well we learned that for some crazy reason..Madi's pump was not approved by our insurance.
We put in a request for Craigs pump and got a call saying its covered 100% and they will mail it that week..
We do madi's request and we got a denial and a long letter stating why..
Why?
"Not medically necessary"
No proof of diabetes.
No proof that we have been to diabetes education training.. (really??, we've been there TWICE!)
so needless to say we have to appeal it and go through a long annoying process..
When I told Madi her pump was not approved she started crying... and said "why?!"
Then 5 minutes later she said "fine! Then I dont even want the pump!"
That day she cried "I hate shots" twice while getting 2 of her 7 injections she got that day...
Monday, April 22, 2013
Thursday, April 18, 2013
Day 191
The other night when I was up checking Craigs glucose at 3 am, he was low. I went and got him some juice. He sipped it all with his eyes closed.... Then 15 minutes later I rechecked him and he was good, so then he had to have a protein snack to sustain him until the morning, because well, juice is a quick sugar and will wear off soon..
Well he had to actually wake up...at 3 am..and have a snack.
No one really wants to eat at 3 in the morning..
I felt so bad for him..
I knew he had not slept well and wasnt getting "good" sleep when he has to be woken up to eat..
But I also knew that he had to get up by 530 in the morning to go to an early morning soccer practice..then go to school all day after that and do his AIMS testing.
"I" knew this...
Then the next day his scout leader sent a message to see if Craig would be going on the camp out this weekend...
I thought about it and decided I couldnt sent him. He had just had a night low and well, I cannot ask his scout leader to check him in the middle of the night and I cannot count on Craig to wake himself up to check.. so what if they are camping and he has an overnight low??
I had to text his leader to tell him that Craig would not be going.
"I" knew why....
Then another night he was really high at midnight. I dosed him while he fell back to sleep..Then at 3 am he was higher so he had to get out of bed and go check for Ketones.. He had some! SO when that happens it usually means something is wrong with the pump and he is not receiving the insulin...
So then at 3 am we changed out his inset.
What does that consist of?? He cleaned his arm off, and got a new IV about 1/2 an inch long into his arm that connects to the tube he receives his insulin from. Well we took out the old one and yep, it was kinked..no wonder he wasnt getting insulin. after that, he got to go back to sleep...
"I" knew why he was late to school the next morning..
It really made me think about all that goes on in Craigs life..all he goes through..
When he gets to school and he is just exhausted... and his teacher thinks he stayed up to late or is being lazy...when in reality he was up all night with low numbers.
When he rarely makes it to scout activities lately and people think he doesnt want to come or he is slacking...but the reality is we are overwhelmed with the pump and trying to figure all of his numbers out and Im just not comfortable sending him away for a weekend...
When the next day when he doesnt feel good and sleeps in and is late for school his teacher thinks he is irresponsible... but the reality he had been up feeling crappy with ketones and had to change his pump site in the middle of the night.
Those are just 3 examples... but most of the people Craig comes in contact with have NO idea the things he endures..and he just does it.. He goes on with his day after getting up several times the night before..He goes to soccer practice, goes to school. comes home to do homework, chores and tries to find time to see his friends and pass scout things off, all while fighting this disease.
He doesnt really complain about it and he just lives on....
Hopefully soon we will get all of the numbers right and we will not have to check his glucose at night...but for now, we are exhausted...so if you see us and wonder "what the heck??"
thats why!! This is a 24 hour a day disease...
Today he called from school because it is AIMS week and he has to have good numbers to test.. well he was high..Then half an hour later he was even higher.
So he was calling to see what he should do. He had to go to the nurse and change his pump site...at school.... It takes so much responsibility and maturity to deal with this disease how he does and Im so proud of him...
When you see Craig, you dont see all of "this"..
You see a happy, healthy, busy kid..
You dont see the late nights, the blood checks, the highs and the lows, the carb counting, the inconvenient pump site changing, the stress, the ups and the downs...
Its all just behind the scenes in his life....
Well he had to actually wake up...at 3 am..and have a snack.
No one really wants to eat at 3 in the morning..
I felt so bad for him..
I knew he had not slept well and wasnt getting "good" sleep when he has to be woken up to eat..
But I also knew that he had to get up by 530 in the morning to go to an early morning soccer practice..then go to school all day after that and do his AIMS testing.
"I" knew this...
Then the next day his scout leader sent a message to see if Craig would be going on the camp out this weekend...
I thought about it and decided I couldnt sent him. He had just had a night low and well, I cannot ask his scout leader to check him in the middle of the night and I cannot count on Craig to wake himself up to check.. so what if they are camping and he has an overnight low??
I had to text his leader to tell him that Craig would not be going.
"I" knew why....
Then another night he was really high at midnight. I dosed him while he fell back to sleep..Then at 3 am he was higher so he had to get out of bed and go check for Ketones.. He had some! SO when that happens it usually means something is wrong with the pump and he is not receiving the insulin...
