Day 150

we are at it again..
Getting bags ready for the childrens hospital..

We are in need of these items.
Thank you to anyone able to donate!!


List of items we are trying to collect:
(must be new items, hospital policy to lessen chance of infection or germs)

• Small LEGO sets
• Board Books (sets from costco can have 5-6 in them!! so would be able to give to 5-6 kids!!)
• Decks of cards or card games
• Crayons (we will be putting together crayon roll ups as well)
• Colored Pencils
• Notebooks or Journals
• Color books (dollar store!!)
• Mini games (like board games in travel size)

These bags go to the children diagnosed with Type 1 who are staying at the hospital and need something to take their minds off of their illness if only for a while.  Thank you all. Last year we were able to donate 90 bags !! Lets beat that number in 2013!!!

Day 149

Well I have said before that Diabetes doesnt just affect the 2 kids we have that actually HAVE diabetes..
 It affects the whole family.  Emotionally, financially and in a lot of ways.
Sometimes it takes a lot of attention away from our other 2 kids with out diabetes...Time spent in the hospital takes time away from them as well.  It takes longer to get dinner going because we have to add up the carbs..We have to pay more attention to what the T1 kids eat and how much, especially at restaurants.. It takes attention away when I have to be checking Madis blood and my non-T1 kids have a question or need help with homework..

it takes a lot to be a sibling of 2 kids with Type 1...

Diabetes....according to Carter, sibling of Craig & Madi

What is Diabetes? 
Diabetes is when your pancreas doesnt work right and you need to get shots and check your blood and your pancreas makes insulin thats helps, it does an important job in your body and when its not working right you need to get insulin.


How did you feel when Craig and Madi were diagnosed?
Well when Craig was diagnosed with diabetes, I didnt really know what diabetes was..I was kinda scared to think he was sick. Like was it bad, or what does it mean? I didnt know.  He told me he had to get shots.  It made me feel sad in a way, but then when Madi got diabetes I didnt believe you.  I heard you say "Madi has diabetes now" and I thought you were kidding.  I missed her at the hospital a lot.  I thought it would be really hard for her to get all of the shots and check her blood.  It was sad.


How does it make you feel?
It makes me feel sad that they have to prick their fingers and get all of the shots.  And other people without diabetes dont have to get that and they think people with diabetes are fine, but they are not.  

How does diabetes affect YOU?
Um..oh this is hard....Since Craig was diagnosed on my birthday and we were going to go out for a birthday dinner..but we couldnt because then you were both at the hospital.  So I missed you both on my birthday and I didnt get to see you at all.

What do you want to say to Craig about his diabetes?
Well, sometimes he does a good job with his diabetes.  Sometimes he doesnt check his blood. 

What do you want to say to Madi about her diabetes?
Madi is doing a good job, because she can check her own blood.  And she likes to help get her shots. 

What would you tell your friends about diabetes?
If they didnt know about it, I would just say its when you have ot get shots and check your blood. Checking your blood means pricking your finger and getting blood from it.  Then you have to get shots. 

Day 148

Honeymoon is...over...

Craig's first dose of double digits!

And Madi has been waking up in the 200s...and often is 300 during the day.  That means more dosage changes for the both of them!


Yes, its December..and a lot harder to blog daily thats for sure!!

The kids are finally done with school (yay!!).. Yesterday I subbed in Kinder and they had their Holiday parties.
I was reminded of how easy it is for most kids to enjoy a party with endless snacks, cookies, candy, and yes, tis the season for sugary treats!!

And also reminded of how hard it will be next year when Madi starts Kindergarten.
Oh how I often wish she could be a worry free kiddo.
I though about how I will have to e there to add up all of her carbs of what the party has to offer..then she will need an injection for those treats.. Im thinking maybe I dont want to be working full time next year!  Ill need to be available for her and her parties and field trips..Which is ok because I love those times.. Especially at that age, kids are just so excited for those things!!

And yes, I know I can have the school provide someone to do that, but with her age, I would feel much more comfortable being there myself!

