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Diapers! As in, "it potty training time"! Now, I've never potty trained a child without D, so I have nothing to compare it to, but it's kinda difficult on a whole 'nutha level.
Elise has actually done fantastic when it comes to going pee on the toilet. She actually can do everything by herself, including pulling her underwear and pants down, getting up on the toilet, wiping herself, getting back down, and washing her hands. She's in underwear full-time, except for at nap time and night, and the first thing she asks for when she gets up in the morning is to put on her underwear. My kid is exceptional at this pee-pee stuff.
Except when her BG is high.
And when this becomes a problem is when we're out in public. Like the other night, Fred and I were out with Elise, shopping for a new sofa. On a side note, have you ever done this while pregnant? Don't. Because you will be so tired from dragging your booty around showrooms the size of football stadiums, that you will be tempted to buy the first thing you set said booty down onto. No matter how ugly and floral the pattern may be.
Anyway, as Elise careened around the store, flinging herself onto various furniture types, I kept praying that her tiny, inexperienced bladder wouldn't let loose on anything that was for sale. Or if she did, she choose leather, so we could just wipe it off.
On the other hand, it would have been a fantastic way to test that pricey stain-guard every salesperson kept trying to sell us on.
The reason I was so nervous is that her BG was in the mid 300s due to a weird post-dinner spike.
Then, a few days ago, we were at our local rec center's open gym time. It is so wonderful... a huge, air-conditioned gym with bunches of free-range children mucking about while the Moms and Dads can just sit and relax. They have tricycles, gym mats, giant padded blocks to build forts with... and (gulp) a bounce house. Which Elise spent most of her time in.
I kept a very watchful eye on the house, waiting to see a mass exodus of children spilling out from the opening; screaming that someone had pee-peed in the bounce house and that someone happened to be my poor, little girl who was running around with a BG in the mid-200s.
Thankfully, in both instances, nothing happened. But it still worries me. I don't want Elise to suffer any embarrassment or shame for something she can't really help. She gets upset at herself when it happens at home, and I'm very careful to act like it's okay. But other people don't understand, because they don't know.
So for the next little while, people will probably hear me ask my child is she needs to use the toilet about every 10 minutes or so, and think I'm a little nuts because of it.
But I don't mind. Just another thing on the very loooooong list of what makes D such a pain.
Fred and I have decided not to participate in the trial. Although we really, really, REALLY want to, it's just not the right time for us to sign up for something so intensive.
I spoke with the CDE in charge, and just getting to the part where we would be randomized (meaning we find out which insulin we'd be on), it quite a process; including 3 3-hour office visits where they would take history, draw blood and do some other tests. It just doesn't make sense to go through all that only to back out if we get in the Lantus group.
And as far as not wanting to try Lantus, well, Fred, Elise's endo and I are sort of all in agreement on this one... if it ain't broke, don't fix it. Why would we switch from an insulin that is (for now) working for us, and only having to give three shots per day; to an insulin we are totally unfamiliar with and Elise having to endure at least 4, possibly more shots per day? All we really want to do is what's best for Elise. And I think sticking with what we're doing is what's best. And while I am very sad we don't get to be a part of the study (the total nerd in me was really looking forward to it), I feel confident we've made the right decision for us.
Now my new mission is to find out if our insurance will cover a CGM. I spent almost 3 hours (added up, over the day, not at one time) on the phone with them yesterday; getting transferred from person to person, being put on hold etc., and STILL don't have an answer. FRUSTRATING!
Those of you with little ones that are using a CGM, how did you work around the fact that they're not approved for kids under a certain age?
First I just wanted to thank everyone who responded with their thoughts on my last post. I think I was having another one of my "moments" because we have been so lucky in the past with being able to figure out a BG issue within a day or so. Those who mentioned a growth spurt; I think you're right. Today, Elise has been out of her mind with hunger.
Last night went better, at her 11:00 pm check (when she's usually in the 70s), she was in the low 200s. And she woke up at 113... nice! Besides giving her more carbs at bedtime, we also fed her about 45 minutes before her shot, and gave her the shot about 30 minutes later than usual. Maybe this is the formula we're looking for!
