Staying Home From Church

Early on I had the distinct impression that I'm not supposed to keep Sophia in a shell. That she, like all of us, has a mission. A purpose and a work to do here on Earth. I'm disappointed because she suffers so much when she's sick that it's just not worth it :-( Jason and I have decided to keep her home from church for the rest of the flu season. Which means one of us has to stay home too :-( With Jason being the elders quorum president, it's probably going to be mostly me. I'm disappointed about that too. In my life I've always noticed that if I make sure to be where I'm supposed to be, especially church, I'm blessed. My life runs smoother....I have more inspiration...and I'm given many blessings.

I know that Heavenly Father understands me staying home. Today I tried to make the best of it. I found an old recorded sacrament meeting playing on byutv (oh my gosh the hair in the 80's! NO modern tv show can ever recreate that!). We are going to arrange for the sacrament to be brought to the house. And we figure I'll get a chance to go...... maybe once a month.

Kiddo's today....

Michael hanging out in his new TV blanket (he loves it Grandma May!)...

Sarah was given this picture of Christ in her primary class today. It's my personal favorite. It warmed my heart that she brought it home and put it on Sophia's table under her pink light :-) I love that. When Sarah see's Christ.....she thinks, Sophia ;-)

 Sarah showing Sophie the pictures she makes on her light bright (that Santa brought her ;-)

 Tonight we settled in and watched The Hobbit (extended) for New Year's Eve ;-) We had pizza and candy and sparkling cider. It was over by 8:30 and Jason and I are going to bed lol ;-)

New Rooms and RESPITE!!!

I'm still having intermittent sad feelings about Mason and Jonah being gone from the house :-( It feels empty. Everybody is spreading out and moving rooms.

Sophia and her machines have been able to stretch out in a master sized room, that Sarah and Max were sharing. We can fit bigger and comfier chairs in there....which will be much easier on our backs when we are holding her for long periods of time :-) It will also help us get some shut eye when she has to sleep upright. It's really comfy in there I swear it's bigger than my first apartment lol :-)

Sarah's is going back upstairs and getting a tv and dvd player, so she's excited.

Michael is getting, can you believe it, his own master size room.....complete with a big flat screen TV, sink, and walk in closet! He's stoked! Wow. Even though he's excited, I wonder if he really knows how lucky he is to basically be living in a hotel room at 10 years old! ;-) Of course we are keeping the bunk beds up, for times when Mason wants to crash here, which Michael is also very excited about :-)

Max going back to the nursery and he's going to have his own space again.....which I'm not sure he's going to like as much as he initially thought. He ended up in our room last night already 😩

Feeling blessed with a beautiful home today :-)

Sarah and Sophie enjoying her new room...

 Sophia's new space...

 Sophia's views... (man if someone would have told me when I was living in LA.....that I'd one day live in this paradise!)...

Sophia's view of the Christmas tree her daddy decorated in the backyard ;-)

The big celebration from today however is that Helen started! She is Sophia's amazing new daytime respite nurse, and the state paper work is finally done! She has so much experience with special-needs babies and neurological disorders that I literally had to explain nothing to her! This morning Jason and I went to breakfast and spent an hour-and-a-half talking to each other without getting interrupted. It was Sublime! :-)

Make Up Christmas

Today we had "make up Christmas" with my Mom and Stepdad! We were showered with gifts from them and from my dear sister (who wasn't supposed to get us anything!). Thanks you guys. You make us feel so special and loved. Merry Christmas ❤

My favorite Christmas presents were these beautiful ornaments my sister Ahna made from our Christmas card, and the baby's first Christmas ornament. She's so connected to our situation and to Sophie. I will cherish these forever :-)

10 Months Old Today!

We kinda stopped doing her monthly birthdays...but I'm planning a BIG birthday party in two months!!!

Life is mainly froth and bubbles. Two things stand like stone. Caring in another troubles and courage in your own. (just another quote I saw on my support group).

I ran across this video quite coincidentally on Christmas Day. Jason and I both relate to this father (especially Jason). I love what he said about first breaths and last breaths. His message is simple. He knew that his daughter came from somewhere and that there is more after this.

https://youtu.be/gCH_s7BB3fs

https://www.youtube.com/watch?v=gCH_s7BB3fs

or youtube "finding hope after losing a child" it's a mormon message

She's just loves to play with her hands!

Look Who's Back Again!!!

She hasn't vomited in a whole day and her fever is staying away! Her oxygen saturation is still a problem, but it seems to be improving. Anyways it's the perfect day for her to be feeling herself, Michael and Sarah came home from their Dad's today ;-)

 When Sophia is happy....everyone is happy! The Boss is Back!
https://youtu.be/fBkGMFXVP5E
 or youtube "Sophia Jane-Marie is back!"

And to celebrate we painted her nails ;-)

Incapable of hate

 A mom on my group shared a slideshow of our PCH kids and a message on facebook. With her permission I'm sharing part of her message:

(her daughter is also named Sophia ;-)

"Sophia and children like her have a LOT to teach us if we would just pay attention. They embody everything the holidays SHOULD be about. They take deep pleasure in the simple company and attention of the people they love. The just want you to be there. They enjoy the lights and smells and sounds of the holidays. (.....) They are physically incapable of hating (or) making other people feel small. They do not have a mean spirited bone in their blessed little bodies. (.....) with hearts and souls true as theirs, are they really disabled? (.....) for everything they lack physically they make up for with the purity and beauty that is their souls"
I just loved that. It's so true.

