Friday, February 10, 2012


So last night I listened in to a Live Radio thingy put on by #DSMA via Twitter with guest Mike Lawson. It was a great listen, Mike has it going on with Youtube videos and blogs. The night before I joined the scheduled Wednesday night DOC chat via twitter also put on by #DSMA. Great interactions, questions and comments. I have not been very involved in the DOC in the last 5 years (since my first kiddo was diagnosed). I dabbled a bit in the CWD forums and have many FB friends that share diabetes successes and perceived failures but aside from that I havn't been actively involved. I have read popular blogs like Kelly's Sixuntilme, and YDMV but never became a follower or subscribed. I would just check in and see what was being said a couple times a week - or not if it was a busy week.

Early February I got a bug in my bonnet and decided I needed an outlet for my own frustrations, fears, hopes, and funny moments. Thus I started my own blog. Well really it was the third time I started a blog but since I couldn't remember what the logins or user names or even the email address I used to open the other blogs I had to start a third. The other two are simply floating out there in cyberspace. I still have low expectations that many will find my humble little blog and it really doesn't matter if others do as long as it brings me happiness and a sense of calm.

So why the word "Pressure" - well last night during a chat taking place during the live radio I mentioned my meager attempts at blogging. A few folks asked the address and I shared it. Now I feel like I should deliver something. Some humor, inspiration, knowledge, etc. (forgive the fragment) I'm not sure I have much to deliver right now but I have a story - well two stories. Last night Mike Lawson shared his story of diagnosis. Everyone has a story - I have two although they don't really belong to me; they belong to my dear children and they will carry their stories with them for always.

October 2006
I was a part time pre-school teacher at a church. A student in another class was diagnosed with Type 1. I didn't know the student or the parents. I did sign up to make a meal. While making the meal I contemplated including a dessert but thought better of it since it was DIABETES. When I delivered the meal I assured her I didn't include a dessert. The mom smiled and said thank you. That was the end of my involvement.
November 2006
My ds (age 2.5) seemed more moody than he ever was. He was always such a happy go lucky kiddo. He also seemed a tad more thirsty and wanted milk when he used to ask for juice.
December 2006
My ds was sleeping longer and more often and was more cranky than ever.
January 2007
My ds gave up milk and only wanted water demanding it in increasing amounts each day. He fell asleep at weird times and slept long and hard. I admit I was patting myself on the back for having such a healthy child that liked naps, drank water and ate very very well. I was getting frustrated that my ds who was nearly potty trained over the Christmas break had regressed and was having lots of accidents and wetting through 2 pull ups a night. He also complained that his legs hurt (I thought growing pains) and his eyes hurt (although both times he told me this he was in a bubble bath).
February 2007
My ds was still very cranky, very thirsty, very hungry and wetting through pull-ups constantly. On Feb 6th after he had wet himself during a nap I was giving him a bath. He laughed and played in the water and while he did so I thought to myself - "he is so skinny". After the bath I called his doctor and told the appointments person I wanted to bring him in because he just didn't seem right. When they asked how he didn't seem right,  I said he was sleepy and cranky and thought maybe a cold was coming on. The appointment was set for 10am the following day.

That night I googled "excessive thirst and urination". Over 300 thousand pages of diabetes were returned. I was initially concerned but dismissed it since he was only 2 and was skinny.

At 10:15am the doc had him pee in a cup. Moments later she told me that he had sugar in his urine. She gave us a lab order to go get blood work and told us to go on with our day and she would call with the results. I walked down the hall and signed into the lab. I started to get scared. I had both my boys with me (my older son was 4.5), my daughter was in 1st grade so she was at school. I called my husband and told him to come meet me because I was starting to panic. Drawing blood from a scared 2 year old was absolute hell. I made jokes for him, hugged him and smoothed his hair while an all-out assault took place. Then we went to lunch, olive garden. He ate a full lunch portion of fettuccine Alfredo and four breadsticks. At 2pm the doc called and told us to go to the ER.

