1 year ago today...

This time last year, I thought I was taking my daughter was a simple checkup to find out why she'd been drinking so much water and using the bathroom so much. I had googled the symptoms several times (if you ask me, the symptoms are NOT known well enough by people who aren't affected by this disease) and thought, "There is no way that Alyssa has diabetes. It doesn't run in our family, and besides the excessive drinking of water, she's not sick!"

Alyssa's symptoms at diagnosis:
Excessive thirst
Excessive urination
Weight loss (almost 20% of her body weight)

Here we are, one year later. I didn't know how this one year mark would hit us all. We want to make it a fun day for everyone, so we plan on going to the Puyallup Fair later this afternoon! But it definitely hit me this morning after Alyssa got on the bus.

I was simply getting dressed for the day and feeling very stressed out (I had to get up and get Alyssa ready for picture day, feed the animals, have Alyssa make her bed, test blood glucose, do a site change, brush teeth and be out to the bus all in 50 minutes!) and I just burst into tears. I don't want to feel sad about it being a year, if anything I should feel stronger, we've made it through our first year of dealing with Diabetes! But in the same breath, I can't help but feel sick to my stomach... 1 year doesn't mean it's over, it means it's going to continue until there's a cure. And Lord, do I hope there's a cure in Alyssa's lifetime.

In the past year we have:
Tested Alyssa's blood glucose approximately 2,920 times.
Given Alyssa (and she's given herself) approximately 1,085 insulin injections.
Done approximately 70 infusion set changes for her insulin pump.

Pray for a cure for Alyssa.

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. - Deuteronomy 31:6

Strength for today

It's been awhile since I updated my blog so I thought this would be a good time!

Our walk for the JDRF in May went extremely well. Our team was huge, consisting of family, friends, and students - turned friends - from my Zumba classes. We raised about $2,000 for research in Alyssa's name! Not bad for our first year and not really knowing WHAT to except as far as raising money goes.

Alyssa went to the endocrinologist this past Monday and her A1C went up to 8.6. Disappointing, but I know why... her blood sugars have just been all over the place especially this past month. With higher basal rates going on now (basal: insulin Alyssa receives every hour to keep her blood sugar leveled, bolus: insulin Alyssa receives for high blood sugars and for food) I'm hoping we can get a tigher reign on her numbers. Although every hour, every finger prick brings another decision. Give the full amount of insulin she needs? But what she decides to go out and play? Am I giving her too many carbs to boost her sugar up for exercise - will she burn enough? Will she drop too low? It's a guessing game, and you have to make decisions based on mostly motherly instinct and how you feel your diabetic child trends... a lot of times I'm wrong. Just the other day she was going to go swimming and I knew she'd be off her insulin pump for at least an hour. I tested her blood glucose - 140. Great number, almost exactly her goal of 120... but was it high enough for her to jump into the pool and swim around for an hour? Or would her blood glucose drop drasticaly as it often does when she exercises? I gave her a juice consisting of 24 carbs and let her swim for over an hour. When she got of the pool, I checked her blood glucose and it was 278. WHAT? An hour of exercise and she's higher? Frustrating.

It's been a rough week for me emotionally. Sometimes I tell myself that I should be over the fact my daughter is now a lifelong diabetic (until God willing, there's a cure). But then I have to remind myself (and occasionally have others remind me as well) that I might forever feel this way. There's good times, and before this week there had been a lot of them - I felt like I was getting all this down. But for some reason after her appointment this week, the rest of the week has been one big emotional rollercoaster. Filled with a lot of tears, or a lot of "on the verge" of tears. The grief just comes in waves - and the grief wave hit me big time this week.

Having your child diagnosed with a chronic, life-threatening disease can be a very isolating feeling. I feel alone sometimes because I don't have any friends in real life (I have some wonderful online support through Facebook who have diabetic kids) that have a diabetic child. I can tell them how much work it is til my face turns blue, but at the end of the day, I feel as if no one understands me and how exhausting diabetes is. And it's just that- exhausting. It never ends. It never takes a break. When I'm done giving her insulin, I think of when the next finger prick needs to be - and if she is having a high blood sugar, do we need to test ketones? Do a site change? IT NEVER ENDS!

