Staycation and respite

It's been a harder week and a half, with a lot of good memories sprinkled in between. Sophia's oxygen was dropping for days and we were having to turn up her machine quite a bit. I mean we got 3/4 of the way to maxing out on the adult concentrator :-( But there was no reason we could find for it to be dipping. She's not sick, her lungs sound good, she wasn't struggling to breathe, we checked all her machines, switched out all the filters and sensors. It was just, a mystery. And then after a few days things went back to basically normal. We are relieved now, but for a few days we had constant worry, as much as we try not to.
We trust the Lord. What we pray for a lot is that the timing will be right for all of our children. We should (all) pray for specific things that we want. But we are also supposed to submit to God's will. Trying this week to strike a balance.
Alma 36:3 " ..... for I do know that whosoever shall put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day."

Memories this week...

Took the kids on a staycation while Jason had a work retreat.
Cedar Breaks Monument (bucketlist item!)

I particularly like Sarah and her dolly Wendy in these two photos ;-)

Swimming (in the same swimsuit Sarah wore at her age ;-)

 This girl LOVES to swim!!!

Snuggling at the hotel on our "staycation"

Random pics from the week...

Sophia under her sign Daddy made her (finally got it hung in her new room)  ;-)

and FINALLY got the family pictures hung too. The kids say it takes a long time for me to get to things, gee I don't know why haha ;-) But to me it finally feels like home when I hang our pictures ;-)

Sophia's home bipap (shout out to my sister who's getting one too!). She's had it since Primary Children's this summer but I don't think I've put a picture of it on here. She only wears it when sleeping but it really improves her quality of life.

We got some pet fish. Max re-names them every couple of minutes ;-)

Sophia laughing at her silly brother and constant companion ;-)

https://www.youtube.com/watch?v=hz4gsW8GtkQ

In other good news we FINALLY got everything in line for respite and have had a few breaks this week! I was so excited to be out and taking breaks with Jason that I totally forgot to take even one picture for proof haha ;-) 

We even got to go to the temple Saturday which was an incredible relief. In the celestial room I read in the scriptures about the mysteries of God and felt comforted. We don't know everything, but we do know enough. And one day we will understand it all :-)

School Starts/Sophia's a little subdued

School started yesterday. It was kind of an overwhelming week with school starting because Sophia's seizures have been increasing. They aren't like status or anything (that's when they won't stop for hours), but we're seeing them every day and she is a little more subdued the last couple of days. It could be nothing, we'll just have to wait and see. I decided after our last hospital stay that we're simply not going to worry until the doctor's tell us to. We were planning a vacation to California this weekend but we cancelled it and are substituting a staycation instead. Still really grateful this week. Grateful for the extra support from Michael and Sarah's Dad and Stepmom. Feeling grateful that we live in a small city bc it is much easier to get a to do list done. And very grateful for my husband who tirelessly helps me with my endless to do list, and only complains a little ;-)

First day of school.
I'm so not ready for Michael to be in middle school. He's so grown up and responsible. I just don't even want to talk about it 😑

Our little baker. She makes the YUMMIEST treats.

One of my young women from Apple Valley brought us a present. So incredibly thoughtful and loving of her! Totally made me cry.

(Lindsay I'm going to post the pic Jason took of you here I just have to get it off my phone ;-)

Friends over for dinner

Sophia laughing and smiling big, at Mason and Max playing last week. She really loves it when people laugh ;-)

SLEEEEEEEEP!!!

This week was incredible! We finally got our night nurses and we have had 7to7.5 straight hours of uninterrupted sleep every single night!

We're beginning to feel  more normal now that we're sleeping, and with it being the last week of summer before school starts , we did a lot of fun stuff this week!

Sophia watching more fireworks for Pioneer day...

 Water balloon fight...

Veyo Park 

 Veyo Pool (bucketlist item!)

Sophia totally fell asleep in the pool and she was so relaxed and warm I just told Michael to go get the oxygen! Yep we totally did that!

 Crawdad Canyon...

 My Great Great Grandfather Henry Chadburn. Converted to the Mormon Church in England in the mid 1800's, and settled Veyo with my Great Great Grandma Mary.

 Zion National Park (bucketlist!). Sophia gets us in free AND we get to drive in ourselves, we don't have to take the shuttle. People were totally jealous.

 Rodeo (bucketlist item!)

 Snuggling and watching movies...

Sophia on Sunday in a dress my Mom made for me!