Tuesday, May 25, 2010

Question for y'all

Look at me, using y'all! If you gals only knew how Southern I am NOT, it would be hysterically funny.

Question for you Mommas who are using pumps with your kiddos....

Does your morning carb:insulin ration and morning basal for your kid look nothing like the rest of the day?

In other words, does anyone else out there have a kid who needs A LOT of insulin when they wake up and eat breakfast? Grace definitely has dawn phenomena and has blood sugar that rises in the early morning. (When she was on MDI her carb ratio for the morning was 1:10 and that got her through til just before lunch.)

Now that she is pumping, her carb ratio from 6:30 am - 11:30 am is 1:14 and her basal is .45.

I think she needs more basal and a lower I:C ratio, as during her mid-morning check at school, we are seeing numbers like:
251
261
291

Curious as to your kiddos out there - do they need a higher basal rate during the morning hours and a higher carb ratio for breakfast hours?

Thanks everyone!

Friday, May 21, 2010

Tired of the job, but I'm still here....

Apparently you cannot ever give up this job. You cannot give it to someone else, cannot be fired for what you do or say (hey, wouldn't that be nice in a job for real?) and on the other hand, well, you never accumulate vacation time. So little rants about the inconsistencies of the job are to be expected, as well as the unfairness of it all.

For those looking to see how the previous post ended... here is the rest of the day.

3:30 pm - 141
(home from a 45 minute gym class, yeah, she dropped and now I am on the fence - was it the 45 minute aerobic activity or the insulin kicking in? she has 1.2 units of IOB still. hmmmmm.... we shall see. she eats a snack to cover the IOB and i don't cover her for the snack. my fingers are crossed.)

4:30 pm - 93
(let's be frank here, i always want the meter to say 93, it's nirvana to me, so when I actually do get Grace to 93, i do the dance of joy in the kitchen. i make the sound of a homerun hitter hitting it out of the park, grace laughs and laughs at this. she tells me that will be our new secret saying to each other - making a popping sound and hitting the baseball, when we get a near perfect BGL. yes, this is what my life has become.)

5:30 pm - 74 and it's dinner time. and it's pizza.
(did i just strike fear into every D-Mom out there? pizza. for dinner. holy guessing carbfest! i decide to go with my carb-guess of 35 a slice and then portion her dose out into 1.0 unit now and extend 2.0 units over the course of 2 hours. wish me luck.)

8:00 pm - 89
(i believe we have a winner!!! i feel like i should have a ceremony or something. 2 1/2 hours after eating a pizza dinner and we slide into homebase with an 89. the diabetes gods and goddesses must have thought i needed a break after the morning high-fest.)


So, all in all, it wasn't the Pod, which is working just fine. I'm glad I didn't succumb to changing the site. I have tried to be more patient with letting her highs come down and immediately not thinking it's a site issue. Apparently today's high was just that, a REAL time high and climbing and I think the doses I was giving her were just barely touching the surface of the high. I gotta read up on the super bolus for the future.

Thanks everyone for your comments and advice and feedback.
Now if I was a drinking woman, I would be at a bar. But alas, I am not.
Also, no babysitter while I would at the bar. That would be a bad thing, right? Just checking.
So off to bed I go, dreaming of a 93 all night long.....

Tired of the job

Can I just say that it's been one of those days? One where Grace woke up with a great number - 140 -  and all was well with the world. One where it started to stink after Grace told me at 7:30 am that her Pod site itched (it was the 3rd day and time for a change later on today anyway). I changed her site. Now, I don't normally change a site before school. I like to keep an eye on things after a site change. But, I thought, what could go wrong, it will all be fine.

This is exactly how 'fine' it all went down so far today:

10 am check - 205
(what???? but ok, we correct and move on, I'll figure it out later)

12 pm lunch - 217
(ok, I'm not a rocket scientist, but that 10 am correction, did that 'take' at all? we decide to dose her for the high, dose for her carbs at lunch and call it a fluke. this will come to bite me in the a$$ in the following sentence.)