Do not pass GO, do not collect $200 just get to the ER.

I had to make arrangements for my daughter to go to a friends house then off to the ER. If I thought a simple blood draw was difficult, the multiple IVs were so very worse. I can't recall what they said about his blood sugar levels but I think something over 900. He had massive ketones ( I didn't know what any of it meant). They started him on an insulin drip. 45 minutes later I saw him turn very pale, his eyes sunk back, he was so sweaty. I yelled through the curtains to tell someone something was wrong. It seemed to take forever for anyone to come. I watched my dear boy start to shake but he was too tired to even open his eyes. Finally they came and using a large funky thing tested his blood sugar - 27. I announced - you were wrong he isn't diabetic. The nurse looked at me with a sadness I will never ever forget. They gave him glucose and within  a few moments my boy was back. His color was good, his eyes were back where they should have been and he was laughing.

I was reluctant to leave but I had to feed my older boy and check on my 7 year old. I picked up my daughter, fed both her and my son and then returned to the hospital. My husband and my ds had been moved to a room in the same ward as kids with cancer. (That was a wake up call over the next few days - after all I would get to take my baby boy home) My ds still had IVs in his arm and had been changed into the cutest little hospital gown. He was asleep. It was after 10pm and I needed my other two kiddos home in bed. I again reluctantly left my ds and husband to care for my other two very scared and confused kids.

That night I slept in my dear boys bed. It hadn't been changed during the day and he had wet through his pull up the night before so it smelled of his tee tee - but not a normal tee tee smell - it was sweet. In the few months prior I recalled making jokes with my husband about how my youngest kiddo was my sweetest - even his tee tee and breath smelled sweet. I cried - No I wailed. I hugged his stuffed jaguar (his favorite) and realized he was probably sad not to have baby jaguar - even considered calling the neighbor over at midnight to stay with my other two kids so I could drive baby jaguar to the hospital so my ds could see him when he woke up. I didn't call. I just laid there in a pee soaked bed hugging a stuffed toy and shook while silent tears ran down my face. The next morning I got my other kids ready for school in a fog. Dropped them both off and went to the hospital to find my ds jumping on his hospital bed. He had eaten, he was playing and he was beyond happy to see baby jaguar.

My parents who don't live in our state happened to be arriving that very day for a visit. They came directly to the hospital to collect a house key from me. They would be home to take care of my other two kiddos. For the next 5 days I was taught about diabetes, about finger pokes, insulin doses, carb counting, hypoglycemia and hyperglycemia. They wanted us to check out after 4 days but I wouldn't go. I didn't want to leave the protective bubble we were in with nurses and doctors checking on us. On the fifth day they said we had to leave.

Over the next two weeks I stayed home with my ds. I didn't want to send him back to the mothers day out program at the school where I taught and I didn't want to go back to work. He insisted though. His first day back he walked into his class and told his 2 year old friends to "gather round". He invited them to watch HIM take his blood sugar and they all "ewwwd" when he squeezed out his blood, put it to the strip then licked it off his finger. He has owned diabetes everyday since. We celebrated his 5 year anniversary of D Day on the 7th.

July 2007
We attended CWD FFL conference in Orlando FL. Best time ever!
Me, my husband and my dd all took part in Trial Net. My middle kiddo was 5 and refused to have his blood drawn (remember he witnessed his brothers first blood draw and all the IVs - plus he was 5)
October 2007
We were notified that my dd had tested positive (not a positive thing) for markers (what ever those were). We were told it didn't mean she would develop Diabetes but it increased her chances. We declined the opportunity to take part in any studies. I have regretted that decision for some time but we were only 4 months into the whole D thing and still so scared.
Life went on - we did our best to care for our dear son's diabetes. We held our breath regarding our dd's positive tests.

