Middle of the Night Club

"In the wee dark hours of the morning, when the whole wide world is fast asleep..."

For tonight, at least, we go the go ahead to skip the 12 a.m. bg check and just do 3 a.m. Whew! We'll see what happens tomorrow.

Daniel is not going trick or treating tonight. A combination of conditions -- diabetes, celiac, and just being 14 year old -- come into play. I'm happy and sad at the same time. Funny, last Halloween we were telling Daniel that we thought he was getting a little old to be trick or treating because once your voice starts changing people look at you funny when you say "trick or treat" in bass tones. Daniel said, as I recall, "NO WAY! I'm going to keep on getting candy!!"

Of course, everything has changed. The funny thing is, he's eating more candy than he ever ate before (a little at a time to correct minor lows). So maybe getting a sack-full isn't that important. He always has candy in his pocket.

One of his teachers, who was handing out candy to other students, gave Daniel a package of peanuts instead. Of course, handing out peanuts in school might not be exactly safe these days, but he knew that Daniel did not have a peanut allergy. And they are gluten free. It was a nice gesture.

I have been thinking about how diabetes & celiac touches everything we do now. We have to be obsessive-compulsive to test at the right times, to plan for the day, to figure out meals, to check the ratios & calculations twice before injecting. It's like we are looking at every minute of every day through a new lens, and, perhaps since I'm the mom & deal with these issues one on one more often, I tend to forget that there's a world out there that doesn't even think about carbs, snacks, gluten, and life & death every day. I was in that world just a few months ago, and I guess my head is still spinning. Not as fast as it used to, but enough to make me dizzy some days.

Okay. Time to get the ghosties and goblins ready for Halloween. Daniel's brother & sister are out to get a major haul!!

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Just a Fluke

Daniel's numbers were over 200 again last night. WTF? Tonight I burst into tears in front of him tonight, which I haven't done since the first time I gave him a shot in the hospital. Just because the Lantus really stung tonight, and because I hate it when he hurts. So he hugged me and said, "It's okay, mom. You're not what's hurting me." Which of course just made me cry more.

Thank you my friends,

Thanks everyone for the comments, emails, and words of support. It goes a long way. It's not the getting up twice in the middle of the night that gets to me, it's the inability to fall back asleep again. I think back to when my kids were babies and I was nursing for months around the clock. Was it like this? Did I crumble so easily? I can't remember. And of course, that's one of the things that lack of sleep does to you -- it robs you of your memory.

Our wonderful pen nurse Celia increased the Lantus to 28 last night, and we're adjusting the bolus ratios for every meal every day, depending on what Daniel's bg does. For the first time in FOREVER (what, a week and a half?) he was below 200 all night. Whew! Have we hit the magic number? Of course, today after breakfast he spiked up over 200, which is weird because he has been dropping low during the day. And honestly, if he's going to drop, I'd rather deal with it in the light of day than the fog of night when at least two more brain cells are switched to the ON position.

I've tried to steal a drop of Daniel's blood at night without waking him, but that has happened only twice. For some reason his fingers easily release enough blood at midnight, but are quite stingy at 3 a.m. It's taken 4 or 5 attempts to get one drop. Daniel shares a room with his younger brother, so we swear in whispers and I cringe at the click of the lancet. Dominic talks in his sleep, and I wonder if we are influencing his dreams.

We are certainly influencing mine.

Tired tired tired

I can't think straight. So much to blog about, but with the sleep deprivation I've had a disconnect between brain & fingers. We are testing blood sugars before meals, 2 hours after meals, bed time, 12 midnight, and 3 a.m. For about a week and a half now. Thank goodness Daniel seems to be able to go back to sleep. When his numbers are high, my brain churns.

And then this morning at 3:45, Dominic came in our room saying he had a bad dream. WAAAHHH!!

When the sugars & ratios & overnights are back under control, I'll be back online...

Up and Down Day

Daniel came home from school yesterday and said that he had an up and down day. “Not my blood sugars!” he was quick to explain.

First they had the PSAT test at school. Four hours of testing, he said. Long and boring. Boo! Plus, when he tested his blood sugar it read 350 (!!!) but he thinks that was a mistake because he forgot to change the code on the glucometer. But he was in the middle of the PSAT so he didn’t retest. And his lunch number was in range. Yay!

Then, for all the kids that were on time & completed the test, they had a party in the afternoon. Yay! Excellent! No classes! At the party they served cookies and soda. No diet soda. No other drinks. (Did I mention that at the homecoming dance last weekend there were only regular sodas?) Boo! So Daniel traded in his food tickets for raffle tickets, because there were also raffles being given out. Yay! And then, get this – he won a raffle! Yay! He goes to pick up his prize – and it is a $10.00 certificate to McDonalds. Boo! Not good for the diabetic celiac. So he gave it to a friend.

Later, he realized that this guy in one of his afternoon classes is the student government president. So Daniel pulled him aside & told him about the lack of diet sodas and the fact that he can’t have any. So the prez said yeah, that’s a really good idea (side note: I can’t believe that the constantly dieting teenage girls didn’t complain before this!!!) and he will make change and get diet sodas for the next event. Yay!