2 pm - gym check - 312
(crap. darn. what-the-you-know-what. plus some choice swear words in the aloneness of my house)

Ok mommies out there - what do we do? She has one hour left in school and has gym. GYM is her FAVORITE class all week. She waits for it each Friday. To miss it is to miss DisneyWorld, to her.

So we dose her through the I-must-have-stopped-working Pod on her upper right thigh. Lotta good that will do her. I might as well had her turn around 3 times, kiss a frog and jump twice. Same effect.

I let her roll to gym class at 312. Yes I did.
She will be home in one hour and I will put my detective hat on, figuring out if it's a bad site or what.

It's been one of those days.

Sunday, May 16, 2010

Dream A Little Dream...





I thought long and hard about this blog today. I want to wish for a cure, I really do. I want to put all my eggs in that basket. But what if I don't have any eggs to put there? You see, all my eggs that wished for a cure for something, wished for a cure for autism for my oldest. The eggs are gone. There is no cure for autism and while I valiantly do hope there is a cure for future generations of children with autism, so they do not suffer as my child has suffered, my daughter still has autism. To cure her would be to dismantle her. So I can wish for a cure for future generations, but it won't do my daughter any good. Unless someone is coming in to rewire her brain and do a complete brain and sensory system and nervous system transplant, well, she will still have autism.

So, do you see how my view on a cure for diabetes might be a wee bit tainted here? And I am sorry if you are reading this and you have all your eggs in the cure basket. I am happy that is your journey and your eggs are where they need to be. I don't want any of you to take your eggs out of your cure baskets, please. I applaud all of you that they are there, in that place. I was there once.

I look around and I see the 'oldest living person with diabetes' hit 80-something. I see young adult women who were diagnosed at the same age as my Grace, who are in their 30's now. They wished for a cure when they were 6 too. And the band plays on, and on and on. It just keeps rolling on. People are living their long lives with diabetes and wishing all the while for a cure. And they told them back in the 1960's and 1970's that a cure is 'just around the corner.' I do believe the journey to that corner has gotten shorter, researchers are closer to actually developing an artificial pancreas, but that is still not a cure. A technological solution, not a biological cure. And that's some of the best researchers on the planet who tell us, well, you know, that artificial pancreas is still about 7-10 years away. Grace will be 18 in 10 years and will have had Type 1 for 12 years by then. And it still might not be a reality to us.

Please don't take this as a cynical mom, who doesn't wish for a cure for our kids. Deep down, way deep down, beyond what I show anyone, I do. But I keep that hidden. It hurts too damn much to wish for it. Hell, it hurts even to write about it.

The eggs.
The basket.

I will walk for JDRF. My family will give money to research how it all starts in the body and how we might, in the future, prevent it.  I will educate people about Type 1. I will make sure my daughter has excellent health care. I will commune with people who get it.

I will tell Grace... That yes, one day, sure honey, one day, they will cure this. When you grow up Grace, I'll bet they will have a cure for Type 1. I'll bet when you are Mommy's age that you might even say you 'had' Type 1, but now you don't. Let's go to that Walk and raise money so they can keep on researching. You might have some device that works like a pancreas, where you don't have to work so hard at keeping your blood sugars stable. It will all be fine honey, it will be. They are working hard at this, so other kiddos don't have to have Type 1.

I will say all that to a 7 year old girl. Because I love her beyond measure.

Maybe there is one egg left in my basket after all.



Saturday, May 15, 2010

Diabetes snapshots



Oh this week has been fun, seeing everyone's blogs and thoughts and ideas. I have learned a lot gals!
All you D-bloggers are so extraordinary. Every single one of you.
To bring this week to a close, here are some snapshots of our life with the D.
Enjoy everyone.





                                        


                                       




                                    


                                              


Friday, May 14, 2010

Let's get moving




Seriously? Cause now, you gals know, Grace is 7.

She does NOT stop moving from the minute she wakes up in the morning til she goes to bed. We don't necessarily build in exercise into her day, cause when you do aerobic activity for say, 12 HOURS, you don't need to build in anything.  You name it, she does it, at full speed.  The girl is, as my mother would say, a 'Whirling Dervish.'

