Ella was diagnosed with Type 1 Diabetes (T1D) when she was 6 years old on Monday, January 23, 2012. Diabetes had already joined our family before then; we just didn't know it yet.
I started noticing some odd behaviors about 2 weeks prior...Ella was moody. Being a girl, she's always moody, but she was really moody. She was also complaining about headaches and she said that her legs hurt. I thought she was just trying to get out of cleaning her room.
Then about 1 week prior, she started drinking...a lot...and going to the bathroom...a lot. Especially at night. I figured she wasn't drinking enough during the day so I sent her to school with a big water bottle with strict instructions to drink half before recess and half after. She still asked for 2 glasses of water at bedtime...and then she wet the bed. Of course she wet the bed, Krissy - you just gave her 2 glasses of water! Exactly. See how easy it is to miss the signs?
The Friday before Diagnosis Monday, she spent the night at my Mom's house where she drank a lot, went to the bathroom a lot, and wet the bed. When I picked her up in the morning, my Mom commented that she was acting just like Beau, our childhood dog, when he was diagnosed with diabetes. We had a good laugh about that one...hahahaha, yeah, right. T1D does not run in our family. In fact, nothing does! We're strong...like bull...stubborn...like ox. Not my kid. No way. But it was there...in the back of my mind...I'd already google searched it and dismissed it.
Saturday I took her to Skating Plus with her best friend, K, whose Mom is a nurse and whose Dad is a paramedic. I said (feeling like a over-reacting hypochondriac mom) to Mom nurse, "Dude - I think my kid has diabetes." Yes, those were my exact words. Dude and all. And then I proceeded to give her popcorn and an Icee. Nice.
On Sunday, we went to Mom Nurse and Dad Paramedic's house for a birthday party where I loaded her up with lemonade, pizza, cake, ice cream and a brownie...or two. I noticed Mom Nurse and Dad Paramedic watching her drink...and go to the bathroom...and drink some more. And I noticed them whispering in the kitchen. Dad Paramedic pulled me aside before I left and asked if I was going to take Ella to the doctor.
"Yeah, I'll take her tomorrow. I'm sure it's nothing. But I'll take her, just to put my mind at ease."
When we got home, I asked her, "How thirsty are you?" and she replied, "I'm so thirsty I feel like I can't breathe." That night she wet the bed...twice. She came into my bed and I watched her sleep, and prayed over her: God, please don't let it be diabetes. Please don't let it be diabetes. Touch her body, Lord, and heal whatever's going on. May she wake up healthy and restored. Please don't let it be diabetes.
Monday morning my husband came home from working 48 hours was off again to his yearly physical. I called the doctor's office and scheduled an appointment for 9:30am. It was a dreary day (figures, right?) so I bundled up my youngest, Livie, picked Ella up from school and headed to the pediatrician, Dr. G, who just happens to be my childhood pediatrician. Creepy and Cool at the same time. They had her pee in a cup (Ella thought getting wee-wee on my hands was hysterical) and sent us back to our room to wait. Ella was just about to shove a pretzel in her mouth when Dr. G walked in and said, "Let's not have her eat anything right now." It was then that I knew. Dr. G proceeded to tell me that her urine had sugar and ketones in it. In one final desperate attempt, I asked, "Could it possibly be ANYTHING else?" He shook his head no and at that point it became real.
We were sent across the street to get blood work done. Clay met up with us there and my mother-in-law came and picked up Livie. Ella, Clay and I were then sent back to Dr. G's office where we were told that her blood glucose was 615 and her body was slightly acidic and we had an appointment at Children's Hospital Los Angeles (CHLA) at 1:00pm. He might as well have spoken Greek to me because at the time, I had no clue what a blood glucose of 615 meant (normal is between 70 and 150), as evidenced by my next question, "So...can we stop for lunch?" Ummm...no.
An hour later, we arrived at CHLA where we began a 6-hour crash course into the world of diabetes. Here's a lancet, a blood glucose meter, this is how you stab your child's finger to test her and you'll be doing it 8 to 10 times a day (including midnight and 3am). Here's your fast-acting insulin, long-acting insulin, here are your syringes, here's how you pull insulin and how you inject it into your screaming child who is deathly afraid of shots...and you'll be doing it 7 times a day. Here's how you count carbohydrates and here's how you figure out how much insulin she needs for how many carbohydrates she eats.
