Hello there!

Ummm, yeah. I have all but abandoned this blog but I'm here with a refreshed commitment to document and share our anything but boring lives with Type 1!

We survived another summer with Type 1 including a two week trip to California to visit my parents. Air travel is always a little tricky because of the TSA security regulations. On the way out to Cali, I did my normal routine of pointing out that Ty was wearing an insulin pump and again they were boggled and pulled him aside for the embarrassing secondary security check.  On the way home I tried an experiment and did not say a word about his pump and guess what? He walked right thru security with no issues at all like the rest of us.  From now on I am adopting the "don't ask, don't tell" policy. Until the TSA agents are trained with some basic Insulin Pump knowledge and sensitivity, I will not voluntarily point it out to them. We have had agents who were rude and ignorant, and looked at me as if I said that my kid had an explosive device attached to his hip rather than a device that provides life saving insulin. If they notice and question it I will be more than happy to explain.

Other than that it was smooth sailing. I even remembered to change his pump right away to California time, having the time just two hours off can create crazy highs or lows since he has several different basal rates over the course of 24 hours.

Now that summer is over, it is on to our next adventure- Junior High! Check back for a post on how we are navigating a new school, new schedule and adolescence...

Disneyland With Diabetes



Goofy Kid!



We are just home from a wonderful spring break trip to California. We spent some time with family then four days at the Happiest Place on Earth- Disneyland! We are Disneyland veterans, this was our fifth trip as a family of four, and I have lost count of how many total times I have been there. I love it- it truly is my happy place.

Getting there is the hardest part of the trip- we carry on all of our diabetes supplies on the plane. My biggest fear is that we have the supplies in our checked luggage and the luggage gets lost! I pack enough site changes to change the site every day when we are gone, plus a couple extra. I have NEVER needed that many, but better safe than sorry! We have good luck with airport security, I just tell them when we get to the front of the line that our bag has diabeticc supplies and that Tyler is wearing an insulin pump, and usually they wave us through. Once in San Francisco they pulled Tyler aside and wiped his pump down with a special wipe then tested it for bomb residue. I was irritated, but Tyler thought it was pretty cool!



Testing on the plane



A trip to Disney can be tricky with a Type 1 kid, but we have learned enough along the way that it has become a piece of cake for us. Our #1 rule- Tyler wears a hip pack with Juice, Glucose Tabs, a tester and a card with our contact info in it at all times. If for any reason he is lost or separated from us, he will at least have his low supplies until we are reunited. We tend to pack lightly for a day at the park- I keep glucose tabs and insulin and syringes with me just in case- we figure that if a pump site goes bad, we can always run back to the hotel and change it there. The few times I brought site changes and overloaded on low supplies, I learned that it was overkill- I was carrying around tons of stuff we did not end up needing. I am comfortable with the basics now, since we stay at a hotel 10 minutes away from the park.

Testing in line

We have found that even with all the extra junk food we are eating ( churros, candy, ice cream, popcorn ) his blood sugars tend to be on the lower side because of all the activity, so we tend to test BGs often, and err on the low side when trying to calculate the carbs of all the junk. It is better to correct a bit later than have a huge low crash in the middle of a crowded and hot amusement park. For meals, we use our iphones and http://www.calorieking.com/ to find carb counts of almost anything we eat while at the park. 

Just like everything else, things are a little trickier with Type 1 along for the trip but the important thing to know is that like everything else, it can be done and does not have to put a damper on the fun things in life. Be prepared and roll with it!

Stuff

Sometimes I feel overwhelmed with the sheer amount of STUFF that we have and require to treat Tylers Type 1. Insulin, Test Strips, meters, syringes, cartriges, infusion sets, low supplies, and on and on and on. For the most part we put it all in bins and have a spot in the closet where it is kept. I am usually on top of it but don't really have a great system to keep track of when we have on hand and what we need to reorder.

We spend a fair amount of money on Type 1 stuff, co-pays, prescriptions and out of pocket expenses.  While at the pharmacy last week picking up test strips I noticed that a box of 100 strips cost about $100.00 over the counter. WHAT? That is $1.00 per test- we test on average 8 times per day. And that's just test strips, not insulin, and all the accessories that needed to administer that insulin. Holy Moly. Thank goodness that we have insurance for all this stuff- that I would prefer not to have in the first place. I can't imagine how people get by that can't afford their stuff- diabetes is not cheap even with insurance coverage. Another reason we need a cure for Type 1!

