6 months

6 months ago today, we were in Children's ICU. I wasn't sure anything in life would ever be ok again. 6 months later, I'm still not 100% sure, but it's getting better. Here's what I've learned in the past 6 months:

1. Doctors make mistakes. I knew this already,  but now I know it on a very personal level.  We went from a diagnosis of mono to the ICU in DKA in less than 48 hours.  No hard feelings, doctors are human and they make mistakes just like the rest of us. But there has GOT to be a push for doctors to do a simple blood or urine test for kids that come in with those symptoms....tired, dehydrated, weight loss, thirsty. A simple test would have started my child on insulin 2 days earlier.

2. I CAN do this. God gives me strength to fight this battle every day.

3. My child is amazing.  Another thing I already knew, but now I know it on a whole new level. He calculates carbs and insulin at every meal and snack,  pokes his fingers to test his blood 4 or more times a day, injects insulin at least 4 times a day, and pays attention to his body every second in case he starts feeling low. He carries a bag of supplies everywhere he goes. He is my hero.

At least 4 finger sticks per day.

4. There are some really amazing people in this world. In the last 6 months I have been introduced to the DOC (diabetes online community).  Facebook, Twitter,  forums,  blogs, etc. These people ROCK! They have helped me learn so much. I had no clue that I could meet people online and feel so CONNECTED! They are my daily support in all things diabetes. 

5. Carb counting. A can of Rotel has 10 grams of carbs. An average sandwich has 25.  Tortilla chips are about 2 grams of carbs each. That's just the beginning of all the numbers I have floating around in my head, and I know more are to come.

6. New vocabulary.  Basal, bolus, insulin-carb ratio, glucagon, DKA to name a few.  Plus some others that have taken on new meaning - high, low, low treatment, d bag (gotta keep that sense of humor!), shots, pokes, giving the finger, shooting up. On and on that list goes.

7. My son can still enjoy all the activities he has always enjoyed. He needs to test his blood sugar more often during some activities, but no activities are off limits!

Lead snare for marching band

8. No foods are off limits either, much to the shock of many people. Obviously, he can't eat sugar all day every day. No one should do that. A healthy diet with occasional treats is the plan he follows.

9. Candy isn't bad. Sometimes it's a lifesaver. Literally. Skittles are his favorite low treatment.

10.  Stomach viruses can cause carb absorption problems.  Very little insulin was needed for DAYS after the virus was over.

11. There is no "right" amount of insulin. The body needs what it needs.  The dosage amounts are different for every person, and can even be different for the same person on different days.  There is no rhyme or reason to it.

12. The expected life span of a type 1 diabetic is equal (or near equal) their non-diabetic peers. Complications can be prevented or at least delayed by keeping blood sugar in range as much as possible.

13. There is no such thing as stability or control. We can simply learn how to manage it.

14. Other illnesses are no more likely than they were before, but the effects of those illnesses can be greatly magnified. Some illnesses that can normally be treated at home can put a type 1 in the hospital.

15. There is much left to learn so that we can KDA every day.  Until a cure is found, the ultimate way to KDA!  

Fear

Fear is one of those things type 1 parents don't talk about much. Especially not outside the type 1 circle. But, I said I was going to try to give insight into our life. So here goes.

We do not let fear run our lives, but it is always there. Every minute of every day, lurking in the background.  Is high blood sugar causing permanent damage? Will he go low when he is alone, or asleep, or out with friends and not come back up? How will it affect his relationships? College? Jobs? The list goes on and on.

This morning,  for example,  fear overtook me for a few moments. If you know me well, you know I am not at all a morning person. The snooze button is my friend, or enemy, depending on your point of view. Every morning, my alarm goes off about the same time as Seth's.  When he hits snooze, I relax a little and doze for 9 more minutes. Or more. Well, this morning, he didn't hit snooze. I bolted out of bed. I don't remember my feet hitting the floor until I was in his room. He didn't want to wake up! As I was deciding what to do next, Jason showed up wondering why I was running across the house before 7 am. He hadn't left for work yet. He got Seth's meter, and by then Seth was sort of awake. Tested blood sugar. 149. What a beautiful number! He was just sleeping because he was tired and didn't actually have to get up. You know, being a normal teenager. He just forgot to turn his alarm off for this morning.  But because of D, nothing will ever be normal again.

My heart finally returned to normal rhythm. All is well in the world again. For now. It never truly goes away, it just fades to the background for short periods of time. Then it rears its ugly head when you least expect it. 

KDA isn't just a motto,  it's our life. Every day is a fight, and we fight with all we have  in us every day. Until a cure is found, we continue to KDA.

Food

Food is a somewhat controversial topic in the type 1 community. Some people greatly restrict carb intake, others don't. We are in the 'don't' camp. We just make sure we are eating healthy meals with lots of veggies (those have carbs too, by the way) and count every carb! The insulin must match the carbs. Even then, it's no guarantee they will stay in range. Diabetes really has no rhyme or reason, nor does it play by any rules. The same exact meal can produce different results on different days. Jason and Seth tend to react similar to the same foods, but not always. It hurts my logical brain some days. Ok, most days.

