The big D & A1c

While no-D day was a lot of fun and we got to learn others things about members of the DOC, it was far from a 'no-D day' off the blogs...actually it was Bryce's endo appointment day. So a very D day! Yet, I waited to blog about it. So here it is....

A1c 7.5 this is the lowest he has ever been since diagnosis (last term was 8.6 and I cried!) so I am thrilled and the endo is thrilled....however, reading about the A1cs of the DOC kiddos, I am going to strive for better. Anyhow, I believe this improvement is due to the fact that Bryce started his Dex cgm (continuous glucose monitor) since that appointment. We have a better understanding of how he reacts to insulin and food and made some major adjustments to basals and insulin to carb ratios. Guess we did good on those adjustments cuz our endo suggested no changes...wow!!!

Asked about testing for thyroid and celiac. Turns out he was tested at diagnosis (almost 2 years ago). I had no idea but he apparently tested positive for one of the celiac markers but negative on the other. Holy cow! I had NO idea....granted, at diagnosis, I was in complete shock and they could have told me he grew extra toes and I wouldn't have processed that. If they even went over these results with me, I wouldn't have had any idea what it meant. Now I know, and now I am freaked out. So our endo ordered to have the lab work done and see how it comes back. Crossing fingers!!!

Since we weren't anticipating a blood draw, we decided to skip school and go get a special treat. Guess what he wanted? Krispy Kreme donuts!!!! OMG, really??

Well, why the heck not? So off to Krispy Kreme for a ghost donut we went. And high bgs to battle the rest of the day!

2010 JDRF Walk to Cure Diabetes

'Bryce's Team: Wipeout Diabetes' had 70 walkers join us on Sunday, Oct. 3rd to support us as we walked to cure diabetes. Final numbers not in but think we raised about $6500. The day started with a pancake breakfast provided by IHOP (talk about filling you up with some fast carbs!) There were lots of fun activity booths and entertainment (not that I saw any of it as I was checking in all our walkers at our tent) After the walk, there was a bbq lunch (hot dogs, chips, and cookies...bring on more empty carbs!!!) then everyone got bracelets to ride all the rides at Oaks Park. We didn't get to stay long because our oldest son had to get to flag football so not many rides for us. Despite the drizzly weather, the event was a huge success with a big turn out (think it was twice as many walkers as last year!) Our team had such a great time. Seeing all the support for all of us dealing with Type 1 is such a heart filling experience.

While this was Bryce's Team, we had 3 other kiddos with type 1 on our team, Gabriella, Kate, & Jules. We also honored a few of our friends and other kiddos with type 1 because we want to find a cure for ALL living with type 1.

Bryce got the craziest balloon hat....he loved it!!

Bryce and his friend Gabriella (also T1)

Bryce and his kindergarten teacher

Getting ready to walk

Big Bro, Jaden, having fun

testing blood sugars before the walk

running with his friends and classmates

Bryce walking hand in hand with his two friends and classmates

Making silly faces in the fun house mirrors

We walk (or run) to find a cure

Bryce and Grace walking

Walking with Noni

All that running, playing, and walking makes a Type 1 LOW!

32!!

Evidence of a LOW

Low blood sugar means Daddy carried him the rest of the walk (good thing we were near the end!)

Jaden talked to Chris Dudley (former Trailblazer basketball player, currently running for governor)

Talking Duck football with Chris Dudley

retest...blood sugars all good!

Bryce and Kate, another T1 from our team

Riding the train with his Mimi, lil bro, and cousin

Bryce's Walk Video 2010

Here it is...finally!

Our Walk is just a few days away on Sunday October 3rd.

We have over 65 walkers registered so far and have raised about $5000 (hoping this video will double that!)

Here is to someday (soon) our kiddos saying "I HAD diabetes"!!

Come on now!!

This morning, I woke up to Dex telling me Bryce was low and going down (82, one arrow down). I had to hunt down some test strips cuz of course we were out from the night of testing so by the time I got back, Dex was saying 68 and down. Tested...117!! Really?!!!