JUMP WAY AHEAD to April 2009
April 18th my dear husband left with both boys to go cub scout camping. I was nervous since I was the primary diabetes care taker but my husband had his phone and was armed with all necessary diabetes supplies - plus it was only one night. That same morning I took my dd to run an Earth Day 5K. We had run a number of 5Ks together (really walk/run - we didn't do the timed portion - it was for fun and fitness not competition). We hadn't even finished the first mile before she complained her chest hurt. She looked so pale. I summoned a passing golf cart and we got a ride back to the starting line. She had gotten some water was feeling better and her color was back. I feared the flu - a number of kids in her class were out sick.

We went home, both of us napped. Later we went to see a movie and had dinner out. since the boys were out for the night I let her sleep in my bed. She fell asleep quickly but I couldn't sleep. My dh didn't get cell service were they were camping. I was a nervous wreck wondering what my boys night time numbers were. I was still awake watching dumb things on TV at 4am. Between 11pm and 4pm I watched my dd get out of bed to go potty and drink water.

I fell asleep around 4:30 - at 5 I sat bolt up and realized she was diabetic. I sat there telling myself I needed to get the spare meter and test her. I held an argument in my head - I told myself Id wait just two hours - let her sleep - after all it's going to be a long day. For two hours I sat there telling myself I only had one child with D. At 7am I got up and made coffee. I put my cell phone charger in my purse. I tried to call my dh - still no service. At 7:30 my dd came down and asked for breakfast. I asked her to test her blood sugar first and explained she had gone potty many times the night before. She didn't argue - it was normal for me to occasionally test her bg. She was never high in the past, sometimes she was lower than what would be expected of a non-diabetic.

She tested - 5-4-3-2-1 = 254. She stared at me with huge doe eyes. I asked her to wash her hands and retest. 5-4-3-2-1 = 257. She was only 9 and we didn't tolerate expletives but I didn't argue when she said "Shit I have Diabetes". I hugged her and asked her to pack a bag to go to the hospital. I called our Endo's oncall service, told her about the 257 and asked her to meet us at the hospital. Diagnosis confirmed 2 hours later. Ketones were moderate. They wouldn't let my dd eat which made me angry because I knew that to get rid of ketones you need insulin, water and carbs. Her last meal was at 9pm on Saturday - they didn't feed her until 9am on Monday. 36 hours without food. She still had small ketones on Monday morning but by early afternoon they were gone and I suspect they would have been gone earlier had they allowed her to eat. We checked out at 9pm on Monday - after all we didn't need training - been there done that.

She stayed home from school for the week. She wanted to go but I wanted her by me.
She started pumping in August of 2009. She went back to MDI earlier this week - she needed a break from the pump.

Those are our stories. I hope I will only ever have those two stories to tell. Yet the results of my middle child's Trial Net study sit 6 inches from my laptop and even though the type face is all the same on the paper the word "POSITIVE" appears to be in Bold. Again I hold my breath, say prayers, and watch.

Monday, February 6, 2012

Worst A1Cs since diagnosis.

Yup - it's true. I suspected due a few recent infusion site failures, missed corrections, and missed meal boluses for both kiddos that we would indeed have higher A1C's than we did in November. Once you factor in Thanksgiving and Christmas food consumption - time off school resulting in a nearly laissez faire attitude by everyone except the Diabetes Nazi (that's me) - we were bound to have gone up despite my efforts to pre-bolus, increase basals, reduce between meal snacks, etc. both kids were higher - nut just higher but the highest either had been in years.

I try not to take it personally - but how else should I take it? I promise I have and never will judge another parent or patient regarding their kids or their own A1Cs - God knows I wouldn't want to be judged by others but that doesn't mean I will sit by and shrug it off. I will make promises to myself to download meters and pumps weekly - double check that corrections and meal boluses are done promptly and correctly (what was I thinking not following up with my 12 and 7 year old to be sure that they heard me say - "do a correction" "dose for that" over iCarly and Spongebob. Who can compete with Spongbob?) and discourage the spoonfuls of Nutella (I admit it is goo but I don't buy it - my dh does). It isn't that they don't dose for their nutella - it is having them understand that 2 TBSP does not mean a heaping serving size spoon.