My mother constantly told me that when I was growing up. Now I see what she means.

She swims, all day, in the ocean and the pool....


                                    

climbs mountains and slides back down...

                                     

dances, and dresses, like a rockstar...

                                            
and apparently flies.


                                            


Thursday, May 13, 2010

To carb or not to carb...







Carbs. Oh carbs. I didn't know much about you and your crazy ways before Grace was diagnosed. Now I know way too much about you. How much you are in number, how long you take to make a blood sugar rise, how you convert to sugar, how you react in my daughter's body. It's really more than I ever wanted to know. I love you and I dislike you very much at times.

Grace is a typical 7 year old. She eats what she likes and if she don't like it, she won't eat it. Now don't get me wrong, the girl will practically eat anything, her diet is varied and wide. But she knows what she doesn't like and is very clear about it. Once she has tried it and decided it's not for her, that's it. End of discussion and no turning back. She dutifully tastes them, then makes the final call.

She eats what 7 year olds eat. We count the carbs and we bolus for them. I am lucky that she likes fruits and veggies. Carrots and peanut butter are a favorite snack of her. Apples, oranges, bananas, grapes, strawberries and assorted other fruits are her friends. She happens to like peas too, and corn.

I feel as if I make her world low-carb and deny her all the things that 'non-D' kiddos eat, then I am setting herself up for some serious eating problems later on. I don't want her to be the candy hiding pre-teen. You want the candy, well, bolus for it and know how it will effect your blood sugar. Go ahead, have at it. Let's get the most knowledge we can about all the foods in this world and then make good decisions. But candy is not inherently bad, it's just a food we make a choice about.

You know what? It's like a friend of mine who had a baby the same time I had my first. She swore her child would never watch TV. It was mind-numbing, waste of time, blah, blah, blah, etc.  I remember distinctly her 18 month old and her coming for a visit and that child staring at the TV for more than an hour because he had never seen it before. Gorging on TV. Mine could have cared less, was playing with blocks in the other room. When we say 'never' to our kids, we make some hard lines in the sand. When we learn about everything in moderation, we learn about life and our choices.. For me and for Grace, living with D means that we learn about food and choices. All foods.

Everything in moderation. Every. Thing. And surprisingly, when I present Grace with an array of food to eat, because she has been exposed to it all, she choose wisely. She chooses the fruits, the veggies, the tuna. And she has the cookie too. And she boluses. And all is well in D-land. (And I knocked on wood as I typed that last statement, cause now I jinxed myself...)

Wednesday, May 12, 2010

Our Biggest Supporter



I thought of two separate people/persons who help us out on this journey. And each in their own way.


That's my hubby with our dog. 
Our dog thinks he is smaller than he is, as you can see. 
He also thinks he is a reindeer.



My husband: It might not be this way in your family, but here's the way it rolls in ours. I do most of the diabetic care for Grace. I do the dr. appts., the calls, the drugstore runs, the trips to school, most of the troubleshooting, pack the lunches, buy the food and program the pump. It's just the way it is. Hubby works full time and frankly, this is my full time job now. I fill him in on what's happening. He can take over at any time and will, at any time, take over. He's confident with her care. He does it. I cannot say enough about how he supports me, helps me when I am feeling like I can't do it one more stinkin' day and gives 100% when he is home. I couldn't imagine doing it solo. I applaud him for always having my back and for steppin' straight up to the plate when it's his turn to bat and I am running screaming from the field :0)




The DOC: That's the Diabetic Online Community. That's YOU folks! Those of you who are probably reading this blog, right this very minute. I cannot thank you enough for your words of wisdom, your wit, your gallows humor at times (that leaves me laughing at all this D, when it is SO not funny), your advice, your breadth and width of knowledge of all things D related,  your friendship and your presence in my life.

I don't think I would be sane without you gals, honestly. You might not know this, but when I am feeling like I just cannot do this job as a pancreas, I know that if I go online, one of you will be there with a posting that gets me through... (that's for you Meri) and I realize, hey, my gals are doing it, so can I. You have brightened my life and my world. You make me feel less alone and for that, I am beyond grateful and thankful.