Now, onto the reason for my post. At our endo appointment on Friday, Elise's doctor mentioned a study that they had going on. They're researching the use of CGMs and Lantus for toddlers (I believe they are studying them as two speparate issues). We were invited to take part and given the paperwork. Someone is supposed to call us with more info this week, but we're still very undecided on if we are going to take part.
Here are the perks:
- the use of a FREE CGM for 6 months.
- free insulin (me likey the free).
- being able to help out with diabetes research.
The downsides:
- There are two study groups... those using Lantus, and those using NPH. You cannot chose which group you're in. If we were randomly selected to be in the Lantus group, I think we would have to back out of the study (I don't want to rock the boat right now by changing to a new insulin).
- I'm wondering if it might be a bit too much to take on right now, seeing how I'm seven months pregnant, and we would have to take Elise to special appointments for the study.
So we'll see... we do have the option of signing up and then backing out if we wind up in the Lantus group. Right now we're just waiting to be contacted.
Does anyone who is more experienced at this have some suggestions for what questions we should be asking?
Calling on all my D-Peeps for some help here. Fred and I are stumped beyond belief at a trend of numbers Elise has been having lately. I blame it on my proclamation that we are "freaking rock stars".
Anyway... for the last three days, when we check Elise for her pre-bedtime snack, she's in the mid-300s. We give her a snack and her bedtime NPH, and usually somewhere between 9:30 and 11:00, she falls low. We give her some carbs and she rebounds into the 300s during the night, waking up in the mid-200s. The timeline looks like this:
5:00 pm - shot + dinner. Usual carb ratio.
7:30 pm - bedtime check. In the 300s.
Between 8:00 - 9:00 pm - bedtime snack (15g) and NPH.
Between 9:30 - 11:00 pm - Elise's BG is in the 70s. We give her carbs.
1:30 am - BG in the 300s.
Is it possible that her fast-acting insulin she gets at dinner (diluted Humalog) is peaking 4 - 5 hours after she gets her shot?
Is it the combination of her DH and NPH making her go low (are we giving the two shots too close together, which is approx 3 1/2 hours apart)?
Is the NPH now peaking earlier than it ever has?
Keep in mind, we are doing EVERYTHING the exact same as we have before. Same schedule, same carb ratios, same snack. I just don't get it. The weirder thing is the numbers are pretty much IDENTICAL for the past three nights (for example, last night at 7:30 she was 331 and tonight at 7:30 she was 331... WEIRD).
As far as I've been told, Humalog starts to work in about 20 minutes, peaks around 2 hours, and is gone by hour 4. NPH (in most people, we've found differently with Elise), starts to work in 1 -3 hours, peaks by hours 4 - 9, and is gone in 14 - 20 hours.
So... anybody have any pearls of wisdom for us? We're going to try giving her a few more carbs for her bedtime snack to see what that does to her BG at around the 10:30 mark. Otherwise we're out of ideas.
I never should have opened my big "rock star" mouth.
I wrote this last year for Father's Day, and as hard as I try, I just can't say it any better than I have here.
Dear Freddie,Elise is one lucky and blessed little girl. I know it, one day when she's a bit older; she will know it, and I hope that you know it too.
I
love that, from day one, you jumped into fatherhood with both feet. You had never changed a diaper or fed a baby a bottle before, but it didn't matter. You make being a father look natural and easy. I love that you love to spend time with her, making memories that will stay with her the rest of her life. Your time with her will assure her of how loved she is, and she will grow up knowing what a good man is.
I love that when she is scared or upset, she calls your name too. She knows her Poppa is a great source of comfort, and she can rest just as easy in your arms or mine.
I love that she gets her sweet and out-going personality from you. When I see her going up to kids she doesn't know in a store or playground and chatting with them; there is no doubt that she's your daughter. She loves to be around other people and thrives in those situations.
I love how excited she gets when the front door opening announces that you are home from work for the day. I think every father should be greeted by little shrieks of joy at the end of a long work day.
I love that you find fun in things that most people would view as a chore. You have made bath time and getting ready for bed one of her favourite times of the day. I enjoy listening to the songs you sing and the little rituals you do that are just yours and hers.
I love listening to you speak to her in Portuguese. I think it's wonderful how passionate you are that she learns that part of her heritage. I also love to hear her speak Portuguese too and am blown away at how well she's doing.
