My little one Sofia, now 4.5 yrs old always had her sippy cup with her, it was like her hunky or wobbly or blankie other kids carried. As a slightly older mom with 2 adult children, (now 21 & 19), Sofia is our blessing in disguise! And was the only real argument my fiancé and I had, I insisted I was done I had 2 teens boy & girl, was looking forward to grandkids, finally having nice furniture, etc. So, to his delight, we ended up expecting.
She is bright, at 9 months was done nursing (a sad moment for me), at a year no longer wanted a bottle, had to have a cup, never really used pacifier, standing, walking, climbing all early on her own, always has an “I got this” attitude. Potty training, also completely done by age 2! Except at night we still have a ‘if she’s sleeping, she’s peeing’ attitude.
Life is normal, at about 2.5 I take her in, sippy cup in hand, for a possible UTI or yeast infection, going more often, suddenly not making it on time? Her regular doctor was not there, so we saw another in the office. They did tests, all negative. So ok, she’s just too busy playing to stop and go, or likes playing in water washing hands so that’s why going more. Seems reasonable.
Approximately six months later, back in- same thing, not regular doctor again, but this time she’s also complaining it burns when she goes. Dr. looks, some redness, some paper left behind, because my “I got this” has to wipe herself, & common not doing a good enough job. Ok, but we are going backwards, she’s now using pull ups because really not making it in time! That’s fine, common, etc… give an Rx just in case till test results come in, again negative, stop Rx.
We take in our young teen niece and her new baby, make sure all up to date on shots, whooping cough, flu etc. Sofia’s not, she needs her flu shot, so took her in mid January. Again a completely different doctor in the office, again sippy cup in hand, she’s 3.5 going thru all regular questions; why was she here before, height, weight, all good, not really concerned still back in pull ups, except how much does she drink a day? I really don’t know? She always has her cup. It’s a splash of juice (like a tablespoon) and rest water, or just water. Milk at breakfast & dinner. It doesn’t really affect her appetite, (older kids had to take drinks away, so would eat first, not the case with her). But, I take a guess and say about 80-100 oz a day? He explains this is too much, and just habit at this point. To limit her to drinks only at meals…. she got 1/2 flu shot, to return in s month for 2nd dose.
I get home and actually measure how much she’s really drinking per day. It was closer to 129-160 oz a day. This drink thing started a month long battle with my stubborn 3.5 yr old. We tried charts, stickers for each drink, look you get 5 stickers/drinks a day, etc she’s taking her play kitchen cups into the bathroom to sneak drinks of water with, take them she’s just using her hands, she got this, don’t need a cup.
About a week before returning to Dr. she’s not looking to good, has no energy, not sick, but napping more, just looks off, wasn’t eating as much. Feb 13 stick in tub in morning, she wanted to sleep without her pull up, we tried… wow my normal thin child is scary thin, like I see all her bones, almost over night? She’s very tired all day, I let her drink what ever & how much she wants, trying to get her to eat anything, valentines day cupcakes, sure have one, 2 little bites done, very odd, ok she’s got a bug or something, wanted apple juice, fine 1/2 water, immediately throws it up. Very tired, really just doesn’t look right, texting dad pics st work, look this isn’t right, not a normal cold I can’t figure it out.
Now every doctor’s office closed, this isn’t really an ER thing. Watching waiting, debating, she says tired and lays down on the floor, not in front of TV, just the middle of the floor. Dad works 2nd shift so all our normal days are later than everyone else’s like 10a-11p, it’s 10 pm texting dad at work, I’m home babysitting a toddler, and have his teen niece there with her new born baby, hey as soon as done at 11:30 I think I might want to go to ER.
Sofia’s so pale and thin, eyes even look dark and sunken in, I don’t know much. I’m getting my self scared, thinking cancer, leukemia or something, ’cause nothing I’ve ever seen in a child almost overnight? Call the doctor office, they have this great 24 hr nurse line. We go thru everything, am I being to panicky? Should I call first thing in morning to get her an appt or go to ER tonight? I have 2 older kids, I worked in a daycare, kids in scouts, school etc. This is no cold I’ve ever seen. She’s up again, says belly hurts, thirsty, throwing up water, still nothing to eat, no fever, but I can’t get past the way she looks. Like a skeleton with skin, she didn’t look this way yesterday.
I really don’t want to go to the ER. I was not sitting there for hours with a sick child, I’d it would be faster to wait till morning to see the doctor. Yes, I was a little spoiled we all the hospitals in my hometown of Pittsburgh, especially with access to children’s hospital and their fast track area, literally in and out in 2 hrs for a broken arm, X-ray, yep broken, starter cast, sling, see you a 2 days after swelling goes down for your permanent cast. Allergic reaction, 30 min in, shot, it’s working, ok out.
The nurse is going through her lists of questions, what does she normally eat, drink and I explain that’s been a fight cutting back that habit. Then she asked is I noticed if her urine was sweet smelling or sticky? Yes, it’s all over the floor around the toilet, cause she can’t get there fast enough, I’m thinking I’m not noticing fast enough to clean it, because it’s like cleaning up sticky syrup, several times a day. Few more questions, and her advice was to get to the ER now and ask for a Glucose test. Ok, I know can’t give me a diagnosis over the phone but can you tell me anything? She thinks she’s diabetic, but to get her to the ER right away. Diabetic? Ok?
Get to ER, explain called Dr office nurse line, said to come in right away for a glucose test, they do it during check in with height, weight, temp. Thing must be broken, do it again. Send us out to waiting room, and I’m going to really get settled in, good spot, track bag in case she gets sick, water bottle out, just about to actually sit, and wow she’s called back, really? Ok BAM IVs in, 2 different bags going, saline and insulin. And calling in an ambulance to transport her to bigger hospital? We live 10 min away I didn’t think dad was going to make it there before we left. Spent the next 5 days in the hospital, with a crash course on Type 1 diabetes, counting carbs, giving insulin shots every morning and every meal, snack or drink that contains carbs….
I hear a lot of Type 1 people talking about people telling them “you have diabetes, just be glad it’s not cancer” and they get upset over the comment. No one on either side of our family has diabetes, but 4 of the 5 family members just on my moms side didn’t win their battles with cancer. So Diabetes, ya it sucks, there is no cure, no real way to win this fight, but this Valentine’s Day 2018 will be 1 year, and ‘we got this’, with cancer it’s a win or lose battle. With Type 1, it’s just a fight, that you can’t really win, but as long as you are fighting, you are surviving and you are winning.
We got this, even with no support from our extended family (they don’t get it, and the idea of giving her a shot? Nope no way they just keep their distance). Not a problem, sadly my 19 yr old daughter has already stepped up to be her sister’s guardian, if God willing anything ever happens to either one of us. That’s a little sad only one person outside of us her parents is willing to care enough to learn, and she’s barely an adult herself. My son would if HAD to, he’s just not interested in children in general.
But there’s other help, Facebook parent groups, JDRF lots great info, children’s special health care services. Going to seminar’s learning about new tech seeing Dexcom there was a huge game changer, just recently found out about respite care, with no outside help I will be calling them one day. And the next JDRF summit taking a closer look at the vendors and the pumps!
A year later, a year older, my very independent 4.5 yr old little girl still says “I got this”, she can do her own finger pokes, just can’t read the numbers yet! And knows she needs insulin to eat carbs, and knows nuts, meat, cheese, eggs, the veggies in the one drawer are freebies = can snack with out insulin. She can even get her insulin pen needle on and primed.
We got this.