And the best yay is that we upped the lantus again last night and the 12 a.m. and the 3 a.m. numbers were finally in range. Hopefully we’ll be able to cut out one of those night time checks soon!

***I'm adding to this post later in the day. I took Daniel to his orthodontist appt. today. While we were waiting & waiting in the crowded room, Daniel felt low, so he tested. He was 68, but felt as though he was dropping so he had a few smarties to raise him up. There was a kid next to Daniel watching the whole thing -- the testing, the discussion with me about how many smarties to have, the counting out of the smarties. I could see in his eyes that he didn't quite understand what was happening, but that it was completely weird that some kid was eating candy right before his ortho appointment!

Phooey

Dominic is sick today. He is supposed to be boarding the school bus right now for a field trip to the pumpkin patch. Instead, he is watching Hot Wheels World Race and drinking hot honey milk.

Usually he sleeps right through Daniel's middle of the night blood sugar tests, but I noticed a couple nights ago that he was tossing and turning. Should have been my first clue.

I'm staring at the screen, my brain vacant and echoing over lack of sleep. We increased the lantus yesterday but the midnight & 3 a.m. numbers still rise over 200. *sigh*

Sleepy Monday

We switched to basal bolus on Thursday after our class. Daniel's target range changed from 70-200 to 70-150. I know the goal is to achieve tight control... and we still have a ways to go.

The first day his numbers were beautiful. After that, the 3:00 a.m. number ran high. So as of last night we need to do a midnight check in addition to the 3:00 a.m. check. YAWN!!

Of my 3 kids, Daniel is the one who slept through the night the soonest and always took good naps (okay, we're talking 14 years ago, but whatever). Who knew that we'd have a second chance at night time visits? :-) Luckily Dominic, in the bunk above, sleeps through the whispers and beeps.

When I first had my kids & I'd nurse them at night, I'd have these dreams of nursing -- and it would get to the point where I didn't know if I was actually in the rocking chair with the baby, or in bed dreaming about it. Sometimes I'd jump out of bed & look for the baby, because I could swear I was just holding him/her... but it was only a dream.

Last night I dreamed I was checking blood sugars. Slept through the first alarm & woke up 45 minutes late. Oy!

Dress Code

Dominic, my youngest, is now six, but we still have a couple of sippy cups that we can't quite get rid of because he likes them. He took one out today and asked to have a cup of milk. "I'll get it," he said, as he lugged the gallon container from the refrigerator.

I said, "Let me pour it please, it's heavy."

"Can I help you pour it, mom?"

"Sure."

So he puts his hand on mine as I pour the milk. I finished, put the cap back on the milk, and walking over the the fridge to put it back I instruct Dominic to "go ahead and put the top on your cup."

"Mom, can I drink it topless?"

*snort*

The Pen

We got the Pen training today. We have joined the basal/bolus world. Just in time too, as Daniel's numbers have been off the charts these past few days, over 300. Is it the Chebe bread mix?

I called to get an appointment for Nora with Daniel's gastroeneterologist. There are no openings through the end of the year. THE END OF THE YEAR!!! *sigh*

*sigh*

Daniel was diagnosed on May 8 this year with diabetes, and in July the celiac diagnosis was confirmed by endoscopy. The gastroenterologist said that celiac runs in families, so we should all be tested. Not that we have to run out and do it RIGHT NOW, but at the next physical, just ask for the test.

I had my physical in August. No celiac. And I'm the one with all the gut issues. I guess I continue to be Ms. IBS with a dose of exhaustion on the side. DH has not been tested, but he can, and always has been able to eat ANYTHING. Spicy food. Eels. All kinds of gluten-filled substances. No gut issues.

Nora had her physical in September. Yesterday morning I hear the phone ringing as I walk in the door after taking Dominic to the bus stop. When I heard that it was the pediatrician, I just, well, constricted a little. A whole body constriction. It was about the celiac blood test. Her endomysial IgA is positive, and her t-TG is a weak positive, at 9. Normal is below 4. Weak positive is between 4 and 10, and above 10 is positive. When Daniel was tested, he was at 70.

I was so sad all day for her. Worried about telling her. She is my "selective eater" (pickypicky)
and she sure loves her bagels pizza french toast sandwiches etc. etc. When I called her up to my room and hugged her and told her what our next steps were, I didn't know that I caught her on a mega homework day, and she was overwhelmed & teary the rest of the night.

I've called for an appointment for Nora with the gastroenterologist. Soon we'll know our next steps. Cooking gluten free for two is easier than cooking gluten free for just one. And we still don't know about Dominic yet. It could be three...

But what runs through my head is, what, if anything, does this mean about diabetes? At this point, she doesn't show the antibodies for diabetes (we had her tested in summer). Does one autoimmune disease automatically lead to another?