He's getting it!

Tonight Tyler was making his lunch for school tomorrow. He had opened a new bag of cookies and destroyed the packaging in the process. All by himself he put the cookies into a large ziplock bag and wrote the carbs on the bag! He even did the math and wrote the # of carbs per cookie instead of what the bag said- serving size 3 cookies total carbs per serving 21.

I was so surprised when I saw what he had done. I have been talking to him about carb counting and encouraging him to count his own carbs for meals now that he has the math skills to do it. It's nice to see that the habits that I have are starting to rub off on him. It's a proud Mom moment, my boy is growing up!

Real Life Memories

I just came across this picture from last years vacation to Disneyland. I love this shot of Tyler , it captures his sweetness perfectly. I also like that you can see his pump and hip pack of diabetes supplies, it's such a real example of what his life entails. When we go somewhere like Disneyland, I make sure that Tyler has his own supplies on his body at all times. I carry stuff in my bag, but what if he got separated from us? It is a scary thought but it happens, and he needs to be in the habit of having what he needs with him just in case. He is getting to the age that he won't always have Mom or Dad with him. The more independant he is, the safer he is. I found that a hip pack with juices, glucose tabs and our contact information inside works great, and provides much needed peace of mind.

 My dream is that when he's an adult he will look at this picture and say "When I was a kid I had to wear an insulin pump and carry juice boxes everywhere I went, because I HAD Type 1 diabetes." Wouldn't that be amazing? Hope is a powerful thing. We'll never give up hoping for a cure.

Featured D- Mom!

Today I am the Featured D-Mom over on the D-Mom blog! Leighann has a great blog about parenting Type 1 kids where she features other Moms with Type 1 kiddos. I am very happy to be her latest featured D-mom -go check it out HERE!

Some days.

Some are just more frustrating than others. Most of the times we sail right through our days poking fingers, pumping insulin and counting carbs. No biggie, its what we do. Other days it all gets to be too much.  Days when you've been up all night checking BG's every two hours because somethings off and god forbid you go to bed and the unthinkable happens. Days when you decide to be proactive and want a little advice from your endocrinologist but they can't help you because the computers down. Days when you fight with the insurance company to get the best care possible for your child and get shot down.  Days when your kid complains about having to do a BG check or a site change, and it strikes you that this is it- until there's a cure for this awful disease, this is my kids life. Always and forever.

Tomorrow I will get up and do it all the best I can, I may even joke about it and have a positive attitude. I know there are worse things, that there are kids who won't get off so easily, who have diseases that they can't manage and parents that won't get to see their kids grow up. That is so much worse and gives me perspective on how lucky we are. We are able to manage diabetes ( though most of the time it seems like it manages us. ) We have good insurance and have access to great doctors and the best treatments. That is all wonderful but some days you want to stomp your feet and scream "IT'S NOT FAIR! " the way you did when you were 6. People compliment me all the time on my positive attitude and openness when it comes to Tyler's Type 1, because most of the time I am positive and open. But today is one of those days, and every once in a while you just gotta let it out.

Strike Out Diabetes!

The boys and I attended a bowling fundraiser yesterday with put on by a local support group I just found. The JDSci (Juvenile Diabetes Support of Central Illinois) is a group that was started by the mom of a little guy with Type 1. It is great to get to know of more local families and kids with type 1, sometimes it is nice to be around others who just "get it". The event raised over $3500.00 for faustman lab, they are making great strides with clinical trails and research for a cure of Type 1 Diabetes.

What NOT to say to the parent of a Type 1 diabetic

I first saw this video on Facebook, and I knew when I started this blog I would post about it. It is really funny while getting the point across. People say some really insensitive things to parents of type 1 kids, and the logical side of me knows that they mean well but the Mom in me wants to let them have it! Whenever it gets to me I watch this video, and can't help but crack up, and then I feel better.

"You can't eat that, you have diabetes!"

