Sunday, May 12, 2013

It's Diabetes Blog Week! Share and Don't Share

So here’s the thing…it’s Diabetes blog week.  Each day, we’ve been given a topic to discuss and share our thoughts on the various topics.  You’re right…my blog isn’t about diabetes.   And do I really have the right to blog about it?  After all, we’ve only lived in this world since March.  Do I have anything relevant to say or share? I’m not sure I do.  I read other blogs and participate on a T1D Facebook page and find myself lost in the dialog.  What can I say that hasn’t been said?  I don’t claim to be a great writer or poet or even a deep thinker.  I’m none of that.  Just a mom who does what she has to do to help her baby live and thrive….and prays everyday that I’m doing the right thing.

So why have a chosen to participate?  I’m still asking myself that.  I guess it’s might be because I want to become more comfortable with blogging about my world.  To post anything besides a crafting project and it’s supply list with a few notes about how to complete the project terrifies me.  What’s rolling around the inside of my head isn’t always pretty and most the time very snarky and sassy.  Still, I feel it’s time for some personal growth. (Can’t lie…I’m looking forward to Saturday’s post…that’s right up my alley and back in my comfort zone!...stay tuned)

Yet, I sit here day after day…consumed with my baby and her needs…feeling somewhat disconnected from the world…wondering when the next bomb will be dropped on my sweet child…. feeling that maybe I do have something to say and something other people need to hear.  Just maybe.

I admit that my experience is very limited but that it’s also very unique.  You see, my sweets is blessed with an extra love chromosome….aka Downs Syndrome.  She has already dealt with several health issues from the moment she was born…diabetes is just another challenge she has been asked to face.  She is also very young to have diabetes…not unheard of…but it’s not that common for a child under 2 to be diagnosed with diabetes.  She was only 13 months old…Not walking…Barely crawling…Not verbal…And so very small.

I also worry that I don’t have much to say because she is honeymooning and her insulin dose is so minuscule that it’s almost normal…not the new normal…just normal….almost.  We give her one itty bitty shot in the morning and then just check her throughout the day….just to track.  We deal with lows and virtually ignore the highs because they really aren’t that high and can usually be explained…so we just wait for it to drop….and check to make sure it does.  I know someday…and it will be sooner than I would like…that will change, but for now, I’m breathing.

So that’s where I stand and that’s where my comments and thoughts come from.  And for someone who feels they have nothing to say, this post is already too long.  Thanks for hanging in there with me.  So…with that said…I shall proceed to the topic of the day…

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

We finally had our first appointment (since leaving the hospital) with our endocrinologist a couple of weeks ago.  I feel it went well and we had a lot of our questions and concerns answered.  I am excited that the doc is on board with putting her on a pump as soon as it’s doable.  But what about a CGM?  I’d kinda like one of those...or a diabetic alert dog...either way.

I would like the doctor to know that when they download her meter, I’m not sure they really know what they are looking at. 

Is that high at bedtime because she had some ice cream before bed or is it just high because she isn’t on enough insulin? 

Is the high in the morning because I gave he a bottle when she woke up at 3am and it’s now peaking 4-5 hours later, or is her honeymoon ending?

Is her low because she isn’t eating enough or is her dose too high?

Did I check her bg too soon after she had something to eat? Or did I wait too long?

I don’t know they understand the challenge of feeding a one year old who already has oral/eating issues.  I would like them to know about that.  She isn’t eating like other kids her age and we see a therapist twice a month for that.  So how can I put her on an eating schedule when she’s only eaten 4.5 carbs (2 oz of formula) for breakfast and it’s not snack time and she wants to eat now? Or maybe she is so hungry and won’t stop eating.  Or maybe she won’t eat at all. And try telling a baby that she can’t have a bottle because it doesn’t fit the schedule.  Yes…on the water or crystal light…but at the risk that she won’t be hungry when it is time for her to eat…assuming she will even drink the water/crystal light which hasn’t happened yet.

So obviously, carb correcting is virtually impossible, as she doesn’t eat enough carbs to even count.  

I’d also like the staff to know that I sure would love it if they said their name (speaking to the nurses) when I call in…so I know who I’m talking to.  Your center is huge and you have a large staff.  It sure would be nice if I knew who I’m talking to.  Maybe I talked to you a few days ago and don’t need to repeat our situation.  Maybe we are just meeting and I need to explain more so you know how to help me.  Maybe I wouldn’t feel so alone. Maybe by just saying your name, I will feel I have a friend who knows me and my baby and you know what I need to hear and what I need to do.  Your name would be nice.


  1. Hi there. My daughter is 6, but like your baby, she was just diagnosed in March, and I am participating too. It's scary and hard isn't it? It's nice to know we're not alone out here. Nice blog. I'm Julie with Girl Glycosylated.

    1. Hi Julie! I saw that! I actually posted on your blog, but it didn't come through. (I will post again) My baby was dx March 9th. So I'm right there with you!

  2. I'm so glad you decided to participate (thanks for joining in) because EACH AND EVERY voice and perspective is so important! Just in this post alone, I learned so much about parenting a baby with diabetes that I never thought about before. (I was diagnosed at age 11, so things were very different for my parents). Thank you so much for sharing, and I look forward to the rest of your posts this week!

  3. Your post is perfect! You do have something to say. Realize that each participant has their own perspective and that diabetes is hardly ever textbook. So many things affect it.

    I was diagnosed at age 9. I had a friend who was diagnosed as an 18 month old baby. Even that difference of a couple months has to be different from what you're dealing with! I can't even imagine what it must be like to do this for a baby. And then to have a baby with Down Syndrome ... Thank you so much for choosing to participate! Your post was so real. I really love it.

    My name is Tristan and I blog at Based on a True Story

  4. I'm glad you're participating - everyone's voice is worth hearing.

  5. I'm glad you are participating. My son will be 14 months tomorrow and while he doesn't have diabetes like I do, I live in fear everyday that he will get it. It's nice to see that there are moms out there who are handling it so well. Thank-you.

    1. The good news for you is that you have experience and knowledge on your side so that if something does happen to your son, you will handle it...probably better than most. You will see on my post Wednesday how I almost lost my baby due to my lack of diabetes knowledge. I don't have anyone in my family who has it and totally missed the signs. You won't. That's the important part.

    2. Don't be too sure. My husband was diagnosed 14 years ago. We were married then, so I was around for that. I absolutely diagnosed him. I told him he had diabetes before he ever went to the doctor he'd lost a lot of weight, and he kept getting up during the night to pee. But we both totally missed it in our daughter. She was in DKA when we got her to the hospital, and so dehydrated it took 7 sticks to get her IV started. I knew she was sick, but somehow diabetes just didn't cross my radar.

  6. hey :) i was diagnosed at 2 (literally month afterwards) and was on the free mixing regime at diagnosis. i am now a healthy (well relatively apart from 7/8 chronic conditions) 18 year old. pump may help with the very small amount of carbs :)

    1. It sure would!!!! The problem is she's still honeymooning and her total dose for the day is not enough to keep the lines of the pump open...1/2 unit at the most. We can get one when she's up to at least 2.5 units. Luckily, her endo thinks I'm doing a great job and is hooking us up with all the prep classes so that when the time comes, we can go on a pump.

  7. What you have to say does matter. I think for a lot of us it helps to process emotions and things that no one else we know are able to understand because they are not going through it. Thank you for posting and I look forward to reading you're other posts from the week. I'm trying to get caught up on everyone.