Celiac has been all over the news lately. Some people believe that as many as 1 in 100 people have it, and that it is the most underdiagnosed disease. More and more restaurants have gluten-free menus, and there are now a glut of GF cookbooks available. In January I'll have Dominic tested (it will take a skilled phlebotomist to coax blood from that whirlwind), and we'll go on from there. As I tell my kids, there's much more to life than the stuff you put in your stomach.

The New Suit

SHOPPING!

I really hate it. I like to have my list, have my route mapped out, zip through the stores, and badda bing, badda boom, I'm OUTTA THERE with all items on the list crossed off.

Nora and I had rehearsal on Saturday (did I mention yet that I've been cast as a muskrat?). So Matt had to take the boys out shopping to get Daniel something sufficiently dressy so he can officially accept his nomination for Homecoming Duke. I have no idea how many others are nominated. Agh! Matt's idea of shopping seems to be on a par with mine. Zoom in on your target, purchase, LEAVE. I figured he'd have the suit bagged within an hour.

While Matt chased down regal togs, Nora and I sang about the Chesapeake Bay. After rehearsal, we stopped off at Target to pick up a couple of nephew birthday presents. On the way home, my cell phone rings. I figured Matt was wondering where we were! So I said, by way of hello, "I'm on my way home NOW!"

Matt explains to me that he has driven from one end of the county to the other to get this suit. It's being hemmed now. He didn't get the belt yet, or the underwear. But he's done. He will be home after the damn thing is hemmed.

I said, well, since you are still in the store, why not just pick up the underwear?

Matt: I AM DONE.

Oh yeah. Shopping with a teenager and a six year old. And I wasn't there.

HEE HEE HEE HEE!!!

Counting the days...

On Thursday Daniel and I will go back to Children's Hospital to take our basal/bolus class. We'll walk away with our prescription for the pen, and will be off the N and R routine, with its tight schedules and specific carb requirements for meals. Yay! In so many ways it will make life easier.

Back in May when he was diagnosed, I felt like my heart just cracked into pieces. In June the nurses wanted to do a second set of labs on his thyroid and celiac tests, because both of those labs showed elevated levels from when he was first brought into the hospital. When the nurses explained all the "what-ifs" to me (elevated thryoid levels would require a pill every day... elevated celiac would require an endoscopy and, ultimately, a complete change in diet) I prayed, "NO CELIAC! PLEASE!"

That prayer was not answered. Or, as some people note, it was answered with a "no." Hmph.

But you know what? We're making it through every day. Daniel, as I have said before, is an incredible inspiration to me. He is so nonchalant about his routine, and the only time I've seen him truly frustrated is when he pricks his finger two or three times and it's just NOT bleeding that day, even one drop, to get his bg tested. When I think of the things he used to eat and love -- pumpkin muffins, fettucini alfredo, kudos bars, cinnamon buns, and then the fun things like going to a fall festival and stopping by the bake sale booth -- that's the kind of thing that still makes me ache inside for him. However, if he's feeling upset about missing out on these things, he's not showing it. He asks if foods are gluten free, and if they are not, he shrugs his shoulders and says, "oh well, not for me." And he finds what he can have.

I tend to fixate on the gluten-free thing, because it affects so much of what we do. No school lunches, packing food for play dates & other functions, carrying our own treats to birthday parties. It's tough. But I think a lesson to be learned, or at least one that I'm trying to pound into my own brain, is that it is important to focus on the pleasures in life that have nothing to do with food. Time spent talking to friends, exploring new places, disappearing into a wonderful book. Delicious phone calls with best friends, venting and laughing. Moments at the beach in winter, staring at the wild and windy landscape, feeling both incredibly tiny, yet organically attached to the enormous, beautiful world around you. Living in the moment is its own kind of meditation!

And now, back in the real world, I'm going to plan for this weekend and the week ahead. Daniel, a freshman, has been nominated (by whom? we don't know) for Homecoming Duke. You have to be a senior to be King. Ahem. We all know are kids are special. But hey folks... mine could soon be royalty! So we have to go see if his suit fits. And get a tie. And get tickets to the game.

Isn't that exciting?

Mom's overture

My Sister in law sent this to me. Does it sound familiar, moms?

A Reprieve

My daughter is sick today. Some days when she is sick, I am able to wrap her up in blankets, put her in front of a couple of good movies, and go to work for a couple of hours. She calls me every 20 minutes or so, and let's me know how she's doing. We're very close, Nora and I. She's moving steadily on to her teenage years, so I hope and pray this closeness remains. She's my only girl.

Today was not a day I could go to work. Sore throats are one thing, stomach bugs are something else entirely. Sicknesses involving bathroom emergencies require parental attendance.

For now, she's ingested immodium, she's cocooned in blankets and zoning out to The Simpsons, and I'm here with her. With my snuggle bunny. And my laptop. With the piles of laundry that didn't get done this weekend (hey, it was a gorgeous weekend). With a small pile of bills and an unread book and a new recipe for gluten-free bread. All the boys have left the house, to work and to school.

It's quiet. I'll make us some tea and, sickness aside, enjoy our hours together.