Better Day Today!

Sophia had a MUCH better day today! I am so happy! I bet it had something to do with her priesthood blessing last night, and all the prayers :-) She had very few seizures and she was awake for 4 whole hours today! She must have known Daddy was coming home :-) 

 Sophia today...

 Glad Daddy is home! :-)
This is a real picture. Mason took it while Jason was tickling her. She really enjoys it. She gets SO excited.

And ANOTHER seizure medication...

Sophia had a hard day today. I lost track of how many seizures she had :-( the neurologist had me increase the med she is on to the maximum dose AND add another new medication on top of that. This is hard.

The bishop came over and gave her a priesthood blessing. He blessed her that she would get the rest she needs tonight. So for tonight I can take comfort in that. Her stats are good right now and she is sleeping peacefully so I will try to get some rest as well.

 Even so the day wasn't all bad. Michael found her tickle spot 😊 We have this new awesome video camera in her room and I can go back and re-watch any minute of the day....save sections of video, and take pictures from the video which is awesome. So I was able to keep that special moment.

I also was looking back through the day and noticed that I didn't look or act nearly as stressed as I felt on the inside....so that's encouraging. My kids still trail me around the house and I was still pretty nice to them so near as I can tell I'm still a decent mom under massive amounts of stress. Which was really reassuring. Sometimes I think we let the mommy guilt get to us too much. And it was really nice to look back and see that I was handling everything much better than I worried I was. Every mom should have a camera like this. Maybe with the ability to look back at the day objectively we would all worry less about how our kids will turn out.

Anyways how I feel at the end of this day is that no matter how hard this is, it is still a privilege to take care of her. I love her so much.

That's not the world we live in

Jason's always saying you don't have to look too far to find people who have it worse off than you. It's hard to think that there's anything harder than this, but he is right. There is. Missing children is always the first thing that comes to mind. Not knowing what happened to your child, that would definitely be worse. There's violence, abuse, war, kidnapping, etc etc etc.
Life would have no meaning without death---I heard that on a TV show the other night. And I thought how true that is. Of course we all hope that it will be when we are old and ready but...this not the world we live in. Remember the statistics from a couple posts ago? 1 in 4 children will lose a sibling or a parent before they are 18. 1 in 4! 19% of parents will outlive at least one of their children and 15% of babies don't make it to their first birthday. THAT is the world we live in. It's not a perfect world. But it wasn't ever meant to be.
I feel like I am in a holding pattern. Every day I'm trying to soak in her life, while simultaneously waiting for the worst day of my life to happen. I heard this country song the other day that says "you gotta live like there's no such thing as a broken heart." I need to try that. Plus I don't want my memories of her life to be sad. I can be sad later.
I can find the strength to do this by simply thinking about what I believe. I close my eyes and ask myself, do I believe that the church I go to is true? Yes I do. I'll never be able to believe otherwise because I've been lucky enough to have experiences that prove it to me. In which case there is MUCH comfort I can take in knowing that this will all be made right one day. Mortality was never meant to be easy. It's a test. I trust that Heavenly Father will make good on his promise (through the prophet Joseph Smith) that righteous parents will get to raise their babies one day. And in a much better world than this. How wonderful that will be!

Here's one recent picture...

And these are from today...

Meeting Her Family :-)

Catching up on the May 21st post. 
Sophia met some more of her family that weekend :-) 

Aunt Holly

Maylee calls Sophie "Fophie" ;-) It's adorable. And what's really beautiful is how much she loves her ;-) Every second that we were at my sister Amelia's house, her daughter Maylee was concerned about where her "Fophie" was and wanted to be right by her almost every minute. And every time we left, even for a short time to the store, Maylee would cry so hard. It was very dear how much she loves her "Fophie" with her whole heart :-)

Cousin Maylee and Timothy (she'd already met Aunt Millie ;-)

 Cousin Katelynn

 Cousin Evelynn

 Cousin Brooklynn

 Cousin Charlynn

 Cousin Travis

Cousin Christopher

This was super sweet. Sophie's cousins were so proud of her that they ran around the neighborhood bringing their friends in to meet her :-)

She also met her Uncle Ben, Aunt Kaila and Uncle Nate, who I swore I took pictures of but can't find....so sorry guys!

Now pictures from THIS weekend...

And apparently Michael wants a mow-hawk this summer!!!

Lastly I said I'd tell you about the pharmacy fiasco on May 20th. But it's no longer fresh in my mind so I'll just tell you that through a series of events and miscommunications I found myself in a parking lot crying in my car because (thanks to anyone who has ever been deceitful to score drugs from a pharmacy) I wasn't going to have the medication over the weekend that Sophie needed to help with her seizures. However, my faith in the human race was restored thanks to a very kind pharmacist in my sister's town who found a way :-)

And I'll end today's "catch up" post with a beautiful random pic of Miss Sophie playing with her Dad :-)

Great News

As far as I noticed Sophia did not have one seizure today. Great. Day!

Sophia's name

I always thought it wasn't for me, this trend of people giving their babies two middle names. Anyways I totally changed my mind when I simply couldn't leave any of these names out! They all mean so much to me, and I think they sound pretty together. 

We were fairly sure of her "names" when she was born, but we hadn't decided for sure yet. On her second morning, we didn't know yet that she was celestial, she was in the NICU. Jason was going to give her a blessing. She needed a name to get a blessing. And that's when we decided for sure :-)

Sophia. Sophia is a name we came up with when Jason and I fell in love :-) And she is a perfect representation of our love :-)

Jane. After my Aunt Mary Janice :-) Who is awaiting her return to the other side... (even though we didn't know Sophie was terminal when we named her).

Marie. After Jason's Mom. The best Mother-In-Law in the world ;-) Truly. I got so lucky :-)
So there you have it.
Sophia Jane-Marie Hayes

And here are the rest of the professional pictures...

The ER

:-( Sophia wanted to take a little trip to the ER this morning :-( we went for three reasons 1. Pretty big seizure and stats going all over the place, 2. Breathing trouble, 3. A high-pitched cry.
She gave me a really good scare, but naturally as soon as we stepped into the ambulance she calmed down and everything was perfectly fine :-) So I walked into the ER holding an adorable sleeping baby with perfect stats :-) It was only a little embarrassing :-) Most important thing is that she's okay. She's still having seizures and we're still trying to get those meds right... but we'll get it ;-) The breathing trouble seems to be a side effect of a medication. And the high-pitched cry is what they call a "neurological cry", I just hadn't heard it yet ;-) Once again going to the ER was a blessing. I'll explain later 😇