We got sensors! So I called and scheduled a training with the Drs office. TJ is currently wearing 2 CGMs a Dexcom G5 and the new Medtronic guardian. I’m curious to see how they compare.
The boys had fun before the training playing on a clinic computer.
I didn’t think to charge the transmitter, so our appointment ended up being over an hour. But we got it figured out. 😁
The rep was impressed that I started up the 670 pump on my own without training-I just put all the settings from the 630 into the 670, no big deal! But she did review and adjust some of his pump settings in addition to getting it all set up for the cgm.
the boys got to play on tablets while I was adjusting pump settings and taking with the rep. 😜 keeps them quiet and happy!
Now that his cgm communicates with his pump, we have a new feature we’ve never tried before: low suspend. Basically, his pump predicts that he’s going to go low, and stops giving him insulin. It already did it today! After we were all done we headed over to the Point Defiance visitors center to turn in coupons for free water bottles (the boys earned them by filling out a field guide on our hikes this summer)
They got their cool new water bottles, and played in the visitor center for awhile.
And then we went to the marina, just a short walk away.
We saw some fish and walked over to where people were lined up fishing, and dropping crab pots. There was a dad, with his kids, there who showed the boys his crab pot, talked about how it worked, and his son even showed the boys the crabs they caught. The boys LOVED it!
While we were learning about crabbing, TJs pump alerted repeatedly because it was time to calibrate the CGM. He ignored it until I told him to clear the alert. 😜 once I dragged them away from the fishermen, and we started driving home, TJ poked and calibrated. It took a LONG time for the pump to calibrate and show a number. In the meantime, dex alerted 150 with 2 straight down arrows. He had just poked at 110, so he must have been dropping fast. I gave the boys each half a pack of fruit snacks and waited to see what happened. About 10 min later the pump alerted and said he was 80 and headed straight down, and started low suspend. At that point dex showed 120 with an up angled arrow, but I just let the pump do its thing. He came back up into range with no spike. And now that he’s eating dinner, he’s on low suspend again (dex shows 82 and steady). He’s having pizza for dinner so it should be an interesting night. 😜 I hope and pray that the guardian is as accurate as I’ve been told and that we are allowed to try out auto mode (the pump adjusts basal insulin all day long, to keep him in range more of the day) soon! If it’s accurate and the algorithms are as good as they say, this could be a lot easier. Unfortunately, it won’t be perfect, there is always a possibility of failure with electronics, and bad pump sites just happen, for no reason, when they are least suspected, but it would be a lot easier-when it works…
A friend convinced me to use her extra ticket and go to my high school reunion. (I wasn't going to go-Tony didn't want to go and I wasn't that interested either) So, I got dressed up, met my hubby at church and then left the boys with him and headed to the reunion
Earlier in the day:
TJ was having high blood sugars all morning, and it was pump site change day. He got a new pump site and dosed for lunch. Then we got in the car to go to church and I gave the boys a fruit & veggie pouch, to hold them over until dinner.
When we got to church, TJ was over 500. That's when I find out he didn't dose for that pouch. 🙄 He dosed for his high and we waited for the insulin to bring him down into range.
After church, I went one way and they went homeward, high blood sugars and all.
Tony stopped and got teriyaki for dinner and then went home to eat it and watch a movie with the boys-Boys night in!
I was at the reunion reconnecting with old friends when I got a text.
I felt bad, tony had to deal with this all alone.
It was nobody's fault, just a part of dealing with technology. His pump site kinked when I inserted it earlier and we didn't know until he poked his finger for dinner and was over 600. High ketones are not good. It meant that he not only needed insulin for his blood sugar, but he also needed extra insulin to get rid of the ketones, plus he needed to drink lots of water.
I trusted Tony 100% with this, as awful as it was, so I continued to have fun at the reunion.
Tony knew exactly what to do (of course! He's an awesome Ddad–or DoD in the DOC 😜) TJ gave himself a shot, had a new pump site put in, and drank water. Tony did do one thing I might not have, he let the boys stay up until 10 pm (they are normally in bed at 7pm!! 😳😱). He kept them up until TJ was back in range.
They got to stay up and watch Star Wars, so they thought it was the best night ever…well…maybe TJ didn't, since he felt awful, but he was happy he got to stay up so late. (Movie photo is from tonight–not Saturday, I doubt they had popcorn)
I didn't find out until the next day, that not only did his pump site fail, but dex up and died too, for no apparent reason. So all in one day, TJ had 2 new pump sites, 1 shot, and a cgm sensor replaced. Which also meant that Tony didn't know what his blood sugars were doing, he could poke and see where TJ was, but had no arrows to show him if he's steady, going down, or going higher–for 2 hours!
Thank God it ended well, this time. Ketones are no joke, if untreated, they can kill a person with Type 1 diabetes. Many experienced families end up in the hospital when their T1D gets high ketones.
For now we are all once again a happy, healthy family.
Our summer has been full of fun and a little worry.We've been walking our local trail almost every day.
