Sophie's Birthday is COMING!!!

YOU GUYS! We are so extremely excited that Sophia is going to have a birthday! Feb 28th! Which I've also just learned is worldwide rare disease day how cool is that!

We just can't believe that we've come so far and she's doing so amazing! :-) We consider ourselves the luckiest parents in the world. I believe I speak for both of us when I say that we accept whatever may come, but the fact that she is going to probably have a birthday is really an incredible blessing!

We are planning a humongous party to which everyone is going to be invited of course :-) I'm very excited about the venue, we are renting out and old roller skating rink! It sits on top of a gas station in a tiny little town called Veyo :-) A town I used to live in as a toddler and I remember going to that very same skating rink as a child :-)

The only catch is her birthday party will NOT be on or near her birthday. We're going to have to push it out a month or two because of this deadly flu season :-( We will still have some kind of special celebration on the day of course :-) and we will look forward to a wonderful celebration in a few months!

 Sophia today :-)

Sarah's Birthday Party....Again.... ;-)

So this is the last bday party for Sarah I swear :-)  For her "friend" birthday party she got to pick two friends to bring to the movies :-) :-) I remember the first movie I went to after Sophia was born. It was Beauty and the Beast. Even though I knew it was important, my stomach was a little sick the whole time. Lately things have been so good. I feel so comfortable being here right now :-)

Sunday Drive

Sophia has been doing so well lately! When Max woke up he wanted to go on a drive in the "new" truck. So her Dad watched her and I just took him! That easy! It felt SO good to go for a drive in the hills. That's a big piece of who I am!

I feel rejuvenated and everything is feeling like it's looking up. I think part of that too might be this "headspace" app my therapist suggested? I've been doing it every day and I think it's really helping me cope :-)

Anyways happy Sunday!

Goodbye Truck :-)

You've served our family well. The little kids loved you. You got the boys through high school. And most importantly to me, you took us on our first date ;-)

First Date Jan 3rd 2011

Jason and Mason took the Ranger up to Salt Lake this morning because I found a Tundra with a bench seat in front. A Saturday when Sophia is feeling good is so precious, I just hate it when Jason has to waste one running errands. But it will be very nice to be able to drive around safe and comfortable with her:-)

Max saying goodbye to the truck this morning :-) He expressed a little disapointment but he'll probably like next one too :-)

Priorities

The last couple days we have been SO busy trying to find the right vehicle for Sophia. We need something reliable, with a bench seat in the front. But it can't be too tall bc she's big and floppy. Also we need to be able to turn the airbag off.

Funny thing about being a special needs parent. When you're buying a vehicle, you don't care about anything else but the needs of your child(ren). Color doesn't matter, make or model, bells or whistles. Not that I was super into cars anyways. But I'm finding this to be the case in a lot of areas of my life now. Unimportant things, that might have mattered before, simply don't. My priorities are....adjusted. I just want my kids to be safe and happy. I don't want anything more.

Used Clothes, and Used Cars, Make Me Happy, and Sad.

A year ago I was pregnant with Sophia and we bought a used SUV that could fit all 8 of us. I was so excited. Life seemed so perfect. I was happy :-) Today I sold that SUV. That made me sad :-( I need something with a bench seat in the front. Sophia has grown out of her infant seat and her bed seat, but she still can't sit up. Primary Children's is providing us with a special harness. She will lay down on the bench next to me. That makes me happy :-) Also I'll probably get to drive a truck. That makes me happy :-)

 The last couple days I've been going through boxes of clothes. It's made me nostalgic. It's made me happy. It's made me sad. Sophia and Max are into the clothes that Michael and Sarah were wearing when Jason and I met. That makes me nostalgic :-) Having growing children, that makes me happy :-) Remembering that when Sarah was wearing these clothes, she was running all over the backyard... and realizing that Sophia won't be running in them. That she won't need the shoes. That makes me a little sad :-( Getting out the 12month box when she wasn't supposed to make it to her birthday? THAT makes me happy :-) :-) :-)