It's time to address one of the most common myths about Type 1 Diabetes. People who don't know about the disease think that diabetics can't or shouldn't eat sugar. The truth is THEY CAN. They can eat anything anyone else eats. Diabetics control their blood sugars by counting carbohydrates and giving a bolus (or injection if on shots) dose of insulin based on the amount of carbohydrates they consume. A carb is a carb- any food with carbohydrates must be counted whether it's a slice of chocolate cake or a whole wheat tortilla. One of the first things we learned when Tyler was diagnosed was how to count carbs.

There is a difference between fast acting carbs and slow acting carbs and they do have different effects on blood sugars. When possible we do limit the fast acting carbs that are found in candy, juice, and regular soda. When Tyler does have an occasional soda, it is diet (0 carbs) and typically he only has juice to treat a low blood sugar. Other than that, he eats anything anyone else does. I can not imagine taking Tyler to a birthday party and telling him he can't have a piece of cake because he is diabetic! He can have that cake, but before he'll check his blood sugar and give insulin for it.

Limiting sweets can help keep blood sugars under control, but as long as we adjust his insulin he can eat them just like people without diabetes. I treat Tyler the same as my non-diabetic kid, we stick to a healthy meal plan and occasionally have a treat. I personally feel that it would be more damaging for Tyler in the long run to forbid candy and sweets. By forbidding the sweets, they would become more desirable and lead to him wanting them more than ever. This is not saying that the "Candy Holidays" are not completely frustrating. Valentines Day is one of the worst! Classroom parties in the school district we live in consist of two baked treats (usually a frosted cupcake and/or cookie) a juice box, and a goodie bag filled with candy. For Valentines Day add Valentine cards that include candy and it becomes a sticky situation. That's a lot of fast acting carbs to figure out. I tend to let the kids "junk out" on this stuff the first day or two after a holiday then end up throwing a lot of it away. Most of the time they never even notice.

One issue we have run into with Tyler is his "sneaking" food- usually candy or fruit snacks, resulting in high blood sugars. I have found candy wrappers hidden in the couch cushions, stuffed down the side of his bed between the mattress and the wall and even in vases on our fireplace mantle. We have taught him and continue to teach him that he has to have insulin for every carb he eats and are hoping that as he gets older and more independent he will make good choices and will administer insulin each time he eats carbs. We have told him that he can eat candy and snacks but needs to ask first, but of course just like with my non-type 1 kid I am not going to say yes EVERY time they ask for candy, there is a time and place for everything. The difference is that when my non-type 1 kid sneaks candy, it does not jack up his blood sugar, and he is smart enough to throw the wrappers in the trash where I would never notice them! ☺

Oh, and News Flash- Diabetic and “dietetic” foods generally offer no special benefit. Most of them still raise blood glucose levels, are usually more expensive, and can also have a laxative effect if they contain sugar alcohols. We tend to avoid anything with artificial ingredients and sweeteners believing that real sugar and fat in moderation is better for us in the long run.

Slumber Party FAIL

I promised a new post to update on our slumber party experience, I wish it were a happy ending but with Type 1 diabetes, it rarely is.

As planned, Tyler checked in several times over the course of the evening.

At 8pm he called with a blood sugar of 181 ready for cake and Ice Cream. Not a bad number- a little high but that's what I wanted while he was at the party. He gave insulin for the cake and Ice Cream and I told him to call back in 2 hours.

At 10 pm he called to check in with a blood sugar of 258. A little higher, but we left it alone. Better high than low at a slumber party. All is good, have fun and call again at midnight or bedtime, whichever is first.

Midnight- here's where it all went bad. He called and said they were going to bed, I had him check his blood sugar, and it was 56. 56!! I knew then that he was not going to stay the night but told him to drink a juice and eat a granola bar and to call me back in 15 minutes. I hung up the phone and got pissed off. There was no way I could leave him there at 56 at bedtime after all the running around he had been doing all night. I could not expect the Mom hosting to stay up all night checking his blood sugars every few hours, and I knew I would be up all night here worrying. The only thing to do was to bring him home. When he called back I told him I was coming to get him and he was so good about it- he said OK but I could hear it in his voice, he was crushed.

