Barons July 6th

We have done quite a few things since our last post. Here are some –

Kayla’s Concert

At the end of each term we always have lots of concerts to go to but this year we had an extra special one because Kayla performed with Millenial Choirs and Orchestras at Abravanel the first weekend in May.

We made a mini trip out of it and Ruby, Kayla, and I stayed at a hotel nearby so we could easily go back and forth from rehearsals and performances and not have to drive home really late at night multiple nights in a row. We even had a few hours of free time to go to the Conference Center, see the Tabernacle Choir practice, go to the church history museum, and go out to eat a few times.

We took FrontRunner and TRAX there and got to practice getting a wheelchair on and off with Ruby sitting in it and carrying all our luggage. It was actually pretty fun for the most part. The concert was amazing!

Kayla had to wear makeup so she had fun learning to do it for herself for the first time.

Ruby in the Conference Center –

Kayla performing in the concert (third from the top left) –

Ruby’s Art

Here is some of Ruby’s art picked to display at her school. She is spending more time lately drawing and enjoyed her art class in school this year. Which one do you like better?

Ruby’s Health

Ruby’s pain has been about the same, maybe a little better, since her SOT infusion but she seems to have a higher tolerance of how much she can do before the pain gets to a point where she has to stop. We did go to an allergist in Murray that was recommended by her geneticist because it’s common for allergies to be a problem in EDS patients.

They did the prick test and blood tests on Ruby and said she has really high allergen numbers for basically all plants, both in the air and foods. He had her start taking Allegra every day to see if she could tell a difference and she thinks it helps, although she never noticed her allergies were that bad previously.

He said her allergen response is really elevated in general and he recommends she get allergy shots. We have an appointment next week at a doctor in Provo for both her and Norm so they can both get shots at the same time.

The doctor thinks she should get them for all her environmental allergies because it may help with her food allergies and mostly because he says if her numbers are this high now, then they will be crazy bad in the future, so it’s preventative more than anything.

Stake Youth Conference

Kayla went to Stake youth conference in Wallsburg, UT for most of the time. Ruby and I went for a day. They had a lot of fun activities and they had fun hanging out with their friends.

Girl’s Camp

About a week later, we were off to girl’s camp at Flaming Gorge, UT. Norm joined us for the entire time. We camped in tents in the middle of sage brush with a pavilion and two flush toilets for about 150 people.

Despite the lack of comfort, we did a lot of fun activities, including kayaking on the lake, floating down the river, singing and talking around the campfire, and playing games. It was a really different experience than we’ve had for the past few years since it was four hours away and different accommodations than normal.

But our ward really had a chance to work to together and get to know each other a lot better and get out of our comfort zone so it was successful overall.

Piccolo Reunion

About a week after that we had our annual Piccolo reunion in Orangeville, UT. It’s about two hours from Orem, kind of near Price. We stayed in a large house and spent a few days eating, having activities, and playing games. It’s always fun to hang out with family and this was no exception. We also snuck out and did a little Geocaching and here is a photo of something we found near a cache.

Idaho Trip

About a week after that, we left for a trip to Idaho. We stayed near Norman’s brothers’ new property in Ashton, Idaho and got to see all the lots, see where one brother is currently building his house, and the lot where his other brother is going to build a vacation home.

We also had two of his sisters visit and had a picnic with them on the property. Some other fun things we did were lots of geocaching, eating out, hanging out with Norm’s brothers, going to Mesa Falls, Cave Falls, and Horseshoe Lake.

The most fun thing we did we riding some UTV’s out to Sheep Falls. It was about two hours roundtrip and part of the road was really rocky and steep and mostly only UTVs go on the trail so that was fun. It was better than a ride at Disneyland because it was way longer, no wait, and very adventurous!

Sheep Falls –

Mesa Falls –

My Health

Right now, I’m letting the SOT therapy do it’s thing. I was really tired and felt weird for at least a month and have very, very slowly getting my energy back. For at least a month I was really, really sleepy all the time and had a hard time keeping my eyes open even if I had a good night’s sleep. Luckily, that was mostly before all the trips.

Now I’m sleeping a ton, like often up to 11 hours a night. It’s crazy! It feels good to sleep well and long and to sleep through all sorts of noise in the morning (like all through breakfast at girl’s camp and the reunion).

The main problem is it’s hard to get something done when you sleep in until 10 am. It’s like I’m a teenager again. The good part is I have a decent amount of energy in the day as long as I get a good night’s sleep.