So I decided I was going to keep track of all his discrepancies throughout the day....

7:39a Dex 68 arrow down, meter 117

7:53a Dex 90 double arrow down, meter 119

9:34a Dex HIGH (over 400), meter 385

12:20p Dex 234 slight down arrow, meter 180

12:45p Dex 173 slight down arrow, meter 151

2:00p Dex 235 straight arrow, meter 252 ***closest reading of the day!

3:35p Dex 256 slight down arrow, meter 200

5:43p Dex 191 straight arrow, meter 151

6:23p Dex 120 slight down arrow, meter 167

7:44p Dex 60 double arrow down, meter 119

8:30p Dex 216 double arrow up, meter 150

Boy we tested a lot today! Partially cuz I was double checking what Dex was telling me so I could document it. But also cuz we had gone to the zoo and usually he goes low with all that walking. Think the higher numbers today are from being at the end of the set's life. Anyhow, the point is, I can't trust Dex and I don't know what to do about it.

'Oh'tmeal

Big mistake this morning....

Bryce is very insulin resistant in the morning meaning he needs a lot more insulin to cover the carbs he eats in the morning than any other time of day. This combined with the high carb options that define breakfast will send Bryce's blood sugars skyrocketing. One way we try to combat this is to bolus him at least 15 minutes before he eats so that the insulin has time to start working. Well this morning, I bolused him right before I made a pot of oatmeal. Unfortunately the oatmeal took a LOT longer than I thought it would. By the time he started eating, Dex was screaming LOW. Gave him his milk and his oatmeal, tested a few minutes later to see where he really was since Dex runs about 20 mins behind. 67. Of course Dex says 50 and slow down arrow. Hoping he will raise up enough so I don't have to treat this as a 'low' and that I didn't mess with his numbers for the day. Ugh, so much for being proactive!!!

ack!!

Day Two of Kinder Academy went great. It helped that we skipped breakfast there and fed him at home, plus I went in to bolus him for lunch. I am sure it was close to 90g of pretty much empty carbs as he loaded up with chocolate milk, grapes, granola, and chicken nuggets. I bolused him for 50g, assumed he would be high especially since it is a set change day and it has been scorching hot the past few days so the insulin is probably bad too but I would take care of it later. When he got off the bus an hour later, he was HIGH. Ok, expected that, like I said. Went to get his pump to change the set, and hmmm, what do you know...it wasn't connected! The cannula was completely out and the adhesive was folded over it. Just dangling there! Wonder how long it has been like that. Did it come out before or after I gave his lunch bolus? Is he high because it hasn't kicked in yet or because he didn't get it? I hate being in that position. I should know to check his set more often, especially when he is high. I guess we will never know for sure if he got that bolus, just glad we can correct it.

school anxiety

This week, Bryce is attending "KinderAcademy"....a week of kindergarten to get to know his teacher, classmates, and get used to the school before starting in September with all the big kids.

While it is only a half day, they are serving breakfast and lunch. And this is where my anxiety kicks in. I had met with the school nurse in the Spring and we put together a health plan I felt pretty good about. But he will be in afternoon kindy so food isn't really an issue. This week, it is an issue. I could barely function on Sunday as I thought of having to figure out how it all would be handled. I put together some stuff (glucagon, juice boxes, granola bars, extra pump sets). I keep thinking, "is this enough?" "should he have more snack options?" "do I need to have stuff for the office and the class?" "where will he test?" "where will he keep his meter?" "who is going to take care of all this?" "why can't I breathe?" "I think I am going to throw up!" Talk about an anxiety attack!!!

Of course all of this worry is unnecessary. The office staff is familiar with type 1. They have been taking care of a T1 little girl in 3rd grade. They might not be familiar with the pump and cgm but they know how to spot and treat a low....THAT is really the most important part. Plus I am literally 2 mins from the school and always available on my cell. Ok, breathe!!

