Monday, January 30, 2012

Having a child with Type 1 diabetes and Celiac disease

I know, I know! It's been a while since I have blogged, but life has been busy around here with 4 boys, a husband, a big ole dog that thinks he is a child, PTO meetings, Strategic Planning meetings, and birthdays! So now I am hoping that George and Joe will give me just a little bit of time to write what has been going around in my head for a while now!
      I love it when people tell me that we should be so lucky that Logan's diseases aren't that bad! Really?! Do you know anything about diabetes or celiac? Most likely you don't, otherwise you wouldn't tell me that I am lucky that my 7 year old has diabetes and celiac. While they aren't cancer or terminal tumors or something rare and incurable, diabetes and celiac are life long diseases that can never be cured. This is something that Logan has to live with and deal with EVERYDAY of his life! Insulin is not a cure for diabetes, it is life support for a diabetic. Without the insulin they will die. Diabetes also is very finicky in children, so when you think Aha! I got it now, diabetes will laugh at you and show you that you have no clue what you are doing. We have some great days where Logan's numbers are in the zone, but most days we are lucky if we get one time his numbers are in the zone. No matter how much we count, subtract, divide, and have Logan eat zero carb foods we still don't win. There is no rhyme or reason to diabetes and for the most part it has a mind of it's own- so to speak! So everyday of our lives revolves around Logan's care and management of his diabetes and his celiac.
           Here is a look at a typical day in the Travis house. Mike is usually up by 4:30 in the morning getting ready for work, but the first thing he does is go upstairs and tests Logan's BG. Mike will also pack Logan's lunch for school and make sure that he writes everything that Logan is eating along with the total carbs- since Logan has to eat gluten free he has to have special snacks and lunches made or bought by us. Mike will then measure out Logan's cereal in a measuring cup and then does the same with the milk. Once Logan wakes up we test his BG. If he is high then we have to take that number, subtract 150 and divide by 100 to get his correction does. Mike then adds up the total carbs of Logan's cereal and milk and then that is divided by 12 to get the food dose. Then both those numbers have to be added to get an accurate dose. While Logan is eating breakfast I have to stand over him to make sure he eats every bite and drinks all the milk in his bowl, if he doesn't then the extra insulin will cause him to bottom out. Once Logan is all ready for school, I remind Cody what needs to be done if something happens from the walk from our house to the bus stop or while they are waiting for the bus. Once I know he knows what needs to be done, I hug and kiss the boys and send them out the door. Do you think that is easy for me? God no, I want to scream for Logan to come back, I want to keep him home with me always! The fear chokes me and I have to fight it every single minute of every single day! By this time George and Joe are up, so I am working on their breakfast while doing laundry, cleaning the house, figuring out dinner, cleaning up after George and Joe, dealing with their temper tantrums, fighting, spitting/spilling liquids everywhere, feeding the dog and cat, and the list goes on and on my friends! So, 9 am rolls around and I receive my first phone call from Susan the nurse up at school. It's snack time for Logan, so we see what Logan has tested at, then we do the subtract/divide to get a correction does if he is high. Logan picks out a snack and we take those carbs and divide by 18 and then add it to the correction dose to get a total insulin dose number. Logan is off back to class and I am trying to keep up with everything at home. It's now 11:50 am- Lunch time for Logan! Susan and I once again do the whole BG/Carb regiment. Logan goes back to his day and I go back to mine! It's 1:50 pm- Another snack time, so which means another BG/Carb regiment. And back to our daily routines. It's now 3:00 and Logan is getting ready to end his day at school, so school calls me again after having Logan check his BG, he has to be above 80 in order to ride the bus home. If he is low then they give him glucose tabs and Logan and Cody wait for me to come pick them up from school. Once 3:20 hits, I watch the street in front of our house for the buses to pass, usually by the third bus, Cody and Logan's bus will be dropping them off at the end of the street, I then watch the clock and watch out our bedroom window, waiting for the boys the come walking up the sidewalk. The boys usually walk in the house by 3:40-3:45, if they are any later than that, I will walk outside and look down the street for them. Most likely they are just being poky or goofing off, but you can never take the chance and assume that! Now all 4 boys are home! I make the older 2 do their homework and chores before they are allowed to do anything else, once those are done they have their free time. I try to start dinner around 4:30 since Mike gets home most days after 5. We try very hard to have set eating/snacking