Here's an example of a meal. Keep in mind Jason is 6'9" and Seth is a 6'6"ish growing teenager, so it's more food than most people eat.

When there is a special occasion or event, Seth eats cake, ice cream etc. Just like every other kid. His pancreas doesn't work, and it's not his fault.He just has to inject the insulin that other kids secrete naturally. Jason watches sweets more carefully, as all adults really should, but he isn't super restrictive either. It's such a change for him from the days he thought he was type 2! More difficult in most ways, easier in a few.

There are some food that are more off-limits. Regular soda and juice, especially at a restaurant, are almost impossible to calculate so they drink diet soda. We also keep sugar free jello cups on hand all the time. Otherwise, regular food. We just have to count Every. Single. Carb. I'll write more later about the calculating process and also how we order in restaurants.

Something that will blow your mind...a banana has about the same number of carbs as a cupcake. From an insulin standpoint, they are equal. Obviously they aren't from a health standpoint, but still. It's crazy that they need to inject the same amount of insulin for healthy fruit as a cupcake. But that's the way it is.

Ok, I think that's all I have for today. More next time! Until then, we will keep doing our best to KDA.

Hard to put into words.

Words have not come easy lately. It has been about 3 weeks since I blogged. I can't decide if I have no words or too many. Probably too many, clogging up my brain so I can't arrange them in a coherent way. I mean, 2 diagnoses in less than 4 months is kinda overwhelming by anyone's standards. Anyway, my awesome friend Jen encouraged me to continue spreading awareness, saying she has learned more real, practical information from me than she did in pharmacy school. So I will try to organize the jumble of words and emotions in my head in order to continue helping people understand this horrible, invisible disease just a little bit better.  More awareness means a better chance we will KDA.

Good friends

They say good friends are hard to find, but I have been blessed with so many! My kids have been blessed with good friends as well. Seth has a few friends that are really special to me.

Seth has lived across the street from us for almost 6 years, but the boys have known each other almost 10. They not only have the same first name, but identical initials. Their birthdays are 4 days apart. To avoid confusion, we call him Steve (funny story for another day). Why is he such a great friend? Steve's dad is t1, so he knows. He just knows. But he never treats Seth differently nor is he afraid to be around him. He is the same friend he was before diagnosis. T1 parents know that is huge.

Brian is a friend from church, and he also plays in a band with Seth.  He also has never treated Seth differently because of diabetes. He willingly learned what signs he needed to watch for, as well as how to use Glucagon. His mom is a nurse, so she quizzed him to make sure he had it down.

Jordan is also a friend from church, and in the same band. He was the first friend to come visit Seth after he got home from the hospital. That will always stay with me. Jordan's dad was his first visitor in the hospital. They are just a really special family. Jordan's mom told me the other day that the band plays a game they call Pass the Seth. They hook together 4 of those little rolly carts from elementary PE, and Seth lays down on them. The boys take turns grabbing him by the feet and flinging him across the gym to another person. Maybe a little dangerous, but so fun! A normal teen thing.

The drumline at school, the DI team, church friends, there are many friends surrounding my kiddo.  We are truly blessed. With the support of so many wonderful friends, he will KDA.

Seth, Steve,  and Josh playing video games. 

The Quest for Insulin

Jason's insulin dose has been undergoing massive changes recently. His doctor started him out conservatively, but they have made several increases the last few weeks. Because of that, he realized on Thursday night that he would run out of insulin over the weekend. So, he called the pharmacy Friday morning. The insurance company wouldn't pay for the refill until Monday.  No problem, the doctor authorized an increase in the dose. Problem solved, right?

Wrong! The insulin the pharmacy had was expired, but being the awesome pharmacist she is, she transferred the prescription to the Wal-Mart pharmacy nearest Jason's work. Problem solved.


Wrong again! When he got there after work, they were out of it! So they called several other stores in the area and located the precious insulin he needs to live. I got home from work and off we went to a neighboring town. We stood in line, and when it was his turn they had no record of him in the computer. I was beginning to get a little anxious. Then the pharmacist had a thought....did they perhaps call the Neighborhood Market? He looked it up, and sure enough that's where it was. And we actually had time to get there before they closed. We made it, bought the insulin,  then had a lovely dinner together. Whew! It's hard work to KDA!

Diabetes, drumming, and dozing

Friends often ask how I can stand to listen to Seth drumming every day.  You see,  he is in not one,  but 2, local bands in addition to high school band and jazz band. He loves to drum and he is very good. But it is loud. Some days I have to ask him to stop before he is finished, but generally I just let him practice as much as he wants. Why? It's great exercise and helps keep his blood sugar in a good range.  But even more..... he doesn't think about diabetes when he is drumming.  So I let him drum.

I have also discovered that I can nap while he drums.  Sounds weird,  but I think I figured it out. When I was pregnant with Seth,  Josh was 2. I was exhausted all the time,  so when I needed a nap I would give him a toy that made noise. If the noise stopped, I woke up. Not a fantastic parenting technique, but one that arose out of necessity. Now I am finding myself doing the same thing 16 years later. I can sleep while he drums. The noise means he is ok. When it stops, I wake up.