" Not everything that counts can be counted. Not everything that can be counted counts."
Thursday, January 31, 2008
Ping Ponging Sugars
Today I'm just really really frustrated. Riley's numbers aren't horrible, but they are bouncing around too much.
He's had at least one low every day for the past few days. Usually those lows result in a high number.
I looked over his numbers last night and I made some basal adjustments. We've been using a temp basal a lot at night to keep impending lows at bay.
So, I decreased his basals (just a tad) from 6-9 PM and from 9 PM - 12 AM. (By "just a tad" I mean I decreased them 0.025 each).
Then he ran high all. night. long. That is until 6 o'clock this morning when he was 63. Aggghhhh!!
I'm just so frustrated. I think his running high is probably a result of a low he had yesterday. At morning snack at school he was 56. Does anyone else experience that? It seems like if Riley goes low he might rebound and be high as much as 14-15 hours after the low.
I told Michael I really think the key to getting rid of the highs is to get rid of the lows. But, the lows are scattered about at different times of the day. So, pinpointing where to decrease his basals is not that easy.
It's just frustrating. Whenever his numbers go out of whack like this I feel like I'm racing against the clock to get them back to where they need to be. I worry about what the lows are doing to his development and I worry about what the highs are doing to his kidneys.
I hate to see his sugars bouncing back and forth like a ping-pong ball. A lot of times I feel like this cat. I can't seem to get my paws on those bouncing sugars and just make them stop.
Wednesday, January 30, 2008
Being the parent of a child with diabetes
- late night and early morning fingers sticks
- saying "I'm sorry" as you plunge a needle into your child's flesh
- fear of letting them out of your site to play with friends what if they go low?
- hoping and praying for a cure
- feeling like you always have to be strong but never feeling strong enough
- holding back tears as you see them spill over from your child's eyes
- letting things go that you usually wouldn't isn't having diabetes enough of a punishment?
- being jolted awake in the middle of the night with a fear that something is wrong
- watching every bite of food they eat
- seeing a tubing stick out of their waistband and feeling sad
- trying to teach them how to care for themselves when you prefer to do everything yourself so they won't have to
- holding your breath when they fall down playing sports did he trip or is he low?
- feeling helpless when they have a sugar that just will not come down
- feeling helpless when they are low and listless and all you can do is wait
- feeling guilty because they have your genes
- waking up a groggy child in the middle of the night to drink juice
- praying that they will wake up to drink the juice
- trying to determine if the way your child is acting is part of their personality or a result of their sugars
- fear that they will have complications later in life resulting from the care they are receiving from you now
These are some things that are running through my mind today. Most days I'm OK. But today I'm acutely aware of how much this disease sucks.
Monday, January 28, 2008
Just when I think I'm out, they pull me back in
Last week I was looking back over the pictures and I realized that I missed the project. I was reminded of why I started doing it in the first place, to create awareness of this horribly stupid disease.
I asked Bernard if I could try again and he said yes. I decided I wanted to post 365 pictures in 365 days like I am supposed to. So, right now I'm trying to take more than one picture a day to catch up.
If you would like to join it's not too late. We would be glad to have you in the group.
Friday, January 25, 2008
But, I just can't help myself.
Here's how it works. Leave a comment describing me in one word.
I'm at your mercy.
Tuesday, January 22, 2008
If I were just a few years younger...
I watched The Ellen Degeneres show for the past two days. Even though she ignored my emails I still love her show. I've always thought she was funny. I usually can't watch it as it comes on at 9 AM where I live. But, yesterday was a holiday and today we were delayed for work due to the weather so I watched it.
The Jonas Brothers were on her show yesterday. And they chose one of the girls from the audience to fly with them to a show. They showed that today.
In case you don't know, one of the members of the group, Nick Jonas, has Type 1 diabetes. I had read this somewhere before. But, I've never really paid much attention to them.
When I saw them on the show yesterday I turned up the sound and shushed everyone in the room. I was drawn to them. I searched in vain for any signs of an insulin pump.
It is amazing the bond you can feel from sharing a disease. I don't even share the disease with him. My son does. And, still, I got choked up watching him perform. Because I know. I know how hard it is.
When they were on Ellen today they showed them meeting the lucky girl at a jet at 4:30 in the morning to fly to the show. The whole time all I could think of was what the wacky schedule must do to his sugars. And, while I watched him sing all I could think was "I wonder if he checks his sugar before he steps on stage."
It's weird. I don't even know him. Actually, I didn't even know his name until I googled it for this post. But, yet, I'm proud of him. I'm proud that he's open about his disease and I'm even more proud that it doesn't stop him from living his dream.
Anyway, I thought I'd share this video with you. It is being sung by Nick Jonas. It made me cry.