And we've tried out a trail that is a little more like a hike.
It has small hills
And precarious cliffs.
We've been enjoying our mornings together!
We have had a few worried moments about G though. He keeps complaining about his tummy hurting or being full when he's hardly tasted a meal. He's been drinking more water (but it's also been hot). He's lost his baby fat and is looking extremely skinny too!
All these things can add up to a type 1 diabetes diagnosis. The good news is, we are aware, and have supplies at home to alleviate our worry (temporarily). That fear is always there in the back of your
mind-once you have a child diagnosed.
We have checked G's blood sugars more in the last couple weeks than we have over the last 5 years! But (thank God) all his finger pokes have been in range.
So we let our worry go, until the next time he stumbles into the bathroom at 10pm looking for a drink of water.
Today was the big day! A 4 hour doctor appointment to find out if G can have eggs without swelling/turning red/uncontrollable vomiting. He hasn’t had eggs since he was about 9 months old because he had an anaphylaxis reaction.
Since then he’s gone from have nothing with egg in it, to having breads with egg, to having Mayo and ranch, to having anything with egg baked in-except scrambled eggs in things. He hasn’t reacted to anything we’ve given him at home, since that first time. But he’s had no egg, no (real) French toast, no fried rice….he’s missed out, right?
It hasn’t been too bad, really. But we thought a 4 hour appointment to determine if he can have them now was worth it. G was a little apprehensive about it though. He cried last night when we were talking about this appointment. That’s when daddy bribed him with an ice cream cone 🍦 for eating eggs at the dr. After 4 years of being told not to eat eggs, now we want him to!
He did pretty well, considering.
But tablets make things so much easier. 😜
I tried my best to make warm eggs available for this. I cooked them right before we walked out the door. I made a rice bag warmer and microwaved it to put the warmed glass dish on while we traveled. But the nurse at the doctors office either put it in the fridge or left it out on the counter during the appointment. 😢 So, by the time G got his first bite of egg, it was cold. But with a bunch of ketchup, and a little coaxing, he ate it. 5 bites of increasing size, 15 minutes apart.
But he ate them all (less than half the egg) like a trooper! And had no reaction!! 🎉🎊🎉
Sweets, playing on the tablet, and reading the classics (peter pan)or Star Wars books.
Favorite song: jingle bells and his own made up songs
This boy is crazy loving! He wants to hug everyone all the time! He’s reading chapter books and learning 3rd grade math skills. He is super smart when he applies himself. Math is no longer his favorite subject, but he’s learning to push through and do what you have to, even if it’s not fun. Despite the amount of clomplaining that goes a long with it, he is a big help around the house: cleaning a bathroom, emptying the dishwasher and loading it sometimes too.
He loves music! He hums, sings, or whistles constantly! He reads our children’s bible every night before bed and wants to collect rosaries. He’s very emotional and takes mean words or actions to heart. He is our sweet helper who’s always willing to give hugs (to family and friends). He’s still my shy boy, sometimes not wanting to talk in front of strangers.
He is pretty tough when it comes to pokes and prods. Even gives himself his own shots when he needs an emergency shot without complaining. The toughest part of t1d for TJ right now is removing the tegaderms that help keep his equipment attached. He’s stronger than he knows!
This boy is pretty amazing! He’s reading sight words and sounding out every word he sees. He’s read some things that have surprised us. He is working with papa on adding and subtracting too. My least favorite things that he says (a lot) are,”that’s not fair!😩” or “He’s not being nice!”
He can throw a tantrum like nobody’s business and is as stubborn as can be. Bribing him with dessert, or threatening to take something away doesn’t change his mind. He pulls one liners out of the air and makes us all laugh.
He still is a bully and loves to pick on his big brother. He can be so loving and sweet and he is my snuggle bug when we watch tv or movies. I can’t wait to see how this independent boy becomes a young man!
It’s been a long time since I’ve written! I was super bummed that we didn’t make it to a pumpkin patch last year, that’s my favorite post to write.
But I started this post to share my scary moment last Tuesday, so here goes.
My boys have swim lessons at our local YMCA, so, I usually drop them with their swim teacher and head to the indoor track to walk around. We make sure TJs blood sugar is in range, put all our things in a locker and go do our things. This day wasn’t really any different, they were swimming, I was off somewhere else in the Y. All of a sudden the fire alarm went off and a voice comes over the intercom saying, “there is an emergency in this building please leave through the closest exit.” Panic attack #1! I have to get to my kids! I go downstairs, and start to walk toward the pool only to find that door closed. I asked the closest employee where the kids in swim lessons would be, she said outside. Great. I go out the front door, and start searching…no kids in swimsuits dripping with water here… oh, they are around the side of the building. I head over there to find them wrapped in towels standing barefoot on the frozen sidewalk (which is covered in de-icer), shivering. G was crying when I walked over. One of the instructors put a towel on the ground for some kids to stand on and that helped their poor little feet a little.