On the subject of therapy

     I don't know that any parent in our situation, when asked how they are doing, would say "life is great!" or "we're doing awesome!". It's not... and we are struggling. Every parent in our situation is. My support group would agree. We all have to try really hard every day. Like mentally treading water, all the time. And I'd be lying if I said that there weren't some days, where I didn't try at all. There have been days like that. Where I've given in. I'm not proud. I'm always trying to do better though.
     So. If my back is stressed I see a chiropractor, my teeth hurt a dentist, illness the doctor, etc. There's nothing wrong with going to see somebody who knows more about what you're dealing with than you do. I like getting advice. I'm not omniscient and I like getting solutions to problems. It makes life better.
     Personally I've been going to therapy on, and off, for 9 years (don't judge ha! ... I've been through a lot 😏.) When I first started, I was always saying "my therapist says this" and "my therapist that". I was living by advice and learning through therapy. It carried me through some very difficult times.
     Unfortunately those times look like a day at the beach now days :-( Not trying to be melodramatic, it's just true. So now that we have respite we're both going to be going back regularly. I might occasionally reference that I (or we) have been.
     At home Jason and I are often interrupted by emergency's. I don't know if this will make any sense, but it feels like my brain is being wired, to not be able to focus. If things with Sophia are calm for too long, my mind starts to jump. I can't relax. I wonder if you can become a.d.d. by experience. I should ask about that-haha.
     Anyways soon I'm going to be trying something called EMDR. I hope it can help my thoughts stay present, as well as get rid of triggers from past threats that no longer threaten me.
     I need all the "healthy" space I can get "up there" bc.....well..... I will be continuing to go through trauma. It's a relatively new technique so I'll post on my blog if it helps me. I'm super grateful to a wonderful nurse (medically complex children's waiver for providing her), and great babysitters for making this possible ;-)
     Lastly, if anyone reading this is thinking about therapy, forget the stigma just do it! A little piece of advice I always give though.....therapists are like chiropractors. A good one can heal you. A bad one will make your injuries worse. But they will all claim to be good, so pay attention to the results, and especially your gut! ;-) You'll be better for it! Going to therapy doesn't make anything more wrong with you than the next guy. In fact you'll probably be better off! ;-)

On a different and funny note, this video of Max will surely make you laugh! That kid is always good medicine ;-)

https://youtu.be/LcwpOxq6AuQ

Sarah's Bday Party

 A lazy birthday party day

 Sophie slept through it, but woke up just in time to say goodbye to Auntie Ahna :-)

The house is ready for Sarah's birthday party tomorrow. She turns 9 on Wednesday :-)

Other pics today...

 Sophie's first real toothbrush!

It's the little things that keep me going :-)

Michael made me this...

Sarah wrote me this...

And it snowed.

All in all a good day.

MASH

Had to take Sophie into the hospital to get some blood work today. Still trying to figure out what these new movements are :-( There were a lot of kids suffering from illness in the pediatric unit :-( It's terrible hearing children moan :-( Please everybody pray she didn't catch anything. I bathed her in On Guard water when we got home so fingers crossed! 

The great news from the hospital today, is we purposefully went on nurse Hannah's shift, and she got blood on the first try....again! She's SO talented! Yay! Sophie hardly noticed :-)

Then tonight I found time for some one on one with Sarah. She wanted to play barbies, a special kind of torture for me 😫. I was a good mom and played for a bit....okay a minute 😜 I had to change it up fast so I taught Sarah how to play MASH. Remember MASH?! Memories! Anyhow tonight I discovered it also doubles as a tricky way to find out who she likes at school!!!

 Max played too ;-)

Michael heard how much fun Sarah was having and asked to play MASH too ;-) Here's his reaction to getting the good life!

Everything was perfect for a while! Then in the same minute I swear.....Sophie threw up, Michael and Sarah started fighting (because they started figuring out who each other likes at school-HA!), and Max started punching people in the stomach for attention. Can we say bedtime?! Yes we can!

Last pics....

A picture Sarah drew for Sophie's projector today

And Max's busses :-)

Some things you can't control

Most of the time we almost just want to have answers about what's going on with Sophia so we can help her. Even if it's bad news. We can't control or change what is going on, but knowing helps us help her. So in an odd way sometimes getting bad news, is actually good news.

For a change today I was glad that we did not get an answer. I was afraid it was going to be what they were testing for (infantile spasms), but thankfully it is not! I'm glad because from what I read those aren't very easily controlled. So although we are still looking for answers as to what this new movement is, we are glad that it is NOT West Syndrome!