I love the man that you are, the husband that you are and the father you have become. I mean it when I say that I couldn't be raising such an amazing little girl without you.
Love,Momma and the Beans
The number is in and it's good. No, it's great. Fred and I are freaking rock stars. Elise's A1C was 6.6. Her endo walked into the room and asked if we were ready to pass out. We didn't faint, but I teared up. Hearing a number like that (after TWO rounds of strep throat and antibiotics) is so worth all the crap we go through.
It's worth every sleepless night.
It's worth every carb we weigh.
It's worth every calculation.
It's worth every moment that we sit and pour over her numbers, trying to figure out how we can do better.
Elise's doc did go over our numbers to make sure that the low A1C wasn't a result of too many low BGs, and was pleased with what she saw.
6.6... oh my. I am so in love with that number that I am going to run off to Vegas and marry it.
Tomorrow is Elise's quarterly endo appointment, and I have no idea what to expect, report card-wise. We've had some great numbers over the last three months, but we've had some ugly highs in the past three or so weeks. Lately, Elise has been swinging all over the place.
Over the past two weeks, we've had to decrease her bedtime insulin twice. Now she's getting a whole unit less than before. And it looks like we need to decrease it again. She can go from the mid 300s at bedtime (8:30), to 88 by 1:00 am, after getting only 2.5 units of NPH* and her uncovered snack of 15g. Shouldn't her insulin needs be increasing because she's growing? Bah, I just don't get it.
Thankfully, we can run all this by her endo tomorrow. Fred and I feel pretty confident in handling any changes by ourselves, but it is nice to have the doctor's advice too.
And hopefully, tomorrow's A1C will reflect all the hard work we've put into Elise's care over the last few months.
*It just occurred to me that I write about Elise being on NPH, but not everybody knows what it is: NPH is an intermediate-acting insulin with a slower onset of action and a longer duration of activity. Sometimes I refer to it as N. In Elise, it usually peaks at around 3 hours, has a second, smaller peak at about 7 hours, and is usually out of her system by 9 hours. Most people hate it, but it works for us. It also means less shots for Elise. If I do use a term you're unfamiliar with, I wrote a post awhile ago called "What Does it all mean, Anyway?" You can find explanations there.
Someone wrote a comment the other day, asking when I was going to post an updated preggo picture of myself. Not wanting to ever deny anyone the privilege of seeing my ever-expanding belly, here you go.
You're welcome.
You'll have to excuse me... I'm having a bit of a moment right now.
As in, I'm freaking out. With a capital FREAKING and a capital OUT.
It dawned on me today that my due date is in exactly 3 months, although the actual day will be a lot sooner because of the fact I have to have a scheduled c-section.
And were are so not ready.
We are not ready in the usual ways; we still need a tonne of various baby accoutrements, there are rooms to rearrange, logistics to figure out... a name for the baby. But that's not what has me in the midst of a panic attack.
What really is scaring me is that we have no plan dealing with what to do with Elise when it's time for this little guys arrival.
The original plan was for my Mom to come and help out. That looks like it might not happen, and unfortunately there is no plan B.
Fred's Mom has offered, and I love her to death, but she has never stayed with us for more than a few days. She has never tested a BG, counted a carb, checked for ketones, or given a shot. It just won't work to have her come is a few days early and receive a crash course on diabetes. It's not fair to her, or to Elise.
Laura and Jessica have offered to help, and again... I love those girls, but they have their own burdens to bear. Plus, they both live about 30 to 45 minutes away from the hospital, and that's just too far away for my peace of mind.
Do I sound like I'm being high maintenance? I've struggled with that, but I think it all boils down to this; Elise has never been away from me for more than about 4 hours. And the first time we're going to be doing this is at a time when I'm going through something very stressful (surgery, birthing a baby etc.). I don't think I need an added stress at that point.
I think what kicked all this panic off was the rough night we had on Friday. It actually started when she woke up from her nap at 42. From there she was 70 at bedtime, and through the night we struggled to keep her above 60. We checked her almost every hour, and no matter how many extra carbs we gave her, she kept falling low. It was a nightmare, and who can handle that but the ones who have been dealing with it for almost two years now?
I hate this disease and how it rules our lives. How I can't even look forward in anticipation to the birth of my son, instead fearing and dreading the day because of how diabetes may interfere.