I walked over to get him, and as soon as we left the party, we both started crying. I told him that I would do anything if I could make it go away and that it was OK to be mad, that diabetes sucks but we are not going to let it win. He held my hand on the walk home, and I was just heartbroken. When we got him home his BG was only up to 69, so I gave him a juice and put him to bed. He fell asleep the second his head hit the pillow. After an hour we checked again and he was barely over 100, so one more juice down the hatch. It's amazing that Tyler can drink a juice box in his sleep without waking up or remembering that he even drank it later! Finally at 2:30 he was over 150 and we were able to go to bed ourselves.

This morning at 7am the phone rang- it was the boys from the party calling to check on Tyler and to ask if he wanted to come back for breakfast. He was up and dressed in seconds! I think that today I am more upset about it than he is. He really only missed the slumber part of the party. He had a blast hanging out with his friends, playing basketball, telling ghost stories and was even there to witness a boy drawing on the face of the first boy who fell asleep with a sharpie! I hope when he looks back on this that he remembers the fun stuff and the fact that he had to come home because of his diabetes is just a minor part of the memory.

Type 1 diabetes is awful, there is no denying that. I wish with all my heart that we did not have to deal with it, but we do and we are going to look it in the eye and do the best we can every day. We may have to do things differently than others, but we will do those things and make the most of it. It's all we can do.

Slumber Party

It was bound to happen sooner or later. I just dropped Tyler off at his first slumber party. I worry about him going because so many things can go wrong! It would be too easy to tell him he can't go, but I don't want his living with Type 1 to equal CAN'T. I want him to do and enjoy the same things other 10 year old boys do. We CAN do this, it will require some preparation and tools, but he deserves that, and he wants that so we are giving it a shot.

He is armed with the green bag- extra juice boxes, and a cell phone. The Mom hosting the sleepover got a copy of my high/low blood glucose cheat sheet and got to witness my little breakdown complete with tears. Yay for me. Lucky for us, the family lives right across the street from us, that makes it a little easier to handle. I'm not gonna lie, while walking him over there I suggested to him that he could hang out and come home when the other boys go to bed- he was not interested.

The plan is for him to call with his blood glucose reading BEFORE cake and Ice Cream, then to call again 2 hours after that, whatever that call brings will determine then time for the next check in. Its going to be a LONG night for me, I'll post tomorrow on how it all ends up.

Don't leave home without it!

We keep a bag packed at all times with diabetic supplies that goes everywhere with us. We have it down to a science. This handy little green bag is always packed and ready to go. We have used many other types of bags in the past, but I like this one best- it is small enough to fit in my purse if I want but big enough to hold the essentials. The mesh on the front is nice to quickly see that everything we need is in the bag. It is important to always have some kind of fast acting carbs on hand in case of low blood sugar as well as insulin and syringes. We have learned the hard way to always keep a pump site change with us, just in case.

The bag contains:

• juice boxes- these small size Juicy Juice are the best for low blood sugars, 15 grams of fast acting carbs
• Blood glucose meter (in the pouch is a lancing device, extra lancets, and test strips)
• glucose tabs
• glucose gel
• supplies for a pump site change (reservoir, infusion set, iv prep wipe)
• vial of insulin
• syringes (in case of pump malfunction or other reason a shot of insulin may be necessary )
• disposable lancing device ( in case the one in his test kit gets lost or broken )
• Glucogon Emergency Kit- in my opinion the scariest diabetic supply EVER
• Ketostix for checking for ketones in the urine in times of extreme high blood sugar or illness

Getting Started

My son Tyler was diagnosed six years ago at the age of four with Type 1 Diabetes. We have been through a lot since then, and continue to battle Type 1 every day. It is a never ending job, and is a constantly changing process.

As the Mom of a kid with Type 1 diabetes, my life is never boring. I have been thinking about starting a Diabetes related blog for a while now. I envision a place where I can vent about Type 1, review products, discuss diabetes in the news and keep a journal of our lives living with this crazy roller coaster of a disease.

I hope that by putting it all down in writing, it will serve as some stress relief for me, and hopefully provide some insight to those in our lives who may wonder what life is really like for Type 1 diabetics and their caregivers.

So here we are- Type 1 With Tyler is that place, welcome to our world!