YES, she needs it to stay alive...

thats diabetes for ya!

Other than that, the kids are doing well. Craig is doing awesome and Im so glad he is so responsible with his diabetes!
In a couple weeks he will be speaking for a middle/high school at an assemble about Type 1.  Ill try to video it so I can post it here. 

My Pump Pouch business, Madiola Designs is going well.  I also have started making glucose meter cases adn also medical bags.  Its so fun to personalize them for the fabric and colors people like.  If you have to wear a pump or carry a meter, why not make it fit your style?!
Check it out
https://www.facebook.com/MadiolaDesigns

we asked our family and friends to wear blue for diabetes awareness in the month of November..
So many people do not know much or anything about Type 1 diabetes.  Im so thankful for our family an friends who have shown support by wearing blue. Its not just a color or a shirt.. Its spreading awareness and also makes my kids feel good to know the people are wearing blue in support on THEM! 

Last friday I posted this on facebook:
 
 Hey guys its Friday.. im thankful Craig isnt shy about his Diabetes. He will educate people about it and isnt afraid to. his baseball coach told me he overheard a kid say ”what, are you a drug dealer and thats your pager?”
And Craig said, ”no, this keeps me alive!!” (about his pump) he has spoken at several assemblies to advocate for this disease. He proudly wore his Jdrf walk shirt today...will you wear blue in support of Diabetes awareness today??
 He has had a lot of "comments" . one kid asked about his medical ID because he wears it every day. He said "it says I have type 1 diabetes" and the girl said "oh so its like Im so cool I have diabetes?" and he said "no, its like if I pass out or have a seizure, the ambulance will know that I have diabetes so I dont die"..she said, "oh...." I kind of expect it because kids dont know about it.. they have no idea what Type 1 is or how serious it is. Im just glad he isnt shy about telling them how it is:)

Ive had some terrible things said to and about me concerning diabetes and the fact that 2 of my kids have it... 
That its because I ate too much sugar pregnant, or that we feed out children unhealthy food. neither are true.. They are healthy active kids!  It was really hard at first to hear comments like these.. and Ive learned that people just dont know.. a lot of times when you educate them, they learn the truth.. and sometimes they continue to believe false facts about the disease.  I am happy to answer questions, before you say anything rude, maybe you should learn the facts! 

Here are some myths and facts about Type 1:
 (http://jdrf.org/life-with-t1d/type-1-diabetes-information/myths-and-facts/)

myth: Taking insulin cures diabetes.
fact: Taking insulin keeps people with T1D alive, but does not cure the disease. While progress toward finding a cure has been substantial, there is still no cure for diabetes.

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myth: Diabetes is caused by obesity, or eating too much sugar.
fact: While obesity has been identified as one of the “triggers” for type 2 diabetes, it has no relation to the cause of type 1 diabetes. Scientists do not yet know exactly what causes T1D, but they believe that both genetic and environmental factors are involved. Eating too much sugar is not a factor.

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myth: With strict adherence to a specific diet and exercise plan, and multiple insulin injections each day based on careful monitoring of blood sugar levels, a person with T1D can easily gain tight control over his or her blood sugar levels. fact: While the above strategy is the most effective way to achieve and maintain tight control of blood sugar levels, optimal blood sugar control can be very difficult for some patients. Many factors, including stress, hormone changes, periods of growth, and illness can easily cause blood sugars to swing out of control. Teenagers, in particular, may be susceptible to this problem, as their bodies go through many changes during adolescence. Also, some people with type 1 find that even though they strive for tight control and follow their meal plan and insulin schedule, they still experience rapid fluctuations in their blood glucose. Those fluctuations do not mean the person with diabetes has done anything wrong.

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myth: People with diabetes should never eat sweets. fact: Limiting sweets will help people with T1D keep their blood sugar under control, but, with advice from their doctor or nutritionist, sweets can fit into their meal plan, just as they would for people without diabetes. And there are times when sweets are a must: If the blood sugar level drops too low, sweets (or juice, or soda) can be the surest to raise it, and prevent the onset of hypoglycemia.

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myth: People with diabetes can’t participate in athletics. fact: Physical exercise is important for everyone’s health, and is especially important for people with diabetes. Regular exercise helps lower blood sugar levels and keep them in the target range. There are countless examples of athletes who have had great success, from Olympic Gold Medalist swimmer Gary Hall to ice hockey great Bobby Clarke.

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myth: Only kids get type 1 diabetes. fact: Type 1 diabetes, formerly known as “juvenile” or “juvenile onset” diabetes, is often first diagnosed in children, teenagers, or young adults. However, people may develop T1D at any age.