I sometimes feel guilty for feeling this way. After all, I'm not the one with Type 1 Diabetes, my daughter is. I can go to the store and not have to give myself insulin, but she never will be able to. She of all people will never get a break. How is that fair?

One thing is for certain. Life ISN'T fair. Ever. I have to remind myself though that when those isolating feelings surround me... I'm not alone. I have my God. And He gives me the strength and the grace to deal with today. Because all I have to do is today. Just today.

A1C going down...

Good news! We went to the Diabetes Clinic yesterday and Alyssa's A1C went from 8.3% to 7.8%! Just goes to show you the pump is working much better than insulin shots.

For those who don't know, here's a definition what A1C is:
a test that measures a person's average blood glucose level over the past 2 to 3 months. Hemoglobin (HEE-mo-glo-bin) is the part of a red blood cell that carries oxygen to the cells and sometimes joins with the glucose in the bloodstream. ...

Her goal for this past visit was to get below 8% (which we did!) and they want to keep her as close to 7% as possible so we keep her healthy long term.

When she was diagnosed she was 13.8%.

A child without diabetes runs around 4.6% on average.

Small victories.

The kids on Easter

Here are pictures of the kids on Easter! I have more when they were dying eggs with me and daddy, so I'll post those later. :)

Easter was wonderful. We dyed eggs on Saturday (Christian thought we were "killing the eggs"), on Sunday morning the kids found their Easter baskets. Alyssa got a new Wii game called "World of Zoo" (she's so into video games, any sort of game really!), a chocolate Easter bunny and some sugarfree gum. Christian got a new Diego toy (he plays make believe with things a lot more than Alyssa does), a chocolate Easter bunny and sugarfree gum. The Easter bunny left them candy in their eggs, except for Alyssa, she got money. The darn Easter bunny though, hid 10 eggs for each of the kids and we could only find 19! That Easter bunny... forgets where he hides his own eggs... sheesh...

Afterwards we headed to church for a wonderful service with Papa Dave and Nana. Papa Roger was unfortunately out of town on business. Afterwards we headed to Nana's house and had a wonderful, big breakfast, watched "The 10 Commandments" and then later in the day we took the kids with Papa Dave to see "How to Train Your Dragon" in 3D. Very good movie!!!

It was a wonderful Easter, and a wonderful celebration of the selfless love of our Lord, sending His son to bridge the gap between Himself and us. Thank God for that.

JDRF Walk Video 2010

Sometimes it's so surprising

We went to Alyssa's 6 year physical at her regular pediatrician today. She's growing like a weed, 51 lbs, 46 1/8" - right on track with where she should be. She's amazing, she's beautiful. She had glucose in her urine which signaled high blood sugar - sure enough, 417 when we pricked her finger. She's been having major highs every day before lunch. Time to call the endocrinologist and make some adjustments.

As we were sitting in the pediatician talking with him - the office where she has gone for her whole life and we've been so many times - grief kind of overtook me and I got emotional. Sometimes I feel like we're living in some kind of nightmare and we're going to wake up sooner or later and Alyssa will have normal blood sugars, she won't have Diabetes anymore and everything will be "normal" again.

Dr. Davies (ped) told us that we need to be more worried about many low blood sugars since they bring seizures, comas and could even bring death; but the high blood sugars are dangerous for the long term affects for Alyssa.

It's like being on a seesaw and having to keep it perfectly level at all the time. But you can't, you can't do it.

It's exhausting and sometimes I look back and go, Oh my gosh... this is my life. This is my daughter's life. This is our reality. And it hurts.

Pumping!

Alyssa got hooked up on a Minimed Medtronic pump on Feb. 9! It's been going great. We've had 3 site failures, but that's to be expected and I think we're learning and we'll get this down. It's SO much better than shots! She can eat much more normally now and it gives me and David a little bit more freedom.

Here's a picture of our Lissy Lou Lou with the pump catheter hooked up!