Olivia had her endo appointment last week. I was dreading her A1c. Her numbers haven't really been out of control (except for the post-bedtime high that seems to arrive every night when her Humalog wears off), but I feel like diabetes management has not been top-of-mind recently. Her A1c had gone up, but only slightly from 6.9 to 7.1. I know that we have been the cause of that and I know that we can get it back down.

I was also dreading the appointment because they were going to take blood this time. We have talked about doing it for the last couple appointments, but it got pushed back each time. They would take three vials for the celiac screen, cholesterol, etc. The last couple of weeks have had O at the doctor a lot for general unpleasantness and I didn't want to put her through this, but I did want it out of the way. She cried a lot but held very still and got it done. We were glad it was over and I almost didn't give it another thought once we got out the door.

But the nurse practitioner called yesterday. Four out of five of the antibodies for celiac were positive. Four out of five. Positive. Celiac disease. And the numbers are so out of whack, so high, that there is almost no question, even though Olivia has been exhibiting no symptoms.

Part of me is just mad as hell. Just pissed. It all just seems so ridiculous. Like a cruel joke.

Another part of me is just trying to get on with it. Accept it and start thinking about how to get Olivia to eat more vegetables.

We still have to see a GI doctor in a couple of weeks and I have a lot of research to do. Apparently we are not supposed to change her diet until she has a biopsy, but since the treatment is the same regardless of whether or not the bowel has been damaged and we hope we have caught this early, I intend to question the need for the procedure.

It feels like I have all these pieces scattered all over - O's diabetes, this celiac panel, immune system issues that have come up for Marc and me - I don't know how to put everything together and keep us all healthy. And in the back of my mind, there is this: what about Sawyer?

I just wanted her to be able to be a normal kid having a normal time at a birthday party. I wanted her to play and not be afraid. I wanted her to not have to worry about what she had eaten or how much insulin she had taken. I wanted to be able to stand around with the other parents as she ran and slid and jumped. But instead I made a rookie mistake and didn't give her enough snack. She ran and played until she started to go low and then she stopped and cried. She spent most of the rest of the party feeling clingy and afraid.

I know that she doesn't get to be a normal kid, but sometimes it just hits harder and hurts more.

Olivia seems to have cut out her nap. A moment of silence please for my sanity.

Our entire routine is undergoing adaptation as a result of the change and so, of course, she is having all kinds of highs and lows. The first couple of nights we gave her a typical dinnertime dose of Humalog, which is meant to cover dinner and a snack, but she was asleep well before snack time and low by 8:00p. My experience has been that if I have to wake her up because of a low not long after she has fallen asleep, it is very hard to get her to eat anything. This played out the first night with a low in the 50s and she absolutely would not eat or drink anything. For the first time, we had to get out the cake icing and squirt it into her mouth. She was livid and I am not using the word lightly. To hold her down and force her to eat like that, when she was so angry...it made me feel like I was violating her in some way. There is so much that she has to tolerate...the sticks and the needles and the constant talk about numbers and not being able to eat what other children are eating...this finally just seemed like too much.

Olivia seems so angry sometimes...spitting mad when I tell her no or am not able to play. I know that a lot of this is just typical toddler behavior, but sometimes I wonder if all that she has to go through plays into it, as well. She's so powerless over it; it's a wonder sometimes that she doesn't flinch everytime we come near her.

Alish pointed out that we are getting into the "what I had for lunch" portion of NaBloPoMo, so rejoice in the fact that there are only two more days.

All the facials in the world could not have kept me from being a stressed-out harridan today. O's bad behavior fed into my bad behavior, repeat. I hate to end a day feeling like I have been a bad parent. Just when I thought I had gotten myself back together, I tried to get a piece of gum that O found in my purse out of her mouth. She, of course, bit the hell out of my finger and I screamed, which completely freaked her out. That's the thing...I can't freak her out. It is not in my job description to lose it. And I hate knowing that my loss of control makes her feel unsteady. That's not fair.

Parenting is a crash course on Discovering Your Un-Resolved Issues.

In other, better news, O's numbers were pretty much gorgeous today.

I detest diabetes sometimes for being so damn unreasonable. What worked yesterday should work today and what works today should work tomorrow. A regimine will be effective for a couple of weeks, and then things just...change. I am always a bit slow to catch up. O has just been stuck in the 200s lately, which means extra shots. I am starting to question what I am doing. Should I not be letting her eat as many carbs as I do? I generally just try to feed her a healthy, well-rounded diet and adjust the insulin as needed, but she seems to have moved into the period of toddlerhood where she wants crackers more than she wants fruit or vegetables. I think what she really needs is a pump. Where do I begin?

