Happy 11th Birthday and Happy Fair Week!

 The boys had a great 4-H fair last week! They scaled back a lot on projects this year so there was a lot less stress. Alex took his diamond painting for visual arts and Daryl did one buymanship outfit that he modeled and was in the Archery meet. Alex had been working on his diamond painting since January and his persistence really impressed the judge. He got his first ever rosette with a reserve champion on his project! It might have even inspired him to do arts and crafts one more year. Fingers crossed! 

Daryl was in the senior division for the first time in Archery. That longer distance really got him. So his combined score got him a red ribbon. Hopefully next year he will get his score back up! He got a purple ribbon on his buymanship outfit and a champion rosette on his modeling. Since the fashion revue is the last event of the fair it was fun he ended on a high note! 

The first day of judging was Alex's birthday but I was able to sneak away from the fair at 5pm to take him for his requested steak dinner and Coldstone ice cream. Throw in some awesome presents (game controller, pickle ball paddle, chess board and Roblox gift card) and he was thrilled with his birthday! Yay! 

Now that fair is over it's time to start preparing for back to school?! Where did the summer go? 

His first fair rosette! His diamond painting was
Naruto characters. 

Daryl's casual buymanship outfit

Daryl in the Archery meet

The birthday boy! He ate every bit of his steak!

Alex always worries about talking to the judge.
But when it is his turn he does great! 

Happy 4th of July!

 Playing blog catch up, because we have done things this month, I just have gotten them written down. 😝

4th of July was a little weird because it was a Tuesday but we still made the most of it and had one of our better holidays! We started by watching the Potwin Parade with our friends and then enjoyed our traditional shrimp boil for lunch. The kids got to pop off their fair share of fireworks after lunch! I don't know if it's a good thing or bad thing but the boys don't really need any assistance anymore to do their fireworks. I was able to just keep a watchful eye as the big idea this year was to blow up a fresh horse patty leftover from the parade. LOL 

After our Potwin Afternoon we went swimming because we were hot and needed to kill time before our night time fireworks. I should say Daryl and I were hot, Alex didn't want to swim and now we know why he had been cold all summer when the rest of us were sweating! 

What might have made our holiday one of our better ones is we didn't go to the big firework shoot off at Auburndale Park this year. Alex wasn't feeling up to the crowd and I don't like how late we have to stay for the really big stuff to start going off. So we did our own night time firworks right outside of our house! Then a bit of good fortune our Potwin friends went to Auburndale, saw that is was a zoo and came back and shot their fireworks off with us! They had some bigger ones than we did so it was a great addition to our show. :-) Yay Friends! 

The last thing that made 4th of July 2023 awesome was the storm that came in at 11pm and stopped all of the fireworks for the rest of the night. It was the best night of sleep I've ever gotten on 4th of July in Topeka. LOL 

Yes that is Alex wearing a hoodie in July...

The 4th of July Shrimp Boil is always a highlight of the day! 

The providers of the Fresh Horse Patties...

Our New Normal

 I want to start this post with the disclaimer "Alex is good." We have a diagnosis and while I wish he wasn't fighting anything it's a relief to know what is going on with him. 

So backtracking, end of May or beginning of June, Alex was feeling bad and was an absolute slug. He lost energy around dinner time every night and was constantly cold. When we went on vacation to Texas I discovered he was running a fever every night but in the morning it was gone. He was having trouble in the bathroom but that is almost a given for him so I wasn't even factoring that in. He has had bouts of constipation and then diarrhea for years and we've just medicated it and blamed food.

Mid June he had his yearly well child check up and he was not well. Since his last check up he had lost eight pounds or 13% of his bodyweight. Then we mentioned his fever and his general feeling of yuck. His doctor took blood and the next day referred him to children's mercy because of high levels of inflammation and anemia. 

The next week we meet with a pediatric GI specialist, Dr. Patel and she orders more labs. His levels were very worrying and she was debating at that time hospitalizing him but since he wasn't in pain she scheduled a stool lab and a colonoscopy for him. His original colonoscopy was scheduled for September and he was placed on a cancellation list.

A week after that Dr. Patel called because his stool test was again off the charts for inflammation. She didn't understand how he wasn't in constant pain. On Monday she scheduled an emergency colonoscopy for Wednesday.

I must have been in denial because I thought we would have this test and be feeding him chicken nuggets on the way home. His prep for the test was rough and he wanted 20 chicken nuggets as soon as he was done. 

His test was not good, his GI tract was inflamed and full of ulcers. He was admitted immediately. They had to wait for pathology but they were pretty sure on visual it was Crohn's disease. 

The pathology came back yesterday and it was Crohn's and Kelly and I got what his treatment plan is until they find a cure or a medicine that can treat him at home. 

The medicine he needs can only be infused at this time so his new normal will be a medicine infusion every 4 to 8 weeks depending on labs and how he feels. 

This was all a lot but there are bright sides. His disease is treatable. We know what his disease is. The doctors said there is nothing he ate or did that caused this and we caught it exactly when we should have. That last one was a lot for me, a mom who wondered how you let your child get this sick. Turns out this is how you find out your kid has this, they have their first really bad flare. Who knew? 

Fingers crossed Alex gets out of the hospital tomorrow or Monday and thank you to everyone who helped us when we needed it. I love my support system that includes family, friends and co-workers. ❤️❤️❤️

Final plug to all the doctors and nurses we have worked with. They have taken such great care of him I want to cry thinking about their kindness and dedication. Alex when you look back at this I want you to remember the names of your day nurse and night nurse that you loved. Micala and Amanda are CMH rockstars. 

Everyday they brought him a craft... How cool is that?!

He wanted a chess board right away. He beat me everyday, never got old for him.