Day 147

Well I havent been able to share our new addition... Meet Cocoa!

She is super sweet. Ya, I know not much to do with diabetes.. but still thought I would share!

On another note, we have been logging for 13 days..  more until we can turn it into the insurance for the ok on a pump for Craig! Still have mixed feelings about the pump.. Its something new and that makes me nervous.. but he is very excited so I will be too!

Day 146

Well with the kids sick lately (stomach bug), everyone is asking what are Ketones.

I got this off a web page to explain it better than I ever could
"
Ketones are broken down fat cells. When your body cannot use carbohydrates, the bodies preferred source of energy, for your energy requirements, it begins to break down fat, a stored form of energy. Although this may seem like a positive thing, it isn't.
When your body is breaking down fat instead of carbohydrates, it means one of two things. One, your body is in starvation mode, or two, you are suffering from diabetes. If your urine and breath smell unusually sweet, ketones are likely present.
Since chances are you aren't starving, diabetes is the likely culprit. In diabetes, your body is unable to utilize glucose, the usable form of carbohydrates, and therefore must rely on your body fat for energy. Though this may seem like a positive way to lose weight, ketones also build up in your blood stream. When too many ketones are present in the blood, a condition known as acidosis occurs. Acidosis is when your bloods acidic level is too high. Prolonged acidosis will cause death. Other possible but less likely causes of ketonuria are liver disease or too many high fat, low carbohydrate meals."
http://voices.yahoo.com/ketones-urine-symptoms-causes-treatments-1272073.html?cat=5

When the kids have Ketones its not good ...

This morning Craig had a trace amount of Ketones and an upset stomach..

When the kids are puking..and not able to get insulin because their blood sugar isnt high enough..then its really hard to get rid of those ketones..
Also dehydration can cause Ketones too..

Craig is feeling much better this evening..and has no Ketones.. yay!

Now, hoping our family is DONE with the stomach flu!

Day 145

Im very thankful when my kids share....but not when its the stomach bug... Apparently Craig feels sick today, like he is gonna puke..
Heres to hoping its not!!

Day 144

Type 1 pics..

Here is my type 1-er on her birthday ...stuck in the hospital..

poor sweet girl...

and she finally got to walk around..

Most times I love what Type 1 looks like in our home..healthy, able kids.. I mean no one "likes" type 1, but I am thankful that this disease doesnt take away my kids ability to run, jump, play and filfill their dreams.. When you visit a hospital, you really are reminded that there are many other children with diseases that do not allow them this luxury..
But there are days when Type 1 looks not as happy and healthy as I like to see my kids... Yesterday was one of those days..

  Last night Madi had a low.. We were just watching a movie..Tangled to be exact.
Then she got super whiny all of the sudden, pale and didnt look good... so I thought maybe I should check her..
the 4 seconds it takes the meter often feels longer.....59.
I believe thats her lowest ever..and we werent playing or running or anything..
So I gave her 3 glucose tablets and waited 15 min..retest....65..

65???
 what? thats it?

SO I Gave her another tablet and rechecked...89...

UGH!! She was SO tired and just wanted to go to sleep.
I ran to the neighbors to find some juice because the tablets were not doing the trick...

I got her some juice and after 15 she was 200.. good, ok, now I had to try to get her to eat some protien carb snack so as soon as this quick sugar wore off she wouldnt drop again.. She was fighting it..
SUper tired and not hungry..great.

Finally I go there to eat some graham crackers a milk. then she went to bed.
2 hours later I rechecked her thinking all of those tablets and juice and crackers and milk would leave her really high....nope, she was only 211.
Just weird..

Then today she was 65 at dinner time..looks like we need to change some ratios or something..




And here are 2 of my type 1-ers at their PCH photo shoot.. they had some funny poses..ha. Im super excited to see what they look like!

 pics from my cell phone...cant wait to see the "real" ones!