I realized they were alive and well, just before panic #2 hit me: all of TJs T1 supplies were in the building, locked in a locker…and so were my car keys. If he crashes what could I do, I had no dex, and no meter to check his BG. He was in range before swim, but extreme cold drops him, excitement/worry can go either way. And who knew how long we’d be stuck out there?
I kept it together and tried to help the boys stay warm. After about 10 minutes, they finally let everyone back in-a little kid pulled the fire alarm, so no real emergency (Thank God!). They went back to swim lessons, and I went up to the chapel and had a good cry. I’m so glad my fears were unwarranted, that time. But I can’t figure out a good way to prepare for this in the future. Carry his backpack and my keys everywhere I go in the Y? That’s a fun workout. Leave it in a bag, near him while he swims? Sounds like a recipe for wet supplies. I guess I’ll keep doing what I’ve been doing and pray that there are no more emergencies for now. Unless somebody has a better idea?
This morning my boys woke up…then the craziness began. They were both over tired and whined/cried about everything. G didn’t want to fold and put away a pair of his clean shorts that were laying on the floor, so I let it go. We went downstairs and had breakfast after which they usually wipe down their table spot and get started on school work. Not today! TJ spread crumbs all over the floor when clearing his napkin, I asked him to vacuum them up but he decided to vacuum my flip flops and other nearby things instead, so I sent him to his room to think about his decisions. G decided he was too tired to start school work and that he’d rather go to bed (at 7:45am!). After a little while I checked on them in their room and found them snuggled up in TJs bed. I asked them to get in their own beds but G wanted to stay in TJs, so, TJ got the top bunk for a change. They were tired and wanted to nap (now 8am) so I let them. They talked and played (and I ignored). Then I went up to remind them that it was nap time (insert quiet here) and that if they weren’t quiet they’d have to have nap time again at their regular time. They were quiet (for all of 2 seconds) then G snuck over to the bonus room and started playing with toys.
I decided to try a “do-over day”. I told them let’s pretend we just got up and had breakfast. What do we need to do now? Make beds, start school work, do chores, play time, lunch, nap time, YMCA time, dinner and movie. That was what I had planned for today…sounds fun to me…nope! Making beds turned into a play session (and a messier room). I informed them that they were welcome to come downstairs as soon say they were done cleaning their room and making their beds. I had to help move the bunk beds so TJ could remake his bed (bottom sheet completely off the top half of his mattress 🙄) and told them I’d help push it back when they were done. They called me up to help and I noticed TJ needed to fix his comforter and how messy the bonus room was (not that bad-maybe 4 toys to put away) so I sent G to the bonus room and waited for TJ to fix his comforter and then pushed the bunkbeds back against the wall. Thinking they are finally ready to get to work, I walk over to the bonus room to find nothing put away, more toys out, and G playing. So, I walked away. They can play until they are ready to pick up. I will sit downstairs and drink my chai (thank you to the angel from buy nothing who delivered my Starbucks chai!!! The Only thing getting me through this morning)
They are still up there, nothing has been accomplished and I’m not fighting with them. But there will be another nap time today….I guess today was meant to be a non productive day…and I need to learn to be ok with that….it’s one of the bonuses of homeschooling, right?
I just noticed I haven’t written anything since April! We’ve been too busy being sick, spending time with family and friends, and just generally having fun! But here’s an update:
Summer is finally here!!! I’m so excited to spend time with my boys (and to not have to go to school!!!) 😃
I haven’t started TJs 3rd grade school year yet. We are still doing work everyday to keep up the habit of school work and the mindset that it’s something we do almost every day.
Since that “summer school” work only takes about an hour, we have lots of time to play! We’ve taken a lot of walks on the foothills trail and found lots of beautiful flowers.
We’ve also joined our local YMCA for the boys to take swim lessons and sports (it’s also motivated me to start trying different workout classes).
TJs T1D still has its ups and downs, but there are days that I’m amazed at how it works out in my favor! The other day TJ was LOW all day! Lots of juice and extra snacks just barely kept him around 60-80.
Today I took the boys to the Y and let them play I an area I have to supervise them for a while, the whole time worrying about TJs numbers, (dex was reading ???-which does not help me know what his bg is doing. I checked his sugars and gave him a snack and dropped him off at childcare hoping that he wouldn’t crash and that dex would start cooperating. I started walking their indoor track while waiting for my class to start and periodically checked my phone to see if dex started working again. Shortly after I started my walk it stated working! Hallelujah!!! Praise God! Now I could keep an eye on his numbers while I worked out! I did have to run down and have him poke and eat some more fruit snacks before my kickboxing class started, but he was good the whole morning after that. 💜
We took the boys to see finding dory in the theater. That was lots of fun, and a really cute movie!!
We had fun with friends on the 4th! We let the boys stay up WAY later than normal–7pm bedtime normally. They were actually up when it was dark…during summer!!! And I baked my first ever pineapple upside down cake!
We started summer art class up again (thanks to a local homeschool mom friend)
TJs Matisse style art.