Mom gives voice to diabetic kids through unique photos

November..

As we know diabetes is a daily thing. Each day is different and there is never a "normal" day.  Having 2 diabetics, here is how my evenings so..  But here is a "normal" night in our house. I thought about it tonight so I took pictures and I'd share... I am usually up late editing or doing homework, when I go to bed I'll check the kids. I went in to check Madis glucose and she was 60.. So I had to go get her a juice, wake her up, get her to drink it, then wait 15 minutes to recheck... After that I rechecked her (which took some wrestling a half awake child) her blood sugar had only gone up 4 points! That means she must have been dropping quick! So I gave her another juice... While I waited, I went in to check Craig: 201. Great! Ok he's good for the night, now back to Madi.. Recheck again (that means another finger poke, 3rd one in the past 30 minutes). Now it's 79.. So now she needs a carb protien to keep her levels good until morning. Gogurt does the trick, she sucks it down half awake with her eyes closed. Finally she can go back to sleep.. And so can I. So if you see Craig or Madi and they look pretty tired, now you know why:) this is real life, life with type 1 diabetes.

 a quick before I go to bed check and she was low so I ran to grab her a juice.  She drinks it with her eyes closed, half awake and drinks it quick..

 

 she rests while I wait 15 minutes to re check if her blood sugar came up to a safe number.

 15 minutes later and she only went up 4 points! That means she must have been dropping fast! Im so glad I did a check before I went to bed.  Well, since the juice wasnt doing the trick, she had another juice and I waited another 15 minutes. 

 

While I waited, I went in to check Craig. Yay! A great sleeping number, ok he's good, now back to Madi...

 Finally an ok number..now she needs a carb protein snack to get her safely to morning. Gogurt does the trick.

 

She eats is like its a reflex, eyes closed and can finally go back to sleep..

  

The after math..Ill clean it in the morning, Im tired! I finally went to bed around 1 am 

Madi woke up this morning at a blood glucose of 74!

no more pump..

modern technology is a great thing... but right now, we need a break.

Madi has so many sores on her small body from pump sites and she has apparently developed an allergic reaction to the Dexcom sites. She gets a terrible rash underneath. When we take the site off, she has what looks like a bad burn. We tried a new site and after just 2 days we took it off and will not use any more until she heals completely.
Another reason we are taking a break from teh pump is becaue of to many highs... The not knowing if she is gettign insulin, if there is a kink or if she is just high for some other reason.
At least with the injections, we know she got the insulin. Theres no question if the cannula is kinked or the site is bad.
We have already seen an improvement in her numbers!
Shots are no fun and with injections she has to get 8-9 shots a day.
Also with no Dexcom, Im getting up at 2 am to check both kids to make sure their numbers are good. Especially since they are both so active and we are on the Lantus, we need to see how their body reacts in the evening for a bit. 

I a sure after a while she will be ready to go back on the pump, but for now we are going back to the beginning...

why did I even get diabetes?

tonights events went like this:
Madis blood sugar was 450... she broke down and cried..shes been fighting highs all day.. after a site change she ended up with the 450.
"Please mom, pray for a cure because I never wanted diabetes..why did Heavenly Father even give it to me? I dont want it!"
Tears flowing and sad eyes looking.. what is a mom to say?
Days like today are super hard.. and break my heart. All I could tell her is that she is very brave and strong and that Heavenly Father will help her with this trial. When we talk about T1, advocate for it, fund research and educate people about T1 diabetes, this is why... this face right here

sports.....and diabetes

High School Conditioning = very late nights for this mom!
 but the most important thing we decided early on is that we would not let Type 1 stop our kids from living the life they want to live!
They can do anything anyone else can!

So Craig started Baseball this week which included several days of physical conditioning.  Although he drank Gatorade throughout the practice and did not wear his pump the whole time, he still dropped around 11 pm each night. 

Here are some tips we try to use to keep this from happening..
He drinks Gatorade throughout to give him extra carbs. He also drinks water to keep hydrated and keep from highs due to the 110 degree weather!
He should be eating protein throughout the practice as well.  That would help with the after practice blood sugar crash that we experienced this week.
Although I tell him this, he is a teenager and well, who has time to eat when the whole team is conditioning?
I get it, he doesnt want to be sitting out or eating when everyone else is running or doing whatever, but when you have diabetes, sometimes you have to!

BUT, when he doesnt do these things, it causes me to get up several times in the night to fix his lows and make sure he doesnt crash too low! So after chocolate milk because he was 79..an hour later he was 89... so then he had a sandwich.  I checked him again 2 hours later and he was in the high 100s so he was good till morning.  It sure makes for a long night (especially because Madi was fighting highs of over 500!)

SO here are some tips to help your athlete get through practice and regulate those later nigh crashes:

• During the practice, consume extra carbs like gatorade, protein drinks ect.
• Eat things like jerky, trail mix, protein bars,  granola or favorite snacks to help sustain those good numbers rather than crashing right after practice.
• Craig doesnt wear his pump during sports because he has lows..some people experience highs so they keep it on..thats up to you and how your body works.
• After practice, make sure you have a good amount of protein and carbs so that when your body wants to crash, you have those carbs backing you up!
• If you wear a pump allow a temp basal.  Craig often uses a negative 20 or 30% basal. That means he is getting about 30% less basal for about 4 hours. It helps to reduce those lows.
• and very importantly, make sure coaches know your childs needs and that they need to eat and drink during practice! 

