Korky's Diagnosis Story
Friday, February 12, 2010Take 1
I've had a blog about our family for a year and a half or so already, but recently I thought I'd start one that is just about how our family deals with Type 1 Diabetes. Our middle child, was diagnosed November 8, 2009. It was a major shock to us, as we don't have anyone with T1D in either side of our families. We do have some relatives that have had Type 2 Diabetes, but as we've learned, they are 2 TOTALLY DIFFERENT diseases. Yes, there are some similarities, but really the differences outweigh the similarities. We've lived with this disease for 3 months, and I have to say we are still learning, it's overwhelming at times.
I figured I'd start writing about T1D for a couple of reasons, I've enjoyed reading other blogs, seeing youtube movies and cruising websites that deal with it. I've felt support and camraderie out there in internet land and I thought maybe I could put some of my own support out there for other families to stumble upon. Also, the 2nd reason is so that I can journal our life with T1D for my daughter Kortnie, so she can look back on this journal and know that we have been right here with her every step of the way.
We have a typical family I think, my husband and I have been married 9 years this summer, we have 3 kids, Anastasia is 7, Kortnie is 5 and Graham is 2. Kortnie is the one with the T1D. After her diagnosis we looked back on her life and figured that she'd been living an undiagnosed exsistence for probably most of her young life. We've seen changes in her now that we know about her disease and now that we are working to keep her blood sugars level. Looking back, she's always been overly dramatic and run pretty "hot and cold", she could go from loving and sweet, to crying and tantrum throwing in the blink of an eye. She's always seemed to have a balance or dizziness problem, she'd just run into things or just fall down out of the blue, then she'd bruise like no other! When she was little she and switched from formula to milk she started throwing up and got really sick. We and the Dr's figured she had a lactose intolerance so we switched her over to Soy milk and that helped, but she would still get sick all the time. I used to joke that she was the sickest kid I knew, she'd catch every cold, flue, or virus that came around and she'd get it 10 times worse than anyone else. In March of 2007 we took a trip from our home in Arizona to Spokane, WA, we drove and stayed in hotels with indoor swimming pools, we swam and sightsaw adn atteneded a family wedding. We had a great time, but when it came time for the long drive home there was something wrong. Kortnie had to stop and use the bathroom I kid you now, every 30 minutes. She was dying of thirst too, after awhile we cut way back on the drinks, thinking it would stop the frequent bathroom visits, it didn't, for a whole day we would have to stop every 45-60 minutes so she could go to the bathroom, she even had a couple of accidents, she just couldn't hold it, she was crying because she was so uncomfortable and thirsty. The 2nd day of driving was better but we still had to stop every 2 hours or so. I figured she must have gotten a UTI from all the swimming, so I gave her cranberry juice and yogurt. After we got home she seemed to be better. Life went on and by the summertime she started having to use the bathroom alot more, around September we started noticing alot of weight loss in her, we thought that maybe she was just growing into her baby fat, then she started getting so tired, exhausted really, she would say she was hungry then not eat, and she was sick with colds and flues nonstop for about 6 weeks, the crazy thing is that she seemed to be okay during the week Monday-Friday, but by Friday night she was run down and would sleep adn be sick all weekend. Finnally the weekend of November 7&8th came, she looked much worse we could see her bones and realized she was losing too much weight, her skin was dry, she looked like she was gray, we agreed we'd take her to the Doctor first thing on Monday morning the 9th, however sitting in church on Sunday morning, I felt a strong prompting, telling me to take her to the ER RIGHT NOW, so I did, I got up and took her. I just knew they'd tell me she had swine flue or something like that, but oh no, they said she has diabetes! After that it was a whirlwind, they started taking tests, taking blood, checking urine, an awful blood gas test, besides T1D she had a UTI and Strep throat. We live in a small town in Northern Arizona and the hospital decieded that we had better go down Phoenix and go to the Children's Hospital. They wouldn't even let us make the 3 1/2 hour drive, they insisted that she be flown by medical helicopter, they scared the crap out of us telling us that her body was shutting down, she was losing weight because her body was eating up all of her reserves she'd already lost 1/4 of her body weight, her blood was turning to acid and eating her up from the inside out. So, she and I flew down to Phoenix, they put us in PICU and hooked so many tubes up to her, she looked small and tiny and frail in that big bed with all those tubes hooked up to her. The scariest night of my life! We spent the next week in the hospital learning all about the disease and how to take care of our little girl. I'll end this post for now and next time I'll finish the story and then from there we'll go on and talk about every day life, lessons learned, funny things, sad things, about how live goes on. Thanks for reading.
So, it's official, Kortnie was diagnosed with Type 1 Diabetes (T1D) 3 months ago. That means that she had her first round of blood tests. She'll need to do these tests every 3 months forever I guess. Anyways, this time all they ordered was a GlycoHemoGlobin (otherwise known as an A1C result), I guess that as time goes on they order tests for thyroids and other issues too. (we are still learning and absorbing all of this massive amount of information) Anyways, when she was diagnosed her A1C was an 8.9 and when she got tested this time it was down to a 6.9!
Here's the breakdown according to our Doc's a "normal" person will be around a 4 or 5, Kortnie should be around 6.8-7.5 with 6 being too low and 8 being too high. So there we are sitting in the office and the doctor is checking out Kork's results and he says, "She's normal", so of course I was totally relieved that she was in her range because I was worried that she'd be too high, I swear I never know if I am doing anything right, when we check her blood sugars all day she is all over the place and it makes me crazy! I like things just right, patterns, everything in it's place, everything turning out just the way I want it, and Kortnie's diabetes doesn't EVER follow suit. I am having a hard time making a place for the chaoticness of it. (enough of that, that's another post entirely), So like I said, the Doc said "she's normal" and I am happy, and Korky pipes up with, "I'm normal? So my diabetes is gone?" BIG SIGH, such a literal child, what more can we ask from a 5 year old though, really? So, no Kork your diabetes isn't gone, what Dr B is trying to say is that you are "normal" for a diabetic, "Oh" she says with a confused look on her face, "okay baby, by "normal" we mean that your results are "normal" for your diabetes and we did a good job keeping your blood sugar under control, you still have diabetes, forever, but we did a good job handling it, and we have to always do a good job so you can always have "normal" test results"....."okay mom" BIG SMILE, but I can tell this is just more info that her sweet 5 year old brain is having a hard time processing. Over all, it sucks, but we'll continue dealing and living with it, we'll get to be so it's just a regular part of life, right?