Day 31

Today I realized my frequently used phrases may sound weird to someone who did not know about diabetes..

For instance "Craig has been high all day"

may sound a bit odd... but what I mean by that is that his glucose numbers have been high all day...

OR " Madi is low, so she is sitting out"

which means she is having a juice for now until her glucose numbers get up to a good number, then she can play :)

I feel like its common talk now and sometimes I forget that other people have no idea what Im talkingabout...

Heres a laugh for you..While driving across the country last week, I pulled over to give Madi a shot of insulin because she was very high and wanted a snack.... An officer pulls over and asks what we are doing..So I say, "Oh we are fine, she just needed a shot"...He seriously looked at me so crazy!! Then he drove away..

I thought it a bit weird that he gave me a crazy look, then went on his way instead of asking what the heck I was talking about.. but maybe next time Ill just say they needed some medicine :)

Im always open to questions, so if I say something that sounds weird and you are wondering what it means.. just ask!

Day 30

a princess?? ya, well she is the only girl so what do you expect?? ha...
 Well anyway we went out and took a few pictures so I thought I would share..
I love this one..she has a great smile..

This picture made me think about the fact that my kids dont "look" sick...Yes they have an illness, and they fight it everyday, but if you didnt see them checking their blood or getting a shot, you wouldnt know they had Type 1...If you saw them on the street, you would have no ides... They run around like any other kid, they smile and laugh just like any other kid, they throw fits too, just like any other kid...

But if you saw our family somewhere, you may never know that 2 of our kids have Type 1 diabetes.. until
 you looked in my purse...and saw glucose meters, tablets, apple juice, jerky and candy...
or until you looked at their fingertips and saw all of their tiny pricks of red from checking their blood...

Thats one thing about Type 1, its an unseen disease.......

Day 29

Today we went to a strawberry field to pick strawberries.. My kids loved it but as you can imagine, they were high afterward...sneaking too many yummy strawberries!!!!

Pretty much I would give anything to live here.....beautiful huh???

Day 28

I finally broke in and got medical bracelets for the kids..I searched and searched for cute ones that didnt cost a lot.. But I had a hard time finding that.... well, finding just what I wanted...So, I paid the money and got what I liked... Here is a picture of Craigs.. He also has one that is the same but the band looks more like a a watch and is black.. Madis are all this silicone ones...She can change out the colors too which she likes (it came with 8 colors) .. Hers of course is smaller as well:)

because this is something i want my kids to wear at all times, I had to get something that I knew they WOULD wear.....

http://www.americanmedical-id.com/

Day 27

I wanted to share a little info about the kids' meters... Here it is..and Ill tell you what they do with it...

Okay the Meter..This is the computer of the system...It inputs the blood glucose and also keeps the log of the numbers..Its is nice to be able to look back and see the date, time and glucose number...

Test strips- these are tiny little strips about a quarter inch wide ..One end goes into the meter and the other end is where they put a drop of blood...This tiny strip is a dollar!! I was so surprised when I found that out...Especially because my kids test about 10 times a day per kid, so yes, I am very thankful for insurance:)

Lancet- this is what pokes the finger..You press a little button and a needle shoots into the finger very lightly, just enough to give drops of blood to test.

Lancet needles- you replace the needle every time you check..

Alcohol wipes- pretty self explanatory...gotta be clean!!

These are just some of the supplies we have to have on hand at all times..I have one in my purse, one in Craigs baseball bag,  one in the car, several at home...they are everywhere!!!! We started off with just a few, but with 4 kids and always on the go, I had to get a few more because I needed to be sure whatever happened, or if we were in a hurry we would always have at least 1 around...

Day 26

Oh last night was a rough one....I put Madi to bed like normal.. but about 3 hours later she woke up and all I hear was screaming..I was down stairs.. I ran upstairs to see what was going on adn she was just ysterically screaming..I asked if she had a bad dream and then I noticed she was very sweaty... I got a eter really quick and checked her glucose...

She was 62...So I hurried to get her soem juice., she was totally annoyed that I was making her drink juice in the middle of the night, all she wanted to do was go back to sleep... But she drank it, then I had to check her again 15 minutes later.....Its the 15/15 rule..
If they are low, they have 15 quick sugar carbs then wait 15 minutes and recheck. If they are over their goal number then they can then have a carb protien snack, if not, they have to have another quick sugar and do it all again.

Well I rechecked her and she was not high enough..she had only gone up to 97..

So she had to drink more juice, but she really did not want to..she fought it a little, but I let her watch a little tv...Finally she was above 150 so she could have a snack, but she really did not want a snack...She barely ate anything..It was so hard because I was a little stressed about the whole thing and her waking up so low...Then she didnt even want to eat anything to get herself higher...But by midnight she was good and back to sleep..Oh I am so tired today!!!!

Day 25

When Madi was first diagnosed, she had a very hard time with everything..crying at every poke and shots, well those were even worse....SO when we got home we made a sticker chart..The first one was for if she didnt scream..then the next sticker chart was for if she did not cry.  They worked well and her reward was to go see a movie..She really wanted to see Brave, so she has been waiting and waiting for it to some out..Well tonight, she finally got her reward for being so Brave:)

I love this little girl, she is definitely brave and so strong.  She is such a trooper and helps me be strong every day. She does so great with all of her finger pokes and most of her shots.. She will ask sometimes why she has diabetes....or say that she doesnt want it...Typical Im sure for a 4 year old. But she has a very strong spirit and she has been amazing!!

Day 24

I read this today

"Living with T1D is a constant challenge. People with the disease must carefully balance insulin doses (either by injections multiple times a day or continuous infusion through a pump) with eating and daily activities throughout the day and night. They must also test their blood sugar by pricking their fingers for blood six or more times a day. Despite this constant attention, people with T1D still run the risk of dangerous high or low blood sugar levels, both of which can be life-threatening. People with T1D overcome these challenges on a daily basis."

 http://www.jdrf.org/index.cfm?page_id=102585

 That last line got me a little.... a lot of people think that after time, everything becomes "normal again"

But that is a mis conception... Living with T1D has different challenges every day...One day you will be high...and one day you will be low, things like stress, sunburn, sickness, lack of sleep, excersize or lack of excersize.. can affect the levels as well...

