Day 171...

I know after your kids are diagnosed for maybe a month, or a few months or even a year, everyone looks at you and thinks "hey they have it all figured out by now" or "Im sure its so much easier now that they know what to do"

Well that isnt the case.. I wanted to share with you all what our family has to do before every single meal..

This is something that we have to do for EVERY meal.. Yep, every meal.. I have to say when the kids were first diagnosed, this was a very hectic time of day.. everyone was hungry, but blood sugars had to be checked, food measured, carbs added, calculations made, then dosings given.. It is a lot of work!! Now we say our prayer, and the 2 type 1ers add their stuff up and do dose while the other kids can start eating.

So first, while I am cooking, I have to keep all of the wrappers or packaging so we know the carb amounts and measurements.  Sometimes this is annoying and yes, we have pulled them from the garbage from time to time because its just instinct to throw them away..  it happens....
but anyway, we have to read all labels and see how many carbs are in how much of a serving.. For EVERYTHING I use..

 Tonight we had spagetti, breadsticks, and salad.. but that consists of sauce, pasta, vegitables, breadsticks, cheese, butter, crutons and drinks...

 Our handy dandy measuring cup..we have a lot actually, but this one is 1/4 of a cup, which equals 8 carbs of spaghetti sauce.

Salad..is FREE..no carbs in this salad..

 

So each breadstick is 25 carbs.. Parmesan cheese is 0 carbs..

 

 

 So now that everything is cooked and ready and we have out lables, we have to measure and serve each type 1 kids plate..This consists of measuring cups and a food scale.

 Lets see, Craig measured :
1 breadstick=25 carbs
4 oz of pasta=84 carbs
1/2 cup of sauce=16 carbs
Salad=free

So after we measure and serve his food, we have to add all of the carbs.
Total carbs=125 carbs.
So now we have part of one of the calculations he has to do with every meal. 
He has to divide is total carbs by 15 and that will give him a number... so 108/15=8.33

SO now he has to check his glucose (he usually does this right before we even sit at the table)
So his glucose was 149, great. now he has to take that number and subtract 150 from it and divide by 70. Which in this case his glucose was spot on, so it end up 0.

After that, he adds the 1 numbers together 0+8.3=8.3 and thats how many units of insulin he needs.

Ya, its a lot to do!!

Then we have to do the same for Madi...
Her blood sugar was 298, so we calculate with her special calculations which are 298-150/150=1
Then add up what she wants to eat:
2 oz pasta=42 carbs
1 bread stick=25 carbs
butter and Parmesan on her pasta=0 carbs
6 crutons on top of her pasta (I know, its weird)=6 carbs
Total carbs=73
She takes 73/30=2.4
Add those numbers together:
1+2.4=3.4 units of insulin (rounded to 3 units)

So then the get their shots and have a nice dinner....

This is a meal with type 1 diabetes..and thats not even going out to dinner and having to guess the carbs..or going to someones house and trying to measure and guess whats in the food...

If I make something like enchiladas I have to add everything I put into them, then divide by the amount of enchiladas I made so get the amount of carbs in each enchilada..Then the kids know how many carbs to account for if they have a half or a whole..... Guess its a good thing I like Math!!

Day 170

strangers....who become friends..

I was thinking about this today..

People who reach out via facebook..

Or who comment on this blog..

Or who donate to our Ride...even though we do not know eachother.

Its crazy...but so great.

It is such a support system to know that other people support you and can realte to the things you are going throught..

Either they have been through it..or they have watched their kids go through it, or they just want to help.  They can offer words of encouragement and can realte to your late night lows, or early morning highs, or the sadness of type 1, or the happiness of tackling the disease and doing something great!

Scott Johnson, who comments on this blog and is always so positive and supportive in his comments.
Thank you!!

A Police squad who pooled together and donated over $200 to Craigs Tour de Cure ride..
Thank  you!

Nic Duck, havent heard from you in  awhile, but I love your comments..and how you can relate to Craig baseball games and  to a kiddo with type 1! lol
Thank you!!

Thank you to many other "strangers" who reach out on facebook and who have supported our kids in any way.  We are truly thankful for you, even if we dont "know" you in person!!

Thank You!!

Day 169

Just some normal items on the dresser of a diabetic...

When I was cleaning her room I looked over and realized most little girls dont have juice on their dresser as a "normal" thing... Well, she does..just in case.

Day 168

His pump is on its way.... should be here in less than a week!!

Day 167

Well we finally made our fundraising goal for our 62 mile bike ride!! YAY! Thank you to everyone who donated!

Also, yesterday Madi had another pump appointment.. She got a little puppy dog that can get an inset.. She is excited again about the pump and is super excited about designing her very own pump pouch!