Day 143

Well today we had out meeting with a pump specialist.. If you have followed along the past mpoth you will know that Madi initially wanted adn was asking for apump..Then Craig decided he was interested.

Well today we were given a lot of information...and the kids used and infusion set to see what it felt like.

After that, Madi decided she did NOT want a pump ever and Craig cant get his fast enough..he wants it now.

After teh meeting I really had mixed emotions.  It seemed exciting...but completely overwhelming..
When you first get eh pump, you have to do middle of the night check for a t least a month..Thats 2 am people!! for at "least" a month....
You can have bas sites and a bad canulus or a kinked one...

I dont know..but then youhave to choose what pump you want..

That seems like a huge responsibility,

what if they dont like the one we get?

What if its lame?

What if the kids break it?

What if they get it and change their mind?

Will insurance cover all of the expensive supplies?

questions and more questions...

Well, Madi like I said has decided she doesn't want one now, so we are completely fine with that..Its her body and if she wants to wait, then thats fine. 

BY the way, the lump on his arm from like 2 months ago (which we were told was just inflammation) is still there...scar tissue?
Ugh diabetes stinks!

Some humor for the day..

I asked Craig, "so how is life?"
Craig : "its diabetis!"

Love this kid! He is awesome!!

Day 142...

Today is Madis birthday...

I had everything decorated, cookies and pretzles made... invites out and games ready....

She was so excited for her party..but by 10 am, here she was.....

She puked....then by noon she had moderate ketones....

So she is resting, sipping water and Gatorade.. and praying we can get rid of the ketones...
Oh happy birthday sweet girl :(

Update: Later she was still puking and we could not her her blood sugars up..so off to the hospital we went.. She puked twice on the way..

Poor girl.. She had to get blood drawn and then get an IV...She cried and begged to go home.

I was so sad taking her to the hospital..especially on her birthday.

Nothing went as planned..I had planned a wonderful day for my sweet girl and it all  was ruined for her.. It made me sad..

She is now at home feeling better and happy..

We will do a birthday re-do for sure!!

Day 141...add on

I was very excited when I got an email today that said we won for "best Betes Blog"

http://www.stickwithitsugar.com/2012/12/03/best-betes-blogs/

Our little 365 blog won for best Advocacy in November:

"

Best Advocacy

I’m not sure who said it but someone once said that more people fear public speaking than death. This little man with the support of his mom wasn’t afraid. Type 1 diabetes 365 and here (to watch the presentation) Kuddos Craig!"

Very proud of my kids..they are what makes this blog what it is. I am thankful they are not shy or embarrassed to share their story and experience with Type 1! Thank you for whom ever nominated us!!!

And a special thank you to all who read our blog!!!

Day 141

Happy Birthday to my sweet Madi!! Tomorrow is her birthday, but we will be super busy with birthday stuff, so I will blog about her today!

Sometimes I cannot believe she is 5..really?? Time has flown by...too quickly for my liking...

Each birthday I take her out and do a little photoshoot... She was in love with this shirt and calls it her "Indian" shirt:)

 
Yes, all parents think their kids are great.. but I am so proud of Madi..Its been a rough year for her..She has done so great with her diabetes..She rarely even lets me check her blood anymore..she HAS to do it her self... ha, yes, she is Miss Independent!!

So, Happy birthday Miss Madi! We love you so much!!

(She will be thrilled I put more picture on "her" diabetes blog..She always tells me to take pics and put it on HER blog!! haha)

Day 140

I was thinking today how diabetes is...

How people will say "oh your kids have had it for a while now (almost a year for Craig), so you guys should have it figured out right?"

Oh how I wish it were so...

Yes, things get easier... but the thing with diabetes is that it is NEVER  consistent..
especially with growing kids...

One week one of the kids will have great numbers, and the next... super highs or lows... It is always changing..

A lot of people think you just do those easy calculations and get insulin..easy peasy...


But what people dont know is that everything affects those "numbers"

nervousness of a test or game, being excited about something, excersize, hormones, sickness, stress..

