Church!

Look who finally got to church! All of us together!

(Jason's snapping the picture, he got off a plane and met us there :-)

Flu season is officially over so it's safer for Sophia to be in public places :-) We still have to be super careful but we can go to church together now! So that was the highlight of our week :-)

I only have a small panic attack every time we have to leave the house LOL. This was posted to my group this week and it totally spoke to me :-)

Pictures this week...

Old Soul

This week in the life of Sophia We had a 24 hour EKG because of her HR intermittently dropping. It's been happening for a while now. A lot of parent's on my support group say it's normal for their kids so I'm not super worried. But we did see the cardiologist about it on Wednesday. We don't have the results of it yet.

Other than that she's had a good week. My sister asked me this week if I ever feel like she is an "adult". I knew what she meant and my immediate response was "all the time". The veil is so thin around Sophia. I can feel her spirit so strong. Sometimes I even forget that she can't talk because, even though no words are exchanged, it feels like we've been communicating all day. ;-)

Smiling at Grandma May...

She likes tickles from her Daddy...

 And big brother Michael....

Girls Trip

Every year there's a girls trip on Jason's side. Last year Sophia and I did not get to go bc she was sick :-( This year we made it!! (mostly bc they drove most of the way ;-) Thank you dearly ladies :-)
I'm not going to lie it was hard getting out of the house. It was even a little scary. I haven't stayed anywhere overnight with her, except the hospital, since last summer. She doesn't travel as well as she did when she was a baby. She's bigger and harder to handle. She's got more machines and medications and complications.
She did amazing though. It was like this miracle. Sophia throws up every day. Somehow she didn't throw up once and actually hasn't since we've been home either! She didn't have any seizures, she was moderately dystonic from time to time, but all in all she had a great time.
As for me, it was so nice and so healing. To talk and laugh about normal stuff. A handful of times I even forgot how hard our life is. I felt, almost, normal. I'm so glad I went.
Bringing Sophia in public was interesting as well. I even saw the doctor who delivered her. It was nice that she is still here and I could show her to him. He was telling his family how she's beating the odds :-) It's so nice that she is too.
Everyone notices her. Everyone is polite and accommodating. Most of all I love it when people are brave enough to ask questions. I find that much more comfortable than awkward silence ;-)
Anyways the trip was a success and I'm glad we were brave and did it.
And now.....it's time to buckle down and move!!! ;-)

Grandpa Hayes was driving through and stopped to see Sophia ;-)

Oh and I COULD NOT have done it without my SIL Megan who helped drive me everywhere ;-)

Thanks everyone for making this happen! It was wonderful.

I'm grateful for this

This week was better. She's still trying to get rid of this cold, and is requiring a fair amount of suctioning, but other than that she feels so much better. We've spent a good deal of time in our backyard during the day. It's hard to get out, so it helps us feel better to at least go out and enjoy the view ;-) Springtime is so nice up here. I love our trees. Sophia does too. She seems drawn to them ;-)

Recent Journal Entry
"Who would have ever thought I would be thanking my Heavenly Father for this. Being pregnant and expecting a healthy baby is a distant memory. I can't imagine my life any different." Of course I don't ALWAYS feel this way. It's a roller coaster. But the spiritual highs help me through the lows.
Life is full of surprises. I'm surprised that I'm grateful for this. She's so amazing. I'm so glad to know her. For as long as Heavenly Father sees fit.

My friend Nicole and her husband Danny brought us dinner Friday night. They have twin girls with PCH, Macy and Lucy, who are exactly one year older than Sophia.

The End. Happy Sunday!

Poor Girl

Poor girl is sick with the rhinovirus again :-( I noticed myself getting sick a couple of days ago and I did everything I could to try to keep her from getting it:-( If anybody else gets sick they have to stay away. I'm the only one that can't :-( I wore a mask and gloves and sanitized the whole house twice a day. I didn't touch her hands or kiss her, I used a blanket in between us, and she still got it :-( Jason and I were up all night with her throwing up from the extra secretions
:-( She even got down to bile this morning :-( She's needing the adult oxygen concentrator right now, nasal suctioning, breathing treatments. She's having seizures, can't keep her meds down, and we're fighting dehydration. I hate the common cold.

I am grateful that I am skilled enough and have enough equipment at home that I can keep her out of the hospital :-)

Happy thoughts:

1. It's Easter and General Conference. The new Prophet will speak today and I can't wait.

2. Jason and I are rotating shifts with the kids and Sophie...we still get to have an easter egg hunt in our lovely yard, make a birthday banner for Jonah, and have hot dogs over the fire pit :-)

3. I realized this week how perfect Max and Sophia are for each other in, yet another, way ;-) Max never stops talking, and Sophia never stops listening ;-) She's perfect for him :-) She never interrupts him, she just smiles ;-)

Pics this week before she got sick again :-)
Mason took&made this first pic...

Yes we pretty much wear our pajamas all day every day haha.....

Don't mind the nutella on Sarah's face. These were too sweet not to share...

Easter...

MJ showing me the way he likes his marshmallows lol...

 The kids donated some of their Easter eggs to Sophia since she couldn't be out there.

https://youtu.be/3KlajsZEQ0M

A bit of good news as I've been drafting this all day. It's taken some extra medications but her stats are looking good tonight. Extra prayers appreciated.