Around 7:00pm, we were done. She wasn't in diabetic ketoacidosis (DKA) so no hospital stay, no friendly nurses or knowledgeable doctors helping us through the first few days. Just a bag of diabetic supplies, a script for more supplies, a binder full of information and a confident, "You'll do fine" from the CHLA staff. I've never felt so tired in my life. I was emotionally drained and mentally and physically exhausted. Our first born daughter had just been diagnosed with a chronic disease and we were now literally responsible for keeping her alive on a daily basis and you're letting us take her home? Are you kidding me?
We got home around 8:00pm. I looked at Clayton and said, "What do we do now?" and he said, "I guess we feed her dinner" and so began our lives with a sprinkling of blood glucose checks, carb counting and insulin dosing on the side.
WoW...my stomach is in knots as I just relived that day. Still feels dream-like, doesn't it? If I could, I would give/trade my life and swap it for a normal one for Ella Bella. I wish I could take this away from you. So wrong so wrong so wrong. The burden, pain, anguish, grief. Sadness. But enough. No point. It's awful, and it's our reality. You have just returned from the Friends For Life Convention with a smatter and a sprinkle of renewal and a new perspective. Healthy hope and fresh outlook. I think it was such a good thing for you all to attend. I had the girls today (7/16/12). Ella was belting out an ADELE number on the way here. Amazing. (I'm working on memorizing the last part, Mimi.) She created and designed a three dimentional kitty house for her stuffed "Ginger" from cardboard that she cut all by herself today. It amazed me. Little architect. Covered in colorful candy and cake collage pictures, (it's a "Gingerbread" house you know) topped off with water color. "Let me do it myself, Mimi, I don't need any help!" She has so many gifts and talents that this diagnosis will not in any way hold her down. She will be the architect of her life. I ask so many questions...why why why....again, no point. All we can do is LOVE and support her as you are. She is blessed to have you and Clay. Oh yes, and pray for a cure for our precious little one and all Type Ones. Pray pray pray.
ReplyDeleteYour such an amazing writer Krissy! So excited you started this blog...for so many reasons. I love you guys and miss you:)
ReplyDeleteHi, My name is Jan and my son was diagnosed at age 2yrs. 6 months after that he was the youngest T1 in southern california on the insulin pump and is now 15 1/2. My cousin just liked your page and that lead me over to your blog. This story is so similar to mine but without a dog to reference. We are in Los Angeles and spent some time at CHLA when our doctor worked there. He is in private practice now and we would follow him to the ends of the earth. Which camp are you attending? D-Camp is an invaluable experience for both parents and campers. I'm sure you have a great support group around you but if you ever want to reach out my email is janfowler1@gmail.com. T1 is a long and exhausting road that never ends or lets up for a second. Just keep your sense of humor, it goes a long way. Peace to you and your family.~Jan PS-my son has never had a hospital stay to date. We are so fortunate in that way.
ReplyDeleteThanks, Jan, for your kind words of encouragement. We just got back from Camp Conrad-Chinnock and earlier this month we attended Friends for Life in Florida - both were amazing and we plan on doing both every year. We have met some amazing families & people because of diabetes so I do have a great support group - I don't know how I would do it without them!
DeleteKrissy, thank you for sharing this with everyone. It is such good information to share with others, and your experience and emotional roller coaster ride into the life of diabetes really puts it all in perspective and gives us all a bigger picture of living with and fighting diabetes. I wanted to share a book that literally changed our families life called "wheat-belly" by William Davis. We have been avoiding wheat for over 6 months and have witnessed the impact wheat had on our lives. It's pretty incredible how different the wheat we eat today is from the wheat our parents and grandparents ate. Anyhow, I am so glad to read about Dexa and to learn more about diabetes, you are truly a hero to your kids and an awesome mom. Please continue to send us updates and look forward to seeing you the next time were in cam!
ReplyDeleteMuch love-heather
This story is heartbreaking and makes me relive that moment with Carter. When you get a chance, check out my blog and Carter's story at http://www.thediabeticjournal.org/carters-story/
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