Waking up this morning....  :-)

EEG (it looks like she's in a copy machine huh)

Good advice (for everyone) from a book I'm reading: 

"What are the things you can't control in your present situation? What are the things you can and should control? How can you respond to them in a way that keeps God in the picture?" (from the book "A Different Dream for My Child")


Everywhere Sophie is, Max is also :-) If she's laying in front of the fire, he's pushing his bus on the fireplace...

 If she's in her cradle, he pushes a chair over to adjust her animals....

Or play her piano....

Great Grandma Hayes

Last night Great Grandma Hayes passed away. She was a really wonderful Grandma to Jason and a wonderful Great Grandma to our children. From the moment I met her, she treated me and the kids like family :-) Michael and Sarah were instantly her great-grandchildren :-) She always remembered to send them a birthday card with $2 inside and the kids would look forward to it. Until relatively recently she would often drive all the way down from Idaho, with Jason's mom and dad, for events that were important in our family. But my all-time favorite memory of her is something she said at our wedding. She pulled Jason aside and told him to "try to make this one stick"! Jason loves to tell that story for a good laugh! Good advice Grandma, good advice 😂

Trials Help Us Discover

"Our trials help us discover and prepare for the work Heavenly Father has for us."- Elder John C. Pingree of the Seventy

Today since I couldn't go to church I listened to a talk from General Conference. It was really inspiring. Elder Pingree said that our trials can help us discover our talents. What a wonderful idea!

https://youtu.be/y1sFYAFGesw


I can't decide which of these pics from tonight is my new favorite :-)
This one is so sweet of Mikey. And I especially love the curl in her hair :-)

Or Mason took this one. It really shows her personality :-)

Lastly, I don't really want to talk about this bc she's been doing so well. But she does seem to be having a new type of seizure :-( After watching a video I sent, her neurologist ordered an EEG. She didn't say this but I picked up on a couple things terms she used. I believe she is worried about West Syndrome/Infantile Spasms. Some of these kiddos have it. But we'll know more soon and I'll keep you posted.

More Family Coming!!!

I have four awesome siblings :-) 3 sisters and one brother! For years I have been the only one in this Southern Utah area....where we claim to be from! haha ;-)

Recently two of my sisters have moved significantly closer to where my parents and I live :-) My sister Holly moved from D.C. to Northern Utah. My sister Ahna moved from Boise to Bloomington (just outside of St. George). And today my Sister Amelia is moving here! They are setting up at Mom's temporarily... while waiting for their house to sell... and deciding exactly where to live! SO exciting! Now we just have to get Chris home and we'll be complete! Love my family!


Today was a lazy Saturday....
Sophia on a texture blanket made by a group of senior women in our church. I believe it came from sisters in California. She loves the fuzzy pink strip :-)

 Max and his Superman pillow....man that thing is getting tattered...

Sarah playing around in make up I handed down to her tonight (for fun). She's got her own drawer in the bathroom now. Awe, little milestone :-)

Just because you can't see something doesn't mean it's not there, pay attention to your feelings :-)

This is a picture of our backyard.....

 And this is a picture of our backyard yesterday......

 Every once in awhile these beautiful misty clouds will roll in and completely cover up that huge mountain in our backyard. Now I know the mountain is still there. I can feel the presence of the mountain even though I cannot see it. Just like I know that there is a spirit world. I've been lucky to have experiences in my life, where the veil was thin. I know the spirit world is there.  Just like I know that mountain is there. I believe that my loved ones and ancestors are in that world. I also believe they are working hard, preparing for the day when we can all be together again, and live in peace :-)

Tonight we got some more respite! Nurse Helen (the BEST!) came to watch Sophie... and Lindsay and Gracie came over to play with Max :-) (p.s. Lindsay Nicol is the best babysitter ever!)
Jason and I went to dinner with his sister Melanie and brother-in-law Layne :-) It was so nice to get out and act normal for a couple hours :-) We should have taken a picture! Thank you Lindsay and Helen we couldn't have done it without you! :-)

And look who got her toy today! She's been batting at these toys for a while but today she grabbed and held on... long enough for me to go get my camera and take the picture! Good girl!