Diabetes Dad

The search continues

2009-06-16T21:03:00.001-05:00

It's been a while since my last update, I'll try to go back and fill in the blanks if I can remember everything that's happened.

Planning for this year's walk is well underway, and I am co-chair of the media/publicity committee. Myself and the other chair will work to get the audio and video psa (public service announcement) messages put together, and sent off to the local radio and television stations. I'm not quite sure what the theme of this year's video should be, so I'm still mulling it over. Since the audio will be the same as the radio piece, I'll need to hear it first, and go from there.

Meanwhile, we've been fighting high blood sugar for the last several nights, and having to get up in the overnight to do tests. I'm pretty tired from all the broken sleep... Too bad diabetes never sleeps...

yay, our A1C is down again! And we're back in school

2008-08-25T15:00:00.002-05:00

We had our appointment with the doctor today, and Tori's A1C has dropped from 8.7 down to 7.9 since our last visit! Her numbers are looking pretty good for the time being and we aren't making any adjustments to her pump for now. Everything for the moment seems to be on track.

Our next visit is scheduled for December, hopefully we'll get even lower numbers then.

We're also back in school again, and Tori's teacher's father is diabetic, so she's already somewhat familiar with diabetes. I can finally breath that sigh of relief that we are back into better daytime diabetes management.

Waiting to breathe a sigh of relief...

2008-08-19T14:30:00.007-05:00

School starts tomorrow. I can't wait for Tori to get back into school so we know her daytime diabetes management is in good hands again. Summer daycare has been, oh, a little less than optimal in managing her diabetes. There was a teacher there that did pretty decent with it, but when she wasn't there, and after she left to move to greener pastures the staff that remained was not quite up to speed on things... lets just say there were a few missed meal boluses and leave it at that.

Now, her school on the other hand has a full time nurse on staff, a vice principal whose brother is diabetic, and a principal that is absolutely on board and willing to step up and do testing. What more could we ask for in a school?

We didn't ask, but here's what we got anyway:

A nurse who not only trains all staff that will be involved in Tori's daily life at school, but also works with them until they are comfortable with the routine. She's always on top of Tori's care even when the teacher's are handling things well.

A kindergarten teacher who went out of her way, even after being diagnosed with breast cancer herself, to make Tori's first year of school to be not a first year of school for a little girl who was different from the other children, but the first year of school for a little girl like any other little girl. Did she stop there? No! She went out of her way at the end of the school year to personally approach the first grade teacher who she felt would be the best possible candidate to continue Tori's education and diabetes care, and recruit her.

School starts tomorrow. I can't wait for Tori to get back into school...

Second annual diabetes raffle

2008-08-18T13:22:00.006-05:00

Today I'll be posting a forum thread announcing the second annual raffle to be held in Eternal Lands. Last year was tons of fun, this year promises to be even better. My online friends have been nagging at me to get moving and post the thread, so I'm off to get going on it.

Ack! HBA1C climbing

2008-04-18T13:12:00.003-05:00

Today was our visit to the children's hospital, and we got the bad news that Tori's HbA1C is back on the rise. She seems to have been in a growth spurt lately, and her numbers have been high a lot. We've looked for a trend so we can make adjustments, but then the next day she runs normal or low.

Today, again, I really don't like diabetes...

The raffle was a smashing success!

2007-10-14T15:30:00.001-05:00

The raffle turned up $2400 of the $3300 I raised! What a great success it was, and a lot of fun, too. We had so much fun that people added impromptu prizes at the giveaway itself.

It's time to walk again already!

2007-09-26T21:38:00.000-05:00

The walk is a mere 3 weeks away now, and it's time to get busy. We're doing a raffle at work, and I need to get stuff lined up for prizes. So far 2 pair of tickets to upcoming Illini football games in October have been donated, and I'm sure I'll get some local restaurants to kick in a few gift certificates as well.

My personal page is set up at http://main.diabetes.org/goto/tori, please pop over and have a look!

I'm also going to contact Radu aka Entropy the owner/developer of the online game I play, Eternal Lands, an MMORPG with incredible graphics, and an even more incredible user base, and see if he'll allow me to do a contest/raffle for in-game prizes donated by fellow players and myself. I have several wonderful friends that are willing to donate some rather nice prizes for the contest, so here's hoping I will get his blessings and maybe even a prize donation :D

Tori was approved for the pump!

2006-07-12T09:04:00.000-05:00

We got word today that Tori is approved for the pump! We'll be getting her set up very shortly, and I am so excited I can barely contain myself!