I have so very much to be thankful for...my heart feels extremely full this morning.

We had very good news from a very good friend who had a very bad scare.
O continues to adjust and thrive.
We are blessed with family and friends.
Marc is learning and growing at work.
There are exciting things lining up for next year.

The list goes on and on...today, as everyday, I am grateful.

And I am grateful to you guys for being out there, for reading and commenting, and getting excited about bunny slippers and sympathetic about stubborn lows, and offering suggestions and encouragement. It means so much today and everyday.

Happy Thanksgiving...

We had a scary incident the other night that turned out not to have been so scary, except that then again it really might have been scary and it certainly did feel scary at the time and still not really knowing exactly what happened is kind of scary, too.

O's blood sugar had been 90 before she started eating and got two units of Humalog at 4:30p. This was all happening earlier than usual because she got up from her nap early and her grandparents were coming to visit. By 6:00, when the rest of us sat down to eat, she was 109 and didn't want anything else to eat. She had been playing really hard and while two units is fairly standard at that time and she is pretty insulin resistant in the evening, I was starting to worry that maybe she had gotten too much insulin and not enough food.

At 7:00, when she started throwing her toys around and refusing to play with her grandmother (which is extremely unusual), I knew that she was low. Marc and I checked her as she sat on the kitchen counter and the meter said 25.

Twenty-five.

My mind was racing and I thought I was going to vomit. I started talking fast to Marc as I shoved tabs into O's hand.

"This is impossible. How could she still be running around? What's going on? How could she not feel this? This has got to be wrong. What's going on?"

By the time Marc got the meter loaded back up, O had eaten two and a half tabs. Now the meter says 115. "That's more like it," Marc laughed. "Let's check the meter," I said.

With the control solution, the meter says 107, which is within its range.

OK, no big deal, right? It took me about 15 minutes to catch my breath and stop sweating.

Here's the thing, though. Olivia usually reacts quickly and strongly to those tabs. One is enough to send her blood sugar up at least 70 mg/dl. So now I am thinking that she is going to be through the roof with all those tabs and will need another shot. But when I check her half an hour later? 137. And the next time we checked? 287. Then she started to float back down and by morning, she was 67.

What in the world happened?

So I took this picture a week or so ago and was going to upload it to the Word in Your Hand project at Tu Diabetes, but then I thought I had lost it while re-sizing it and I never did it. I found it today, so I'll put it up here. This was a word that we picked for O and it certainly applies, but if I was going to pick a word that sums up my feelings about diabetes, it would be "relentless." Diabetes is a constant in our lives, but there is really nothing constant about it except for the relentlessness.

Today has been a truly lovely day. O and I met with some friends this morning about a possible business venture. Despite the wriggling two-year-old on my lap and the table full of Play-Doh, I felt like a grown-up for a bit and I am really excited about some new possibilities that are appearing on the horizon.

My mom is back in town after a vacation and we had a nice lunch together and filled her in on what she had missed at Halloween.

O and I ran errands with the sunroof open and windows down, listening to Ryan Adams and making bear dance. O sang and made jokes and just generally cracked me up.

Sounds perfect, right? Except...

Inexplicably, she was stuck at 360 all day. I stuck her at breakfast, again at the coffee shop, during lunch with my mom, before naptime. I have given her a ton of insulin today out of brand-new bottles and I haven't been able to budge her. It is crazy-making.

You couldn't tell it for looking at her; she seems to feel fine, but it's there. It's always there and I hate that I can never, EVER, look at her and just see my child. I am always trying to see what it is doing to her. Do her eyes look red? Is the insulin finally working? Too much? Is she rubbing her stomach because it hurts? It's always lurking around somewhere, a constant.

But what can we do but go on with our perfect day? She has let me poke her finger again and again; she's fought me just a little on the shots. And I have tried, when I looked at her, to just see the "brave," instead of the "360."

O had her 3 month endo appointment yesterday and her A1C was 6.9, down from 7.4 last time. She just recently came off a stretch of about 7 weeks where her blood sugars were excellent - we couldn't have screwed things up if we tried. Things have been a little jumpier here lately; she had a scary low of 47 a couple of days ago. (One good thing did come of that: O told me in no uncertain terms that she was low...."BloodSugarI'mHungryIWantMilk!" and I was able to talk with her more about how she feels when she's low and how important it is to tell someone.) She had eaten at least 30 carbs and gotten what has become a pretty standard one unit of Humalog for lunch, but she had also played hard at playgroup (a first!). She just crashed.

