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…
Prompt:
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.