Tuesday, May 11, 2010

Making the low go



My hero



Ah Juicy Juice, sweet nectar of the gods..... It's the fastest and quickest way to get Grace's blood sugar up. 15 grams of  liquid carbs and we get a 40-50 rise in blood sugar. Guaranteed. Sometimes I kiss a box just to say how thankful I am to Juicy Juice. 


Me Want Cookie!



                                     
This, however, is Grace's first choice for bringing up a low. Oh how she loves her cookies! Alas, our lows tend to be at night-time, so I nix this cookie idea. First, it doesn't bring her up fast enough for what she needs. Cause when this girl drops, she drops like rocks in a bucket. Fast. And hard. Second, they get stuck in her teeth, so we are on an endless cycle of 'eat a cookie, brush our teeth.' Ever tried to get a 7 year old to brush their teeth at 1:30 am while looking like a drunk at a bar on last call? Thought so. Ain't pretty and ain't happening. So, while she wants cookies, Momma says no to the night-time cookie bender.


Frosting anyone?






Is it just me or does everyone have a tube of cake frosting in the glove compartment of their cars? Oh, just me, thank you. We do. In both our cars. This is for the LOW of the low. Cause you know me and our luck. We will be somewhere and have to bring up a low with nary a juice or a cookie in sight. I am breaking open the frosting on that occasion, blowing a sky-kiss to Betty Crocker and stuffing some in Grace's cheek so it slides down her throat. Then I probably will take a big squeeze of it myself, just for good measure. Luckily, in 18 months, I haven't had to use this, but do you know how nice it makes me feel to know that's it's there in the car? I thought you did.








Monday, May 10, 2010

A day in the life... with diabetes





May 1, 2010

Grace, age 7

2 am - 278, dosed 1.35u
6 am - 152
8:30 am - 66 (15g juice)
8:45 am - 54g carbs, dosed 2.0 u
10:30 am - 181, dosed .80u
12 pm - 68, 67g carbs, dosed 2.65u
3 pm - 136, 15g carbs,  dosed.60u
4:30 pm - 20g carbs, dosed .80u
5:45 pm - 107
6:45 pm - 89, 30g carbs, dosed 1.50u
8:45 pm - 60 (15g juice)
9:05 pm - 54 (15g juice)
9:20 pm - 42
9:40 pm - 91
10 pm - 67
10:25 pm - 69
11 pm - 133


2 am - .......

Saturday, May 8, 2010

Happy Mother's Day!

To all the D-Mommas out there, and all the non-D Mommas too, for everything that you do, each and every day.
For all the support you give to others.
For all the care you give your child, those with the D and without the D.
For all the friendship you have offered those out here in the DOC.
For being the best Mommas.
Enjoy


Kelly Corrigan, author of The Middle Place and Lift:


Friday, May 7, 2010

Diabetes Blog Week - Who's in?

I've read about the idea of Diabetes Blog week over at Karen's Bitter-Sweet blog. I think it's a great idea and just emailed her and told her that I am in! Who else is going to do it? I know, it's a commitment, like we need another one of those in our lives, but I think it would be great to hear different perspectives on the same topic.

Here is the layout for the week, courtesy of Karen:

Participation is easy.  Below I've listed seven blog topics for next week - just in case you want to start drafting your posts in advance.  Use these topics as a starting point for your post each day and see where it takes you.  Write as much or as little as you like.  There are no right or wrong answers - just read over the topic and start blogging!  I've also included a wild card topic - use that if you find a day when you just can't think of anything to write about the chosen topic.
Monday 5/10 - A day in the life . . . with diabetes. Take us through a quick rundown of an average day and all the ways in which diabetes touches it. Blood tests, site changes, high and low blood sugars, meal planning, anything that comes along. This can be a log of an actual day, or a fictional compilation of pieces from many days.