On that web page I also read a few quotes from kids..and here they are:

"Both children and adults like me who live with type 1 diabetes(T1D) need to be mathematicians, physicians, personal trainers, and dieticians all rolled into one. We need to be constantly factoring and adjusting, making frequent finger sticks to check blood sugars, and giving ourselves multiple daily insulin injections just to stay alive."
- JDRF International Chairman Mary Tyler Moore

"to stay alive"  wow, insulin is what keeps my kids alive...Its that real!....That tiny bottle of clear fluid...keeps my kids ...alive.

"It is a 24/7/365 job. We never get to relax and forget about food, whether we've exercised too much or too little, insulin injections, blood sugar testing, or the impact of stress, a cold, a sunburn, and on and on. So many things make each day a risky venture when you live with T1D."
- Mary Vonnegut, adult, Rhode Island

It kind of made me a little sad reading them.. because I know them to be true... SO many kids (and adults) struggle every day for "normalcy" ....

I am SO proud of my kids for fighting the fight and finding their new "normal"....
For not giving up on the things they want to do just because it is "harder now"....

They have a "harder" life, and although they dont need sympathy, sometimes through our busy life I am reminded of how hard things are for them.. The finger pricks, shots, stresses of it all.....

 Its just... a lot.

Madi had a dentist appointment today and she was very tired after...I had to check her glucose and she was just so tired and did not want to deal with it..she said "I just dont want diabetes mom"..
moments like that make me sad...
and although we do our daily lives and go on with things, days like this remind me of the constant struggle they have every day... It really is a lot for a child to deal with..They have days where its just how it is, and they also have days where they really hate it....
.I love my kids so much....They are really great kids and I know as a family we can do our best to make things easier for them, but its a life long disease so its really up to them to stay strong and just chug along.  Im continually thankful for faith and prayer as well...

I love this blog because I believe it is so important for people to know about this disease...and to know what people with this disease have to go through...T1D patients are amazingly strong people!!!

Day 23

After spending many days and nights in the hospital..and having 2 children diagnosed with Type 1 in such a short amount of time, our family has decided to do something.....
When kids are diagnosed and sent to the hospital, they have to stay there long enough to be educated, educate the family and for them all to be comfortable to do injections an live this new life they have (this is usually 4 days unless they are there longer...)...
Besides the fact that their life is now different, and they have Type 1 forever, the shock of everything else is a lot for a child (and a family) to sustain.....
When I was in the hospital with Craig (I stayed the whole time and never left), there was a lot of information and new experiences we had to have.....I would say endure, but now its what we do every day so it doesnt seem as much like enduring..its just life...
The kids have long days...And it can get boring...
The last day I was there with Craig he was driving me nuts with a ping pong ball
...ping...pong...ping...pong..all over the room!! hahah

When I was there with Madi, there was a little boy (age 6) who was also just diagnosed.. He was often by himself in the play room (that is only open certain hours..)...His parents did not stay with him in the hospital..I felt so sad for the little guy... Although I can understand how hard it is to stay there...and that people need to work and everything...I mean these diagnosis arent something anyone plans for....

But anyway noticing him by himself a lot made me realize how blessed we were that I could stay with my kids..and that Hain could bring them things they wanted..or needed...

We have decided to put together bags... unboredom bags!! For these kids who are stuck at the hopital for days at a time... Here is a paragraph from Craig:

"I think that this project is a great one because it helps kids in the hospital. When kids go to the hospital some parents can't stay with their kids and this can give something for the child to do while their parent or caregiver is gone. Also the hospital is a pretty boring place when they don’t have activities for you to do. You have to sit in you room all day!  This can give a bored child something to do and they can have fun at the hospital. So please donate for children that are in the hospital today, you can give a child something to do and make their stay “that much better.”


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)
• Silly puddy

Friends and family, please thin of us when you are doing your school shopping... Pick up something "extra" to help with our project.  We as a family are so excited to be doing this and I know that it will help many kids who are going through a very difficult time in their life, to have a bit a "fun" in the hospital:)  To forget he constant shots and pricks they are dealing with...and to enjoy a few minutes of their days.....THANK YOU!!!!

We will be collecting these items at the end of summer..and then going full force with Craigs school (they have agreed to help in this project as well!!)  and then putting together the bags and delivering them as well, by October....

Day 22

I found this today...Misconceptions about Type 1 (T1D) A great read.....tomorrow I will share about a family service project we are starting soon!! Thank you all who read this blog!!

By Catherine Marschilok, M.S.N., C.D.E., Board Certified in Advanced Diabetes Management

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.

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.

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.

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.

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.
http://www.jdrf.org/index.cfm?page_id=105381

Our family is very active and that is a great thing:) It really helps to keep their numbers in a good range, although keeping them high enough is sometimes a struggle, we notice that when they are not active, it makes their numbers more erratic and high....Keep healthy!!!

Day 21

And...he's off....for a week long boy scout camp... It took a lot to get him prepared and get all of his supplies ready.. Lots of jerky and juice, quick sugars, and 15 carb snacks...insulin, needles, wipes and strips.. extra meters just in case, water and more!! But we did it and I am praying everything goes well for him.. I was up last night puking and have been praying ever since that he didnt catch anything before he left...Thats one of the worst things someone with Type one can get.. because if they cant keep food down, then they cant keep their levels up and that means a trip to the ER... Which we had to do about 2 months ago for Craig... So while he is gone this week, he should be having the time of his life!! and me, I'll be worrying and praying!!

Day 20

Diabetes according to Madi, a 4 year old...

What is Diabetes?
Um, I think it is that you have to check your blood and get insulin and go to the hospital..

What does it do to your body?
Makes me have diabetes

What does insulin do to your body?
It makes me healthy and good so I cannot die.  It makes me cool.

