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.
The boys are playing outside in the sunshine, while I stand in my kitchen snacking on BBQ potato chips and drinking a glass of red wine. We are waiting for tony to get home so we can sit down for our teriyaki chicken and rice dinner. It’s so peaceful and quiet in the house I just had a moment to realize I haven’t shared my Easter weekend photos yet (or written any blog posts in a while…) so here we go!
We want to church on Good Friday and the boys were super excited to process around the outside of our church holding lit candles. It was tough, staying up late and having to drive 45 minutes to get home afterwards. But I love those services! And the music! 💜
Saturday we colored Easter eggs.
Saturday night was a struggle. The boys were allowed to “camp out” in the bonus room for the night. (Because the Easter Bunny needed their room)
But eventually we could get to work in their room. The crib/toddler bed was taken apart and put in the garage for firewood. (The teeth marks and the way Tony turned it into a toddler bed made it unable to be put back into crib form)
And we dragged TJs mattress and box spring out so we would have plenty of room to build!
It was not easy and it took two and a half hours, but we got it done! And finally went to bed shortly after midnight. Only to be woken up at 5am by boys ready to inspect their baskets. The response to the new bunk beds/sheets/comforters was a little anticlimactic.
They were more excited about mouthwash and $1 frisbees than they were about the bunk beds. 😳
Then we headed to church to celebrate Jesus rising from the dead and got our Easter bbasket fill of yummy food blessed before heading to grandma and grandpas house. Then it was nap time! Both boys went down (although only G slept) plus mommy got to nap! 😜
Tony took a couple pictures of the boys and me in our Easter finery.
And then we went home and put the boys to bed in their new bunk beds (hoping for an early night for all of us) only to have two boys so excited about their bunk beds that they couldn’t go to sleep again! Too many late nights in a row for this mom! I’m hoping andbprayingbthst thru will fall asleep quickly tonight (since they didn’t last night-again)
It’s just another crazy dinner time in the Ortiz home. I plate up everyone’s food and get it on the table. We say grace and dig in. G needs many reminders to eat his dinner (this time it’s was the potatoes he tried to ignore). TJ surprisingly ate everything on his plate without any arguing. (You can’t go wrong in this house with cucumbers as the veggie)
After TJ is done eating, I ask him to empty the dishwasher and he gets started (playing with each dish before putting it away–as I watch cringing)
Tony grabs TJs Dexcom (continuous glucose monitor) to see how TJs blood sugar (BG) is reacting to dinner. Ummmm… 150 with a straight up arrow (not uncommon after a meal) but, the arrow makes him remember something…”TJ did you check your blood sugar before dinner?” (Dead silence)
“TJ did you dose for dinner?” (More silence)
“TJ why didn’t you check your BG before dinner?”
The magic response?
“Because I forgot”
Who’s fault is this really? Mine and TJs. I gave him food with no carb count and we both forgot to have him check his BG before eating. It was hectic before dinner, TJ was working on school work (that he hadn’t gotten done earlier) right up until dinner was on the table and I was rushing things along because I was hungry.
Luckily tonight’s dinner was fairly low carb: 1 fried chicken leg, 1 mini cucumber, and 1 red potato with sour cream and cheese. All in all it was under 10 carbs. Add to that the fact that he was under 150 before dinner (not that we checked at the time) and that we caught it before he was over 200 and (wiping sweat from brow) we sure were blessed tonight!
Our Gaurdian Angels must’ve been working hard for us tonight. Thank you God for keeping TJ safe! If we had had a higher carb dinner or if he’d started out higher he could easily have been over 400 by the time we realized and it would’ve taken 2.5-4 hours to get him back down into range. Along with a sleepless night watching to make sure we didn’t give too much insulin which would cause his BG to go too low.
It was so easy to slip back into the no poke days before he was diagnosed (almost 4 years ago!).
It doesn’t happen often (thank God!) but it does periodically happen that we do something (or don’t do something) that can cause serious repercussions to TJs health. We just try to not repeat them, but sleep deprivation is not a memory booster. 😜
Just another day in paradise, thanking God that we still get to be here together.