 After we got home from the hospital, she crashed!  Cuddling with her puppy with  pump, Sandy.  She slept for 3 hours..and was up all night because of the long nap! lol

We also donated 23 more unboredom bags to Phoenix Childrens Hospital!!

Today, Craig had to get all of his 1 year lab work.. hoping only good news comes from it..

Here is Craig and his friend on Monday doing his 32 miles for training.. we are working our way up to 62!!

Craigs brother as well, (Im the one taking the pics)  Landon, who is riding with us!!

Day 166

well craig had his year check up today.

Didnt go too well.

A1c was 10.1.. bummer...

Last time it was 7.  They upped his Lantis again too. 

He did grow 2 inches in 5 months (crazy right??) so he is now officially taller than I am.. sad sad day!!

We were told we should be able to order his pump within 5-10 days, so we'll see how that goes..It seems to be taing quite a long time to get it all situated..but Im ok with it I guess..

I dont really want to learn a whole new thing until after our 62 mile ride.. and Im heading out of town for a week soon, so its fine..

Tuesday we go to meet with the pump company for Madi. 

Day 165

well the highs are continuing..

Madi was 230 when she woke up... I dosed her for breakfast and a2 hours after she was 520.


I hate it....I called the endo again and they changed all of her numbers AGAIN..

Upped her Lantis again...changed correction calculations too..I changed the vial of insulin as well just in case that was the culprit, but that didnt work...


Doc says "Her honeymoon phase is over"

Yep, her pancreas has gone kaput....stopped working.....dead..over...


You might think its not that big of  a deal, but Im kinda sad about it..

The past week has been a very discouraging rollercoaster..


Out little girl need more insulin and it makes me sad..it shouldnt, but it does.

Its like I need to mourn for her pancreas... its over....goodbye working pancreas.. I wish you could have pulled through, but you didnt have a chance.

I just hope we can get it all under control so she can feel better.



On another note, Craigs numbers are great! and we finally heard from the pump company and they should be ordering his pump in 5-10 days!

day 164

Today was a rough day..

Madi got up and was super bratty..
And  didnt want to do anything, was being super sassy, and not getting along with anyone..

Her blood sugar was 242 when she got up, which is a little high, but not crazy high.

She had her breakfast and I dosed her for it.

Then we went to church.

She was whiny and could not be pleased!

SO I decided to check her blood again..even though I dosed her for breakfast..

She was 499..

499??

Out of no where...

She didnt have extra snacks, because we were in a hurry, so I know she didnt sneak any..

I gave her insulin for the high and then within 20 minutes, she fell asleep on her dad..In church.
That hasnt happened since she was um... a baby!!

I know being that high makes her tired and "bratty"

But I felt so sad for her, knowing she was so high..

No one, not even I, can understand the affects of a little body when blood sugars go from good to 499, to normal to crazy low...Of course unless you have Type 1 and have been through it.

This roller coaster of numbers is just numbers, but to her....its a sick feeling, a tired feeling, a really bad feeling..

It got me all emotional dealing with it.  I felt so sad for her little body..that she cant just not have to worry about it..  And sad that I couldnt control it..
Control those crazy numbers so she can feel "good".
But diabetes doesnt work like that..
Theres no "controlling" anything!
Who knows, it could have been her ear infection she has that has caused her highs lately..or maybe her body is fighting something else and she will end up sick in a couple days....Im not really sure why she was 499....but she has had quite a few highs in the past 2 days. 

She slept for an hour...I took her to my class and she just slept on me. 

Now her numbers are fine and she is just as busy as ever.  But I really dont like these days..

Day 163

Cupcakes and a really low low??
How is this possible?

Madi was so excited when she saw a cake mix for valentines cup cakes.

She has been waiting 2 days to make them because we have just been so busy.

Well we made them this afternoon and as they were cooling she was playing the ipad for about half an hour.

I said "Ok time to frost the cupcakes, lets go!" And she jumped up all excited and ran downstairs...then all the sudden she yells "Wheres my meter? get my meter!! I feel low!"

I hurried and get it adn she checked her blood..
It seemed all of the energy drained out of her in a matter of seconds. I ran to get juice quickly and she laid down..

Poor sweet girl...I hate moments like these... no warning, just a quick low..
She wasnt jumping around, playing, running or anything..she was sitting and playing the ipad.. but apparently she needed to eat  while she was doing so, because a 44 is just too low!

To say the least, she was excited to get her cupcake for free, with no shot! 

Day 162

Today Madi was just over getting shots.. She hates that she has to have a shot for almost anything she "wants" to eat... Of course she has options, but thats not what she "wants"!!