What happens if you are low?
 JUICE!

How are you different from your brothers?
Craig has diabetes and I do too.  But Landon and Carter dont....

What is a good thing about diabetes?
That I like to check my blood except for my pinkies! But I dont like to get insulin because it hurts me.


What is something about diabetes that you do not like?
I dont like shots with the pen...


Is there anything you cannot do if you have diabetes?
no, this is so cool, I can flip and do underwater things like a hand stand.


And diabetes according to Craig, a 12 year old....


What is diabetes?
It is when your body does not produce insulin anymore..

What does it do to your body?
It makes it so I have to get a shot and makes my blood sugars all over the place.

What does insulin do to your body?
My body makes the food I eat into sugar, and the insulin turns my sugars into energy.

What happpens if you are low?
I have to get an apple juice so my levvels can go up.


How are you different from your siblings?
My body doesnt produce insulin so I have to check my blood a lot and get insulin shots..And go to the hospital more.


What is a good thing about diabetes?
I can teach my sister about it, and how she can use it to do good things like not be scared.


What is something about diabetes that you do not like?
shots

Is there anything you cannot do it you have diabetes?
Go in the army...

Day 19

Tonight we got the kids in bed..and I was so glad because I was exhausted!! Then I realized we didnt check madi before she went to bed.. I had run to the store when I remembered so I called my husband...he went to check her...she was asleep... SO he checked her and she was low...ugh!! So we had to wake her up and give her carbs and protein to get her through the night.... Sometimes Diabetes is a pain!!

Day 18

Today I wanted to share the signs of high and lows.... Because if you know someone with Type 1, you may need to recognize the signs to help them...
For me as a mom, I figured the more people that know the signs, the more people are looking after my kids..and recognizing the signs if they had  a low...
 So after Craig was diagnosed I went to the school.. taught the teachers and principal...I also went to Craigs Boy Scouts and talked with them..

I figured obviously they would be with him on the camp outs, not me...So again, the more people who can recognize the signs, the safer my boy is!

So here we go...

Kids with Type 1 have no glucose meter in their body so they may not notice if they are getting low ,,or if they are high..especially people as young as Madi... Craig can "feel" when he is getting low.. how??

Low glucose signs:
Symptoms of hypoglycemia include the following:

• Shakiness
• Dizziness
• Sweating
• Hunger
• Headache
• Pale skin color
• Sudden moodiness or behavior changes, such as crying for no apparent reason
• Clumsy or jerky movements
• Seizure
• Difficulty paying attention, or confusion

With these symptoms, the person needs a quick sugar, tablets, soda or juice, stuff like that to get their levels up....


Signs of High....
 Symptoms of Hyperglycemia

• Thirst (dehydration)
• Frequent urination
• Blurry vision
• Stomach pain
• Increased hunger
• Nausea
• Drowsiness, lethargy, exhaustion
• Confusion
• Sweating
• Fruity, sweet, or wine-like odor on breath
• Vomiting
• Inability to concentrate
• Weight loss (a longer-term symptom) that eventually leads to coma

 If a person is high, they need more insulin...

Day 17..an honest truth........

Let me tell you, its kind of hard to keep up with a daily blog!!

so why am I doing this??

• Some People dont know there are 2 types of diabetes.
•  
• Some People do not KNOW what Type 1 is
• 
  
• Some People think they know, but they dont
• 
  
• There is NO cure for type 1
•  
• People diagnosed have it for life...

• You cannot fix it by eating a certain way...or not eating carbs..

And let me tell you also, before my kids were diagnosed, I was one of those people..I had no idea there were different types of diabetes..
Ill share a quick story.. a few years ago I watched Dr. Phil..There was this lady on there who had a very obese child.. It was sad, this kid was very unhealthy..she was facing many health problems because of it... The mom said "If my child wants McDonalds, Im not going to say no!"  This mom clearly wasnt looking after her childs best interests.. Lets be honest here, if we gave our kids everything they wanted well... it would be insane!! They would be unhealthy, tired and grouchy.. unmotivated too!!

So why am I sharing this?

Because when I heard "diabetes" I thought of unhealthy people, people who were maybe overweight, or ate unhealthy and did not excersize, maybe older people......

And if I thought of a child with diabetes, then they must be very unhealthy right??

Completely wrong... Im just being honest here..because hey, I knew nothing...I was uneducated...

After learning there are 2 types of diabetes, I learned more... and then learning Type 1 is not "caused" by anything a person does, I learned more..and more.. and now we live with it everyday..

I live with people thinking MY kids are unhealthy...

I have heard
"You have a sugar house"
"Your kids are unhealthy"
"Teri ate too much sugar when she was pregnant thats why their kids have this"
"They will grow out of it right"
"Life is back to normal right? Its been a few months"

And those are all statements that were said.. not made up..yes, people actually said them!! Who knows what people say when I am not around...Its very upsetting to me.. although it shoudlnt be, because I know they are false.. My kids are very healthy and active.... but it does bother me...

SO I made this blog.. to share the things that Type 1 IS...what it looks like...and also, what its NOT....
because my general idea on the subject is that people just don't know.....So if you are reading this, thank you....so much!!

This is what Type 1 looks like....in our family...

Type 1 in our family is a boy scout, a pitcher, an allstar baseball player, a great student, a sassy attitude, a sense of humor, goofing off, a hard worker, a ballerina, a smarty pants, a person who loves God, and a whole lot more!!! SO when you think of Type 1, or hear it, you'll see a lot more than someone with a disease..........

Day 16

Today was...

• A low for Madi...63 to be exact.. not good ...caused by what else?? swimming (which she had great numbers the whole time, 3 hours of swimming and we kept her numbers up the whole time...then we went home and her numbers crashed..and quick!! Swimming is a lot of fun, but it can get scary...