TJ kept asking to go snowboarding but Tony and I have no experience with winter sports. We had no idea how to teach him and were a little afraid of the high costs associated with snowboarding. At family camp last October we heard about riding on insulin, which is a Type 1 Diabetes (T1D) snowboarding (and ski) camp started by a professional snowboarder with T1D. The closest camp they had near us was on Mt Hood in Oregon. When registration opened we signed up! G was too young for the camp, so we planned to find somewhere to sled while TJ was learning to snowboard.
We had to drive for 4 hours to get to Mt Hood and unfortunately had a late start because Tony got stuck at work later than we’d hoped. We got to our hotel so late that we completely missed the orientation on Friday.
We got up early (as always-thanks to my boys rarely sleeping past 5am) ate breakfast and got ready. Our goal was to get the rest of the way up the mountain to the lodge where the camp was being held by 8 am, so we could get all TJs rental gear and the info we missed at orientation so we would be ready for the beginning of camp. But the odds were once again against us. We were only half a mile from the lodge when our tires started spinning. We pulled off and Tony put our chains on but it didn’t really give us very much extra traction. It took a while but we finally made it to the lodge and parked. We walked around trying to find the right building and the banquet room that riding on insulin was using as base camp. After being lost and asking our way, we finally found the room, got our folder of info and headed back to the other building to get TJs rental gear. Another wait in two more lines and back up to the lodge we headed to get TJ to his group and find out the plan for the day.
TJ was having a rough weekend. He refused (or was unable) to follow directions and listen. It probably didn’t help that he was low during the morning session, but I don’t think that was the whole problem. He kept falling down and then laying there or making snow angles. He wasn’t paying attention to the instructor either. Luckily his group counselor took him under her wing and gave him some one on one help part of the time. While we were watching TJs antics and trying to help him and get him to pay attention and try his best, G kept playing in the snow without his mittens on (despite us putting them on his hands repeatedly). When we gave up helping and left, hoping TJ would do better without us there, G was cold (especially his hands). We walked around the lower building looking for somewhere to get him a cup of cocoa, and couldn’t find anywhere. We went up to the lodge still searching for cocoa and still didn’t find anywhere. Tony decided to check out the gift shop and I took that opportunity to ask the cashier where to find cocoa. She recommended the restaurant upstairs saying they had a delicious signature cocoa. So, once we finished checking out the shop we headed upstairs and got a table at the restaurant. The cocoa was so big that G had to share with me! It really was delicious! It was covered in whipped cream with toffee bar crumbled on it and drizzled with caramel and chocolate syrup. The three of us also split a cheese fondue appetizer for lunch before heading back down to the campers lunch to check on TJ. He was not having a lot of fun and had had a low of 33. They gave him juice and got him back up and he was sitting at a table with his box lunch, not eating. He poked his finger when we got there and picked out what he wanted out of the box lunch. We dosed him for part of what he ate (expecting more activity lows after lunch) and sat with him while he ate. We asked if he wanted to go back out with his group or go play in the snow with us and he decided to go try snowboarding again. So after another finger poke he headed out with his group and we headed out with G to find a good place to play. We found a steep hill and climbed it repeatedly and had a small snowballfight and had lots of fun.
We went back up to the lodge to check on TJ again and make sure he was having fun and wanted to stay with his group, but had a hard time finding them. We eventually found him and he showed me what he had learned.
Sorry for the sideways video, but it’s all I got (thank you Marnie, for getting it on video for me!)
We hung out inside for a while hoping socks and boots would dry for another trip out to play, but it was soon time for the group photo and the boys were tired. We headed back to the car for a rest and some pictures before walking back up to the lodge for dinner with the rest of our riding on insulin campers.
We ended up having to leave shortly after dinner because my boys were so tired they couldn’t even handle sitting at the table anymore.
In spite of all our struggles (and lost battles against time) we managed to have fun, see some friends, and TJ learned how to stay up on a snowboard (although he needs to work on stopping) 😜 thank you riding on insulin!