Wednesday, June 12, 2019

Picture catch up

It's been a while since I caught up on pictures. In no particular order and hopefully none of these are doubles ;-)

Easter...



Kite Festival...


Snuggling...


Mothers Day...

Family Night...


Hiking...
Sheeps Bridge...


New Harmony...




Girls Trip (notice our new addition, second from the left! That's Kara, Mason's fiance!!!)

Sunset from our balcony...

Snuggling with Daddy...

New Car Seat!!! She's FINALLY long enough to sit reclined without folding in half! I can finally ditch the truck!!!

Max's preschool graduation (Kara again!!)

Therapy...

Watching TV with Dad...

Cousins...

Friends...

More cousins...

Swimming...

Being Pretty...

Valentine's Day...


(that's supposed to be a heart shaped pizza ;-)

Sledding...


More snuggling...

Wearing our PCH support shirts (notice mine is dragonfly)...

Mom and Dad actually went to a movie ;-)

Veyo Park...


Chad Ranch Wall. Since we moved to Cedar, I have had this interest in the Chadburn side of my family. I've since learned that my 3rd Great Grandpa and Grandma met here :-) This wall is the last remaining piece of Henry Chadburn's hotel. It was a stage stop in Veyo between Enterprise and St. George. 


More snuggles...



Night out with friends...

Big Sis doing Little Sis's hair...

Mason's birthday...

Trampoline (reminds me SO much of my childhood)

Pretty Hair...

Bubble Machine...

and More snuggles...


Saturday, June 1, 2019

Would I Do It Again? (belly laughing video)

Recent journal entry:

"Rocking my baby to sleep tonight. Singing her lullaby and looking up at the picture of the day she was first born. I wonder if, if I knew the end of the story, would I want to do the beginning again? I feel if I could go back to the beginning today, I wouldn't spend so much of her babyhood grieving. If I knew how much progress she would make and how she would smile and laugh every day."

Reflecting on this journal entry this morning because yesterday Sophia gave us her strongest laugh to date! Max and I were playing sorry and she started to crack up anytime I shuffled the cards! Seriously, she was busting a gut!  Such a magical sound! Months ago, I was so grateful that she had those couple of gelastic seizures, because I had the opportunity to hear her deep belly laugh. And I felt so blessed to have that ONE moment. Now  I have captured her real belly laugh and I'll be able to listen to it for the rest of my life! I feel so blessed!

Once again, from the girl who wasn't even supposed to smile...

https://www.youtube.com/watch?v=T5qcSFxeJyo

Don't mind my desperate begging of Max to help me get it on camera ;-) I wanted to catch her face on video SO bad (as you can tell ;-) He did help, but naturally it wasn't quite as strong ;-)

https://www.youtube.com/watch?v=7UmxrVfb-KY


Tuesday, April 16, 2019

Going home again!!

Both times we have left Primary Children's, we leave with tools that help us keep her out of the hospital for longer periods of time. They are blessings in disguise. Last time we left with the bi-pap. This time we are leaving with the g-j tube.

Here's how we hope the g-j will increase Sophie's quality and longevity. She has had aspiration pnemonia 6 times in 10 months. (twice she's been hospitalized). So, here's how that happens:

1. She gets the common cold
2. She has a soft gag reflex on account of never eating orally. This causes her to retch, from the post nasal drip, or when she coughs.
3. The retching causes her to throw up.
4. She then breathes IN her throw up (that's aspiration)... because her suck, swallow, breathe reflex is underdeveloped (which is the reason she's tube fed).
5. Then she gets aspiration pnemonia :-(

NOW she has a feeding tube that has TWO options. We can feed her stomach ... OR if she gets sick and begins retching, we can bypass her stomach and feed straight to her intestine. Leaving her stomach empty so that she cannot throw up and aspirate on formula.

This special type of tube, call the GJ tube, has to be placed in the radiology department at Primary's. And it has to be re-placed every 4 months.

In St. George we'd always been told she would need to be put under for this, as she needs to lie very still. So we've never done it, bc with her small brainstem, she has a higher chance of not coming out of anesthesia. we didn't want to take that risk three times a year.

BUT!!! There was an experienced radiology tech there, who said that HE could do it without putting her under! We are so excited and grateful for another blessing in disguise.