For Christmas this year we planned to have breakfast casserole at my Mom's and a turkey dinner at our house with my Dad. We did not get to do that, but we still made a little Christmas for Max and Sophie ;-)


Presents waiting on the porch for Santa :-)

My dad dressed up every year when we were kids. And my Mom would wake us up to spy on Santa putting the presents under the tree. Thank goodness for this bit of magic on this otherwise uneventful Christmas Eve 🎅


Look close, you can see Santa's beard ;-)

Sophie's Christmas present from Santa (Jason this year) could not be sweeter. It's an art projector. The kids can draw her pictures, and we can project them onto the ceiling for her to see ❤

 And here is Jason's gift to Sophia. He made her that sign above the chair. Between that, and a fighter Jett onesie, I'd say "Sophia's wall" is full :-)




Max is delighted with his new diggers that do all sorts of tricks, and say "Max Power!" :-) The funnest part of Christmas this year was listening to him exclaim about everything he got ;-)

And finally Sophia today :-) Max brings her his toys and animals ;-)

She doesn't look it but she is feeling slightly better today. She's breathing a little easier and her fever hasn't come back for 24 hours :-)

Christmas

Just wanted to let everybody know that she is feeling a little bit better and we did have a decent Christmas. Will post more tomorrow

Good Thing We Already Celebrated :-(

Poor girl. She's retching more forcefully than she ever has and she's got a fever again :-( This virus has either gone bacterial or she's gotten something on top of it :-(

We are grateful for every moment and we are grateful for every trial. We trust God and know that there is some reason why she has to be suffering on Christmas Eve. We are quite grateful that we celebrated early with Jonah and that she was very healthy for that :-) Today we are cancelling plans and keeping it low-key.

I'm grateful that our four older children have other parents that can give them a nice Christmas :-) And thankful Max is at an age where he doesn't put too much stock in the festivities or the food :-) We are going to watch Christmas movies with him and Santa is still going to come :-)

Mason got to hold her for a while last night before she started...

Poor Sweet Girl...

Hangin out in Sophie's bed ;-)

Three More Presents

Today a special friend came out to the house to give Sophia a Christmas present. It's a noisemaking toy with a great big button she can hit (accidentally or intentionally;-) to make it go. This is Jett's dad. His beautiful son had PCH and passed away when Sophia was 3 days old. He actually passed, on the day we got her diagnosis. Jett lived to be 5 years old and even though we never met, he holds a special place in our hearts ;-)

Last night our friends Frank and Becky treated us to a hilarious dinner show. The Rattlin-D Playhouse. It was a good feeling to laugh so hard..... that for brief moments.....I forgot our daughter is on hospice. Laughter is great medicine!
And I got a selfie with a funny cast member.

Upon arriving home I discovered some beautiful flowers that were sent by my friend Jenny, who moved up north, and who I miss ;-)

Thank you so much everyone! We feel so loved this week!

Frankincense

Today as I sit and rock my beautiful little angel I am grateful :-) I'm grateful for all of this snuggle time :-) I'm also grateful to friends and family who help and support us.

 In particular a dear friend of mine sent a care package for our little sick Sophia. It was so generous that it made me cry :-) Included inside were two bottles of Frankincense, which is still expensive today :-) It has been helping Sophia so much! It helps her breathe when I rub it on her back. Everytime I do, I think about the baby Jesus, and Christmastime, and loving giving people. I think about how blessed we are in friends and family. The ones who have been there for us our whole lives........and new friends who we love as if we've known them forever :-)

To update you on Sophia, one of her nurses was wondering if her labored breathing could indicate pneumonia and so we took her to her pediatrician yesterday. Thankfully Sophia does NOT have pneumonia :-) Once again it is just the common cold that makes it so hard for her to breathe :-( The good doctor hooked us up with yet another new machine, so we can give Sophia breathing treatments at home and (hopefully) avoid the hospital :-) Another wonderful gift :-)

Because (right now) it is only the common cold... and because her nurses are so good at taking care of her... Jason and I decided to go to his work Christmas party last night. It was extremely difficult to tear myself away.... to smile and to talk....but it is also very important to take care of ourselves so that we can take care of her :-) I checked the camera about 20 times during dinner, but we had a lovely time :-) Every year when Jason and I leave to go back home, we both express how fortunate Jason is to work with such fine people and good friends :-)

*shout out to my mom for taking Max to Grandma's house for a sleepover!

Lastly an update on how Sophia is doing today :-) Her stats are better, she's not struggling as much to breathe. I was able to reduce her oxygen by 30% (she WAS on double the most amount she's ever been on, even in the hospital. They even had to bring me a new concentrator because the pediatric one wouldn't go high enough). She even did occupational therapy this morning and smile just a little :-)

Sophia on the way to the doctors yesterday...

Her new nebulizer...

Sophia this morning...

Counting Blessings Helps My Mood

Sophia was worse through the night (thank goodness for her night nurse!) but this morning she's a tiny bit better. A dear friend sent me some frankincense and when I put it on she breathes better for a few hours :-) We are staying home for now since its viral there's not much to be done. Her lungs sound clear right now :-)

Blessing 1. My dear mom is coming out to help me and I'm so grateful.
Blessing 2. We are also grateful for a son on a mission. Especially at a time like this we could use the extra blessings.
Blessing 3. It finally snowed last night. I was just telling my sister the other day that we've got snow every year for Christmas since we moved here but I hadn't seen any yet :-) I don't exactly know how to explain this but when there is a change in whether it reminds me of my Heavenly Father :-)

Jason and Mason taking Jonah to the MTC yesterday...

A little snow goes a long way ;-) ...