We have fought so hard for this day that it somehow seems impossible that it is really going to happen. I don't know any more details, but I had to get out the exciting news!

Corporate Chairperson 2006 Americas Walk for Diabetes

2006-03-21T11:40:00.000-06:00

Yes, I have volunteered again as the chair for the 2006 walk, so the train is now rolling. I've already set up my team for the 2006 walk scheduled October 1st. My personal page can be accessed here

We've already had two meetings, and the committee is every bit as motivated as they were last year. I've started out much earlier this year with contacting local businesses with information about how they can jump in and help out, sponsor individual walkers, or sponsor the walk itself in some form or fashion.

here are some of the steps I outlined in my open letter:

Route signage: place your business name on one or more signs that will map out the course of the walk.

Display tables: your business can lease space for a table to display your products at the registration area of the walk.

Prize giveaways: your business can give away goods or services to walkers that achieve a milestone, or are top in their category, i.e. a free membership at a fitness center for the top dollar earner, or perhaps a gift certificate to the captain of the team with the most members.

Donate: pick a team, or member of a team, and sponsor them. We can also use refreshments, and other goodies at the walk.

Sell Items: we can get you stars to post on the wall, gel bracelets, or magnet ribbons to sell. The proceeds can go back to the coordinators of the walk, a team, or team member.

Volunteer: we can always use more people on the planning committee, and of course we'll need people to help out with the walk. There are plenty of jobs to fill!

Form a team: make your company shine proud with a handsome traveling trophy hanging on your wall for being the top team in a number of various categories.

I'm always open for suggestions on things any of you out there have done at any events in which you've been involved. The more effort we throw at this nasty disease, the sooner we'll find a cure!

I should be sleeping...

2006-01-22T23:48:00.000-06:00

But instead I'm waiting up late to do a retest. There is no logical rhyme or reason in my mind that lets me understand why I'm waiting up late.

After our sequence of lows last week, we adjusted Tori's NPH down by .5 units per dose, or 1 unit per day. We started on Friday, and by lunchtime she was into the 300's. She has been in the 300's all day and night ever since. Well, with the exception of Friday overnight when she was 54 at 2am, 75 at the retest, and 183 at the third retest. Saturday we were high 200's to mid 300's, with a 344 on the overnight.

Today we continued the highs, and at the evening shot we cautioned on the dosage, going with the lower than recommended dosage, and yet somehow we just got an 83 before we went to bed. This was an unscheduled test to guage whether we would need to do another overnight test, so obviously I'll be back up in another two hours to do a 2am test following the results of this retest...

151, I'm going to get some sleep now.

aargh!

2006-01-19T22:21:00.000-06:00

1/19/2006

11:10 am, my cell phone rings, it's Tori's teacher at daycare...

"Hi, Tori was just laying around, complaining about feeling tired, and her face was flushed, so we decided to test," she says.

"Ok... What was her number?"

"She was 104, we know that's a good number, but we're going to take her temperature. Is there anything else you want us to do?"

"Given that she was 38 yesterday at lunch, I'm wondering whether she's headed down, or rebounding from already being down. Why don't you test her again in fifteen minutes, and let's see which way she goes," I instructed.

"Ok, I'll call you back after we test"

Fifteen minutes passed. The cell rang again, she had dropped down to 60, and they had given her three glucose tablets. After a brief discussion, we concluded with the agreement that she would only call if Tori continued to go down.

Another fifteen minutes passed, and yep, you guessed it, the phone rang once again. She had continued to drop and was reading 38! They had given her another 3 glucose tabs, and wanted to know what else to do. I instructed them to keep a close eye on her, and told them I would consult with Kristina and get back to them. Kristina and I discussed contacting Riley's about altering the NPH dosage. We decided there wasn't really anything more we could instruct daycare beyond wait and test again.

I called them back to find out her number had gone up to 128. Whew! We're out of the hole for now.

Fast forward to 2:30 am, we've reduced the evening NPH and need to test Tori overnight for the next three nights. She rings in at 86, technically not low, but at this time of night she should be in the 120-130 range to make it all night. One juice box and fifteen minutes later, we're back up to 114; I'll take it!

Diabetes detective?

2006-01-18T17:00:00.000-06:00

We have a cat that is in the habit of pawing at Tori's door in the middle of the night, which generally wakes me up. Usually I yell at him, and he stops, but occasionally I actually have to stand up out of bed and move towards him in a threatening fashion (ooh, here comes scary ol' dad, I better run ;) to get him to stop.

