Good Morning! I have something very special to share with you today. First, I’d like to share the warning signs of Type 1 diabetes and Ainsley’s diagnosis story. It is quite long, but important because of how easily Type 1 diabetes is misdiagnosed.
- Extreme thirst
- Frequent urination
- Increased appetite
- Sudden weight loss
- Sudden vision changes
- Drowsiness, lethargy
- Heavy, labored breathing
- Sugar in urine
- Fruity, sweet or wine-like odor on breath
- Stupor, unconsciousness
These symptoms are often misdiagnosed. When Ainsley was diagnosed, she was 18 months. She drank lots of water, had massive diapers, weight loss (but not enough for me to see), she was less active and would almost binge eat. We were not “googling” parents on illnesses. Ainsley had a well-child check-up 3 days before her diagnosis. We asked about the thirst, massive diapers, inactivity, and eating — we were told it was a growth spurt and if you give a child something to drink, they will drink it. She also had the weird breath smell, but we didn’t ask about that. The reason? I was 5 months pregnant with our son and had an extremely sensitive nose. I thought I was just being overly-sensitive and would be considered a weird pregnant woman who thought her child had bad breath.
The day prior to her diagnosis, we went to church. Ainsley is a very social little girl and was so already at 18 months. She clung to us instead of her usual walking around and saying hi. We left church early. Her breathing had deteriorated and she sounded as though she was having an asthma attack. We called the on call pediatrician, who wasn’t very helpful. Once home, she fell asleep on my chest and her breathing improved greatly. Upon waking from her very long nap, she ate something and her breathing immediately got worse.
We headed off to the ER and weren’t taken all too seriously. She had no fever and the only symptom we were concerned with was her breathing. They took chest and abdominal x-rays and came back with a diagnosis of constipation. Now, I asked about this since she was drinking tons of water — meaning, she shouldn’t be constipated. The ER doctor sent us home with orders to give her a glycerin suppository, have her drink prune juice and “make sure she is drinking water.” Obviously, a real good listener he was.
The next morning, my husband headed off to work and I was certain there was still something wrong. Ainsley hadn’t had any relief from the constipation. I didn’t have any prune juice on hand and couldn’t/wouldn’t leave her to go to the store. I talked to my Gram — half the country away and a very wise woman — who told me “I don’t want to scare you, but I don’t like the sound of her breathing.” I was already scared. My husband left work and searched for the child’s enema our pediatrician told us we would need.
Upon arriving home, we gave her the enema, expecting her to perk right up after it worked. As we cleaned her up in the bathtub, her eyes rolled back and she became unresponsive. I threw on clothes and we flew up to the hospital — fortunately located 10 minutes away. This time, we were taken much more seriously.
They took additional x-rays, gave her a breathing treatment and took blood. Ainsley was a baby who kicked and screamed at each pediatrician appointment. She just laid on the gurney, not fighting at all. It was heart-wrenching. I hated each x-ray, which meant I had to leave her side (I couldn’t be in the room because of being pregnant). Not too long later, a real peach of an ER doctor came in and said “We found what the problem is. She has Type 1 diabetes.” and walked out the door. I broke down. The nurse across from me told me it would be fine. No, it isn’t fine — it is a life changing disease. Later, before we were moved to the PICU, the doctor from the previous night came in and said “this kid wasn’t this sick last night.” It took every ounce of my being to not throttle him — how can you say that when you didn’t do a damn thing to actually determine that?
Ainsley spent a week in the hospital. She had two days in the PICU, where she had to have a central line put in for the innumerable blood draws that were taken to correct all of the various levels that were out of whack. She was extremely sick. Seriously sick. When she was moved to a step down unit, we had to learn how to test her blood sugar, draw up insulin injections and give them to her, count carbs — basically re-learn how to take care of our daughter. We were discharged at the end of the week and went home with a slew of new “supplies”, a daughter who couldn’t walk due to the muscle atrophy that occurred due to being so sick and confined to a crib for 4 days and a slew of emotions ranging from sadness to anger to fear.
Today I am thrilled that I have a gorgeous 5 year old who is “smart, brave and strong” in her words. She has the most infectious laugh that I wish I could bottle and sell. She loves to color and “make cards” and “do projects” like me. I am thankful for every day with her and especially those that are not filled with the roller coaster diabetes can be.
As I mentioned the other day, I am extremely fortunate to be part of the design team for Bugaboo Stamps. This design team is like no other. It is like family and they completely embraced this idea of blog candy for a cause when I asked for their opinions. Many offered up supplies for the candy. I approached Jodie, the owner & illustrator of Bugaboo, to draw a Bugaboo Brat ala Ainsley. Specifically with an insulin pump. Today I am thrilled to share with you Ainsley’s brat.
This might look familiar as it is based off the picture I shared yesterday, which was Ainsley’s first day of Kindergarten. I just love her! Jodie is so extremely talented! I’m going to keep this a bit brief due to the book above. The layout is the Fussy & Fancy Friday sketch and I changed up the bow just a bit to not cover up her high tops. There is a lot of sparkle — in the paper, the black ribbon and on her shoes — they actually do have rhinestones on the tops. This image is not yet in the Bugaboo Store, but will be in the future.
Fussy & Fancy Friday — #20
Stamps: Bugaboo Stamps Brat ala Ainsley (unofficial name), Gina K Tag Lines
Paper: Melon Mambo, Basic Black, Select White, DCWV Blossoms & Butterflies
Ink: Memento Tuxedo Black
Copics: C3, C5, RV25, RV23, R20, BV01, E33
Other Stuff: bling, May Arts ribbon, Modern Tag punch, Word Window punch, Nesties, True Black buttons, Raspberry Fizz buttons, Pink stickles
Thanks so much for stopping by today! A last note, please don’t ever doubt your maternal instincts that something is wrong with your child. If you were moved by Ainsley’s story, please consider donating to Blog Candy for a Cause. Every dollar helps!