Go back and take a look at how many numbers there are in the above paragraph.

I am not a numbers person. I am sludge-like with even the simplest math. And yet, number-crunching, clock-watching, percentage-calculating, carb-counting has become my life.

What was the blood sugar?
Count the carbs.
Calculate a correction.
Draw up the units.
Watch the clock.
Dilute insulin.
What's the date?
Check the A1c.
Repeat daily, weekly, monthly.

I know that there will be even more as she gets older. Cholesterol and blood pressure. Appointments on the calendar with more specialists. More clock-watching and scheduling. Regimented and time-consuming.

It is easy to get caught up in it, to think that the numbers decide whether a day will be good or bad. But really in the short time that we have been dealing with this, I think that we have all done a pretty good job of living beyond the numbers. O makes it easy...those calculations mean nothing to her. She simply wants to feel good, play hard, and eat melba toast every day. My job is to make that happen. And I'll do everything in my power to do so...even math.

I keep sitting down to write and all that comes out is:

IT'S HOT. I'M HOT. BURNING. FLESH HURTS. LUNGS ARE TIRED. TOO HOT.

Perhaps part of the problem is that IT'S HOT. Wait, that's not where I was going with that. I'm not sleeping. Perhaps I will never sleep again. I'm starting to have some serious "Nightmare on Elm Street" type tension about bedtime.

It's not that I can't go to sleep. It's that I can't stay asleep. O's blood sugar fluctuates pretty wildly at night. We might head to bed with a decent blood sugar, then screw it up with a snack and spend the next five hours trying to decide whether or not we should correct. Or she might head to bed with a decent number only to bottom out at 2:00a. I never feel secure in just letting her go through even the better part of the night without checking.

Having Marc get up and do some of the checking is quite frankly not worth my time. He sleeps much more soundly than I do and doesn't wake to an alarm very well. If he is going to get up, nine times out of ten it is going to take me to wake him, and even if I don't have to wake him, I am still going to be awake. What's the point in both of us being up?

Last night O was 90 at 1:00am and would not eat or drink anything, not even a glucose tab, which is usually considered a big treat. I set the alarm for 45 minutes so that I could get up and check her again and give her a snack. The alarm didn't go off and I fell deeply asleep, not waking until 4:00. Of course, by then she had fallen to 51.

Apparently, I can get by on a smaller amount of sleep than I have ever needed or enjoyed in the past. But when I consider this going on and on and on (much like this HEAT we are having. HOT), I get a little antsy. I am afraid of what it is going to do to me over the long haul. Early-onset dementia at the worst and general fogginess and stupidity at best?

I got an email from Alish with the definition of the word "imminent" and a friendly reminder that I had yet to post any photos. Sorry for the suspense...they all sort of look like this:

 

Turns out that painting light blues and greens and white on top of browns and mustards and putty requires many a coat. Marc worked extremely hard for a man on vacation. Everything looks great, and while we aren't quite done, we can get the rest knocked out some weekend soon. I considered the whole thing a success when Marc said the other night, "Wow, it feels really good in here."

In other news, we took O to the endo this week and her A1c has decreased from 7.7 to 7.4 and the nurse practitioner said that this did not look like it had come at the price of too many lows. In fact, I was really surprised again because it feels like she has been high all the time lately. In the evening, the smallest snack sends her soaring and we have been doing a lot of correcting in the middle of the night. I was reading in the forums over at tu diabetes that several parents have mentioned that same situation with their toddlers this summer. I don't know what's going on, but it has me worried. We increased her Levemir again yesterday, but I haven't seen much effect today. In fact, she's been above 200 all day and I have been putting cotton balls in her diapers to try and check for ketones. I got a Precision meter from our endo team so that we can check for ketones in the blood because this whole cotton ball thing is dicey. (So thankful for our nurse practitioner - we have yet to pay for a meter, except for the one that the hospital "gave" us at diagnosis for which they probably charged us a grand.) However, I haven't gotten any strips yet because the pharmacy had to order them. They are $50 for ten and the pharmacist says that insurance won't cover them, despite our prescription, because they are over the counter. As I type this, I realize this is probably not right. Her other strips are OTC and insurance covers them. Right? OK, I'll pick that fight next week.

Update: I meant to include a definition of the A1c for those not familiar and in the process discovered that maybe I don't know exactly what it means. I found this quote on a website: "The A1c test gives a picture of the average amount of glucose in the blood over the last few months." However, my understanding was that it is not so much an average as it is a picture of how often the BG has been high. Anyone? Bernard?

This seems odd...