So then at 3 am we changed out his inset.
What does that consist of?? He cleaned his arm off, and got a new IV about 1/2 an inch long into his arm that connects to the tube he receives his insulin from. Well we took out the old one and yep, it was kinked..no wonder he wasnt getting insulin. after that, he got to go back to sleep...
"I" knew why he was late to school the next morning..
It really made me think about all that goes on in Craigs life..all he goes through..
When he gets to school and he is just exhausted... and his teacher thinks he stayed up to late or is being lazy...when in reality he was up all night with low numbers.
When he rarely makes it to scout activities lately and people think he doesnt want to come or he is slacking...but the reality is we are overwhelmed with the pump and trying to figure all of his numbers out and Im just not comfortable sending him away for a weekend...
When the next day when he doesnt feel good and sleeps in and is late for school his teacher thinks he is irresponsible... but the reality he had been up feeling crappy with ketones and had to change his pump site in the middle of the night.
Those are just 3 examples... but most of the people Craig comes in contact with have NO idea the things he endures..and he just does it.. He goes on with his day after getting up several times the night before..He goes to soccer practice, goes to school. comes home to do homework, chores and tries to find time to see his friends and pass scout things off, all while fighting this disease.
He doesnt really complain about it and he just lives on....
Hopefully soon we will get all of the numbers right and we will not have to check his glucose at night...but for now, we are exhausted...so if you see us and wonder "what the heck??"
thats why!! This is a 24 hour a day disease...
Today he called from school because it is AIMS week and he has to have good numbers to test.. well he was high..Then half an hour later he was even higher.
So he was calling to see what he should do. He had to go to the nurse and change his pump site...at school.... It takes so much responsibility and maturity to deal with this disease how he does and Im so proud of him...
When you see Craig, you dont see all of "this"..
You see a happy, healthy, busy kid..
You dont see the late nights, the blood checks, the highs and the lows, the carb counting, the inconvenient pump site changing, the stress, the ups and the downs...
Its all just behind the scenes in his life....
Saturday, April 13, 2013
Day 190...lets begin.
The beginning......
I sat in the waiting room as my son went in to see the doctor. You see, he was 12 years old and well, he didnt want "mom" in the room anymore. I waited for him to come back out, thinking he would be carrying a prescription for an antibiotic.
Instead, the doctor came out and asked me to come back.
I walked into the room and looked at Craig. I sat down and heard words I never expected.
"Your son has Type 1 diabetes"
I looked over at Craig in confusion..
He was young, healthy, and very active.."How can he have diabetes?" I thought.
The doctor started to explain that he had Type 1 diabetes, an autoimmune disease, that he would need insulin and that it will not ever go away.
Tears started flowing.
The unknown, the worry, and my sweet boy.
We were told "to get some labs done and check web MD for more information on the disease..when we got the labs back, we would go from there"
The next several hours I googled all I could about the disease.
I reached out to friends in the medical field for answers to my many questions.
Within 24 hours, my son and I were at Phoenix Childrens Hospital.
For the next 4 days we learned all we could about this new life he would have.
Those 4 days I didnt leave the hospital.. I watched him learn, and I learned as well.
I was asked my a nurse to give my son a shot.
First off, I hate shots, needles and anything to do with them...so this was a stretch for me.
I got up, walked over and was handed the needle. I pinched the skin on his arm where I was to inject his insulin...I looked at his arm, then back at his face, arm, face, arm, face..
"I cant do it, Im so sorry, I just cant"
I felt like a failure..How was I supposed to do this? He NEEDS this and I cant give it to him...
The next day, I tried again in his leg. Somehow I mustered up all of the courage I had and I did it.
I couldnt do it in his arm, it was just too close to his face, but I could handle the leg..barely!
After that, Craig was off to the teen room to play a few video games.
I sat in his hospital room alone. And then it happened..
All of those emotions, tears, and feelings I had held in to be supportive of my boy, well, they all came out. I was sobbing uncontrollably.
It was just so much to take in and all as such a surprise.
I had worries and fears..but as we learned, we were going to have to be strong because this was our new life...
Life with Type 1 diabetes.
I sat in the waiting room as my son went in to see the doctor. You see, he was 12 years old and well, he didnt want "mom" in the room anymore. I waited for him to come back out, thinking he would be carrying a prescription for an antibiotic.
Instead, the doctor came out and asked me to come back.
I walked into the room and looked at Craig. I sat down and heard words I never expected.
"Your son has Type 1 diabetes"
I looked over at Craig in confusion..
He was young, healthy, and very active.."How can he have diabetes?" I thought.
The doctor started to explain that he had Type 1 diabetes, an autoimmune disease, that he would need insulin and that it will not ever go away.
Tears started flowing.
The unknown, the worry, and my sweet boy.
We were told "to get some labs done and check web MD for more information on the disease..when we got the labs back, we would go from there"
The next several hours I googled all I could about the disease.
I reached out to friends in the medical field for answers to my many questions.
