Worries

I am hoping by writing this I will somehow make my worry go away.

Back story -- Aidan is a part of a research study that tracks to progression of diabetes. He was genetically tested at the age of 3 for a gene linked to diabetes. He has it. Aidan was also tested for autoantibodies linked to diabetes. He has them. For two years he's had no progression. Just because he has the gene and autoantibodies doesn't mean he will develop the disease... they keep reassuring me this.

Jump ahead to Aidan's 5th birthday. I have Aidan's bloodwork done every birthday (nice present, eh?) and wait for the letter saying everything is fine. This year I got the phone call asking me to bring him back in for a second blood draw. Aidan's second blood draw was in early September. I was told I would hear back in 6 - 8 weeks. I haven't gotten the much desired letter (you ALWAYS want a letter rather than a phone call with blood work -- that's one thing I've learned) and I am trying not to worry since I haven't gotten the phone call yet either.

What I am really, really hoping for is a letter in my mailbox when I get home today. I'll keep you posted.

Today's A1C

Not too bad considering the extreme highs for the last two weeks from illness and growing over an inch in the last 3 months! (she's over 4'6" now (138 cm))

(Sain's last A1C was 7.4. I was expecting this one to be higher because of all the sustained highs she had with the infection. What a pleasant surprise 6.9 was... it's nice when all the hard work pays off!)

Happy World Diabetes Day!

A few facts:
-Every 10 seconds a person dies from diabetes-related causes.
-Every 10 seconds two people develop diabetes.
-Over 250 million people live with diabetes worldwide. In 2025, this figure will reach 380 million.
-More than 200 children a day develop type 1 diabetes.
-In developing countries, close to 75,000 children live with diabetes in desperate circumstances.
-Type 1 diabetes is increasing fastest in pre-school children, at a rate of 5% each year.

Sain and Aidan take over the blog for World Diabetes Day (tomorrow)

If you look closely enough

Saturday was belt testing and Sain did amazingly well. Her form was great, she knew her techniques and even Master Dye complimented her (I think that meant the most to Sain.)

No one there knew the week she had but if you look closely enough there was a sign.

Sain kept both her hospital bracelets on for testing and when asked why responded, "They remind me how close I was to not being able to test and if I get to nervous they remind me how lucky I am to be here."

Next Saturday a number of kids will be awarded their new ranks. I know I am a bit bias but no kid deserves advancement quite as much as Sain.

How we spent the last 3 and a half days

It started Saturday evening with nearly 3 hours of unexplainable "High BG -- over 600" readings. We bolused, changed sets and insulin, bolused again, gave injection and, as a last resort, had Sain take a warm shower to get the insulin going.

I almost went to Children's at that point but the numbers finally started to go down.

Sunday the pain began. Sain rarely complains about physical pain -- if anything she's a bit too stoic but I was startled Sunday morning to hear her scream in pain from the bathroom.

(I will skip ahead to Sunday afternoon)

After a number of hours of pain and high blood sugar I took Sain into Children's ER. It seemed pretty clear cut, probably a urinary tract infection. All tests came back fine -- no infection, no acidosis, all labs were fine. The doctors were actually amazed at how healthy Sain is. After 4 hours of tests she was given an IV because of the dehydration from the highs and we were sent home and told to come back if the pain continued or got worse.

Monday it got worse. I decided to try Urgent Care from the local hospital (a 2 mile drive versus a 20 mile drive) and was pretty much told I was a hypocondriac mom whose child had uncontrolled diabetes. (Side note on that, Sain hasn't wanted to eat of late so when she wanted a maple bar I got her one. She ate it about 45 mintues before we went to urgent care so her BG was high and there was sugar in her urine sample.) All the Urgent Care doctor would focus on was the high BG and he treated me like I was an idiot who didn't know how to care for my daughter. I swear he only spent 5 minutes with us.

We spent Monday night alternating between advil and tylenol for the pain and doing many, many extra boluses to lower BG. Also, Aidan got sick on Monday night. :(

This morning I went to work for an hour to get some urgent things done and then took Sain back to Children's. They retested her and found a very aggressive urinary tract infection that didn't show up on Sunday's test. She was in severe pain most the afternoon but seems to be responding to the very strong antibiotic they prescribed. (She and Aidan are doing karate in the living room right now.)

Hopefully the BGs will come down soon - -she's 342 now and, sadly, that is a good number for today! (but no ketones!!)

AND HAPPY 41ST ANNIVERSARY MOM AND DAD!

Happy Halloween (and Christmas thoughts)

I have a love/hate relationship with Halloween.

I love the spooky houses, costumes and trick or treating but I don’t love the way Sáin is treated on this holiday.

The first Halloween after diagnosis I did something that I am very thankful for… I let Sáin pretend she wasn’t diabetic. That year she had a fair amount of treats – I corrected the high BG that followed. The second year she had a little candy – I corrected that high, too. Last year she barely touched her candy (we still have most of it sitting in a bowl on a shelf.) This year we are going to a haunted castle and Sáin is well aware she can have whatever she wants while we’re there (as long as she boluses.) The less of a big deal I make about this dreaded day, the less candy she eats.

Here is what I don’t love about this day. I know I will come home today to the tears of frustration that follow school parties and the dreaded “Sáin can’t have sugar” or “Here’s a different treat for you because you aren’t like the other kids in your class.”

Despite 3+ years of educating both the kids and their parents, some people still don’t get how hurtful ignorance is. The sad thing – it’s always the same two girls that hurt Sáin. I’m beginning to think they are just mean girls and diabetes is an easy thing for them to pick on.

I know it’s only Halloween but I can’t stop thinking about Christmas.

My gift to the kids this year is a trip to Vancouver. We will be taking the train up on Christmas Eve, spending 2 nights at the Fairmont Hotel Vancouver, and then taking the train home on Boxing Day evening.

(I’ve already email a temporary change of address to Santa so all the toys should arrive safely in our hotel room for Christmas morning.)

This will be the first Christmas the kids and I have spent without any other family around but I think it is exactly what we need.