Friday, January 18, 2008
Funny and not so funny
Here are a few of examples of how some people have found my blog. Somehow I think my post didn't help them one bit.
amoxicillin leg hurt
9 year old has smell after playing
pediatric patient personal sepsis stories
mr jones counting crows song about jim jones from jonestown
his coach is a woman
how do i k
how to handle your stupid son
shaved arm pitsrileys ice cream
pictures of a guy that has blond hair with blue eyes
my son has a terrible attitude what should i do
never ending urinating
But, then, I get some that don't make me chuckle. In fact, they make me very very sad.
help could my son be diabetic
I think my child might have diabetes
mourning stages for child with diabetes
how to know if 2 year old has diabetes
my constant struggle with type 1 diabetes
how to care for the 5 year old diabetic
has my infant got diabetes
how to tell if you have diabetes and you are a teenager
what do i do when my diabetic child collapses
I get a lot of searches along the lines of "how can I tell if my child has diabetes". These always make me shudder. I always hope that whatever hunch these parents are going on is just wrong and their child is OK and doesn't have diabetes. But I know that a lot of times those parents are right. And that makes my heart hurt.
Monday, January 14, 2008
To test or not to test?
Riley has been on the pump for almost 2 years and I have never ever done a basal test.
When Riley started on the pump in March of 2006 his endo looked at his average daily dose and set his basals from that. For the next month or so she had me checking his sugar but even when he was high in between meals not correct. That way I was able to see if his basal was bringing him back down to range or not.
After we got a good basal rate going I have just adjusted here and there. If he has a string of highs around the same time every day I'll increase his basal a bit a couple of hours before the highs start. If he's having lows I do the same except I decrease basals.
Riley started on the pump when he was 3. Dr. M did not want him to miss meals or snacks.
So, I've never had him fast to test his basals. Am I the only one?
I've thought about it before but what's got me thinking about it again is this post by Carey over at dlife. He's wondering about how people are able to skip meals while on the pump.
I don't think Riley could skip a meal. His basals are kind of set up to accommodate snack and meals. Does that even make sense?
I had thought about asking his endo about testing his basals at his appointment last month but then I thought, why really bother? Riley eats at about the same time every day. He eats snack at the same time every day. The only exception is on the weekends he eats breakfast about an hour to an hour and half later and if he does it much later he skips snack and eats a little bit earlier lunch.
But, Carey's post got me thinking. It would be really nice to sleep in later on Saturdays. Or, Riley is going to see a play next month with his class. It is in the morning so the rest of his class will skip snack. I told his teacher it's important that Riley still receive a snack. It would be nice if he didn't have to do that.
Then I think, why mess with what is working? Riley's A1C is 7.3, down from 7.8 in September. And, to be honest, I have been very very pleased with his sugars as of late. He had a few lows a couple of days in a row, but none for the past few days. And, I really can't remember the last time he had a sugar in the 300s and I can only remember a couple in the 200s over the last several days.
The pump is a great tool. I want to get full benefits from it. If I can improve control by making better use of it that's what I want to do.
Is basal testing necessary when what you're doing seems to be working?
I'd like to hear your thoughts on this.
Friday, January 11, 2008
Come out, come out where ever you are
OK, so I saw a post this morning that said today is National Delurk Day.
I wasn't sure if it was true or not ( does it really matter ?). But, I did a google search anyway and I guess today is actually delurk day.
I remember being delighted last year when people let me know they were out there.
So, please delurk. You don't even have to use your real name if you don't want. If you're out there and you're reading let me know.
Wednesday, January 09, 2008
Nice to be amongst the living
I was so new and my emotions were so raw that I was no help to anyone.
I've been blogging a little over two years now. And, maybe I have helped someone out along the way. I hope I have.
But, I do know one person I have helped. Me.
You may have noticed I haven't really blogged about too many diabetes things lately.
Diabetes doesn't affect me like it used to. I don't crumble into a puddle of tears when Riley runs high for several hours. I don't spend every moment watching the clock knowing it's snack or lunch time at school and Riley's teacher might be calling.
Yes there are still the things that nag at me, things like having wonderful sugars during Christmas break only to have them go haywire when he started back to school. Or other people's stupid comments about a disease they know nothing about. Or just the fact that I have to stick him with needles at all. Or the look in his eyes when he's low.
It took me about 26 months to finally be at peace with this disease. I think a lot of that has to do with this blog and the wonderful support I have found by sharing our story with others.
I remember about a year into Riley's diagnosis Dr. M asked "Is diabetes still #1 on your priority list?"
I had to answer yes. It still consumed my thoughts and much of my day. I could not envision a life where diabetes was anything but first place.
If she asked me that question again today I would have to say no. Diabetes is not #1 on my priority list.
You can take that however you want. I take it as a blessing.
Diabetes no longer consumes my thoughts. My thoughts are now consumed with other things like basketball and soccer games, SAT scores and colleges. I finally feel like I can give my full attention to something else other than diabetes.
I know I'll still have days where I curse this disease. I know there are days when it will make me cry. I'm certainly not immune to it.
But, I have finally realized where diabetes fits into my life. I feel like I can focus on actually living again.
For the last two years I haven't been living, I've just been existing.
It's nice to be amongst the living again.
Monday, January 07, 2008
I hope I don't overload you. I'm mainly posting these for family, but I hope you (my extended internet family) enjoy them too.
Candy is always a special treat.
Riley had to test out his Dr. kit on Holden.
And this is the look on Riley's face when he got
Thursday, January 03, 2008
Age at next birthday:
A place I would like to travel:
A favorite place:
A favorite thing:
A favorite food:
A favorite color:
A favorite flower:
City you live in:
Name of a past pet:
A nickname you've had:
Hope for 2008: