First Day on the Pump

We finally made the leap. Mia is on a MiniMed pump, with insulin loaded. Two hours into it today she had a devastating crash, literally almost passing out. Was it the Lantus (long term insulin) still in her system from yesterday morning? Is her Insulin Resistance Ratio to aggressive? Is her Endo team completely incompetent?

Guess well see what happens. Poor kid is going to be tired of me checking her glucose levels so much but until this is figured out I can't take any chances. She's the most important thing in my life, and I have to do everything I can to protect her.

2 Years Old

My dear sweet daughter,

You've been through such a trying 8 months since last December. Perhaps you don't understand why you're getting injections, don't understand why your Mom and Dad can look so upset at times, don't understand why we fidget with your food to get it in line with the proportions appropriate for your needs, and look at us questioningly when you see other children running around with popsicles, candy, and food while thier parents blindly hand them more on demand without so much as a second glance. Perhaps you don't, but I think you do. You're sharp my girl, and have a tenacity and an understanding well beyond your years.

I wish I knew how a low felt, and how a high blood sugar felt. I wish I knew, so I could help you get through it better than giving you juice for your lows, or trying to get you to drink water for your highs.

More than anything I wish I could take this away from you. I would do anything to have this be me dealing with all of this and let you have the carefree existing you deserve.

Above all else though Mia, I know how strong you are. I know how much fun you have with your friends, and with your family. I can see how intelligently you observe things. I'm in awe at how quickly you do understand things. And when you run up to me at the end of the day when I get home from working, I know you love your Mom and I, and I know you know how very much we love you.

Having you in my life is the best thing that has ever happened to me. I do not believe we are predestined for anything, but for all that, I know that I was meant to be your dad. That is the single most important reason for me being here today - to be your father and to every day remind you of how beautiful, intelligent, and wonderful you are.

No matter what we have to go through, and no matter the challenges you face with diabetes or with any other aspect of your life, know that I will always be there for you. Yours is a light destined to shine forever.

Love

Your adoring Dad.

Highs and Lows

No matter how hard we try, it seems like we are either getting highs or lows - its so rare that we ever see our beautiful daughter pushed into a 'normal' range. I have to admit, it feels frustrating, just because she deserves so much better.

When I hear from older diabetics how disorienting a low can feel, how bad it can make you feel for hours afterwards, and how a high is equally uncomfortable, knowing that she, this poor little toddler, is having to go through breaks my heart.

Every parenting book I've ever read talks about how consistency is the best gift you can give your child for helping her feel secure, safe, and taken care of. How much consistency am I providing when I see a 240 mml/dl reading and four hours later she's 50?

I just want the best for her, and some days it feels like I'm failing at providing even a standard baseline for her to operate on.

UPDATE: At our endo appointment, we find her A1C has gone down. I've been told not to put too much faith in this number, but at least it's something that is moving in the right direction. Mia, we love you so much and will do ANYTHING to help you through this. Stay strong little girl.

First Trip Away

So I'm a bit of a mess tonight. Leaving for my first business trip since Mia was diagnosed, and it's rough to think that I'm not going to be around the next few days. That being said, even in a bad situation, Marisa would certainly react better than me, and probably have an easier time without me around if there was one. Dad gets little neurotic.

Forgot, cool links

http://www.childrenwithdiabetes.com/ - Goodsite for anyone wanting to increase their knowledge and connect with other parents, family members, or friends of those who have diabetes.
http://arstechnica.com/news.ars/post/20081228-isciencei-names-top-10-scientific-breakthroughs-of-2008.html - My daily dose of optimism and belief in humanity's ability to conquor this nasty thing - Reprogramming cells to behave differently may have the key to reversing diabetes by making pancreatic exocrine cells behave like beta cells.

