Sick again

Well I guess we knew this good streak couldn't last forever, but I was really hoping it would last through the holidays :-( There's something wrong with her again. The nurse said she was up all night throwing up and didn't hardly sleep at all. Her HR is high....her oxygen a little low....and she's whimpering in her sleep :-( I'm wondering if this is why she was having breakthrough seizures recently, maybe she's caught a bug :-(

Going to the hospital for a happy reason :-)

Last night I made that drive into the hospital for a happy reason :-) My cousin and his wife had their first baby :-)  She is SUPER adorable ❤😇

So, "Mom and Baby" is on the same floor as Pediatrics.... which is where we go when there is something wrong with Sophia :-( It's also right above the nicu. But it was a GOOD feeling..... going to that place for a happy reason instead :-)

I figured I might cry a little in the elevator on the way out......  but I just.....didn't.  I found out that I didn't need to. I was okay.  It was a little bit healing and I was glad for the opportunity to congratulate them :-)

Here's a super cute picture of Sophie from Saturday. I swear she knew I was taking her picture.

Sophia has had a rough go with seizures today :-( She's got such a good temperament though she smiles all the way through them.

HOLIDAYS!!!!

This weekend I learned that if we are leaving the house with Sophia for more than half a day, we might as well throw in a couple outfits and leave for a week! That girl takes up half my car! ;-)

The last few days have been incredibly busy, in a good way ;-) We had family visiting in and out Wednesday through Sunday. Jonah went through the temple (SO proud of him!). We had three Thanksgivings. It was crazy busy! Thank GOODNESS Sophia has been doing A-MAZING lately! I however am still trying to recover ;-)

Here are some pictures...

A Family Filled Holiday

Hey all! It has been an incredibly busy holiday weekend filled to the brim with family! It was perfectly lovely...Sophia did amazing....more pictures coming soon.

Sophie and Lucy on thanksgiving...

Not as rare as we were told

My support group has recently had an influx of new arrivals :-) Not new babies being born with PCH, but children who have incorrectly carried a cerebral palsy diagnosis for years. Apparently awareness about PCH among the medical community is growing, they are doing more genetic testing, and finding more children that have it.

Makes me wonder how many PCH children there really are out there? Further I wonder how many babies have died of sids, or failure to thrive, and it was really PCH?

Gets me thinking...how much do "they" really know about this? How much of what we were told us true?

How long will she live? What will she be able to do? We used to have very simple answers for that: less than a year, and nothing.

Now days we don't know what to say so we just shrug and say "don't know"
This living in ambiguity thing sure is teaching us a lot of lessons in patience :-)

Thank goodness we live in paradise...watching the sunset does mitigate some of the burdens of our uncertainty :-)

Oh and check this out. I found this shirt I made for girls camp 6 yearss ago, the first year Jason and I were married :-)

 and Max loving Sophie... ;-)

Beating the odds

Vision therapy yesterday. Check her out...intentionally grabbing that toy!

 And here she is tracking. Remember...she's not supposed to do this stuff!

33 going on 50 :-)

I had a lovely birthday yesterday :-) I turned 33, but I feel much older haha ;-) thanks to Jason and my family for making it special ;-)

How far I've come lol

So I was leaving the hospital on Wednesday morning and making my now "usual" pit stops to get me through, really any day in which we have to be at the hospital. And I thought of another one.....

You know you're a PCH mom when a used to be "vegan" can order from McDonalds without even looking at the menu! 😝 😫

Anyways that's all I've got for today. I'm not feeling very well so I didn't take any pictures today, but here's one I snapped yesterday of Michael after school :-) One of my favorite things is how Michael and Sarah come and find Sophia when they get off the bus  :-)

Fall Family Photo's

Thank you to my step sister Karen Redd for taking time out to take these beautiful pictures:-)

Drawing blood, speech therapy, and a new respite nurse!

Sophia had an amazing day :-) First of all we found Hannah, an incredible pediatric nurse who is really good at drawing blood. For the first time EVER Sophia did not feel the stick, we got it on the first try, and there was extra!
THEN she had an incredible speech therapy appointment today :-) She was imitating clicking noises with the therapist! She even showed her how she's been sucking on her fists :-)
AND we have found an extremely qualified daytime respite nurse who has worked with children with brain disorders before! :-) :-) :-) Sophia still has her "nighttime mommy's" as I call them, but now we have 13 hours a month where an RN will watch Sophia so that we can take a break and catch or breath.
PLUS the icing on the cake is she hasn't thrown up in 2 days! :-) Woohoo!!!

Sisters...  ;-)

Fall in our backyard...

Girls Night!

Sophia had a great time at girls night out!

As for me I really enjoyed seeing some old friends :-) I also enjoyed answering questions about Sophia. You know in a lot of ways being a Special Needs Mom is really an amazing blessing :-) The payoff is pretty huge :-)