Tuesday 5/11 – Making the low go. Tell us about your favorite way to treat a low. Juice? Glucose tabs? Secret candy stash? What’s your favorite thing to indulge in when you are low? What do you find brings your blood sugar up fast without spiking it too high?

Wednesday 5/12 – Your Biggest Supporter. Sure, our diabetes care is ultimately up to us and us alone. But it’s important to have someone around to encourage you, cheer you, and even help you when you need it. Today it’s time to gush and brag about your biggest supporter. Is it your spouse or significant other? Your best friend, sibling, parent or child? Maybe it’s your endo or a great CDE? Or perhaps it’s another member of the D-OC who is always there for you? Go ahead, tell them just how much they mean to you!

Thursday 5/13 - To carb or not to carb. Today let’s blog about what we eat. And perhaps what we don’t eat. Some believe a low carb diet is important in diabetes management, while others believe carbs are fine as long as they are counted and bolused for. Which side of the fence do you fall on? What kind of things do you eat for meals and snacks? What foods do you deem bolus-worthy? What other foodie wisdom would you like to share?

Friday 5/14 - Let's get moving. Exercise . . . love it or hate it? Do you have a regular exercise routine? Or do you have trouble finding your exercise motivation? How do you manage your insulin and food to avoid bottoming out during your workout? Today is the day to tell us all about your exercise habits, or lack thereof.

Saturday 5/15 - Diabetes snapshots. Inspired by the Diabetes 365 project, let’s snap a few d-related pictures to share today. Post as many or as few as you’d like. Be creative! Feel free to blog your thoughts on or explanations of your pictures. Or leave out the written words and let the pictures speak for themselves.

Sunday 5/16 - Dream a little dream - life after a cure. To wrap up Diabetes Blog Week, let’s pretend a cure has been found. We are all given a tiny little pill to swallow and *poof* our pancreases are back in working order. No side effects. No more insulin resistance. No more diabetes. Tell us what your life is now like. Or take us through your first day celebrating life without the Big D. Blog about how you imagine you would feel if you no longer were a Person With Diabetes.

Wild card - Blood Sugar Nirvana or Moronic Moment.  (inspired by the lovely Kelly Kunik) Blog about the time you ate a meal that tends to spike you to the moon, but your perfectly calculated and timed bolus kept your blood sugar happy. Or tell us about that time your brain had a little diabetes-blip and you did something you think is “stupid”. (Because chances are, we’ve done it too!!) Go ahead, brag about your triumph or commiserate about your d-blooper. 

Thursday, May 6, 2010

Mom, it's me!!!

Beeeeeeeeeeeeeeeeeeeeeeep!
Beeeeeeeeeeeeeeeeeeeeeeep!
Beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep!

"Grace, do you hear that?"

"What Mom, oh that, yeah, I hear that. It's some kind of high sound, like squealing."

"WHERE is it coming from?"

I walk around the kitchen. Grace walks around the kitchen. The sound gets louder in some areas and softer in some areas. I cannot for the life of me figure out where this high pitched squeal is coming from. I check the obvious places - the oven, the refrigerator, my watch. I look at her old meters on the shelf, pulling my ear in close. Nothing. The sound comes and goes as we both walk around the kitchen.

Grace leaves to sit on the couch in the living room.

"G, the sound is gone from the kitchen now."

"It's out here Mom, the sound is out here now. I still hear it."

"What do you mean G?"

I go out to look. I get closer to her. I lean into her and the Pod on her upper right thigh.
It is squealing.

"MOM, it's ME!!!!"

Wednesday, May 5, 2010

Urgency



That's me.

That's at least how I feel sometimes. And you, oh moms and caretakers of kids with diabetes? You feelin' it? Today was the day I felt it and then some.

G wants to go to diabetes camp in August. The camp is expensive. We need some financial help to send her there. We have three kids at home and I cannot blow the entire summer budget on one child. That isn't fair and it isn't right. Then diabetes takes precedence over everyone and everything and you know what gets built as a result of all that?

Resentment.

And we don't need any of that here, thank you very much.