First Christmas with Diabetes

What a relief - the holidays are over. We're normally a pretty festive crowd in this house, and we certainly didn't hold back, but Mia was running a fever over the last couple of days. We've been learning more about Diabetes, enough to figure out that for all of the medical advances of the present age a lot is still unknown about the problem.
Mia was not wanting to eat anything during the holidays, so she kept running low. Grouchy, not hungry, and having daytime readings in the 50's to 60's - scary stuff for parents newly exposed to the finer points of the process.
We've now got her feeling better and sleeping well at night - a little readjustment to nap time and a creative menu has kept everyone pretty happy here. The trick it seems (for now, could change) is keeping her active, getting her out to play several times a day, and making sure that she's eating enough. And of course, checking, rechecking, and rechecking the rechecking. Mia has figured out that what was a new interesting routine of having a relatively painless prick is not going away, and she's not happy about it. You can tell she's just fed up, and tired of it, but she generally has a good attitude about it still.
I've found myself in a daily ritual of coming back into the office after working for the day and digging through whatever I can find online. I've been doing a lot of research on pumps, being the ever over analytical guy that I am have developed several databases for tracking glucose levels and carbs, and finally just decided to buy a piece of software built for transferring the information directly from the meter. I will find a way to incorporate gadgets into everything, regardless of the situation. Marisa picked up a great book 'The Everything Parents Guide to Children with Juvenille Diabetes' by Moira McCarthy. A good read - pretty high level, but reassuring and sombering at the same time. This is a serious illness, a life threatening one, and the sad reality of it is that even with great care, it is killing my daughter, reducing her life expectancy by 5-10 years by some estimations. That being said, we're an incredibly stubborn family, and we're up to the task of keeping her levels in check, teaching her how to live a healthy lifestyle, and never taking anything for granted.
As for how we're doing? We're fine. For all the heartache of the last few weeks, and there has been a lot of heartache, we're all still together. When you look further into this condition, and see how quickly things can go wrong in undiagnosed cases, we're just fine with having the changes to our routine. Diagnosed, it's something you may not (today) be able to overcome, but you can not just survive, but thrive. Mia is still a happy kid, playing around, she just gets annoyed with her parents several times a day. Which really is pretty close to normal after all.
Best wishes to everyone, and here's to great new year.

Saturdays

Things are progessing. We're learning more and more about diet, how to balance things, complex carbohydrates as opposed to simple sugars, how to properly administer shots and have somewhat developed a routine of blood sugar testing, eating, and trying to read signs that Mia gives us.

Somehow I had not given an insulin shot to Mia until this morning (granted, today is only the third day since we found out). I was terrified. In fact when I stuck the needle in the first time and she flinched, I pulled it out quickly without injecting. So my poor daughter got stuck twice this morning for what should have been one injection because her Dad was scared of hurting her. I'll be doing the shots for the next few days so I can get used to it and get over my fear of hurting her, but it's absolutely dreadfull business, even knowing it doesn't hurt much.

The glucose tests are actually going much better - she'll squirm mainly because she can't believe someone would have the audicity to think that she could possibly be contained by ANYONE. She's got places to go, people to see, toys to pull around, books to reorganize. While she's very patient with the process, it just better not take too long. She's got a busy schedule.

The diet is very interesting - there's a lot of information out there, and our doctor/nurse team seem intent on dumming it down for us. "Just count carbs!" Okay, so is that simple or complex carbohydrates? How many calories do we need to get in her to help get that weight back that she lost? I have to say that my initial impression of the resources provided to you by your standard health care provider type scenario has been not just lacking, but absurdly limitted. We've turned to books and websites that seem reputable, and figure we'll call our doctor with any questions.

Some very good news today - Mia has balanced out somewhat. The first two nights we had lows reaching into the 60's - last night at 3:00 Am we had a reading of 280 (too high, but not as dangerous as a low). This morning - 190! Before lunch today, 135. We want her somewhere between 100 and 200 (from our research anyway - the initial appointment had NONE of this information).

You'll probably notice that I have not many nice things to say about the health care system and how it's functioning for us. Perhaps this will change, but my initial impression from my first few days of navigating the doctors who won't talk to you on the phone, the nurses who say they're going to call back and don't, the insurance companies that tell you what you can and cannot use to keep your daughter alive, regardless of the $500 a month premium paid to them.

I will say this: If you think the healthcare system in the USofA is not broken, you've never had a loved one with a chronic disease.