times because they help with the control of his numbers, but as hard as we try, most days life has other plans for us. Things get busy and hectic and eating/snacking times get pushed back, very frustrating! Before Logan can eat dinner he has to wash his hands and test his BG. Then once again it's carb counting,measuring food, and dividing by 18. Also have to remember to add his correction dose if one is needed. Once again we are like hawks, watching Logan eat ever carb loaded morsel that is on his plate to insure that he didn't get to much insulin and will then bottom out. After dinner it's usually time to take showers, read, get ready for bed, etc..... But at 7 pm the alarms on my phone and Mike's will go off reminding us to do Logan's Lantus shot- which is the 24 hour insulin. Ahhh finally after all that it's bedtime- for the kids at least! Logan's BG is usually checked before bed so we know what it is. Once all my little angels are tucked in bed and fast asleep, I usually do the stuff I didn't get done earlier because of my little dynamic duo of trouble. Yes! I am exhausted! Yes! I would love to go to bed, but for me most days/weeks I have insomnia. I can't sleep, I can't think, I can't do anything but watch movies or read until I finally become tired. But of course before I go to bed I have to check Logan's BG. The unknown is not something I can handle, I always HAVE to know what Logan's BGs are. It's the scariest thing in the world to me to have him go low, you just never know when that will trigger a seizure or he will go into a diabetic coma. And usually Mike and I take turns, so on a good night we could get 4-6 hours of sleep and on an awful night we could get none! Most nights I get 2-3 hours of sleep. Everyday is the same! What do we hope to accomplish? Well I hope that Logan will learn to take good care of himself and to always keep up with the management of his diabetes. We also hope that Logan will never go so low that he will have to use his glucagon pen, have a seizure or go into a coma. But I also hope in the end that- Logan will not lose his eyes, kidneys, feet, or heart to diabetes because that is what this disease will do if you are not on top of it ALL the time. 
     Celiac disease isn't cured by eating gluten free, it's just suppressed. If Logan were to eat gluten it would make him very sick and screw up his BG numbers. Yes, we are a completely gluten free house, and yes we make our other 3 kids eat gluten free! While celiac is more common than it use to be, it still is an incurable disease that you have to keep on top of. So not only are we looking at total carbs while grocery shopping, we are also looking at ingredients. Do you know how hard that is? Do you know that we sometimes miss the gluten in a product because they use a different name. It isn't just wheat that we have to worry about, it's also rye and barley. Let me tell you, it's in EVERYTHING! There are things that you couldn't even imagine finding wheat, rye, or barley in, but they are there! When you come into our house you will not find cookies, chips or other junk food (most of the time). Why? Well one, they are empty carbs for Logan- meaning that his insulin will stay in his body longer than the carbs from those foods will, two, gluten free eating is expensive! And there are 6 of us eating this way. A small box of gf cookies (smaller than normal boxes of cookies) usually costs us between 4-5 dollars a box. So to us that is not worth it. Instead we do a lot of baking, we make our own bread, and everything else is made from scratch. Besides it's much healthier to eat this way, my kids are now choosing fruit over junk for a snack, they love their veggies and are overall happier and healthier. But in the end, Logan is still unhappy with his life. Why? Well he hardly ever gets to go out to eat, unless they have a gf menu, he has to have special snacks at school that I pick and take every week, he can never have hot lunch, he doesn't get to have someone's special birthday treat that they bring to school, he has to constantly ask what's in the food if someone tries to give him something, and for a 7 year old this is all big things.
     No one wants to feel like an outsider. No one wants to be left out from treats, parties, or spending the night at a friends house. Yet, this is what Logan's deals with everyday of his life. Somethings we just can't make easier or better. So in the end, do you think it's lucky that my 7 year old has diabetes and celiac? I don't! I can't change what is, but I can help Logan make the most of it. But no matter what, I will always worry, I will always cry when no one else is around, I will always be just a little bit angry, I will always be an advocate for Logan's diseases and I will ALWAYS love my son and think that he is awesome, brilliant, handsome, and lovable, despite what he thinks about himself most days!
            " Woke up late today and I still feel the sting of the pain but I brushed my teeth anyway, I got dressed through the mess and put a smile on my face. I got a little bit stronger"

Much love to my family and friends! FYI- Most days my smiles are fake, but I try everyday to give you a real one!

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