Within 24 hours, my son and I were at Phoenix Childrens Hospital.
For the next 4 days we learned all we could about this new life he would have.
Those 4 days I didnt leave the hospital.. I watched him learn, and I learned as well.
I was asked my a nurse to give my son a shot.
First off, I hate shots, needles and anything to do with them...so this was a stretch for me.
I got up, walked over and was handed the needle. I pinched the skin on his arm where I was to inject his insulin...I looked at his arm, then back at his face, arm, face, arm, face..
"I cant do it, Im so sorry, I just cant"
I felt like a failure..How was I supposed to do this? He NEEDS this and I cant give it to him...
The next day, I tried again in his leg. Somehow I mustered up all of the courage I had and I did it.
I couldnt do it in his arm, it was just too close to his face, but I could handle the leg..barely!
After that, Craig was off to the teen room to play a few video games.
I sat in his hospital room alone. And then it happened..
All of those emotions, tears, and feelings I had held in to be supportive of my boy, well, they all came out. I was sobbing uncontrollably.
It was just so much to take in and all as such a surprise.
I had worries and fears..but as we learned, we were going to have to be strong because this was our new life...
Life with Type 1 diabetes.
Wednesday, April 10, 2013
Day 189
Today...this is what diabetes looked like..
Craig was low (68) and had to sit out while his team warmed up for their game...
Sunday, April 7, 2013
Day 188
We had a rough night last night..
I got up for the midnight check and Craig was 314 so I gave him a unit of insulin.. When I got up at 3 am to check again (we have to check twice a night for a while until we get all of his pump settings right for his body), anyway, when I got up again at 3am, he was 414. So I had to wake him up and have him check for Ketones. He had some..
That told me that something was wrong with his pump..he was not getting insulin.
We had to change his pump site and found that the cannula was kinked.
Well, no wonder he wasnt getting insulin.. So we redid the infusion set and gave him insulin and he went back to bed.
Oh my goodness I woke up SO tired today!
Ill be happy when we do not have to get up twice a night to check his blood... but by that time Madi will have her pump and we'll be doing the same thing for her!
Its rough..but Craig loves the pump..so its worth it:)
The hardest thing is to get up in the morning and to all of the daily duties when you are so tired.. Im exhausted all the time.. I had to cut back my photography business bit because I was just too tired and overwhelmed!
I got up for the midnight check and Craig was 314 so I gave him a unit of insulin.. When I got up at 3 am to check again (we have to check twice a night for a while until we get all of his pump settings right for his body), anyway, when I got up again at 3am, he was 414. So I had to wake him up and have him check for Ketones. He had some..
That told me that something was wrong with his pump..he was not getting insulin.
We had to change his pump site and found that the cannula was kinked.
Well, no wonder he wasnt getting insulin.. So we redid the infusion set and gave him insulin and he went back to bed.
Oh my goodness I woke up SO tired today!
Ill be happy when we do not have to get up twice a night to check his blood... but by that time Madi will have her pump and we'll be doing the same thing for her!
Its rough..but Craig loves the pump..so its worth it:)
The hardest thing is to get up in the morning and to all of the daily duties when you are so tired.. Im exhausted all the time.. I had to cut back my photography business bit because I was just too tired and overwhelmed!
Friday, April 5, 2013
Day 187
Well, the past year we have had a lot of phone calls about opportunities for Craig to speak, or volunteer, and most recently, the hospital they went to when diagnosed called and asked us to do a news story.
The News station came to our house and interviewed us. If you would like to see, go check it out!!
http://www.abc15.com/dpp/news/region_west_valley/surprise/phoenix-childrens-hospital-eases-stay-for-family-with-double-difficulties
The News station came to our house and interviewed us. If you would like to see, go check it out!!
http://www.abc15.com/dpp/news/region_west_valley/surprise/phoenix-childrens-hospital-eases-stay-for-family-with-double-difficulties
Wednesday, April 3, 2013
Day 186
got the call..Madis pump should be in the mail next week!!!
that means we will have 2 pumpers! crazy! She is almost at her 1 year since dx too! I have to do something, but Im just not sure what yet.. ideas?
that means we will have 2 pumpers! crazy! She is almost at her 1 year since dx too! I have to do something, but Im just not sure what yet.. ideas?
Monday, April 1, 2013
Day 185
As soon as Madi became excited about a pump, we went out and got some fabric..
Now Im getting excited about what Im making! I decided to make some for older kids, who dont want to wear a cutsie kidish pump pouch.
Craig typically puts his in his pocket, but its getting all scuffed up..
So I came up with this.. a pouch that you slide onto your own belt.. Kind of fun:)
I made this for fun, He wants a plain black one.. The nice thing about these is that they can be cute..or you can just hang your shirt over them. They are not bulky.. and you dont have to wear an "extra" belt to wear them.. They just fit onto your own belt.. A fun ,cool belt, church belt, school uniform belt, any belt:)
http://www.etsy.com/shop/MadiolaDesigns
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