• .. and Craigs low was 93..which is the lowest he has been in a long time.. He has been so high lately.. 300-480.....But since he is off to scout camp next week which is a vigorous day filled with a lot of activity, we are not upping his dosages quite yet.. After camp he will be upping his Lantis though.. and getting more insulin, because it looks like thats what he needs now...

Nope, theres never a day where they both have really great numbers..Everyday is different..and one of them has an issue.. But I know it will get better eventually right?? someone tell me Im right :)........

•  also a "fill the prescription and leave with a grocery bag full of supplies" day.....

I am very thankful for modern medicine.... and insurance on these days!!!

Day 15

I read this web site..Its geared towards kids...
http://kidshealth.org/kid/diabetes_basics/what/type1.html#

I loved reading this
"Even though kids with diabetes have to do some special things, it doesn't keep them from doing the stuff they love. They can still play sports, go out with their friends, and go on trips. So if you have a friend with diabetes, let him or her know you can deal with it. Being friends is all about having fun together, not having a perfect pancreas!"

Because although my kids have diabetes.... they can still have fun and do normal things..I dont want people to not invite them to something because they think its a hassle, or think my kids cant do certain stuff, or eat certain things..They can do the same things your kids can do...They just have a dead pancreas...But they have the same spirit....They have amazing spirits..and although their body isnt always strong, their spirits are... I am so blessed to have these kiddos.

Here are a few more things from the web site....

Living With Type 1 Diabetes

 

Maybe a kid you know always eats a snack during a soccer game or goes to the school nurse before lunch to get a shot.

If you have a friend or a classmate like this — or this sounds just like you — you're not alone. Thousands of kids all over the world do stuff like this every day because they have type 1 diabetes (say: dye-uh-be-tees). What is it? Let's find out.

 

Kids who have type 1 diabetes have to pay a little more attention to what they're eating and doing than kids without diabetes. They need to:

• check their blood sugar levels often
• give themselves insulin shots, have someone help give them shots, or use an insulin pump
• follow a healthy eating plan so they can keep blood sugar levels under control and grow normally
• exercise regularly
• have regular checkups with doctors and other people on their diabetes health care team so they can stay healthy and get treatment for any diabetes problems

Kids with diabetes will have to do special things sometimes, like eat a snack on the bus during a long school trip. Or they might have to wake up earlier than everyone else at a sleepover to take their insulin and have some breakfast to keep their blood sugar levels under control.

Day 14

Day 14..
Well when the kids were at Phoenix Childrens Hospital, someone from JDRF comes and gives them a backpack full of information, a plush bear (with all of the injection sites colored different colors) , a video, some books, cards, ect.. Lots of fun stuff..

 JDRF- Juvenile Diabetes Research Foundation JDRF has built a nationwide network of Advocates who are dedicated to finding a cure for type 1 diabetes. We are all working together to advance the search for a cure faster and more effectively. JDRF is the leading global organization focused on type 1 diabetes (T1D) research. Driven by passionate, grassroots volunteers connected to children, adolescents, and adults with this disease, JDRF is now the largest charitable supporter of T1D research. The goal of JDRF research is to improve the lives of all people affected by T1D by accelerating progress on the most promising opportunities for curing, better treating, and preventing T1D. JDRF collaborates with a wide spectrum of partners who share this goal. Anyway its a great program..

 Madi was very excited to get her very own backpack... But they were all out when she was in the hospital..so she actually got hers in the mail.. She opened it and got the same bear the Craig got.. We though it would be cool if she got a girl bear...Well they apparently dont make girl bears anymore.. so .....we made our own!! We took the bear she got and made a dress for her...The bear is named Rufus and comes with a book about Rufus and diabetes.. Well meet Coconut (I dont know why she is named that!! Madi chose it:)


The special thing about this bear is that it has patches in all of the areas that the kids get their shots..So the kids can see on the bear as well as on them...

  Rufus and Coconut...

 

 Madi was very excited:)

Day 13

well I had a little time this morning so I thought I better get to writing about the past few days...

First off, her signs:
she had to go potty all the time..like every 20 minutes..sometimes even more.. she was hungry and thirsty all the time, even in the middle of the night..

Lets be honest here, the thought that Madi could be Type 1 Diabetic did not run through my mind...even after just going through this with Craig...
Im sure it was denial.. but I again thought UTI...I have heard of young kids getting UTIs, although none of my kids ever had..or maybe she was just being a 4 year old and had to go a lot..

But..the moment I made that phone call to get her in for an appointment I had a sick feeling in my stomach...but again I ignored it and was going to be babysitting that morning, so Hain took her...I wasnt worried that morning..

I was babysitting and cleaning and text Hain to see if they got a room yet at the pediatrician..He called me right back and said "Nope, we are not in a room anymore..we are on our way to the lab"

My stomach sunk and the words came out of his mouth "madi is Diabetic too"

Tears just started flowing....I was a little preoccupied because I was babysitting 2 young ones, but the tears and worry wouldnt stop..I had to call their mom and she picked them up....There was no way I could handle babysitting under the worry and stress I was dealing with at this time..

I waited patiently (okay okay, I am not patient, lets be real....) for Hain to get home.. he and Madi walked in..her usual smiling face, but all I could see was MY worry and MY pain...she looked her normal self.....

How on earth are we going to do this?? She is 4...just our baby....I cannot do this... I really cant.. My sweet girl...

The doctor told us they would be calling a in a few hours to tell us the out come of her labs and let us know if we needed to head to the hospital.. They called back and said her levels went down from the time they checked them in office, to the lab.. SO they made an appointment for us for Monday..(It was Wednesday)  By 5 pm I thought we should check her blood.. I was taking Craig to get a haircut, the boys had 2 games that night and no one had dinner yet.... but I checked it really quick..Yes, she screamed the whole time... Well her glucose was 564....That worried me.. I called the doctor and they called back within minutes..."Get her to the hospital" is what they said...
So we left the hair cutting place with no haircut, Hain took the kids for dinner and I went home to pack a bag for the hospital.. Ya, we have done this before.... we were gonna need clothes....