It all affects their glucose numbers..weird huh? who knew??

So while you may think "hey, you have it down by now right?"

nope..

Madi woke up at a super 140..then at church she was 140, 30 minutes later she was 400 (ya, she snuck skittles), by 4 pm she was 80..bedtime she was 230...

Craigs number are pretty good, but have been ranging from 200-300... not terrible, but he gets annoyed by the highs..

Poor kid..he really internalizes his numbers and gets much more annoyed than he should..A lot of his highs are uncontrollable.. he is 13, so hormones are coming..and apparently that causes highs..

Other than a few highs, the kids are doing pretty good.

They are Very excited about their pump class this week...

Oh!! we also finally got our results back from Trialnet..
Our other kids do not have the tracers or gene of Type 1...It almost felt like a relief, but was weird...

I know our other 2 kids were relieved.. Ever since we tested our 8 year old has been asking "did you get the results back yet?"

A lot of this blog is about our 2 type 1ers..but they do have 2 other siblings...How does diabetes affect them?? Because I can tell you now that Type 1 affects everyone in the family.. not just the kids with the disease..

This week I will be sharing part of their feelings about all that has happened this past 10 months.

Day 139

This is a busy week...

Monday is errand day and school..

Tuesday is Madis birthday!

Wednesday we have a photo shoot at the chidrens hospital..

Thursday is the kid's pump class..excited adn nervous..

And Friday is a work day..

Saturday Craig has a tournament and I have a few photo sessions...

Hopefully I can find time to cook and clean too! lol

I love my kids and I love their activities..but these weeks are rough!!

Day 138

It is definitely busy season.. Busy with work, sports, holidays. and life in general...

Its been harder to blog daily!

SInce I am back to work, its really hard to leave Madi with anyone.

I have trained 2 people, but its still hard to leave her with anyone other than my husband.

Its not a trust thing..really....its more of a "but do they have the experience, or what would they do if.."

 Type 1 is such a complicated disease.. but its also simple..

Most of it is about numbers..but what do you do with those numbers? thats the complicated part..
And I have a hard time leaving that to anyone but myself...

Day 137

Well...its official..We are doing the Tour de Cure. 64 miles of biking.. I believe we are indeed crazy and stupid! lol. I am excited and scared at the same time!!! https://donations.diabetes.org/site/SPageServer?pagename=TC_Tour2012_PC2_A

Day 136

Here is Craig at the assembly, he also spoke in 4 classrooms, where he warmed up alot more and because much more comfortable. So proud of you Craig!!


Then here he is in one of the classrooms:)

Day 135

Today Craig went to the elementary school and spoke at an assembly for 3rd graders and then spoke in 4 different 5th grade classes.  He did awesome!
I tared up a few times..It was really hard hearing him express his feelings about his diagnosis and his experience with his first shot..

The first assembly he was pretty nervous..He had a speech prepared and pretty much read it.. But when he went in the classes and got more practice, he more engaged the audience and had more fun.

It was such a great experience for him and for me as well.  I am SO glad he got the opportunity to do this!
I feel so blessed that he is able to talk about it and speak to others so openly about it and not be embarrassed.  In fact when I asked him if he wanted to be involved in this and speak, he asked "Do I get to miss school?"
To which I said yes, then he said "ok!"

Ha.. This morning he mad this...It is the amount of shots he gets in 1 month. He had 2 volunteers come up and hold it out so everyone could see .  When they did this the kids all went "oh! and awe!"
After his speech he allowed kids to ask questions.. During this I overheard many kids in each class say things like  "diabetes sucks!" "that sucks" , "oh my gosh!"

It made me sad in a way that this thing that "sucks" is my childs disease..but also made me proud that he can share this with people and help others learn about this disease. He is such a strong boy and I am so proud of him!
As we left the school he said "thanks for setting this up mom"
I was so thankful that it was a great experience for him.

Hopefully by tomorrow I can get the video up on the blog!

Day 134

My thoughts on diabetes today.....

