It's been another great week in the life of Sophia :-) Today I am grateful for all of the children in our family and my opportunity to be there Mom and get to know new and better ways to take care of them all the time.

In Sophia news this week we drove up to Primary Children's to meet the dietitian. She has an idea on how we can hit her new target volume, with her ever-growing body. She doesn't think she's ready for a blended diet yet but we're working on getting there.

Last night Sophia had an hour and a half of some of her worse kind of seizures. We gave her everything we're allowed to give her at home and then Jason gave her a blessing and she finally fell asleep about 30 minutes later. Which was timely grace bc we would have had to go to the hospital if they didn't stop soon. 

So bad news and good news this week. But that's life! We had another week of great memories and we are going to try to cram in a few more before school starts!

Swimming at Nicole's (my friend with PCH twins). Sophia absolutely LOVES the water!

She also loves swinging!

Took Sophia and Max to the Draper temple to show them where Mommy and Dad got married ❤

Max playing doctor

Pioneer Day fireworks at home. It was raining so we sat inside Max's teepee ;-)

Random cute pic

Grandpa popped in for a visit ;-)

The end. Thanks for the support and especially the prayers! See you next week!

Chaplain Joe

Last week the Christian chaplain from hospice gave me a call :-) His name is Joe :-) He was so  nice. He talked to me on the phone for about 40 minutes. He asked a lot of questions about my spiritual base and my support system. After discussing it for a while, and explaining how I'm feeling about things, he said that he felt very confident in my abilities to do this. That gave me a real boost :-) Then he asked if we could pray, on the phone, before he hung up. He said the most beautiful prayer, it made me cry :-) I think he was truly inspired by the Holy Ghost :-) Which is not something that we believe is exclusive to Mormon's in case anyone's wondering ;-) We believe that the Holy Ghost can speak to anyone, anytime, anywhere. He is always there for us, if we learn to listen ❤

Pics this week. I really need to take more.

Visiting The Dragonfly and some friends from home ;-)

 Papa and Sophie ;-)

 Michael, Sarah and Max having a sleepover ;-)

 Progress on the wall downstairs :-)

Big shoutout to Chad for helping us!

 Lastly me trying to get a picture of Sophie's super curly hair!

Her Body is a Temple

In the Mormon faith we believe that our bodies are temples.
Sometimes the daily tasks of taking care of Sophia's body seem never ending. Sometimes the routine gets boring. In addition to all of the regular bathing ... brushing of teeth ... and doing her hair ...we've got range of motion exercises, percussion exercises, suctioning, breathing treatments, and administering of medications and feedings. I also like to use essential oils several times a day to help her :-) It seems like everything I do for her relates to caring for her body. One time when it was feeling especially tedious I felt a sweet impression from the Holy Ghost :-) "Her body is a temple. Take care of it."
I received a similar impression during her recent Primary Children's stay. "Her body is a temple. Only help it, don't harm it".
It is truly a privilege to take care of her Temple :-) I can't wait until the resurrection when I get to see her beautiful self all fixed and perfect :-)

Only took a few pics last week...

Look who got her toy in her mouth! It was so fun to watch her excitement :-) she did it!

We got to visit our home in Apple Valley when it was empty :-) I feel truly blessed that we have been able to keep our home And go back to visit.

You have to watch this video. One of the little girls in my PCH support group is in it. 

https://youtu.be/JSFkf7TFNwg

Heavenly Father answers prayers, and old story I haven't had time to tell

 About a month ago I had a couple of experiences, with moms that I met, who who had lost children. These moms were strangers to me, and I won't likely ever see them again.

I'd like to say that these were good experiences but they weren't. These moms were not doing so good. And although my heart broke for them, meeting them also got me a little worried. What if I end up like them? Bitter and scared and questioning God? Would that be me?

I reached out through text, to a couple of friends who have lost children. They gave me gospel centered encouragement and the things they said really helped me. They helped me hang on to the hope that I can do this.

But I still wanted to see somebody. I wanted to look into the eyes of a mother whose lost a child and see the Light of Christ. I was praying for help. And wouldn't you know, it happened at Walmart again!

I was in the checkout line and in front of me there was very kind looking LDS lady. She smiled at me and asked me about Sophia. Somehow, very quickly, I found myself telling her that she's not supposed to live very long.

Then she told me that she has four boys and two girls...... and that she lost one of her girls, very suddenly, to an illness. She said that her only remaining girl just recently got married, and what a sweet day it was.

Knowing that I would also be in that position one day, going to Sarah's wedding, I felt an instant connection with her. And there it was! There was light I was looking for! She had been through it. She seemed ok. She wasn't swallowed up in pain. And she was even helping me.

It won't be easy. I am sure it was hard work for her to keep her light. But I know that if I put in the work, I can be okay too :-)

So there it is. There was my answer to prayer. I'm so grateful.

 4th of July Baby

She's been especially loving to hug her stuffed animals lately. I didn't just place these. She actually squeezes and kisses them!

Pics from today

Michael's set up lol

                       Mama and Sophie

 This is my favorite. Max was pretending there were superheroes in his car and he was taking them to scare the seizures away from Sophie ❤❤❤❤❤ "come on guys" he would say ..."lets go scare those seizures far far away from Sophie!"

HOME!!!

We finally convinced the doctors to let us go home! She's still recovering but she is finally to a place that we can definitely handle at home with all of our equipment :-) we are super glad to be here! Thank you everyone for all of your prayers and fasting! It really does work she's doing much much better!

Look how happy she was to see Michael and Sarah last night...

 And here's a couple of snapshots from today :-)

So on the agenda for this week, Max is with cousins, aunts, uncles, and Jason's parents. They are heading to the Hayes family reunion today. Michael and Sarah are coming home from their dad's tonight, and Grandpa Chad is driving them out to the reunion. Jason is catching up on work from home and will go out tomorrow or the next day. Sophia and I are so sad to be missing it but it really is best if we stay home to finish recovering.

On Sophia and my agenda this week is: push for night nursing, and try to get her back on hospice. We would have been able to leave the hospital whenever we were ready...... IF she had been on hospice. Just in case you wanted to know what to pray for :-) These two resources would make a humongous difference in all of our lives.

LOVE YOU ALL!