On the way to the hospital there was a storm, a huge storm rolling  in...It was super windy and dark..I felt like thats how my life was at that moment...I couldnt stop crying every time I thought of it..and the long road ahead for our little girl...

and for us..Its hard..

Dealing with Type 1 Diabetes is HARD...Its a lot for the child.. pokes and shots, several a day..watching for lows and making sure they get up to a good number, making sure they have the right snacks for that, making sure we count carbs for every meal, doctors appointments, pharmacy bills......

People have said in the past 4 months about craig "Is it all normal now?, You guys have it all figured out now right?", and "Well, it all will get easier"

ya things got a little "easier" but it is a constant thing..a constant worry.. about numbers..and its never normal...we have 4 kids...and if you have 4 kids you know its hard to keep up..with school, sports, scouts, callings, laundry and cleaning... so add in all of the things that come with Type 1..blood checks, lows that require fixing, doctors visits, pharmacy visits and bills....Dealing with his school had been hard too..They have been great, but just everything that comes with that as well and making sure he is okay and comfortable when we are not there... he gets lows at school..and need to leave class.. he was in the hospital a few weeks ago for being sick and puking and we couldnt keep his number up, so he missed school, he missed for doctors appts..he misses a lot of school, then has to make everything up..7th grade is rough anyway..and he is in accelerated classes and he has a lot of work to make up...Its all just been a lot to deal with, for him and us.. But we have been managing..and fighting together as a family to find a new normal...

And we had only been doing this for a little over 3 months..... we are still figuring it all out and even if we have it figured out, its a lot...a lot to handle..and now.. our 4 year old has this? how are we going to do this is all I could think...H..O..W.....

Well Miss Madi fell asleep on the way to the hospital, so I had some quiet time.... to think... and try to be okay with what was ahead... we arrived at the hospital and she woke up just in time.. they got us right in...


Well for a 4 year old, I can only imagine what a hospital visit is like.. New nurses coming in..every one of them doing something painful to you...She had a very hard time.. and I ended up in tears a few times... I had to hold her down..as she looked in my face in terror...screaming and crying... And all I could do is hold her and try to tell her it was going to be quick.. finger pricks..IV pokes... blood draws.. more finger pricks and then by the evening, insulin shots...It was heartbreaking to say the least....I  felt like every time I told her it wouldnt hurt or that it was gonna be okay I was lying to her.. at least in her eyes,, because I knew that she would have to do this every day....even when we go home.....

My sister came and stayed with us for a few hours that night..Hain was of course home with the kids..Luckily baseball games were cancelled due to the storm..although having them go to their games may have been better to keep every ones mind off of what was happening in our family right now...

The hardest part is just seeing your child suffer... be in pain.... be confused as to why this is happening...Madi would cry "I dont want diabetes!!" all I could do is hug her and say "I know, I dont want you to have it either..."

She would yell at the nurses "Get this out! (her IV) and Im going home!!"  And "Im not getting that shot!!"
She didnt want to eat because she knew she had to get a shot for it....She is  a strong little girl..and she speaks her mind, which has given me some giggles the past few days...These poor nurses..ha...they dont quite know what to do with Madi... One nurse even sent a different nurse in because she couldnt handle seeing Madi cry..They all say she is just too cute...and love her hair, so that helps her feel good..they get a quick grin, but that s it.. When any nurse walks in she tenses up and starts whining..she knows what is coming and she doesnt want it...

She absolutely hates the blood pressure checker..she screams at that too....We have to hold her down for pricks and shots..and she screams the whole time..How will I do this at home?? what if Hain isnt home??Im not ready for that...

It has been helpful to have a lot of visitors..yesterday she had quite a few and it really helped get her spirits up...

One sweet thing is that she has been asking about Craig a lot..she wants to call him and talk about diabetes and the hospital..she called him yesterday and they talked about the IV...I think she takes comfort in knowing he has it too..and that he has been here too...when he comforted her about the IV and how he didnt like it either, she looked over to me and smiled....She says he is her new best buddy now..she has been wanting him to come visit, but he cant.. I cant bring him obviously because I havent left the hospital...but we hopefully get to go home today...

And figure out how we are going to do this...because this is our life now...

