Two Steps Forward, One Step Back

Sophia was moved out of the PICU yesterday. She had a really good day yesterday, we got a lot of smiles out of her, and we just wanted to take her home.

https://youtu.be/tp_GLflDCY0

or type "Sophia getting better" into youtube

Pretty Nail polish brought by Aunt Mel ❤

But last night was a rough night. Her pnemonia and flu still seem to be getting better, but now she's doing a lot of stuff that looks like seizures, she's throwing up more, and she had some low temperatures this morning :-( So now we are doing a 24 hour EEG. Which means we will be here for two more nights at the very least :-( She's still in good spirits though ;-)

We have had many more visitors ;-) Jett's mom came by (they wouldn't let her in to see Sophia though bc of visiting hours... boo). Our friend Justin came by, Jason's friend Bruce, and Jason's brother Josh and his family. Jason's siblings are helping with Max.

I have to say we're tired of being here. We miss family life. We miss Max, and he's having fun, but he misses us too. We do see him every day but it's not enough. Monday Michael and Sarah WOULD be coming home from their Dad's but we won't be seeing them. They are going to the Hayes family reunion, and we're glad about that. But we wish we were going too so we could be together.

Ugh. I really hope we get to bring her home soon.

Jason and I taking a break in the garden :-) I truly wish I were a robot that didn't need to sleep eat or take a break :-( But at least she's got the best babysitters in the world right now :-) ❤

Update

The flu is what started it all. The doctors said it is such a mild strain that in any other children it would present as a common cold. She got pnemonia on top of the flu, and then 45 minutes of seizures sent us on a life flight airplane up here.

As soon as we got here I started to feel better. She is in the best possible hands and she has been very comfortable since she arrived. She's stable and making tiny, almost indiscernable improvements. But she is still in the PICU and no one has any real idea how long we will be here.

My friend Nicole came to visit :-) Nicole's husband Danny brought food our first night in. We've also had Jason's parents here, my sister Holly, Jason's Sister Mel and her husband Laine, friend's Jay and Lisa, and Bruce's wife Kristin. We've stayed with friend Bruce and been offered lodging by lots of friends and family. My Mom and Stepdad are keeping Max and my sister's Ahna and Millie (and probably their husband's) are helping. Michael and Sarah's Dad Curtis and his wife Mari have been an amazing help. They even helped our ward weed our yard. Our bishopric came to give us all blessings before we were life flighted. Our new friends and neighbors check in and keep in touch. (and as I'm writing that I'm thinking we outta tell our Apple Valley ward-sorry guys! ;-) 

Before I left for the Cedar hospital my Dad drove up to hold her while I packed up and then drove Max to my sister's. My Mom held her on a difficult night so I could catch some sleep. My Stepdad watched the kids. And there have been many more people helping. We are incredibly blessed. There are parents in here who don't have a fraction of that kind of support.

Me and Nicole (sorry everyone but she's the only one who asked for a picture and I don't think of it!)

Getting on the flight up here...

Something I've been having a hard time with is why children have to suffer. There's a lot of things I feel like I understand and can accept about this life but that one is really hard for me. And as I was searching for the answer to this, a thought came to mind....

A suffering child instantly draws compassion out of everyone. Seeing a child, a baby suffer... instantly we feel sorry for them... we hurt for them ... we do everything to help them. And I'm starting to think that we become more Christ-like through that process. I know that because of her I have been taught more compassion for anyone who is suffering in any way. And not just her family, everybody who watches Sophia is affected positively, even when they are watching her suffer. She creates opportunity for people to become more Christlike. She can't even talk and yet she teaches compassion. 

Does she deserve it? Definitely not. I hope and believe that maybe she even chose this. Maybe she wanted to help other people be more like Christ. Anyways that's just my thoughts for the day :-)

PICU

Sophia in the PICU at primary children's. Prayers appreciated.❤

PCH Meet Up

Sorry I didn't write this week! Honestly it's been a hard week and a half. I came down with some pretty serious symptoms and found out that I have a thyroid problem. My TSH levels were almost undetectable. I've had my thyroid checked twice in the last 3 years and it was fine, so we don't yet know if this is temporary or not. Anyways that's my excuse for not writing ;-)

• But best part of last week was the Utah PCH meet up! We got to meet up with 6 PCH children (and families) from our support group! Three of them were new friends! It was so amazing meeting these families and supporting each other! Here are the pictures :-)

(and just in case you're wondering, all these PCH kids have been diagnosed with pontocerrebellar hypoplasia, but only one has the same type and mutation as Sophie. He's in the blue behind me in that first picture ;-)

Wal Mart Samaratin's

Michael, Sophia and I left to Wal Mart and everything with Sophia was fine. Michael pushed the cart and I pushed Sophia. Halfway through our list she started arching in her stroller. We folded her stroller under the cart and I held her. Then in the self checkout line she retched super loud, turned purple, and threw up. Michael ran for something to clean it with.
I literally had people rushing to my aid. The man at the register next to me. The cashier, who was pregnant, dropped what she was doing and stood by me until I was done. Once the incident was over, I explained that Sophia just has special needs and everything is ok now. You know what she said? "I know. I can tell you've got it. But I'll be right here, just in case." Then she told me I'm doing a great job ;-) Of course I got all teary eyed in public. But I felt so grateful too.
A member of my support group posted a couple days later about people being rude in public. Gawking, acting put out when they are taking up space in public restrooms, etc. And it made me realize how lucky I am to live in such a nice State. Everywhere I go in Utah people give me kind looks, help me when they can, and rush to my aid when things get crazy. I feel confident when I go out in public. Because I know I can depend on the strangers around me, no matter what happens. How amazing is that?

This week.....

Sunday Dinner

Up at my Mom and Steve's property on Cedar Mountain

Just remembered I haven't posted Jonah's adventures on his mission for a while! Sorry! He says he loves the work and he's doing well :-)

Model Baby

I have a really good story for this week, but we had a wonderfully busy Sunday :-) So I will post the story tomorrow. In the meantime, enjoy this beautiful picture of our model baby :-)

Sophia's ripple effect

A couple weeks ago a friend called me up. She told me about how telling Sophia's story helped her begin to heal a strained relationship that desperately needs healing. That Sophia's story broke down walls and helped them see each other as people. I loved hearing this. It confirms that our little fighter has a purpose. Something I've always known but I love to see proof of it. This little angel in a broken vessel, who can't even walk or talk, she has work to do on this earth too ;-) Just like we all do. What is your work? Why are you here? What can you do for others in your life?

Catching up ;-)

Sophia's first outing to the park in Cedar City

She likes to feel the grass...

Working hard during tummy time

Sleep study. It's amazing how well she tolerates this crap. She's a patient girl.

Visiting cousins before the sleep study

Moonset from our new bedroom window

Last morning in our Apple Valley house

Big brother visits ;-)

Grandma May's 65th birthday

Found a picture of Sarah when she was Sophie's age....look at the resemblance!

 Last day of school. Watching videos in MJ's class, but he just wanted to be by Sophie ;-)

New favorite toy that her therapist left. She can actually grab it which is awesome. That's her concentrating face.

 Grandma May getting in some snuggles

Selfie in the morning

Hugging Daddy's neck in church

Uncle Frog is funny ;-)

 Flowers in Apple Valley