2:00 am last night I am awakened to the sound of Punky pawing at the door. Yell... nothing, still pawing. Ok, I have to use the bathroom anyway, so I get up, and then, since I'm awake now I decided I better eat some of those Fiesta Cheddar Cheese Cheezits (get your own box), to keep them from going to waste.

As I'm out on the couch happily munching, I hear Tori's door open. Looking down the hall I see her shuffling to the bathroom, figuring Punky woke her up, too. She went to the bathroom, came out to say hi, and shuffled back off to bed. Moments later, she reappeared, and told me she was feeling low, and mentioning that her legs are trembly. Wasting no time getting the meter, we have a reading of 76, not technically that low, but still below our target range, and quite possibly still on the way down. One juice box, 15 minutes, and a retest later reading 104, she heads off to her room, leaving me sitting on the couch pondering whether Punky was detecting her going low, or whether he just wanted in her room. I know of the dogs in service to diabetics, never heard of a cat, but am just so curious now. He doesn't paw at the door every night, just every seemingly random occasion. He's never actually been in her room overnight, and never paws on Toby's door.

I'm tempted to test her the next time he paws at the door to see if she is anywhere near low...

How low can ya go?

2006-01-14T14:05:00.000-06:00

Just another typical saturday. Sleep in until around 7-7:30 and get up for test, breakfast, and go run errands. Tori's morning number rang in at 272, which seems to be fairly common for her in the morning, and the Humalog dose was calculated at .75 units. Our syringes are marked in .5 unit increments so we can get fairly close by hitting in the middle of two marks. The NPH dose for morning is 5 units, and has been for several weeks now.

We ate a full breakfast, got dressed, and hit the road. We had to round up all the loose ends for Toby's birthday party later in the day, and were looking forward to all the excitement coming later in the day. Little did we know that excitement was going to come earlier than anticipated...

12:00 noon, I was getting ready to test Tori, and she was beginning to get a touch whiny (which really isn't unusual for her sometimes). She had just mentioned a few minutes ago while playing with Toby that her legs couldn't hold her up any more, and continued playing, so all seemed normal... until I looked down at the meter and read 28!!! Kristina quickly gave her a glucose tablet, and grabbed a juice box. We took turns holding her while she drank the juice, and kept her from falling asleep, while her eyes rolled and drooped, and she wanted to lay down. I could tell by the tone of Kristina's voice that she was a little bit scared, and I already knew I was on edge. At the moment I didn't care that she was upset with me for keeping her awake, there was no way I was letting her fall asleep. Fifteen minutes, and another test later she was back up to 104.

She has never been this low before, and she had shown absolutely no signs of being low, except maybe in hindsight we could take the comment about the legs as serious. I don't know how low she needs to go to go into a diabetic seizure, but I damn sure don't want to find out!

Fast forward to snack time, where she rang in low again with a 64. This time, given her lunch number I had decided to reduce the dinner insulin, so when it called for 1.74 I opted to go down to 1.5 to avoid any further lows. No dice...

I wondered after the fact whether or not I had given her the shot in an area that had not been thickened by insulin yet. For those of you that aren't aware, insulin injected or infused with a pump causes a condition called lipohypertrophy which causes the insulin to be absorbed more slowly than areas that haven't yet been thickened.

Thanks? giving...

2006-01-06T13:14:00.000-06:00

Have I mentioned in my blog yet that I absolutely hate diabetes? Well, I do!

I haven't written in a few days, life has been very busy getting in my way, and I'm doing the best I can to find any free time at all it seems. Anyhow, in order to try catching up, I'll relate a story from back on Thanksgiving day...

We got in to mom's house about 11pm or so. By the time we got everything carried into the house, and got the kids changed into pajamas it was nearly midnight. Seven hours on the road had taken its toll on me, as well as everyone else, but the kids were wired. They repeatedly needed reminding that it was very late and that they should be sleeping, so it was somewhere near 2am before they finally quieted down and I was able to get to sleep!

6:30am... the children have already decided to wake up. "Please God, tell me its a dream!"

It wasn't. We got up and headed into the living room to turn on cartoons to keep them busy while we figured out what we were doing for breakfast. Three cups of coffee later and I was still in a major fog. So much of a fog that I had used the evening formula to calculate Tori's insulin, and ended up giving her nearly three time the normal morning dose of the fast acting insulin! Kristina normally draws the morning shot, and since Tori has such a small dose anyway, nothing seemed out of the ordinary to me until I saw the look on Kristina's face when I told her the dosage. I realized immediately at that point what I had done.

Cookies for breakfast! Tori took great delight in eating cookies for breakfast as we scrambled to get enough carbs into her to counter the insulin. We ended up getting her to eat about double her normal carbs, and proceeded to begin the testing regimen to make sure she didn't go low.