So this morning, we bring Bryce to school and stay with him as he goes to the cafeteria with the class. We let him pick out his "breakfast" and cringe at the huge amount of empty carbs he is consuming. I know he will skyrocket and so warn his teacher that Dex will try to freak her out but to ignore him. I end up leaving then coming back for lunch to again see the crazy amount of carbs on his tray and bolus him to the moon. I did walk through the process with the office staff that will be taking care of his D. While I feel it is a no-brainer to bolus with the Ping meter, I realize it is because I do it all day every day. So how much did this lady really comprehend and retain? How much do I really want to give her that responsibility? Especially since it is only for 3 more days. Think I may just pop in and take care of it myself. That way, if there is a problem, it is my fault and I can fix it.

Well, after Day One done, I can breathe a little easier but won't fully relax till this camp is over. Of course that means I have a couple weeks before the real deal starts and maybe another anxiety attack.

crying wolf

My love affair with Dex is not a smooth one. He talks too much and doesn't always tell the truth. I think he just wants attention. And last night, he wanted it while we were trying to sleep...of course! Problem is, you can't just ignore him. What if this time he really means it? Multiple alarms said Bryce was low (we have him set to go off anytime Bryce goes under 90) but upon fingerpoke, he was in the 120s. We did turn down his basal to be sure and we calibrated Dex too. We even had Dex try to get our attention by alarming with a double arrow up, saying Bryce went up to 149 when he was still only 100 (this was in between all the low alarms). I think Dex was trying every trick in the book...and it was working. He cried 'Wolf', and we came running. But by 3am, we decided we were not going to fall for his tricks anymore. Luckily, we didn't have to make that decision. He stayed quiet (and Bryce woke up at 270!! wtf?) Think we are getting less sleep with Dex than we were before. However, because he has caught a couple real lows in the middle of the night that we never would have expected, we will keep him around.

old glucagon

Just looked today and found out our glucagon expired in January! Who knew? Good thing we haven't needed it. One of our CDEs said that he has only had a handful of kids ever need to use it, and they were teenagers who had been drinking. Since I found that out, I haven't been so uptight about keeping it on me (or him) at all times. Guess I was too lax about it that I let the ones we have expire. Will refill it today however....just in case.

**glucagon is an emergency shot that is needed if a diabetic goes so low they become unconscious and are unable to ingest fast acting sugars. it is a hormone that releases sugars from the liver. one should always be within close proximity (much like an epi-pen for someone with servere allergies)

getting crafty

Yesterday I dusted off my sewing machine (and there was a thick layer of dust!!) and made a couple waist packs for Bryce. One for his new cgm and a matching one for his pump.

The cgm pack I made with a clear front cuz I was tired of having to stop him, pull out the cgm to see the bg and graph, then stuff it back in. He doesn't stand still for long so harder than it sounds. Often I was left with a cgm and no kid. With the limited sensor range, this meant no readings.

I am pretty impressed with myself. It was actually really easy to make...if I only had time and didn't have 3 boys demanding my attention every few minutes, I would bust out a ton of these!

So now Bryce had two devices to carry everywhere with him. Luckily, he doesn't seem to mind.

the start of a love/hate relationship

This week we started Bryce on his Dexcom continous glucose monitor (cgm)...

LOVE seeing his blood sugars graphed out

HATE that the receiver has to be within 5 ft of him to pick up the signal (especially since he often forgets to put it back in his pouch so it is often out of range)

LOVE seeing if he is raising or dropping fast (common) or just holding steady (rare)

HATE not being able to look back at actual bg #s at specific times (graph points not detailed)

LOVE not having to test him so often

HATE that it is another device on his small little body (and another thing to carry around)

LOVE that it alarms if he is going low (or high)

HATE that the receiver is not waterproof/water-resistant (it's summer-he's 5!! he LOVES water! and when he is playing in the water, that is when I want to see his bg#s the most)

LOVE that the sensor stays on for 7days -or more if you"trick" it ;-) but I am surprised it even made it 4 days with how much he plays in the water, that the adhesive is still sticking.