4:56pm blood glucose 147
8:25pm bg 135
10:55pm bg 140
2:22am bg 144

Is this odd? At first I was afraid something was wrong with the meter, but I suppose this is exactly what we are striving for and I have just never seen it quite like this before. This time period included a snack, dinner, insulin, exercise, and a bedtime snack. I know there were fluctuations; I guess we just happened to catch the numbers around the same point in their ups and downs.

I hate looking at a number and not knowing which direction she is headed, especially at night. Continuous Glucose Monitoring is a miracle and I look forward to the day, though I still don't know if O is ready to move beyond injections. We have not been using the iPorts, because she protested so much and I just haven't had the heart to override her. I can't help feeling that her reaction to a pump would be similar.

How to Miss a Moving Target

11:37pm
"What was she?"
"236. I'm going to give her 0.6."
"Are you sure?"
"She was almost this high last night when we gave her 0.6."
"No, she was in the 300s."
"336. She's 336."
"Oh, shit. I thought you said 236. What happened? She only had a little of the cracker and some milk."
"I'll test her again."
"What was she?"
"300"
"What the hell?"
"I'm going to give her 0.6."

11:13am
"What is she?"
"416"
"What happened?! How much insulin did you give her?
"1.6"
"I thought that it was 2 units in the morning."
"Yesterday she had a small breakfast and by mid-morning she was down to 55. This morning she had a fairly small breakfast, so I cut back to 1.6."
"And now she's in the 400s."
"Now she's in the 400s."

What a difference six weeks make...

This picture was taken the day before Olivia was diagnosed. She didn't feel good and it was not a good day. When I look back at pictures taken over the months leading up to her diagnosis, I am blown away by how ill she looks. She looks happy in this picture, but I know better and it is hard for me to look at it.

Fast forward to mid-March...

This is the picture of a happy girl, a girl who feels better.

We went to the beach for a few days with Marc's family. Olivia loved it all. The sand, the ocean, her cousins, the zoo...She could not have had a better time. And her dad and I did pretty well with first post-diagnosis trip planning and the travel. Everything went well.

And then we came home. And Olivia got sick. Just a cold, but she was miserable and I was freaked. Her blood glucose has been all over the place and she has been spilling ketones. We've been told by the endo and her pediatrician that things are not nearly as bad as they could have been, which is small comfort seeing as how uncomfortable she has been. The cold over the weekend was bad enough, but the high blood sugars these last few days might have been even worse. She woke last night not long after I put her down and could hardly be consoled. We brought her to our room and tried to get the three of us settled in our little double bed (soon to be HISTORY as soon as I can figure out what kind of queen size bed we want. Any opinions on how comfortable we might find a platform bed?). I was at a loss for what to do. I had already given her some short-acting Humalog and was afraid to give her more, as she has been going low each night. She cried and cried, quieting only slightly while I was holding her. She lost it when I left the room to get her water, to turn off a light, to go the bathroom. She was completely out of sorts, screaming one minute for, "Water!" and the next, "No water!" The entire night, she pinched and squeezed my neck and chest and plucked at the skin beneath my fingernails, things she did constantly during the time leading up to her diagnosis.

She seems slightly better this morning, though a couple of bites of breakfast sent her up almost to 300. She wouldn't let me put her down at the park and had no interest in walking with Moose. This is not the child that I have known the last few weeks. We are going to try cutting back on her Levimir in order to combat the nighttime lows and counter the highs with more Humalog. I hate that this means more injections. But hopefully, this will get her back to the singing and dancing she's been doing for the last month.

I am all over the place. In any few minutes that I can grab, I am reading someone's archives to learn about their child's diagnosis and their first weeks at home, or I am talking to someone on the phone, or I am reading Understanding Diabetes. I am slowly learning.

But here's some stuff I didn't learn in the book.

Walgreen's? I get why no one likes that place. Prices? Not so low. Pharmacy staff? Not so helpful.

Test strips? They are about a dollar a piece and when you run out two weeks into a script because you have been testing your newly diagnosed daughter a lot because she is up and then down and then back up and you never really know where she's going to be at any given moment? Insurance won't pay for that next box.

I am also learning that there are important things that no one bothered to mention to us before we left the hospital.

Things like lows at night and how we need to check for them.

Things like checking for ketones when O goes high. (After eating too much during the Great Hot Water Heater Escapade of 2007 on Saturday, she was 283. Should I have checked her for ketones?)

Are we checking her too much? Not enough? Too soon after meals?

Why is it so hard to get her numbers up at night despite having cut way back on her dose and shoving her full of food?

I have so much to learn.