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!

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!

Its another Diaversary....

 Today marks 2 years since Craigs diagnosis...  
http://craigandmadi.blogspot.com/2012/06/day-12.html
That day we could have never known how our lives would change..
It was a heart wrenching few days.. but this past 2 years has gone by quick and Craig has dealt with his diabetes in such a positive way.  He has helped his sister through her diagnosis and many site changes (she needs a hand to hold every time!). 

He was able to turn a diagnosis into something positive.  He has spoken at several assemblies, he advocates for himself and this disease, he has also been able to help so many other kids because of this trial in his life.  I am so proud of my boy!! Any child who lives with this disease and takes whatever positive they can from it is inspiring!! 

 He checks his glucose several times a day.. I get up and check it in the middle of the night.. In the past 2 years he has pricked his finger, squeezed out a drop of blood and applied it to a test strip at least 5,110 times... over 5000 times!!  Thats insane to me.. although we live this life every day.. with 2 kids with T1... Sometimes it doesnt even seem real.. sometimes I think, "I cant believe we have 2 kids with T1 diabetes..."  I would imagine it feels a lot more REAL to a kid who has to poke themselves that many times...

 He wears a medical bracelet 24 hours a day (with the exception of baseball games) .. He is not embarrassed by it.  He wears it without argue, which I am so thankful for!! He wears it because in his words, "If I pass out, the ambulance will know that I have diabetes so I wont die"   That is the reality of a T1 diabetic.  Anything can happen, blood glucose can drop quickly and they could have a seizure..anytime, anywhere.  Its a 24 hour a day disease.

 He has gotten at least 70 pump sites (small IVs that the insulin slowly pumps into his body through), and 1440 insulin shots in this past year.  Can you see why he loves his pump so much.. compare the first 6 months of the past year, 1440 shots...To the second half of the past year when he got his pump, 70 pump sites.  Both kids have insulin pumps and it offers so much more freedom, even though they are constantly hooked to this small device.  24 hours a day they are connected to their insulin pump and tubing.  It is part of them and keeps them alive!

He has scars from pump sites, small red unhealed sores where his sites were.  He has callused fingertips from the constant finger pokes, he goes through highs and lows, bad and good days.  Ketones and sickness...

  

 Through all of this, he continues to live his life how he wants to.  He hangs out with his friends, plays baseball, does boy scouts and almost has his Eagle Scout award, he gets a 4.33 GPA and is in the top 5% of the Freshman class, he keeps a good attitude and has a great sense of humor.  He inspires me so much and shows so much strength!  Diabetes is a hard disease, but it doesnt stop him..or slow him down!

 

A couple custom Madiola Designs orders!!

 A couple for the Animas Ping

 For a CGM love this chevron and the polka dots!!

 For the Medtronic Pump..

Day 119

oh man diabetes kicked out butts this week...
Madi had a bit of a breakdown..

She had a kinked site and Moderate Ketones which caused her to be sad and sick feeling. 
Her blood sugar was 504.  She cried and cried, begging us not to give her a new pump site.
"Please I dont want diabetes, I never wanted diabetes.  I dont want a new site, i dont like shots!"
My eyes welled with tears. I couldnt stand it.  My sweet girl.
It is so hard as a parent to see your child go through this.  Knowing they NEED to get the insulin to stay alive, but they beg you not to do it.

After a little break, and a warm bath she ended up getting a new site.  Because she was high I went to get the Pen because she didnt want a new pump site.  As soon as she waw the pen she said "oh, the pen is so big, I want a site!"
And that was it. New site, better numbers, lots of water and now no Ketones.. Whew... we got though it..
Our family deals with Type 1 every day, but

last night we really hated diabetes!

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 209

Its that time of the year again...

Back to School

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:  This year, Madi is starting Kinder, so I had to go in and train the Kinder staff (all staff just in case her teacher is absent at any time).  The school nurse did a small presentation and we covered what T1 is, high/lows, Glucagon, warning signs, carbs & intake, checking glucose, quick sugars and more.  Teachers were able to ask questions and I also brought Madi so she could show them her pump and meter.    After the meeting, we made 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

  
Craig doesnt start till next week and he starts High School, so Ill let you know how all that goes!! Its his first time ever in public school, and I know he will love it, but its a whole different system..so we will see how the T1 care will go.  As well as the 504!

Day 205

Reasons we love the pump..

1 shot every 3 days..
this is the top reason... Madi was getting to the point where she would cry if she had to get a shot within an hour of eachother.. but she was hungry, and even if she wanted an apple, she needed another shot. 

Better control
One of the best things about having a pump is that you are not relying on long acting insulin that peaks and then fades out.. You have s much better control of the amount of insulin they get every minute and that helps their body to be function better.  Craig gets different amounts of insulin all day because of how his body works.  He has MUCH better numbers!

Easy access
by that I mean when we are at a restaurant, I dont have to take Madi to the bathroom to give her a shot.. I can just use a remote to give her insulin and no one would ever know what was happening.  She would want to go to the bathroom for her shots so no one would see. Craig didnt care, he would get a shot anywhere, but sometimes I worried if people would be grosed out by it.. You never really know.  Also, when he is out with his friends he doesnt have to draw up insulin and worry about carrying syringes ect. 