Low? Not a chance, her sugar spiked up over 500 to around 580, and stayed there until late afternoon before it ever dropped back below 500. Dinner numbers were back to normal range, and the rest of the day seemed pretty normal, but I can't tell you how bad the whole day made me feel, and how much it reinforced my loathing of diabetes.

Carb-insulin chart

2005-11-21T22:54:00.000-06:00

In order to make life easier when figuring out insulin dosages, I put together this spreadsheet in OpenOffice.org Calc, a free, open source office suite that is an extremely capable alternative to the proprietary Microsoft © Office suite. I'm making the spreadsheet publicly available for download in both formats, so users of both suites will be able to use them, however I highly encourage you to check out the OpenOffice.org suite.

Download OpenOffice.org version
Download MS © Office version

Whenever we have a change in her dosages, I just plug in her new numbers, and print. The chart is very easy to use. just plug in your target blood sugar, sensitivity factor, and carbs per unit numbers, and the chart will calculate your carb dose, and corrective dose. It is based on the formula we use for Tori as follows:

corrective dosage units = (blood sugar - target blood sugar) / sensitivity

total dose = carb dose + corrective dose

Hope someone finds it useful...

The 2005 Walk Awards

2005-11-19T23:00:00.000-06:00

I'm a little behind with this entry, but such is life at my house, I'd be behind if I had a head start. Anyhow, we had our awards dinner this last Monday, and after a few battles with scanners, and my most despised software company's imaging software, I got the pictures scanned, resized, and uploaded to my server.

Let's start with the team awards, because if it weren't for everyone collectively, and by that I mean every single participant in the walk itself, we wouldn't have raised the $33,000 some odd dollars that we raised. My team rocked and rolled their way into second place in dollars raised, and yet still was able to raise the highest dollar per walker average.

Kudos to my whole team, and also Ashlen's team who rose to the challenge I laid out at the beginning of the walk to beat my team this year! On the left is the award for the team, and on the right is a picture of most of the team (not everyone was able to show up on walk day).

For my volunteer participation as the corporate chairperson for the 2005 walk I was pleasantly surprised to receive this certificate of appreciation as an award. Fitting, I thought, because I appreciated the opportunity to hopefully make a difference in my daughter's quality of life, as well as the lives of all diabetics ;)

In addition to the wonderful surprise above, I was also awarded the first annual traveling trophy for the top individual fundraiser. My heart and my thanks go out to each and every one of you that helped me bring this jewel home for the first year, and I hope to count on you next year, and every year until the day I can tell my little girl I don't have to give her an insulin injection ever again.

I may not have had the top team this year, but I'm not giving up. Ashlen's team, I'll be back next year to challenge you again! And as for the rest of the teams, the challenge remains for any and all of you to try and outdo me next year.

Bittersweet fellowship

2005-11-14T23:00:00.000-06:00

I got a sad email from one of the Walk committee members Friday (Nov 11). Her sister just returned from an area children's hospital where her three year old son was diagnosed with type I diabetes. Even though she was diagnosed at age ten, she doesn't have the insight of being diabetic at age three, nor the insight of a parent of a three year old.

I told her we would be more than happy to talk with her sister, having
already been in their shoes, and wishing we'd had someone to talk with when we were at that stage.

One of the biggest issues we've had to face was lack of support in our area. I've heard of a support group or two, but they're all for adults from what I've seen. Unfortunately, since children as young as these two (mine and the sister's) are in the minority numberwise, we don't seem to run across many other parents of diabetic children. Believe me when I tell you that we need others to talk with, and compare notes, and stories, and tips. It would even be nice now and again to be able to find out about diabetic-friendly babysitters that other parents have discovered.

Maybe this will be he start of something in our area, time will tell...

Daily numbers

2005-11-12T23:00:00.000-06:00

Here we go, wheeeee...