Day 12

Day 12 and 13 will be the story of the kids diagnosis.. Here is Craigs: I guess it started about 2-3 weeks ago... Our oldest was having a few "issues" and we though he was just growing..he was eating tons of food, and always thirsty.... then about a week ago (I was out of town) my husband realized something was wrong with our kiddo...He called me and said I needed to make an appt at the doctor because he was having to go to the bathroom very frequently..well, that meaning at least every 45 minutes.even at night.. SO immediately I thought UTI..of course thats what it was, all he needs is an antibiotic and we're good..So I made an appt, but they couldnt get him in till this morning(I called tuesday)....SO he did a urine test..then the doctor called me in (you see, Craig is just too cool to have his mommy in the room anymore...sad..sad..) The doctor then tells me that he has no infection..and immediately Im thinking "well SOMETHING is wrong, clearly!"...then he says he has type 1 diabetes... My mind went completely blank......I literally was in shock... I was completely unprepared for that answer....Then my mind started going crazy.. MY kid? Craig? Diabetes? what in the heck? He is a healthy young man.. whats going to happen? Will he be okay? The doctor was answering all of my questions and then I couldnt be strong anymore, you see Craig was right there in the room and I did not want to freak him out, or make him feel bad...but at this point the tears started coming...I mean no one wants their child to suffer, or have something like this, which is a life long disease...so Im trying to stop tearing up and take in everything the doctor was telling me.. Then the doctor was trying to console me..ha.. poor guy!! I wasnt freaking out, but anyway, I tried to calm down for Craigs sake.. I just kept thinking "I dont want him to have this..to have to worry about this, or to suffer" Its just something a parent does not want for their child.... When we left my little boy just cried, he said he was scared...and then I teared up again..Then he was fine..He acted fine anyway, but I could tell he was concerned, and worried... He went back to school though....crazy enough!! As soon as I got home I fb'd if anyone knew anything about it..I figured I needed some close friends resources for sure on this one! I almost didnt because I didnt want to blast it, but at that point I needed some support and answers.. and I also called someone from church who I knew their child had it..As part of the Primary presidency I had learned of her because any time we had treats we would have to let them know..SO she was the first person I thought about to call.. She was amazing..she was supportive and offered answers, what to expect in the next few weeks and just tons of help. after that, I googled it...and got some more info..trying to figure out what it all meant.. I still felt completely overwhelmed..I am a worrier, I've said it a million times.. but its true, I worry about my kids SO much..I worry about everything..and I am a planner... but the near future is unsure, I know a tiny part of what Craig is going to go through, I dont know what doctors visits will hold, how this will all play out, how he will get his insulin..how long it will take for him to start feelign better...I just dont know and that is very hard for me... The next day We got up at 6 am to go get his labs done. It was his first time ever getting blood drawn..and I even told the lady that, well lets just say he did not have a good experience.. She was really insensitive.. he looked like he was gonna faint and he was super shakey... He was glad it was over to say the least! so we went home and I told him he could stay home..I felt like he needed to stay home..Well the hubby said he was fine, send him to school..So I did..and I really did not want to...I had a bad feeling about it...I didnt voice that very well..but I was second guessing myself.. So I figured I would call the doctor at 9 or 10 to see if they got at least the sugar levels..but they said no, that it would take 5-7 days to get back to me..That didnt sit well with me..I just had a terrible feeling, so I called a friend whos daughter has Type 1 as well..she said that was way too long..and he should really be checked.. My knowledge on this was not very good, and I wasnt sure if I was being paranoid mommy, or if I needed to just get him and figure something out... The spirit told me clearly to go get my son now. I did.. I called my friend again, and she offered to test him..we considered doing if later in the day, but I really felt strongly that I needed to check him then..he was a little stressed about getting his blood checked.. Im sure it was more fear of the unknown.. so anyway we went and checked it at my friends house..At that point it was 403..A normal persons blood sugar should be between 90-120...so his was crazy high.. he was pale and looked like he was going to faint..We got him some water and he rested the way home.. I was SO glad I got him from school! I called the doctor again and told them of the reading we got.they said they were not going to do anything, so I asked if they could just send us to a specialist today and they said "His body has managed it this long, he can wait 5-7 more days, if you have any more questions check webMD" At this point I did not know if I should calm down, or trust my feeling and get him seen. We went home and he rested and ate because it was lunch time..I asked some more friends about the number and they agreed it was really high, dangerously, call the ambulance high..SO I called my friend and went over to her house again... I wanted to check it again to see if it went up or down, or stayed the same..She was so helpful in this whole process, and willing to help. SO she tested him again...It was now at 425. Craig immediately starter to break down. At that point I decided we were going to the hospital. I left Carter home (it is his birthday so I felt so sad for him... he had a lame day and I did not get to spend much time with him at all) and got a sitter for Madi.. Dropped her off and we were on our way to Phx Childrens. On the way I called my uncle who is a fire fighter and he said the same, head to the ER... that just confirmed my feelings and I felt much better about taking him.. ON the way Craig cried, he was scared and worried..then he fell asleep..I was glad to see him sleeping, and not worrying so much, he looked peaceful for a moment.. He went from being mad and saying "I hate diabetes" to scared, to this: Craig: mom, is there a fund raiser for diabetes? Me: oh yes Im sure there are a lot Craig: well we need to do one..There are other people out there dealing with this too. I honestly was a little speechless...I could not believe he said that, and he sounded like a grown up..my little boy..He has such an amazing spirit and as I was driving and trying so hard to not cry or show emotion, I just about lost it ...I felt so thankful for his thoughts and words..HIs whole life is going to change...and he isnt depressed or feeling bad for himself...There will obviously be rough days ahead, but I was thankful for his good attitude. When we got to the hospital we were approached, I told them what was going on and they got a room for us immediately..They checked his levels and they had gone even higher..then it was more pokes, blood draws, and IV and lots of people with lots of questions and information. He finally got to drink something..and he was so excited because they gave him a diet coke.. we rarely buy soda..and never caffeinated ones..ha, so he thought he was cool to get to taste diet coke!! Now we are in our room..We will be here for 3 days at least..We have been given a long binder of info to read through..I have to give him a shot in half an hour...I HATE needles, blood, shots or anything like that, so I am not sure how this will go...It totally stresses me out.. The nurses have been great and Craig is feeling better and is very optimistic..which is good since this is a life long disease. I still have lots of worries..questions and a lot to learn to be able to care for him...This will be a long emotional road...for the whole family..we need to educate the other kids so the can understand what is going on with their brother.. After this point, we spent 4 days in the hospital...

Day 11

Today both kids had an endocrinologist appointment.... It was nice to be able to take both kids at the same time... But that meant 2 co pays as well..and I totally didnt think of that!! Every month its $50 for Craigs insulin, $50 for Madis insulin and today it was $70 for their doctors appointment...Plus the cost of their snacks... See they need certain snacks that are "free of carbs" to eat with out getting a shot..although they can have carb snacks, but if you had to get a shot with everything you ate, wouldnt you want a few snacks with out getting a shot?? Plus the cost of gatorade and juice (which keeps their number up while they are active)..Its just a lot of extra cost that adds up....Although I do know we are very blessed to have insurance to help with the costs.. because although this has added over a couple hundred dollars a month to our bills, if we did not have insurance, the insulin, test strips, lancets and diabetes supplies would cost over $1000 per child...can you even imagine??? Thanks goodness for insurance!

Day 10

This picture I love... about 4 months ago when Craig was diagnosed, we really tried to "keep life going"....I didnt want everything to stop for him... He continued to do baseball and this picture is just a few weeks after Diagnosed...His team won the spring championships! He got a gold ring and was so excited... We were very proud of him.. just because you have a hard disease....doesnt mean you cant do hard things....

Day 9

With diabetes, activity can make your glucose very low and inactivity can do the opposite.. well when we read the kids numbers lately, you can tell how their summer is going...Craig was getting a lot of lows the last week of school, tests to be taken (being nervous can make numbers go low), baseball playoffs (lots of practice and play time)...He would be between 56 and 80 every day about noon.... So the doctors changed his calculations to help get those numbers higher...
Well now, he has been in the 300s, and even 400s...thats not good...

What does this tell us??

He has been sitting around being lazy!! hahaha... Baseball is over, and school is out..He has been loving sleeping in, playing his ipod, watching TV and pretty much not being active at all!! SO this means we have to change his calculations AGAIN... Its always changing...High numbers means he needs more insulin..... or he is dehydrated...but being his mom, I can say he needs more insulin or he needs to be more active..because I see him relaxing all day!! And I am fine with that.. we have been so busy the past 3 months with baseball and life..He is a super active kid, so Im all for letting him relax a bit this summer!!  we do go swimming and that gets him low fast.. Madi too.. She shoots right down to the 80s when she swims.. even the 60s sometimes... We are learning how much carbs she needs when she is active, but its hard sometimes...
The key is to have a healthy active lifestyle.... which of course is good for everyone:)

We went swimming today.. here she is having her juice because of course..she was low...she wasnt too happy because that means she has to sit out until she gets high enough to swim again...


 this is how she jumps in... like she is sitting on water.. she is so funny!!

But as you can see, she loves to swim!!

 here is Craig and Landon.. Craig ended up at 58 while swimming.. ugh!! Its so hard.. they eat constantly when swimming to stay above 80... but kids can only eat so much!! and swimming is a very active sport!!

Day 8

This is Craig just a few weeks after diagnosis... He continued to play baseball and we had to figure out how to manage his diabetes while he was active.  It may sound easy, but its all like a numbers game..Its different for every person, situation and different every day really!

One thing that we struggled with for Craig and are now trying to figure out with Madi is excersize... With Craig, he is very active in baseball and after his diagnosis it was very hard to determine how many extra carbs he needed, when he needed them, and how he got them to keep his levels up during the game.. With baseball, sometimes he is running and exerting a lot of energy, sometimes its more laid back, and sometimes he is pitching and using a lot of energy...
     It took him getting low a few times and us trying to figure out how his body reacts to exersize and carbs to know whet he needs when playing... He is pretty good now, he snacks on jerky during the game, and has gatorade as well to keep those levels up while playing.  If he is high, he drinks extra water.   This keeps him at a good level so he doesnt pass out or something!! Also, with him being 12, he can tell when he is getting low...We also change his carb ratio when he has a game or practice.. He eats extra carbs before hand and that helps too. 

     Madi on the other hand is sparatic..She is 4, so sometimes she just wants to chill and watch movies and sometimes she is wild and running around like crazy!  That makes her numbers up and down!!   She cannot tell us when she feels her levels getting low...I dont like that..Its one of those hard things about diabetes... Its not something you can see...I know eventually she will be able to tell if her levels are getting to a low number..but for now, its a lot of finger pricks to see where she is at...


For Type 1, there are calculations we do to figure out how much insulin the kids need...

First there is a correction calculation... This is the number your blood glucose is at (which you test on the meter by pricking your finger)..This number is divided by a number (which is different per person)   This calculation gives you  a decimal number

The second calculation is your carb ratio.. You take the number of carbs you are going to eat and divide it by your meal bolus (another number different for each person.. Madi is 75 and Craig is 45)
This gives you another number...

We add those 2 numbers and that will give us the amount of insulin the kids need....See what I mean about more time.. and calculations! We do this for both kids before every meal.....


Here is a quote from JDRF:
Type 1 (T1D, insulin-dependent or juvenile)
Type 1 diabetes (T1D) can occur at any age, but most commonly is diagnosed from infancy to the late 30s. In this type of diabetes, a person's pancreas produces little or no insulin. T1D occurs when the body's own defense system (the immune system) attacks and destroys the insulin-producing cells in the pancreas. People with T1D must inject insulin several times every day or continually infuse insulin through a pump.
While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and-at present-nothing you can do to get rid of it.

Day 7

...Yes 2 of our children have Type 1, but we are a family.. We support each other through everything...This picture was actually taken on Mothers Day this year.. I was so glad to be home from the hospital with Madi by mothers day.  To be all together again...When both kids were in the hospital, I stayed there the whole time and let me tell you, I wouldnt do it any other way.  Madi was so worried I was going to leave,,....not a chance!
 It was so nice to go back home each time though and be together again as a family. 
Type 1 is a somewhat complicated disease...Its a lot about numbers and guessing and calculating....It not only affects the 2 kids, but the whole family.  We all have to adjust... Our timing when we have dinner..taking the time to check glucose and calculate, then dose both kids... adjusting bills to pay for doctors, hospital, and prescriptions....Adjusting a lot of things... But I know if we stick together as a family, and do this as a family, we will be fine..and even more than fine, we will be great.. Our kids will all be just great!!
This disease is not a burden on our family...Its just how our family was meant to be....I love my kids more than anything and I'm just glad I can be here to help them.  Its hard, yes...but its ok...My kids are still the same kids they were... They have the same spirit, the same attitude and the same spunk!  They just have a bad pancreas!!  We can totally do this.

Day 6

Today the topic is food...One common misconception with Type 1, its that it is the same as Type 2 diabetes.. Well Im here to tell you its not...Type 2 can be managed by diet and excersize most of the time..With type 1, that is not the case.. My kids can eat anything their siblings want to eat... Craig and Madi can eat candy bars, have soda and go to birthday parties that will have cake....They can eat anything a "normal" kid would eat.. The difference is that their body does not produce insulin, so they have to get injections of insulin... No matter what they eat for their meals, they have to get insulin with every meal..Unlike type 2, type 1 is not caused by food, or unhealthy habits.. Type 1 is not preventable...This is something that I have struggled with.. People saying that its our fault because our kids are not healthy....And although I know our kids are very healthy and active, it bothers me that people may think otherwise...
     They do not have to get low carb food items, they can have potatoes and bread, they can have pizza!!  They have well balanced meals.  So now you know.. Type 1 diabetes is not caused by anything Craig and Madi did, or didnt do, and it was not caused by anything my husband or I did or didnt do...