It is hard being in the hospital for 9 days. But there is so much to be grateful for. The Ronald McDonald House is a lovely place to stay. Jason brought Michael and Sarah up on Friday and we've been finding fun things to do every day, in between visiting Sophie ;-)
Probably the hardest thing has been missing Max who stayed with Grandma and Grandpa. But we're very hopeful that this g-j tube will keep her healthy for longer periods of time, so in a roundabout way it's benefiting him as well.
Church at the Primary Children's Branch was affirming. Just being around other special needs parents. And parents of terminally ill children. The truths we cling to are simple. The Lord has a plan for each of us. There is life after this. We will be together again. It is only separation. We just have to trust Him.

Sophie feeling better...

toured the conference center ...

the planetarium...



View from the hospital breezway...

Smiling that Dad is here...

The zoo...







Hanging at the Ronald McDonald House...



Visitors...
(to my in-laws I apologize that I didn't take your picture!)




 Michael and Sarah when they arrived

On our way home now!!


Big thank you to Mom and Steve for taking Max for 9 days.
Thank you Ben and Kaila for having us over for a family dinner, your timing was perfect.
Thank you Holly for coming over and trying to visit. I'm so sorry I'm such a space cadet 😆
Thank you everyone for all the texts and offering to help. It's so nice to know we have people that are there for us. Even when we tried to downplay how serious it was ;-)


Wednesday, April 10, 2019

Bypassing her stomach.

Sophia is still requiring a lot of breathing support. She hasn't been eating because she's been vomiting, which is not safe with that big mask on here face. We were hoping by today she wouldn't need it anymore, but she still does, and she can't go any longer without eating. So we are going to take her feeding tube past her stomach, and go straight for the intestines. This way we can get her some nutrition but she won't have anything in her stomach to throw up.

The good news is she has been smiling a little today and she's been awake more which is always an indication to us that she's feeling better. So who knows maybe tomorrow will be an entirely different kind of day!

Thank you everyone for everything :-)

Sophia today..


If you can Tell She's actually smiling a little underneath the mask :-)

Monday, April 8, 2019

Primary Children's Again

Sophia was life-flighted to Primary Children's last night. She was struggling to breathe and her BiPAP wasn't helping because she was breathing through her mouth. So we had to come up here and get the astronaut mask :-) She's much better now with the breathing support. It's aspiration pneumonia again. It began with a common cold, again. We are anticipating a shorter hospital stay this time. We are tired, but grateful, and hope to see her smile again soon ☺️








Saturday, March 16, 2019

She doubled her life expectancy!!!

     It's been a long time. Since the last time I wrote, Sophia had pneumonia again. We were able to keep her home. I attribute that, again, to her cough assist machine. Every hour when she is sick, I take her to her room and put this mask over her face. It forces air in her lungs, and then pulls it back out. It keeps everything in her lungs moving so that nothing settles. It must be a very expensive machine, because it was hard to get. Only people who are constantly getting pneumonia qualify for it. It has made a BIG difference for Sophia.
     She's been pretty healthy for several weeks now. Which is lucky because I've been having thyroid problems :-( When we first had her, I read that caretakers often end up with health problems of their own. Unfortunately that has been true for me. BUT ... I consider it a true blessing from the Lord that her and I have never been sick at the same time. I also don't consider it a coincidence that she is mostly sick when Michael and Sarah are at their Dad's. The Lord knows how important family time is to me. He has a hand in our trials. Jason is a great blessing to us too. He works so hard all day to provide and hardly gets a moment to himself at home. He's sweet and sometimes commends me for how much I do, but they are not just words. He knows how much I do, because when I'm sick, he does it for me. 
     Life is work. Thank heavens for our children because they are all extremely worth it. Every day we spend together, they make our lives so rich. I just love our children ❤️ 💖💓 Remember to count your blessings everyone. It is very important to keep perspective.
     Anyways those are my excuses for not writing but we also have had some very good times since I wrote last! Today I figure I will write about how lucky we are, that on the 28th of February, Sophia doubled her life expectancy!!!!! ❤️ And hopefully on my next post, I will update you with pictures of everything else we've been up to ;-)
     For Sophia's birthday this year, we had a small party at home. Just us. No extended family. I really loved it and here's why.
As you know we weren't supposed to have one birthday party for her, let alone two! Sophia has been SO strong and fought SO hard. She's proven time and time again that she doesn't want to go anywhere right now! She has woven herself into our lives in a way that ... just doesn't feel temporary anymore. I know that it is (and I'm glad that I did the work to accept that). But for NOW, we're just living life!
     SO, we just treated her birthday like we treat all the kids' birthdays! We put up a few decorations, made a cake out of a box, sung happy birthday and opened presents!
     We are so lucky to have her in our life. Her angelic light fills our home and makes it a very desirable place to be! She makes us grateful for everyday and she gives every member of our family a perspective about what's the most important in life. Loving other people, treating them with kindness, accepting those who are different in any way. She teaches us to value life and love others for who they are. No matter what.
     The week before Sophia's birthday we lost three children in our support group 😞 Our group has been growing, but that was still a lot in one week. One mother described this whole experience like being thrown onto roller coaster. One that you never wanted to be on ... but as soon as somebody lets you off ... all you want to do is get back on again.
    Her perspective reminds us to be grateful. And we really are. Last year I wanted to throw a big party for Sophia in the spring, but we ended up moving and had too much on our plate. I'm recommitting to trying again this spring. As long as our house in Apple valley has sold by then, so everyone pray for that ;-)