Good luck! Its a crazy disease that takes a lot of different aspects of detail especially with active kiddos!

JDRF

This year we decided to tie Dye our JDRF shirts and it was a lot of fun and turned out so cool!! What a fun summer activity!!

Personal Essay

Well Im in college and right now Im taking my last English Class. I had to write a personal essay about a personal experience that changed my life in some way.  This is the first time I have written about Type 1 in any of my classes.  I wanted to take the opportunity to write at least one paper on this crazy disease.. So I figured I would share it here on our blog.. enjoy!

Find The Blessings Through The Trials

    As I sat outside the room looking at her through the glass windows, my heart broke for her future.  She was sitting in the hospital playroom smiling and talking with her dad, her mind was distracted from the new life she would have; a life of shots, pain, worry and the constant obstacles that come with this new diagnosis.  All I could think was, “Why? Why my little girl? How will we do this? She is so young.”  The tears would not stop falling from my eyes.  I had a small idea of what she would go through.  We had received the same devastating news just a few months ago for our oldest son.

Just 3 months earlier, my son was not feeling well.  He was constantly tired and very thirsty.  I knew something was wrong.  After what I thought would be a quick doctor’s appointment, we found out he had type 1 diabetes.  I was in complete shock.  He was healthy, played baseball daily and was thin and very active.  How could he have diabetes? How is this even possible?  What I soon came to learn is that type 1 diabetes is an autoimmune disease.  Anyone at any age could get it and there is nothing you can do to avoid getting it.  I remember while in the hospital with my son I was completely heartbroken for him.  As I struggled to understand and learn more about the disease, I asked the doctor, “What are the chances any of our other children will get this?” My heart became at ease when I heard, “There’s only a 3% chance of his siblings getting type 1 diabetes.” 

     For the next few months we learned how to deal with this new diagnosis for my son.  We soon found out that it was a tedious, constant, unrelenting disease that would never go away.  I watched him suffer through more than 6 shots, 8 finger pricks, emotional ups and downs, pain, sadness, and hardship every single day.  There wasn’t a day that he could take a break from the disease.  As a mother it was painful to watch him struggle and know there was nothing I could do to take this disease away; nothing I could do to alleviate the pain he was going through.  I would find myself in tears late into the night, worrying about a diabetic seizure, or other complications with the disease.  After a few months, I finally felt like, “Okay, we can do this, it’s going to be really hard, but we can help him have a fulfilling life despite this disease.”  I felt like I had come to terms with the diagnosis; then another blow to my heart-my 4 year old daughter was diagnosed with type 1 diabetes. 

 

  

     This new diagnosis was devastating.  I watched her cry and had to hold her down for the doctors to give her shots, knowing that she needed to get the insulin to live.  She would look into my eyes with an expression of fear and sadness.  I had to tell her, “It’s ok, it won’t hurt too much.” I felt like I was lying to her.  She would have to go through this pain every single day just to stay alive.  The next 2 days were filled with diabetes education, shots, finger pricks, and trying as hard as I could to help her understand that all of this pain was necessary; something that is really hard for a 4 year old to understand.  After the second day, I decided we needed a break and we would go to the hospital’s playroom.  My husband had just shown up and we walked down the long hospital halls and down the elevator towards the playroom.  When we got there I said, “I’m going to sit out here for a few minutes.”  My husband and daughter continued to the playroom. 

     There I was, looking at her sweet little face, an innocent, carefree young girl but that carefree life was going to be filled with difficulty and pain that no child should have to endure. I sat there caught in pity for her life, sadness for her pain, and worry for her future.  After about an hour we decided to head back to her hospital room.  We walked into the elevator.  After going up one floor another child entered the elevator.  This sweet little girl was in a wheelchair and had an IV in her arm.  A nurse was accompanying her to a different floor.  I looked over at my daughter and she was hopping around, smiling and then did a ballerina twirl. She looked so carefree and happy to be active and unplugged from her IV.  Right then it hit me, “She is going to be just fine.  We can do this!  She will go through the daily struggles, but she will still be able to run, play and live her life!”  At that moment I knew that I had to stop feeling sorry for her and help strengthen her. 

     In the following weeks I helped her become independent in checking her blood glucose.  She was so excited to be able to finally do it by herself.  She felt accomplished, brave and strong.  We decided to do something for the children still in the hospital. We gathered gift bags filled with toys, books, and crayons to deliver to the hospital for the children who were still there.  My daughter and I delivered over 50 gift bags to the children’s hospital for those children who were not able to leave.  I thought back to just a few weeks before when I was caught in my own sadness.  It had distracted me from the reality that I was truly blessed in many ways.   I was reminded of that little girl in the wheelchair in the hospital elevator.  Although that little girl didn’t know it, she had helped me.  That moment in the elevator helped me out of my pity slump, find gratitude for the blessings in my life and seek out ways to serve others.  Sometimes in life things can seem unbearable until you realize the blessing sitting right in front of you.