Happy Halloween

Happy Halloween! We had a fun filled Halloween weekend.  Saturday morning we went to a birthday party in costumes because the birthday boy was born on Halloween. And then we came home and I finished working on Joel's costume and got it finished just in time.  He wasn't sure his robot vision would be ready in time but his mother came through.  

He had boxes on his feet but it was hard to walk in so he took those off

For Harvey's birthday party Joel didn't want his robot to get damaged since it was outside at a park so he wore the hotdog costume again.

I do love making his costumes. He has such great ideas and while its a little stressful getting inside his head to figure out what he is really thinking it always comes out great.

Colin wore his alien costume from last year to the birthday party and had a lot more fun in it. No freshly broken bones this year.

Norah was adamant this year that she was not going to be any kind of princess.  She wanted to be a baker. And I think came out really cute.

This is the first year brent and I didn't go around with children. Juliauna took Norah and Joel (and chloe) around with her and then Colin went with Matthew. We sat and watched all the kids come up and get candy - we had ours out on a table. 

Joel dressed up his little piggie. 

Matthew had the best costume. Watching him walk in it was priceless. 

Colin wasn't sure what he wanted to be and just went into the dress up bin and picked whatever fit. He told me that this was his last year legally trick or treating. I told him in our neighborhood he might have a few more years. Or we might have to just have all the kids over for a costume party. 

I matched our guinea pig.....

A bunch of neighbors made these candy shoots that sent down the candy to the kids. They loved that.  That's one good thing from covid. I hope that stays. Our neighborhood also went all out in the decorations. We would go on walks at night to look at the lights. None of them had anything scary. Just lights and blowups. I think people needed something to cheer them up this year. And apparently most of the neighbors gave out full size candy bars.  Another mother and I made a deal that if she goes full size candy bars next year to let me know so we aren't the only ones not giving out the good stuff.  Kids ran around until 10/11pm just playing. We brought out our fire pit and sat and talked with neighbors for hours. I do love our neighborhood especially nights like this.  

 

Joel

This boy is back in school two days a week. Colin is still waiting to go back. I have plenty to say about how much we hate virtual learning but for now I want to brag on Joel. 

We got his blood work back. It was worse than I thought. But also encouraging in a way to finally get answers. In fact the doctor looked at Joel and told him his mother had been on the right path for years knowing something was off. No other doctor listened to me or dug deeper in the blood work I asked to do. I almost burst into tears then. I’ve spent many many nights researching what could be wrong with Joel.

So now we have answers. This new doctor dug deeper and really listened to our concerns. Basically it’s all stuff he’s been born with. Something with his genetic makeup. His liver isn’t functioning. Close to failing. His thyroid isn’t working right, his insulin is off the charts (some number needed to be less than 5 and his was 42.3) his cortisol levels were super high and his body isn’t absorbing many vitamins he needs. He had no vitamin d showing up in his bloodwork.  All of these together have caused all his issues. The only reason he hasn’t gone into diabetic shock and his liver not completely failing she said is because we have had him on a gluten free dairy free diet. And his weight gain is his body trying to protect itself. 

So good news is we can reverse these issues with a very strange diet and supplements right now. 

He is supposed to be on a modified whole 30/ keto dairy free diet. It’s been a big learning curve. He isn’t missing sugar. He misses bananas and potatoes. It’s hard because most keto is all meat and cheese. And he can’t do the cheese. Poor thing is also getting really tired of eggs everyday. 

We found out about this diet the day before we went camping. Joel didn’t cheat once. It did help his friend Hudson just got braces and his mouth hurt too much to eat normal foods either. And since then Joel has remained steadfast. Our doctor said he can have two cheat days a month and wants him to be able to have normal foods here and there because this isn’t a 30 day diet. It’s something he will have to do his whole life possibly. He is waiting and will be using his cheats on Halloween candy. Specifically Kit Kat’s. 

We go in a few weeks for more blood work to see if any of his levels have changed. And then will go from there adjusting his diet and possibly add some medication. 

And to add to this year, two weeks later Brent had a doctors appointment. He needs to be scoped for some reflux issues he’s having but the doctor  wanted to rule out Allergies first. Brent has always been allergic to milk but now he’s apparently allergic to beef, pork, eggs, wheat, and a bunch of other things. There were over 10 on the list. 

Joel can only eat meat and eggs. Brent can’t eat either of those. 

Anyone want to invite us over for dinner? Ha! 

Brent hasn’t gone a day without cheating though. And right now I’m focusing on Joel and getting him used to this new way of eating so it’s sustainable for him.

This past weekend we had friends come visit and the weather was perfect. We took them to the beach and swam all day in the water. Their son wanted ice cream for dinner and Norah wanted some but I whispered to her I would take her to Chick-fil-A Wednesday when Joel was in school. I didn’t want Joel to feel like he was missing out on yet another thing if everyone got icecream and he didn’t. 

Wednesday I go get Chick-fil-A for Colin and Norah. We eat lunch and hide the evidence. I told them it wasn’t lying. We were protecting Joel’s heart and his liver! I go pick up Joel from school and he gets in the car, takes off his mask he’s been wearing all day, and starts sniffing. Then he starts complaining how he hates wearing his mask all day and how now it’s starting to affect his nose. All he smells is rotten chicken nuggets. He went on and on about how messed up his nose was until I couldn’t hold in the laughter and came clean. 

 

Camping

 This past weekend we went on our annual camping trip with our friends. We are trying to make our way around the state parks so we booked spots in Kiptopeke this summer. We had great weather and really enjoyed the eastern shore.

We enjoyed seeing the concrete fleet out in the water.

The sunsets never disappoint on the bay.

One night the girls slept in our tent and the boys slept in their own tent.

Camping is a lot of work. But the kids love it and are making such great memories. There's something so peaceful about getting away from everything.