Its even cute!
Theres nothing cute about syringes...LOL, but Madi loves wearing all different colors and patterns of pump belts!!!

Pumping has its ups and downs, but its such a blessing.  It really makes life easier for my kiddos and when they already have to deal with ALL type 1 is, Im thankful they can have something that makes it easier!

Day 204

Can you even believe it happened again!???

This time was a low right before lunch. Both kids were running around and having fun outside and before you know it, they were both low... and the SAME low!!

Both got juice and felt much better.. I took this while they were waiting to get those sugars up.. that 15 minute wait always seems longer than it really is...
This has only happened 3 times since diagnosis..  (where they have the same number)

Day 203

The other night Craig and Madi wen to bed at the SAME number! 174.

I was interested to see what their numbers would be at 3 am.. I checked them both and Craig was 75 and Madi was 80..

Crazy how they both dropped almost the exact same amount in the same amount of time right?

On another note, my pump pouches are selling and its it SO fun..
I love knowing little kids are wearing my pouches and enjoying it!  I feel like its enough of a pain for a little kid to have to wear a pump all the time, but Im glad I can help make it fun and cute!
 Here are a couple new belt designs adn im working on coordinating pouches as well.
I just ordered some cute dinosaur and car fabric too so I can have more options for little boys.. I have so much fun making them!

I can also do any style or theme, just let me know what you are looking for! I love feedback!!

Day 201

I have been thinking lately...

I usually posts about the kiddos and their ups and downs with type 1..

But the other day I had a bit of a break down..

Nothing major happened.. Craigs pump meter was left at church so I had to go back and get it.. but no one was there so I had to wait around for an hour for someone to open the church just hoping I would find it there.. Luckily I did. 

As I sat there waiting, I thought "It is always something..!"

My lack of sleep makes me emotional and I started to cry.. over a meter..

And although my emotions were not about the "meter" it was part of it.  Diabetes is hard, and changes the lives of the whole family... Lately, its been really hard.

I thought maybe I should share a bit, because I KNOW there are parents out there going through the same things..

You try to be strong for your kids. Diabetic or not.

You do all you can to help them and ease their pain.

You worry about them, their emotions, the highs and lows. the frustrations of diabetes.

You exhaust yourself with constant calculations, midnight checks, late night site changes, shots, snacks, educating everyone you can about their disease so you know they will be safe, while ALSO taking care of the "normal" everyday things  for your whole family like, cleaning, working, cooking and tending to your whole family...
Paying for bills, regular and medical is overwhelming.  
Boy Scouts, sports, school, puberty, fighting kids, pets, projects, and so much more..

IT IS A LOT OF WORK.

And it can be really hard.

Lately, I have felt emotionally and physically exhausted.

I do not do well on lack of sleep.  I have let myself go.. I honestly style my hair and wear makeup like once a week.. I feel out of shape, tired and a total mess!! Id probably wear sweats everyday if I could. 

Everyday, I feel like Im just trying to stay above water. 

I often feel like I havent been able to enjoy being a mom the past few months because I have been completely tired and overwhelmed with all of my responsibilities.  I havent really laughed.. or ran and played with my kids.. because when ever I have a chance, I try to rest.  That is hard for me.. I LOVE being a mom.  And I want my kids to know that. 

I feel like Im am just "surviving" right now.

I dont need anyone to feel sorry for me, or whatever, Im just sharing my feelings and the way things are here right now.  Life comes in chapters, and this one my friends, is a really hard one!!

I know we will get though it, I know things will get easier, and I know we will all be just fine, but right now, its hard, really hard.

Being a mom is difficult some times.. It is a full time busy busy job!  Add diabetes in the mix and its ...I dont know how to put it, but its just a lot. 

I would do anything for my kids and I know they know that.  I would never want them to think they or diabetes is a burden.  because diabetes or not, I love my kids and love them just how they are. 

But the truth is, right now, Im having a hard time juggling all life has in front of me right now.

Day 200

 Well we have enjoyed the beach for a couple of days.. Had a couple lows from all of the excitement.. Also The first day, Madi got sand in her site even though we put the clip in it to protect it.. So the second day, we covered it with self adhesive ace bandages.. ok, I dont think thats what it is called, but its a stretchy bandage that sticks to itself, so we wrapped her arm and it worked great. 

 She never would actually get IN the water, so I didnt worry about the pump at all.  We did take it off when we buried her int the sand

 Madi and her aunt! My aunt too!! Seriously, I cannot take pic of Madi with out a silly face!

 Me and my girl!

 Me and the kids..

 And here a re a couple pics of the kids at the Creek when we got to Washington..

We have had a hard time getting Madis pump settings where we want them... She is high at midnight then drops a ton by 3 am.. I usually have to give her a drink or gogurt at 3 to sustain her until morning...
So they made some pump changes to her basal and now she is just high ALL night..

I personally think her carb count needs to be changed too because she is high all day..which worries us.. So we change her site after a couple highs (over300) and its fine.. no kink, no problem... SO that is just frustrating! hoping for better numbers SOON!!