We'll call that a bucketlist item 😜 We took her to the Cedar City Temple open house. Likely the only time she'll go inside a temple in her earth life. Although, we believe there are temples in the next life so she'll have plenty of opportunity 😇
This is a blog about the joys of raising Sophia. It is intended to be REAL, inspiring, and shed light on the experience of having a terminal child. I hope that our experience will help people in one way or another. I could have never imagined having a terminal baby with special needs. The news was devastating. But there is joy in this journey. And life lessons to be learned. God knows us, individually, and he blesses each of of our lives daily. THIS, IS SOPHIA'S STORY...
Tuesday, November 14, 2017
Monday, November 13, 2017
This will be a good story later
Tonight Sarah tried to burn down the house by making Max a chocolate cake in the microwave. I mean.....her logic was sound......you put a cake in the oven for an hour......that should work in the microwave too right?! Yeah.....it only made it about six minutes until I noticed and we had to literally evacuate. EVERYthing smells like smoke btw.
Then while we were in the backyard waiting for Jason to come home ... there were sirens on the freeway heading somewhere...and Sarah thought they were coming for her LOL!!! I guess it's a pretty good story now....I'm chuckling as I write it hehehe.
I didn't get a picture bc I was too busy trying to save us all from smoke inhalation. But here are a couple from yesterday...
On a walk with the "littles"...
Then while we were in the backyard waiting for Jason to come home ... there were sirens on the freeway heading somewhere...and Sarah thought they were coming for her LOL!!! I guess it's a pretty good story now....I'm chuckling as I write it hehehe.
I didn't get a picture bc I was too busy trying to save us all from smoke inhalation. But here are a couple from yesterday...
On a walk with the "littles"...
Snuggling when I got home from church. We missed each other :-)
Saturday, November 11, 2017
Long overdue pictures and video's as promised
Here are some long overdue pictures and video's of Sophia I've been promising to post :-)
This first two though are actually from this week.
In the first video: This week she made the most progress getting her fists to her mouth!!! She did this for about 10 minutes :-) It's kind of an amazing feeling watching her develop. Even though this is typical for a 3 month old, when you have no expectations, everything is a celebration!
In the second video she's just being "tired sweet" for Daddy ;-)
Sophia Jane-Marie Sucking her fists
https://youtu.be/nfz5mZzrlm8
Hey Hey Hey
https://youtu.be/NbaaNpIG-C8
I promised these two a couple months ago...
It's very slight but it's there ;-)
Sophia Imitating My Kissy Noises
https://youtu.be/oYdeUe2FrbU
Now keep in mind we were told she's not really supposed to have this much control...
Sophia "Pulling Herself Up"
https://youtu.be/w_LHz2hHGoQ
And I'm finally uploading the rest of our California vacation pictures as promised in August ;-) This vacation was the most special vacation of my life. It was short and sweet but I showed my Angel my favorite beach and we'll always have that ;-)
Michael and Sarah playing in the waves with friends Jake and Kaden
https://youtu.be/uKsR9ogNlmo
Excited and on our way...
Hotels are fun...

THE BEACH!!!
There was a poor woman in this picture who looked like she didn't want to be in it so I did some quick handy work in "paint" haha
My dear friend Kristin. We met in California at the same station in life. We had our first baby boys 6 months apart :-) I remember at 22 thinking... I knew a thing or two about life. I'd certainly been around the block, or so I thought! On this visit, Kristin and I talked about how much we've been through SINCE. And how back then we never could have imagined the trials ahead...
Inspiration Point. This is my second favorite place on earth, besides home. So many times I've looked out on that ocean....and thought of the magnitude of this life....and how Heavenly Father is in everything.....
Where Michael was born. Happiest day of my life when I became a mother. It's all I've ever wanted to be. I remember bringing him home like it was yesterday. Up these steps......
And into the apartment. I was content to just stay inside all day long and cuddle with my baby. And stare at him.
When I finally did start venturing out the front door...this is where I took him swimming for the first time :-) It took me over an hour to get him ready. Slathering him in sun screen. Putting his little outfit on. I took at least a hundred pictures of him in his red hat :-)
That concluded our California trip. And we vowed nit to go again for at least a year (the drive was not easy haha ;-)
Snuggling with my last baby on the way home :-)
This first two though are actually from this week.
In the first video: This week she made the most progress getting her fists to her mouth!!! She did this for about 10 minutes :-) It's kind of an amazing feeling watching her develop. Even though this is typical for a 3 month old, when you have no expectations, everything is a celebration!
In the second video she's just being "tired sweet" for Daddy ;-)
Sophia Jane-Marie Sucking her fists
https://youtu.be/nfz5mZzrlm8
Hey Hey Hey
https://youtu.be/NbaaNpIG-C8
I promised these two a couple months ago...
It's very slight but it's there ;-)
Sophia Imitating My Kissy Noises
https://youtu.be/oYdeUe2FrbU
Now keep in mind we were told she's not really supposed to have this much control...
Sophia "Pulling Herself Up"
https://youtu.be/w_LHz2hHGoQ
And I'm finally uploading the rest of our California vacation pictures as promised in August ;-) This vacation was the most special vacation of my life. It was short and sweet but I showed my Angel my favorite beach and we'll always have that ;-)
Michael and Sarah playing in the waves with friends Jake and Kaden
https://youtu.be/uKsR9ogNlmo
Excited and on our way...

There was a poor woman in this picture who looked like she didn't want to be in it so I did some quick handy work in "paint" haha
And into the apartment. I was content to just stay inside all day long and cuddle with my baby. And stare at him.
When I finally did start venturing out the front door...this is where I took him swimming for the first time :-) It took me over an hour to get him ready. Slathering him in sun screen. Putting his little outfit on. I took at least a hundred pictures of him in his red hat :-)
That concluded our California trip. And we vowed nit to go again for at least a year (the drive was not easy haha ;-)
Snuggling with my last baby on the way home :-)
Friday, November 10, 2017
Daddy Comforts Her
She's sick again :-( Nothing contagious just another bad reflux day :-( But she sure does love being with her daddy :-) It was sad that she was dry heaving, but it was so cute that in between heaves, she would look for, and smile at her daddy ;-)
Thursday, November 9, 2017
Speech therapy
Sophia had speech therapy for the first time today :-) We have no expectations but the therapist wanted to know what other kids with her diagnosis have done so I asked my support group :-) Turns out some of them have been able to say a few words! I'm not getting my hopes up because Sophia's type and mutation is a more severe one. But I'm so genuinely happy for these other children that have found some words :-) I just watched the most adorable video of the only word a little boy ever said, one time, Mama :-) My mommy heart lept for joy for this mom :-) Especially because she has this on video! :-) She will always be able to hear her son's voice say Mama. Makes me so grateful for technology! :-) Can you imagine being a pioneer in this situation for example? Losing your child and all you have is a mental image that will fade? Ugh.
Grateful today ;-)
Grateful today ;-)
Tuesday, November 7, 2017
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