Sometimes we just go day to day and dont think much about "it'
And other days we kind of hate "it"

When Madi sets up her little tea party and its ready to go, stuffed animals and all..but she cant start yet because she has to get insulin for her 2 small cookies she has included in the tea party..it makes me sad....sad that she cant just be a normal 4 year old who is having a lovely tea party...but that she has to worry about finger pricks and insulin shots all...the...time.Those moments make me hate "it"

When we can share our story and help others understand what Type 1 is, is makes me thankful that we have the opportunity to do so.... And it makes me so thankful for strong kids who want to share their story..

Often times I think about how blessed we are that our kids can still do what they want in life..They can run and play..they can go to Boy Scouts and hike and rock climb..they can have parties and go to parties..they can jump and do cartwheels, sing and dance, play baseball and do well...Although these things take more preparation and shots and carb counting, they can still do them.. That is a huge blessing...


Sometimes diabetes is very hard..when kids are sick, or ketones show up, or when your child has had enough shots and wants no more, but you know they need it to stay alive and healthy...When its late and they need to go to bed but they are low and HAVE to stay up and eat...When they want to swim or play, but they have to sit out because they are low...Or when they are high and cant get it down..Those times are hard..Its hard to see your child in pain or sad because of this disease...

So, there are always 2 sides to how I feel about diabetes.. We are blessed to live in a day that they can have the supplies they need and that insulin is easily accessible, but it stinks to have to NEED it:)

Day 133

This week has been super crazy busy!!
I am not sure I could fit anything else into it!
I subbed just 1 day, 6 photo shoots, planning a diabetes awareness day for Monday at the kids elementary school at which Craig will be speaking at (super excited for that!), baseball practice, scouts, Twilight movie:), cooking and cleaning never end either..I swear Ill never  catch up on Landry too! aahh.. anyway ....

I cant wait to post about the Diabetes Awareness Day at the kids school. It will be this Monday.  The school had too many things going on this month to plan a school wide day, so we are going into 2 grades to speak and teach about Type 1 diabetes.
We have a JDRF rep as well coming to help.  After she speaks, then Craig will speak about his experience with Type 1 and his daily routine..Then he will answer any questions the kids might have.
I think its a great opportunity for Craig as well to speak and be an advocate and teach about this disease..
I am so proud of my boy!

Other exciting news, The Phoenix Childrens hospital has invited Craig and Madi to do a photo shoot in which they will use the images for 2013 marketing.  I am so excited for that!!
Cant wait to share that too!!

Day 132

ha, that last post I hadnt realized I already updated on Madis last dr appointment.. Ya, life is a whirlwind and I cant remember what Ive posted and what I havent...
 Today we spent all day at a tournament for Craig. It is always great to see him play! We had the most perfect weather as well.. So after my long weekend, Ill just post some pictures from the tournament!

 We just had Craig and Madi with us because the other boys were at a bday party:)

 safe!!

 I love that baseball brings him so much joy!

 We got the win!!!

Day 131

Well Madi had an appointment a few days ago. She gained 3 pounds1 and her A1C was down to 7.4. (from 7.7 at her last appointment 3 months ago) yay!

She wanted to ask a few questions about a pump.. She has been asking for a pump for a month now..
Randomly she will ask me a few questions so she finally got to ask the doctor..

Before now, Craig has made it very clear that he is not interested in a pump and that he is never getting a pump..  ever!

Well after Madi's appointment she cam e home and told Craig about it...
Now he wants a pump! I couldnt believe it!

Who knew a 4 year old could inspire a 13 year old?!

So now we have to make an appointment for both of the kiddos to go and meet with a pump specialist..

“As we pass through the trials of life, let us keep an eternal perspective, let us not complain, let us become even more prayerful, let us serve others, and let us forgive one another. As we do this, ‘all things [will] work together for good to [us] that love God.’ ”

James B. Martino

"Each of us will face trials and tests, and . . . it is how we react to those difficulties that will determine our success and happiness. Each of us will face adversity no matter where we are. We will each face times of difficulty, and the question is not when we will face them but how we face them."