Our dinner tonight..pork roast and gravy, salad, strawberries and grapes, sweet potato fries and baked beans...

Here is some info from Mayo Clinic.com
Type 2-
Type 2 diabetes, once known as adult-onset or noninsulin-dependent diabetes, is a chronic condition that affects the way your body metabolizes sugar (glucose), your body's main source of fuel.
With type 2 diabetes, your body either resists the effects of insulin — a hormone that regulates the movement of sugar into your cells — or doesn't produce enough insulin to maintain a normal glucose level. Untreated, type 2 diabetes can be life-threatening.
There's no cure for type 2 diabetes, but you can manage — or even prevent — the condition. Start by eating well, exercising and maintaining a healthy weight. If diet and exercise aren't enough to control your type 2 diabetes, you may need diabetes medications or insulin therapy to manage your blood sugar.

Type 1-
Type 1 diabetes, once known as juvenile diabetes or insulin-dependent diabetes, is a chronic condition in which the pancreas produces little or no insulin, a hormone needed to allow sugar (glucose) to enter cells to produce energy. Type 2 diabetes, which is far more common, occurs when the body becomes resistant to the effects of insulin or doesn't make enough insulin.
Various factors may contribute to type 1 diabetes, including genetics and exposure to certain viruses. Although type 1 diabetes typically appears during adolescence, it can develop at any age.
Despite active research, type 1 diabetes has no cure, although it can be managed. With proper treatment, people who have type 1 diabetes can expect to live longer, healthier lives than in the past.
 Type 1 diabetes is a serious disease. Following your diabetes treatment plan takes round-the-clock commitment, which can be frustrating at times. But realize that your efforts are worthwhile. Careful management of type 1 diabetes can reduce your risk of serious — even life-threatening — complications.

Day 5

Today was a lazy day for the kids..They pretty much played electronics all day... But here is a quick picture.... Taken at almost 10pm, when they should be in bed!! Besides having Type 1, they are pretty normal kids! Madi has  this scarf on because she thinks its beautiful!

 

 Today I went shopping for groceries since Friday was pay day.... One thing about shopping is that i have to look for "free" things the kids can eat.. Free means they can eat it without getting a shot... Pretty much they can have anything under 10 carbs, or something with no carbs, which would be protien..Cheese sticks, beef jerky, or a small amount of fruit, vegis are great too.

I can only imaging how boring this can be for them... when there are a limited amount of items they can have for "free"..Craig is at the point where he doesnt care, if he wants an extra snack like a brownie, small bag of chips, cheese quesidilla, or whatever, he will just get an extra shot for it.. But Madi, if its not free, and she has to get a shot for it, she doesnt want it..and she will just have a cheese stick... She isnt too fond of her insulin shots..

Here are a few question and answers about Type 1..please read them.. I found them online, and they really help you understand what Type 1 is in simple terms...

If you have type 1 diabetes, your pancreas cannot make any insulin. You must take insulin to
live.
How does insulin work?
Insulin lowers blood sugar levels by moving sugar (glucose) from the blood into the cells
of your body. Once inside the cells, glucose provides energy. Insulin lowers your blood
glucose whether you eat or not. This is why you must eat on time if you take insulin.

 Can insulin be taken as a pill?
No. Insulin is a protein. If you took insulin as a pill, your body would break it down and
digest it before it got into your blood to lower your blood glucose.

When Does Type 1 Diabetes Occur?

Type 1 diabetes occurs when the body's immune system attacks and destroys certain cells in the pancreas, an organ about the size of a hand that is located behind the lower part of the stomach. These cells -- called beta cells -- are contained, along with other types of cells, within small islands of endocrine cells called the pancreatic islets. Beta cells normally produce insulin, a hormone that helps the body move the glucose (i.e., sugar) contained in food into cells throughout the body, which use it for energy. But when the beta cells are destroyed, no insulin can be produced and the glucose stays in the blood instead where it can cause serious damage to all the organ systems of the body.
For this reason, people with type 1 diabetes must take insulin in order to stay alive. This means undergoing multiple injections daily or having insulin delivered through an insulin pump and testing their blood sugar by pricking their fingers six or more times a day to acquire blood samples.
Along with insulin therapy, people with diabetes must also carefully balance their food intake and exercise to help regulate their blood sugar levels, in an attempt to avoid hypoglycemic (low blood sugar) and hyperglycemic (high blood sugar) reactions, which can be life threatening.

Day 4

 

today is kind of a boring picture... But I had to go get new prescriptions for Craig today...He needed: pen tips (needles), meter strips (to check his blood), 2 kinds of insulin, and lancets (finger pricking needles).  We always leave the pharmacy with a grocery sized bag!!

 This picture is of the 2 kinds of insulin he uses.. Humalog, which he injects 3-4 times a day before his meals and Lantis, which he takes once a day and is the long acting insulin (same for Madi).. Also the green pen looking thing is an insulin pen. There are a few ways you can get your insulin; the pen, syringes, or a pump (which Craig is totally against trying)  Madi is completely against trying the pen, but Craig tried it a month ago and really likes it.  It is a lot more convenient as you can see how small the small pen tips are.  Also if we can get Madi to be comfortable with the pen, we wouldn't have to carry syringes around with us, just these small pen tips..But for now, she is not interested so we use syringes for her.  I have no plans to force my kids to use anything.. Someone told me that I needed to convince and force Craig to use a pump.. No way..it is his body and he can use whatever he is comfortable with.  Im not the one getting shots all day, so I cannot tell him to do any certain kind of injections... And I wont.. And the same for Madi..until she is comfortable trying the pen, we will just do the syringe needles.