On top of the A1C smack to the face my dd has been insisting that she wants to go back to shots and take a break from the pump. Thus we left the endo's office with insulin pens. Lord help me - I feel I am a smart person. I am educated - the state of Texas even says I can teach children. But going back to doing all the math that goes with shots - I can't get my brain to function before 4 cups of Joe in the morning - AND worse - my daughter - who is a math superstar (advanced courses in school) has a difficult time remembering to empty her lunch box everyday after school among other things. I know she can do the math but her remembering to do it is another thing. I know there are lots of adults and kids that do MDI and have fantastic results. Some may do it because using the pump is more costly and not all insurance plans cover it well if at all. Some may not like the idea of being tethered to a pump. I know there are lots of reasons. My daughter tried to sell me on the idea of returning to shots as follows:

Me: "You don't need a snack, you just ate. If you must have a snack can you make it a free snack? All this snacking in between meals can be hard on your body."

DD (yelling - thus caps) "THAT'S WHY I WANT TO GO ON SHOTS!"

Me: "you don't need to yell. We can have a conversation about it without yelling. How will going back to shots stop you from snacking?"

DD "I wouldn't snack if I knew Id have to take a shot."

Me "Why not just choose not to snack now?"

DD "I can snack now because I use the pump. If I didn't have the pump I wouldn't snack and I would get better control."

Me "Your logic is flawed. You can't rely on your insulin therapy method to teach you impulse control and better food choices. Why don't you just make better choices."

DD stomps off and says that I hate her.
The biggest problem here is she has inherited her fathers logic and his lack of will power. ie. If the snacks aren't in the house he won't eat them. Thus - both admit that they have zero impulse control. That will not serve her well as she grows and has to take care of her own D.

At 8:30 pm she received her first Lantus shot in nearly 3 years. It was 10 units and I won't be sleeping tonight at all. It didn't help that we ate Olive Garden tonight and we clearly under counted carbs - she was 410 at 10:30 (3 hours after dinner dose). Thank goodness we used the pump to dose for dinner so at least tonight I could put her BG in the pump to determine her correction dose that I would be giving with the Novalog Pen. I can easily do the math but the who IOB thing is beyond my math skills - at least until I figure out at what rates the RAI breaks down.

Worst Part of today - We got the Trial Net results back regarding my non-diabetic son that agreed to be tested at our local JDRF Walk to Cure Diabetes in October. The results - all positive (and I don't mean positive news). I knew they would be based on random BG tests I have taken from him. Also, on how really fast acting carbs like candy effect his mood. Most of the time his BG numbers were within range. A handful of times he was above normal but not far enough above to check him into the ER. Also his A1C (yes my dear endo has been kind enough to test him for me) has not been above 5.1. Yet here sitting on my desk next to my late night cup of Joe I have a page that clearly indicates that he is at a much higher risk of developing Type 1 than others.

Sometimes I really do wish I was a person that could relax with a glass of wine - I'm not. I'm more of a venti non-fat cinnamon dolce latte with only 3 pumps of syrup and no whip kinda gal.

Saturday, February 4, 2012

Not Enough time in the day or energy in my body.

I started this blog because I wanted a place to share my thoughts and feelings regarding all that goes with being a parent of a child with diabetes. The thing is I'm not ONLY a parent of children with diabetes. I am also just a parent, wife, substitute teacher, volunteer, home maker, pet owner, PTA member, friend and daughter, and sister.
Juggling all my hats isn't always easy but is much the same for all parents with and without children with special needs. A special shout out to all those that fit all the above categories and work full time outside the home. I love what I do and I love my life. I wouldn't change a thing except to one day have a cure for diabetes - I would gladly hang that hat up.