https://www.youtube.com/watch?v=0lOppgS1X8Y
Sophia Jane-Marie on Her Second Birthday!!!

https://www.youtube.com/watch?v=Ljik7OsW9M4&t=9s
Just in time for her second year with us, we discovered that being surprised makes her laugh the hardest! Ripping paper works too. And rolling dice, which makes family game night really fun ;-)








Friday, January 25, 2019

Smile, you could be doing the Lord's work ;-)

I haven't posted in a long time. My computer is down and posting on my phone is kind of a pain 😉 But this is a story I just had to share.

Sophia has been sick with pneumonia a few times since I posted last. She is sick with it now, but she is on antibiotics and recovering.

This is a story about dropping Max off at preschool, when Sophie is sick:

Max goes to preschool on Mondays, Wednesdays, and Fridays. Dropping him off has always been tricky. I used to get Sophia out of the truck and walk him in, but when winter came, I didn't feel comfortable doing that. She's so big now and I'm afraid of slipping and dropping her.

So I park right in front of the sidewalk that leads to his preschool door. Sometimes I have to wait for that exact spot to open up. B/C it's the only place that I can hear for her. I roll the window down and turn the heater on. Then I take him to the door. She's out of my sight, but not out of my ear shot, for about 20 seconds. It's the best I've been able to come up with, and safer than walking with her on the ice.

Last week Sophia got pneumonia again. Which comes with a lot of retching (this time around she retched so much she broke blood vessels in her esophagus) :-(

Some of you might remember that her reflux, which is very bad when she's ill, is the reason I had to buy an old truck with a bench seat in the front. So that she could be right there next to me. But on Friday she was too sick for me to put her in the truck, even with the suction machine right there. So Max missed school :-(

Monday she got put on antibiotics and it was a holiday so no school. By Wednesday she was feeling well enough to travel the two miles to his school. But she wasn't well enough for me to walk him to the bottom of the stairs. I let him walk in himself and I texted his teacher and she confirmed that he was in.

Then today was the field trip. I was going to need to bring his car seat in with him. Getting ready to leave the house I didn't know what I was going to do. How was I going to get Max and his car seat into the preschool when I couldn't possibly step away from the truck?

I don't know anybody at Max's preschool personally. But this one mom came to mind. She always smiles and waves at me on her way in. Like every time. I always know that I'm going to see her, and she is going to smile and wave at me :-) So I left the house with a plan in mind to ask her for help.

We pulled up and there she was. She was turned away from us headed for the stairs, so I called out to her and asked her if she could take Max and his car seat in. As I was getting his car seat out, Sophia retched and coughed and sputtered, and I had to stop to suction her. This mom was so sweet and said "oh bless her heart and bless your heart mama".

As I pulled away I began to cry. I was sad because I can't even take my son into preschool. I was sad that Sophia is sick again. And I was tired of winter. But I consoled myself, because the Lord has not left me alone. He put the mom that smiles in my path :-)

In my relief society meetings at church, we often discuss together ways that we can do the Lord's work. Somebody always says something like "I know it seems really simple, but smiling can make someone's day". I don't know anything about this mom, or what she believes. But I know that she is doing the Lord's work, just by smiling. So smile. Today. Because it could mean a lot to someone else 😊☺️🙂


*I have a lot of catch up pictures to post. But here is Sarah and I going horseback riding for her birthday. She's 10 now ❤️