HATE that the numbers can be up to 40 pts off (we've noticed this especially after treating a low)

Hurry up and wait

Our Dexcom CGM was actually here when we got home on Friday evening. I could barely wait to rip the box open and hook it up to Bryce. Knowing I had to read the instructions first, I held back. After the boys were in bed, we opened up our new life-saving device and looked at what we had to work with. While I am so excited to see Bryce's numbers charted out and know if he is dropping fast, holding steady, or climbing, and have alarms tell me if he is low or high, I am really nervous about putting in the sensors. The sensor inserter looks like a torture device. Plus you only get 4 in a box (one for each week in the month) so what happens if I do it wrong?

We had an appointment with our CDE scheduled for this week so we will use it as a cgm training session. Hopefully after that appointment (today), we will be "up and sensing"

highs and lows of day camp

Last week was Camp Harlow. 5 days filled with activities like swimming, bumper boats, mini golf, horseback riding, go-karts, rock climbing walls, crafts, songs, games, etc. When my older son went in the past, it was a week at Mimi & Granddaddy's to just have fun. Now that Bryce is old enough to go, there is his diabetes to deal with.

We decided I would go down with the boys and come up with a D-plan after spending the first day at camp with the boys and talking to the nurse. Unfortunately, Bryce's bgs are all over the board. He will be sky high only to drop low 45 mins later or when expecting him to go low, is really climbing. (Boy that CGM we were awaiting approval on would have been great!) Trying to make a simple plan for the counselor/nurse was near impossible because there is nothing SIMPLE about diabetes management. As a D-mom, I do so much guestimating and adjusting on the fly that making a "plan" was a lot harder than I thought. For instance, I might hand him a couple fruit snacks after a bg of 120 an hour before lunch or he may need a full snack (bolused or unbolused) depending on the IOB (insulin on board) and the amount of activity he will be doing and even depending on what it was he had for breakfast! Now how do you write those specifics down? The other issue was lunch time...the nurses station is on the complete opposite side of the camp so for Bryce to get his lunch, bring it to the nurse to be tested and bolused, then go back to his group, lunch time was pretty much over. So basically, it would just be easier on everyone, if I was just there to manage his diabetes....and that is what I ended up doing. A choice that was solidified when they changed nurses mid-week!

This is how it ended up going...my in-laws drove the boys to camp in the morning and tested Bryce, checking his IOB. Then the counselor would check him later in the morning and give him a snack or take him to the nurse depending on his bg. I would come at lunch and take care of his bg/bolusing then get him ready for swimming. (this was a great time for me to just laze by the pool and read) then retest him after swimming, reattach his pump, and give him a snack. I then would take a couple hours and either read or go shopping then come back to bg/bolus for the afternoon snack and take the boys back home to Mimi and Granddaddy's.

Every day we had different issues to deal with. Many lows with rebound highs. A day of highs, probably due to the hot weather killing the insulin. The set change was followed by more lows as the insulin and activity kicked in. I was glad I could be there to take care of all these things so that Bryce could have fun (and my in-laws not have to worry about what to do)

Overall, it was a good week. Bryce had a blast. I was more involved than I originally planned but it was worth that peace of mind.

And... we got a call that our insurance approved the cgm....YAY! Our Dexcom will be waiting for us when we get back. :-)

Dexcom-take me off this roller coaster!

We have been on a roller coaster ride of bg numbers. Bryce will go sky high after breakfast only to crash before lunch. He has huge rebound highs after treating a low (we treat with less than 15g and he gets bolused for his snack after) We have had such a hard time finding any patterns. His a1c was getting higher and we were getting more frustrated. We were testing so much and each time it was a mystery as to what his bg would be (high? low? who knows?!!) So we started looking into getting a CGM (continuous glucose monitor) Seeing a "movie" of his bg levels instead of "pictures" should be so helpful and hopefully will allow us to make changes to Bryce's pump settings so he will be in range more often.

While the boys were at Camp Harlow, we got the call that insurance approved our CGM and will cover it at 90% :D Our Dexcom would arrive after we got back. Woohoo!!! Yippee! Happy Day!