"My best friend to lay on"

Max says "Sophie is my best friend to lay on!"

Update Good and Bad

So the bad news is that she is sleeping less and less. I've heard this is common for neuro kids. That's what they call kids with neurological disorders. She only slept 6 hours last night and took a couple of short naps today. Thank goodness we are training the night nurses this week. I'm not sure how much longer I'd be able to stay on this trajectory.

The really good news is I haven't seen a seizure in weeks! :-) :-) :-)

Sophia Lately...

Her name on paper

I love seeing her name on paper :-) Even if it's on a medical bill ;-) It makes her real :-) This isn't exactly what we wanted but we did have a baby :-) A beautiful baby:-) She IS here :-) And THIS is her name :-)

God's Permissive Will/ the 24th

In a book I'm reading the author talks about God's permissive will. Permissive being the operative word. She reminds the readers that even Jesus Christ asked God that his life be extended. But he also submitted to God's will. And Heavenly Father had a plan for Him just like he has a plan for all of us. There are three elements to a sincere prayer of asking. Faith, and petition are our responsibility. But God's will is the third element. Heavenly Father has an ultimate plan for each of us and His will cannot be defeated. But even if our petitions for a miracle go unanswered that does not mean He is not there for us. I know from experience that He will always comfort and help us understand.

The 24th was low-key but fun:-) Being divorced sucks and sharing holidays sucks. But I'm glad that I live and Utah bc the years that I don't get Michael and Sarah for the 4th of July I get a second chance on the 24th! :-) Jason bought fireworks and we didn't think we were going to get to light them :-( It rained most of the night... but then it cleared up just long enough for us to light up the clouds! :-) We ate candy and had a good time :-)

A place to remember her

Navajo lake was really nice. It is always so peaceful. Now that I've spent time with Sophia there I know I will go back there and remember her 😇

Bucketlist item-Going to the lake!

Hey everyone! We are so excited! We have tried to go out to Navajo Lake twice and had to cancel because Sophia got sick :-( but here we are on our way! So excited!

SLEEP!

I have incredible news! By way of some very generous people Sophia is getting a Night Nurse 5 nights a week! I am so incredibly grateful for people who are generous and giving to our family :-)

Since Sophia was born my priorities have been taking care of her and making memories as a family. But since she is a perpetual infant with special needs I have been increasingly tired and realized that the trajectory I was on was not going to be sustainable.

 Sophia has a humongous team of people working to care for her  :-) We are so grateful  to everyone who cares so deeply about her quality of life and ours :-) This is going to be a HUGE relief to know for sure that I can get sleep EVERY night! And peace of mind to know that she will be with a medical professional :-) With all of my heart I hope that I'm able to give back to moms in my position, in the future :-)

Sophia has been very restful today :-) and I'm so glad for her :-) I haven't been able to snap a picture of her today but here's one that Jason texted me from a couple days ago :-)

I love the color of her eyes right now as they are changing :-)

Things you don't ever hope to have in common

Tonight I am thinking about my two stepsisters. Wonderful women. Wonderful mothers. Who have both in the last couple of weeks lost their babies :-( one at full term and the other  at 20 weeks. my heart breaks for them and I am so sad. These are not things that you ever hope to have in common :-( we are in a way lucky Mama's though:-) I know that our babies are proud to have chosen us, and I also know that they wish they could take our pain away.

Sophia today

A much better day

Thank you for your prayers. Sophia did MUCH better today. Today she was our happy girl :-) In other news today...Jonah was given the Melchizedek priesthood. I would have taken a photo of him and Jason to remember, but I couldn't be there. First ordination of his I've missed :-( He's a really good kid :-) How wonderful to have 3 Melchizedek priesthood holders in the house ;-)

Sophia today ...

Prayers

Please everyone say some prayers for Sophia. She's been having some hard day's and the medications don't seem to be working. She's a wonderful baby with a very patient temperament. But we need to find medication that can help her body calm down so she can get her rest.

Sophia today :-) the best part of the last few days has been the early mornings. The weather is nice and there is shade on the grass in a spot where her oxygen can reach. We look at the sky and the grass and the trees of which we are lucky to have many in our yard :-)

When she sleeps...life is good

Just a little update tonight. Sophia's had 2really great weeks...and then two hard evenings in a row. Today was better. But man...when she wakes from a long nap, she's so much happier. That's when her personality shines and she's like, our little girl 😇

Sophia today...

Put that swing together all by myself btw. That's right 😉

We really should be immune

Sometimes it doesn't feel fair that in a situation like this we can't be immune to other hardships. Shouldn't we get a free pass from sickness, unfairness, or really any additional kind of hardship? Well I don't know why it's not that way but I can tell you...it's not. For some reason that's not God's plan. But I still trust Him.

Sophia right now :-)

Not on the baby announcement

I've taken thousands of pictures of Sophia. She' adorable so naturally it was difficult narrowing it down for the baby announcement. Which is still going to have 15 :-) Here were some runner ups ;-)