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)

Dr Jekyl & Mr Hyde

We were at the library and no matter how many times I told my son to settle down, he kept running around like a mad man. Eventually the librarian came and told him that running is not allowed in the library. You know what he said to her? "I'm not even running full speed. I was barely jogging" No, this wasn't said with a sweet little voice and a smile. It was the grump face and huffy tone of voice. What a little sh**!

Earlier in the day, he left his favorite stuffed crocodile at my mom's house to "take a bath" He knew he wouldn't have "Claude" back until the next day, but he knew Claude was really dirty. After bedtime, he came in saying how much he missed Claude. We decided he could call Noni and see how Claude was doing. While on the phone, I over heard him tell her that "if Claude gets hungry, you can feed him some of those plastic fish in the playroom. Ok, tell him he can call me if he needs to talk to me." Awwwww, so cute!!!

I often wonder how my little boy can be such a sweetheart and at other moments be a complete monster. Most times, blood sugars are out of whack when we see that monster. Am I just making excuses for his bad behavior or does diabetes really have that big of a role?

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!

trying this again...

It has been quite a while since I posted anything. Been reading lots of blogs from other D-moms lately. They make me cry, they also give me strength. So much goes into being a mom of a child with diabetes. It is so draining. There is so much that we do to try to manage our child's diabetes that people outside our D-world have no idea. I am hoping to get back into (not that I was ever consistent before) blogging about our life with diabetes. Maybe it will educate a few people that don't know what is involved, maybe another D-mom will stumble upon it and know they aren't alone, maybe it will just help my mushy brain to process all this D-stuff swirling around in it. (maybe I won't forget my password so I can actually get on here and do it!)