Hi Friends and Family! Thanks for taking the time to read about our Sam's journey with Type 1 Diabetes (Juvenile Diabetes. or T1D).
First, I'll give you the short, medical explanation of T1D: "Type 1 diabetes is a life-threatening autoimmune disease in which a person's pancreas stops producing insulin - a hormone essential to the ability to get energy from food. It strikes both children and adults suddenly and changes life as they know it forever. It cannot be prevented and there is no cure."
This is not the same as Type 2 Diabetes, which typically develops after age 40, but can appear earlier. In this form of diabetes, the pancreas still produces insulin, but the body does not produce enough or is not able to use it effectively. Treatment includes diet control, exercise, self-monitoring of blood glucose and, in some cases, oral drugs or insulin. You may have a parent or a friend who has Type 2 diabetes. Unlike T1D, Type 2 can some times be prevented.
*sigh*. Prevented. I wish.
It was late August, 2011. Sammy had just turned 19 months old, and had come down with a yucky cold. He started drinking an abnormal amount of fluids, and in turn, peeing constantly. And when I say abnormal, I mean he would easily drink 36 oz of milk at dinner time and still want more. At first, I chalked it up to him being sick, and he was just really dehydrated. But when his cold started to clear up by the end of the week and he was STILL constantly thirsty, I knew something wasn't right.
I called his pediatrician on a Friday and set up an appointment for the following Tuesday (it was Labor Day weekend). I remember telling my husband, "I KNOW Sam has T1D, I just know it". He of course thought I was paranoid, because, well, I am! :) But I knew it was bad. I knew something wasn't right.
Sam and I went to the doctor Tuesday morning, September 6th. I asked the nurse to please test him however they test someone for T1D. The doctor also thought I was paranoid, because T1D doesn't run in our family, and typically, babies arent diagnosed as young as Sam was.
But, after appeasing me, they pricked his little finger and checked his blood sugar. After the reading came up, the doctors expression dramatically changed and she said, "You need to go to Children's Hospital. Now. Don't go home, drive straight there". I am now officially panicking.
So what do I do? I call the husband and of course I go home!! :) The doc said we "may" have to spend the night at the hospital, but she wouldn't say much. I grab a few things for the diaper bag, grab my husband, and we head to Children's.
Once there, wow. I don't even remember it all. I just remember them confiscating his Goldfish crackers right away. And it was all very rushed and serious. Next thing I know, they have him hooked up to 2 different iv's, a catheter to check his pee, and Sam is crying and I am BAWLING. We were in the ER for lunch, so I went to the cafeteria to get him some food. But I didn't know what to buy, because really - he couldn't eat ANYTHING (that I knew of! No mac and cheese or goldfish or peanut butter and jelly! What else do you feed kids that age?!).
Sam was transfered to the big Children's Hospital in downtown Dallas. In an ambulance. And hes crying for me the whole time because I cant ride in the back with him. Hes scared and hasn't had a nap and is being poked and prodded and is miserable. It was awful.
We stayed at Children's for 4 days, 3 nights. That was awful, too. I love me some Children's Hospital, and the staff there is AMAZING, but yeah - staying at the hospital with your sick baby blows. :)
Through the course of those 4 days, we learned all the ins and outs (or most of them!) of T1D. How to check blood sugar (a finger poke where you draw blood and the blood goes into a meter that tells you what his sugar levels are). We quickly started calling this "checking your beeps", because the meter would go BEEP!! when it was done. :) These sugar checks had to be done before every meal, after every meal, and countless times in the middle of the night. I don't even know how many times they had to check his beeps at the hospital. All I know is that he is one brave kid. He would whine sometimes, or say NO! or even cry when the nurses would come in, but really, for a little 19 month old dude, I was in shock at how strong he was (IS!!).
Not only did we learn how to check beeps, but we learned how to give him shots. Which he had to have after every meal, and at other random times to control his blood sugar. Again, I dont even know how many times a day that happened. 6? 7? We were ALL learning how to control his diabetes together. Sometimes, he would get too much insulin and "go low" (when your blood sugar drops and you get seizures or just die), and some times he wouldn't get enough and be "too high" (when your blood sugar rises and your body pretty much poisons itself). He was on restricted meals for a bit (not so much fun with a grazing toddler!), but soon, could "eat what he wanted", in moderation.
Fast forward a bit - Sam now has an insulin pump (a small cannula, kind of like a catheter, that is in his body at all times to deliver insulin). This has been SUCH a blessing - no more shots countless times a day - his pump delivers all his background insulin, and also the insulin to cover his meals. We have to change it every 2-3 days, but getting a big poke every 2-3 days is better than getting numerous shots daily. :)
The challenges are always here, though. His life literally depends on me. His little fingers have little holes in them from all the "beep checking" we do (6-10 times a day). His body has tract marks and scar tissue build up from where his insulin pump goes. He is constantly hooked to a little machine (his pump). I check him every night, sometimes multiple times, to make sure his blood sugar is ok and he isnt going to die in his sleep from being low.
Our lives will never be the same. When he was first diagnosed, I remember a nurse telling me that in a year, this will be the "new normal". I thought there is no way. But its true. I cant imagine him NOT being diabetic. I wish he wasn't, but this is the "normal" way for our family. We don't flaunt our food in front of Sam. The kids have dessert after he goes to bed. Or they sneak it somewhere while he is awake, hehe. :)
Now just so you know, Sam CAN have treats. If he goes to a birthday party, he can have cake and ice cream, just like everyone else. But the rule is, everything in moderation. He doesn't get to have Capri Sun's like all the other kids who are at the park or at the pool. Sometimes, it breaks my heart when he says, "Mom, can I please have a juice? So and so has a juice", or a cookie, or whatever. But he knows what he can and cannot have. There are fun little juice pouches and treats I give him to make it feel like hes not missing out. Oh, and gum. Lots and lots of gum. :)
And for a little guy, he is sure smart. Before he eats a snack in the nursery at church, he always asks, "Did you check my beeps? I need to check my beeps!". :) I don't know how I will send him out into the big world without me constantly at his side. But him being so aware makes me feel better. I just don't want to rely on someone else to keep him alive. :)
My sweet, strong, brave little boy is only 3 years old. Three years he has been on this earth. And for more than half of his short life, he has lived with this chronic disease. Research is coming SO far, and I have faith that in his lifetime, they WILL find a cure. But we could sure use your support and help. :) Sam isn't the only kid living with this life threatening illness. If you would like to walk with Team Sammy, or donate, or both, I wont complain at all! :) The money I raise will help JDRF fund critical research to progressively remove the impact of T1D from people's lives until no one has to fear developing the disease. I sure would appreciate it, and Sam would love to have you join us. He will even show you his sweet Gangnam Style dance as an added bonus. ;)
Thanks so much for reading this long winded story. If you have any questions about anything (the fundraiser, more about Type 1, or more about Sam), please, do not hesitate to contact me!!
~Janelle :) (Sam's mama)
PS - JDRF is the largest nongovernmental funder of T1D research and the only global organization with a strategic research plan to fight T1D. This science is complex and costly, and every dollar JDRF is able to direct toward research comes from donors like you. Woohoo!! :)
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