So, I have to find other ways to get her to camp. And watch out when I am on a mission, cause people get left in the wake. You might be familiar with the feeling 'I have to get this done NOW!' The gut-wrenching feeling that it will all come down like a house of cards should you possibly not get it done.

I have been on this mission though for the past two months TWO. FLIPPIN. MONTHS. If you know me, and dear readers, if you read this blog, you know some of me. I do reach out for help. I like to think that when I see I cannot do it alone, I reach out and say "Hey, you know folks, come on over and lend a hand" but frankly, it's also not my first response to a problem. Maybe it's one of my weaknesses. We all got 'em.

So, it took a lot for me, about two months ago, to fess up and decide that we could not, and should not, pay for all of her camp week ourselves. We just can't. I realize how important it is for her to go and she so desperately wants to go. I know there will be years that we can pay the whole amount, but I also know that this year isn't one of them. So I asked for help.

After countless emails to Rotary Clubs, Lions Club and Charitable Clubs in my area, I was left exactly where I started. With not much of anything. Not one response to my emails and phone messages. And yes, I emailed A LOT. I called A LOT. I stated why she should go, our financial situation, everything. And after a while, that gets embarrassing. I keep asking and asking, with no response. Everyone tells me 'Reach out, people will help' and here I was reaching out, holding my hand out, and there was nothing. It was disheartening in many respects.

So today, two things happened.

1. The Camp director called me and said there was funds available from a source in New York, but he didn't know how much. I was thankful, delighted and heartened again. It lifted me throughout my morning. I have paperwork to do, forms to complete, letters to write and G has to write an essay why she would like to go. (Oh and of course, let me post that gem of an essay when it gets done, it's bound to be good.) There is hope.

2. One of the members of one of the 'Clubs' called me back. He stated he received two emails and a phone call from me. He told me that I stated the name of the Club wrong. He told me I stated I emailed three times when it was only two. If there was anything else wrong, he told me. He also asked me

"Why is there a sense of urgency?"

I about came undone, save for my morning phone call with the Camp director. I would have come undone had he not called. I was in a different place since someone had reached out and finally took my hand that I had been extending now for two months. It took his phone call for me to 'stand in another place.'

Sense of urgency buddy? Are you kidding me? Every day of my life feels like a sense of urgency. To get into this life all that we can, before it's gone. To wake a child up every morning and see that they are still here. To not pick a child up from a low blood sugar and not to spin out of control when the meter says 'HI' to me.

You bet there is a sense of urgency, just below the surface. All the time.

If you look close enough, my hair appears brown on the surface, but if you come close, really close, you will see that my roots are red.

Monday, May 3, 2010

She's got it pretty bad huh?!

Is that what all of your D-Moms out there hear when you tell someone that your young kiddo is using the insulin? Pumping it so to speak? Mainlining the insulin??? Sorry, had to say the last part, it seems that's the way everyone is thinking when you speak to them about Type 1.

Today, a neighbor asked me how Grace was doing. I never know quite how to respond. I want so desperately to say 'Chronic. She's doing chronic these days.' cause that's how I roll and I would find it darkly and strangely humorous to say that to someone. But you know what, that little editor-man in my head, who so cautiously guards my words before I speak them, who saves me heartache and heartbreak, he reviewed this comment gave it a rousing thumbs down.

So, I went with 'Well, she just started an insulin pump last week.' which was met with the said titled response.

"She's got it pretty bad huh?!"

First let me just say that I find it wrong on so many levels to say this to a mom of a child with diabetes. It's like saying - "Gosh, you got a raw deal on the whole diabetes thing, cause there are people who only have a little wee bit of the diabetes and they don't have it as bad as you." or "Wow, she must of - or frankly you as her mother must have done something - really, really bad for her to get the diabetes this bad." or the standard 'Thank God I am not in your shoes!" That's exactly how it feels to me when someone says it. Like, gee, you got the worst case.

So, I am coming up with some other responses to this statement.

"Actually, she has it pretty good. She has insulin to take care of her blood sugars. She has a family who loves her. She is brave and courageous. She has great doctors and good health care. Yeah, she actually has it pretty good."