Tonight she wanted crackers, marshmallows and a banana.... = 55 carbs.....which is of course a shot of insulin! 1.5 units for her.

But she didnt want a shot..
She rolled her eyes and says "Ugh, I hate diabetes!"

All I can say when she says that is "I know Madi...we all do"

Although we try to be positive all the time, but when she has those sad moments, I have to let he have them... Because if I dont, then its like saying "get over it and live with it"

Of course we dont want to dwell on the bad, but once in a while, even a 5 year old needs to vent!

Love this sweet girl!

Day 161

Part of living with diabetes is having people around you who help you, watch out for you, and support you..
For Craig, this has been a huge thing.

This past year has been rough..

But he has done so many amazing things to get through it, and continue to live his life and enjoy the things he loves to do.

The thing that helps to make this possible?....good friends.

One of his very good friends is about to move..and I am so very sad.  Part of it is the mom in me who wants her son to have that "great friend".. the other part of me is sad that we didnt get to spend more time together..
Lets start from the beginning.. we met this family and were immediately drawn to their  value of family..It beams from them!
They have 5 kids and you can tell that they are their world. The dad was starting a baseball team and Craig tried out.. Well he made the team and we were so excited.  From then, the 2 boys really became closer.

This was just shortly after Craig was diagnosed  that he became friends with Austin...

He was a great support for Craig..  He accepted Craig and all that came with his diabetes..
 Here they are volunteering for the JDRF, then enjoying a baseball game. (lol, thank you Carter for the picture!!)

 His family donated to our Walk for the cure and Austin walked with Craig..

 Some after walk football!

 He supported Craigs 1 year mark of his diagnosis by wearing blue laces and signing his card..I loved what he wrote! "Craig, You are an awesome baseball player.  Even though I thought when you got a shot was grose, but Im used to it"

They played several tournaments and countless practices together. 

 Late night sleepover, movies, playing in the rain,

 

Great friends like this are hard to find..
I feel like Austin was placed in Craigs life to help him through this past year... I know he was.
I am so thankful that my son was able to have such a great friend.. and thankful to his family for raising such a great young man.  I hope they will be lifelong friends.


Although we are excited for this family for their new adventure, selfishly I wish they were staying...

Day 160

Well  we are training for the 62 mile Tour de Cure. We only have 6 weeks left and we NEED sponsors/donations.
There is a $175 minimum fundraising requirement per person for this race.

Anyone wanting to sponsor our team or donate any small amount would be so much appreciated.
Me, Craig and Craig's brother Landon are training for this long 62 miles..
Biking 62 miles for Craig!!

You can sponsor or donate here, please be sure to donate to a certain rider, not to the "team" otherwise it wont count towards our fundraising requirement:
http://main.diabetes.org/site/TR/TourdeCure/A6BRD-TusconArea?team_id=562742&pg=team&fr_id=8585

We even bike in the rain to train.. gotta keep on schedule!

 I honestly never thought I would be able to bike 62 miles.. Its been a huge struggle for me (lol, mom of 4 kids who is terribly out of shape).  Also I have pretty much hated bikes since I crashed into a parked car when I was 10.  But Craig really wanted to sign up for this, so we are doing it.  Surprisingly, recently I have started to enjoy it..

 Our last long distance ride was 18 miles.  I was sore for days! This week, we will go 22 miles.  We are on a tight training schedule to get us up and ready for the 62 miles in 6 weeks!!

If you remember, last year, right after Craig was DX, we volunteered at the local Tour de Cure. but this year, we are actually DOING it! crazy!

On another note, Madi has finally started using the pen.. so that means both kids are on the same type of insulin (for now!) 

me & Landon

Day 159

SO much going on lately...

Well Madi has started using the Pen... It is smaller needles, so thats nice! and that means her and Craig are using the same type of insulin.. for now...

Craig is still waiting for his pump approval from insurance. He is IM-patiently waiting :)

We also were able to take 40 bags to the hospital.. For those of you who dont know, we get donations and put together bags with items like crayons, markers, toys, games, notebooks, colorbooks, cards ect..
Then we take them to the hospital for the kids who are diagnosed with any autoimmune disease, they get these bags to help keep them busy in the hospital. 

Craig has been busy with Boy Scouts .. This week, they did a service project every day of the week "A Week Of Good Turns". Here are some pics from that! I love that he is doing service for people.and that he is busy doing good.

 We are also training for the Tour de Cure.. We have 6 weeks left to train and then we do 63 biking miles!!! It sounds crazy to me... but we are doing it!  My legs are constantly sore.. but I figure if Craig can do what he does every day with type 1, then I can do this with him.  Im excited..and nervous at the same time.. Tomorrow we do 22 miles.