I celebrate success when I stop long enough to notice it. Mostly I feel I am skating by, doing my best but always coming up short. As a parent of children with diabetes I know there is always more to learn. I should be doing more basal testing with the kids to tweak basal rates - a fabulous feature of using a pump. In fact for the last week I have seen near perfect numbers for my dd at the 2 or 3am checks but she wakes up in the low 200's - thus a basal tweak between 3 and 6am should be done. Why haven't I done it - because between the time I wake kids up, feed them breakfast, pack lunches, write carb count notes, get kids off to school, toss in a loud or two of laundry, go to work myself,  run by the grocery store, fix a dinner (usually forgetting to add green veggies), help with homework, fight about showers, spend some time with my dear husband, reply to various emails regarding volunteer work, PTA stuff, clean the toilets, feed the pets, fold laundry (usually never put it away - it sits in baskets at the top of the stairs), check in with my own mom and dad - weekly, wash dishes, etc etc etc - I forget to download the pumps and make adjustments to basal rates, carb ratios, and correction factors. I try at least once in between quarterly endo appointments to download and make corrections rather than waiting for the Endo to suggest them. This too I know I fail at since I know of many parents and patience that download their pumps and meters weekly and some that keep written logbooks. It is knowing of those awesome parents and patients that I slip into the feeling of always being behind the curve.

I read a handful of blogs by parents of cwd or written by Type 1 diabetics themselves. Up till recently I never "subscribed" to any of them or "followed" any of them. I was a casual visitor where I would catch up on a couple weeks worth of posts late at night while waiting on a blood sugar to be in a good range that I felt comfortable going to bed. I would read blogs in which the author would be upset about a blood sugar in the low 200's and I would think - oh good Lord what would the author think of the low 400's my daughter ran for half a day until we figured out a bad site. What would they think of the spikes that the kids get all the time because I am not always around to insist on a dose at least 10 minutes prior to eating - thus they will wait to dose until after they have eaten 60 grams of carbs causing a number in the upper 300s two hours after eating. So my new resolution is to actually subscribe the the blogs/tweets of the people I admire the most in the DOC (diabetes online community) - that way I will get emails when they blog or tweet - thus causing me to be thinking more often about how I can be better with diabetes care and in turn help teach my kids to be better - more diligent at least.

Now if I could just stop time long enough to get a cardio work out in -
Notice there is no entry for exercise. I know I need to exercise. I recently found the power cord for my elliptical (it was lost for nearly 2 years when we replaced the carpet upstairs - I didn't know it was missing all that time because I hadn't even thought to get on the elliptical until Jan 1st hit and the whole New Years Resolution thing kicked in.) The power cord was found almost a month ago but I have yet to get on the elliptical. I just can't figure out when I would get on it. I have friends that go to the gym at 5am and make it home to wake up their kids in time to get them ready for school. That won't be me - I cherish every minute of sleep I can fit in between midnight and 3am and then 3am to 5:30am. Giving up even those 30 minutes between 5 and 5:30 would be torture. I think the negative effects of sleep deprivation would out weigh the positive effects of a cardio workout. I know exercise is important and would lower my stress levels, help me sleep more restfully when I do sleep, and just make me happy. It's just finding that time.

wow what a wall of text - sorry
To Treat or not to Treat

Bedtime ritual in our house:
Both of my dear sons are sent to bed at 8pm on weeknights. The older non-diabetic is allowed a glass of milk and sent to brush teeth and get in bed. The youngest son and T1 is asked to test his BS. If he is above the 150 mark we give insulin. If he is between 100 and 150 we check IOB (Insulin On Board - a nice tool when using an Insulin Pump). If there is no insulin on board he is allowed a small glass of water and sent to brush teeth AND go potty before getting into bed. Our T1 ds has a tendency to wet the bed, normally only when his bs is goes above 180 at night but we encourage him to empty his blatter each night regardless. Now then - when his bs is between 70 and 100 with no IOB I struggle with what exactly to do. Lately I have been reducing his basal (again a pump thing) by 40% over a 4 hour period and not giving him any carbs. That has worked out nicely. Most nights when I do this he stays within a few points of his bedtime sugar over the 4 hours and then creeps up just a little after the four hours. I do the same for my dd. So those that are more experienced - what are your thoughts on this attempt at maintaining good sugars?