Going forward, I'll be going on the assumption that the numbers presented are for the standard meals. Unless there is a low, and the need for a retest, or an evening/overnight test, I'm not going to put times for simplicity (time is too short). We are typically so religious with our mealtimes anyway, that they shouldn't vary by much. The pattern will be "meal - bs @ carbs"

B - 278 @ 48
L - 146 @ 40
D - 324 @ 42
S - 125 @ 22 (this is too low for bed @ 8pm)
RE - 63 @ 16 (going low like last night - 8:48pm)
RE - 118 @ 0 (going back up, will test before bed 9:15pm)
RE - 246 @ 0 (now we're rebounding, no need for a 2am test 10:30pm)

Another day almost exactly like yesterday. What gives? There is no indication of anything that should affect our numbers unless the morning NPH is hanging out too long.

daily lottery numbers

2005-11-11T23:49:00.000-06:00

Today's numbers
275 @ 0652
114 @ 1140
268 @ 1732
110 @ 2000
84 @ 2026
110 @ 2055
154 @ 2244

As you can see at 2000 (snack time) Tori's numbers were lower than acceptable (goal is 170) for going to bed (she was also complaining of a pain in her stomach so she could be getting sick, and our numbers will go berserk), so we treated with a juice box, and checked again at 2026 only to find her going lower still. Another treatment with glucose tablets, and the 2055 numbers show she is finally headed in the right direction, although the 110@2055 is still too low, necessitating the check again before going to bed at 2244.

154 @ 2244 is a coin toss on whether to treat or let her go the rest of the night. We're discussing whether to test her again at 0200.

In the beginning...

2005-11-11T09:00:00.000-06:00

In the beginning...

As with all other things, it had to start somewhere. In this case, the date was January 18, 2004, the date we found out Tori had diabetes. Tori is our daughter's name, short for Victoria as you probably would have guessed, and chosen because of our love for the mesmerizing sonic perfection of my favorite siren, Tori Amos. Someday I hope she gets to meet her namesake in person.

Her blood sugar was in the 800 range, and for those of you that don't know, adults with diabetes have a target range of about 80-120, and a child Tori's age should be between 100-200. From what I was told, we were lucky she was able to walk in to the hospital, not be wheeled in on a gurney in a coma.

I only remember bits and pieces of the time we spent in the hospital that week; sleeping on the floor with a couple of pillows, sleeping across three chairs lined up in a row. I call it sleeping, but there really wasn't that much sleeping involved. Waking up every time the nurses came in to check Tori's blood sugar, every time they had to check blood pressure, or get her to pee in a catch basin so they could check ketone levels really took it's toll on my body and mind.

I didn't mourn then; there was too much knowledge to absorb in a short time, learning how to do blood tests, how to count carbohydrates, and how to draw up a syringe full of insulin. And, oh yes, did I mention we also had to learn how to poke holes in our three year old daughter? I didn't mourn because I had heard of diabetes before, and I knew a few people that had diabetes, so I didn't really think much about it. After all, all you have to do is watch out for how much sugar you eat, right? Not to mention I have heard people talk about how “at least diabetes is manageable.”

I didn't know how wrong I was, and very quickly I began to learn how complex our lives had just become...

Diabetes is not about watching out for how much sugar you eat, it is a very delicate balance of counting carbohydrates, testing blood sugar, and calculating how much insulin the body needs. It is a constantly moving target, and the best way I've found to describe the whole process of “management” to anyone is that “It's like driving a car from the back seat, using rubber bands to steer the wheel.”

A Call to Action...

Last year I found out about the American Diabetes Association's "America's Walk for Diabetes," and jumped in full throttle. It was a way to make me feel like I was doing something, that I was somehow helping Tori. I was the top fundraiser in our area raising over $4,000, despite the short time I had between the walk date, and the day I found out about the walk. Additionally my team had the highest dollar per walker average, so as a result I was asked if I would volunteer to serve as the Corporate Chairperson for the 2005 walk, and dutifully I jumped at the opportunity to do something worthwhile and push forward on my quest to help my daughter.

Fast forward...

This year's walk was a smashing success, with over $33,000 raised, and 172 walkers in attendance, versus $21,000 with 75 walkers in 2004. I believe the success can be attributed to the motivated committee I had the pleasure of joining, as well as the media exposure we enjoyed because two of the committee members are employees at a local radio conglomerate of four stations that donated 75 minutes per station of public service announcements. Tori did an interview with one of the committee members who is a dj, and I have mp3's of the edited snippets that played on the radio here:

Time for release...

A few nights ago at the dinner table Tori asked when her diabetes was going to go away, and we explained to her that it wasn't going to go away unless they find a cure. She replied questioningly “when is daddy going to have the cure for my diabetes?” I didn't think as much at the time as I was trying to make her understand that we did the diabetes walk in order to raise money for research, but later when I had time to think, I was thinking of the song “A Mother's Wish” (which to this day I can't hear and keep dry eyes) and mused to myself that there needed to be a song about “a father's wish” when I remembered her line “when is daddy going to have the cure for my diabetes?” and all I could think about was wishing I could fix her. It was at that exact moment in time I decided I needed an outlet for my frustrations, and the Diabetes Dad blog seemed like a good venue.

That's all for now...