James B. Martino

Day 130...A post from Craig

A post from Craig:

     Diabetes has changed my life and it has given me another obstacle to hurdle...

     On January 19th I went to the doctor because I was not feeling well.  The doctor said I had diabetes, but I didn't know what that meant.  I was just confused because I had no idea what diabetes was.  At that point I wasn't scared or worried because I just didn't know what it meant.  They sent me home and told me to get some blood work done the next morning.  
     On January 20th, 2012 everything changed.  That day I was sent to the hospital after seeing a 407 blood sugar reading.  I remember feeling terrified.  I didn't know what would be in store for me.
      I remember that my first finger poke was scary.  I was unsure what to expect.  We went to a friend's house who had a meter so I could see what my glucose was.  When I pricked my finger I felt very sick, like I was going to throw up.  Our friend saw the number 407  and said we should go to the hospital. Those words made me almost in tears.  I didn't want to go to the hospital. I thought it would be embarrassing and I didn't know what would happen..
     When we went to the hospital I was scared because we went to the E.R.  When we got there, we sat down and the nurses had to draw blood.  She tried and something happened.  The blood got everywhere and that worried me even more. I thought "Do they even know what they are doing?" . Soon I had to get my first shot.  That moment was unforgettable.  I was just so scared.
       Now I deal with diabetes every day.  I have to deal with daily highs and lows constantly.  If  I don't take care of myself, then I could face worse issues and it is not safe.  When I am high, I feel  kind of light headed and dehydrated.  When I am low, it makes me feel  shaky and sweaty.   It makes me feel like I am very hungry.
     On a daily basis, I have to deal with finger pricks and shots.  This is one thing that I will have to deal with for my entire life. It will not go away. 
     Occasionally I get sad because of diabetes.  Sometimes it is very hard.  These things are hard to deal with and take a while to get used to.  When my sister Madi was diagnosed it felt like my diabetes was a blessing because I could help her.   Overall, this has been a strengthening experience.  It has taught me to no take things for granted and reminds me how lucky I was before my pancreas stopped working.   Although it has been hard, it has also been a blessing.

day 129

 Today we had a few doctors appointments... First Craig had a quick appointment then  Madi had her 6 month check up (endocrinologist every 3 months).. Her A1C went down to 7.4 and she gained 3 pounds! Yay Madi!
Since Madi has been asking me about the pump and even one day demanding to get it, I told her she needed to have questions to ask the doctor today.  Yesterday she thought about it and talked with Craig about it..
So today she asked the Endocrinologist a few questions.. like:
What does the pump look like?
How big is it?
 Do I have to get shots still?
Do I have to have Lantus if I get the pump?
and how big is the needle?

The doctor was surprised at her asking about it. She said she has never had a 4 year old ask about the pump..I just told her that Madi has a hard time with the constant shots and that she was curious about the pump..

Well now we go to meet with a pump specialist and ask more questions, see the pumps and try an infusion set for a day or so.. Thats the next step.  They are supposed to call me today to make the appointment.. Ha, the doctor told Madi to have Craig come along too.. Craig has NO interest in a pump, but it might be good for him to be there too I guess..

And here is what Diabetes looked like for Craig last night after baseball practice..

Right when he finished practice and we walked to the car I noticed he started to lose the color in his face..He was looking really pale so he did a check and he was 130 which is a good number, but I could tell that all of the physical activity was draining him and he was dropping quick..
He felt ill and very weak all of the sudden... He wouldnt eat or drink anything... He thought he was going to puke..
When we got home he just lay there until I finally insisted he eat something.. He felt so sick that he didnt have an appetite... I dont like seeing him like that..because mostly I feel so sad for him and there is nothing I can do to make it better... Thats hard..

So many times i wish he could be just a kid... A full of energy, worry about nothing, eat what you want, when you want kind of kid...but he cant...