1.16.2015

Christmastime 2014

 
Sam ready to meet Santa for the first time
at the Taylor family party :)

One of my favorite pictures ever.
During bathtime, I caught Sam just staring at this picture
of his sister. Swoon!

Chloe and Rudolph understand:
the things that make you different
make you amazing!
I mean.... does it get any cuter?!
The Sunday before Christmas, we were planning on making it to church,
but the kids had different plans. Chloe was having a meltdown and Sam
was needing a nap and being extra fussy. The combination was too much
and none of us made it. Then an hour or so later, both kids were happier
than ever, smiling and laughing! I decided okay we may have missed church,
but I better get some pix in their Christmas best I bought for this year!
And I'm so glad I got them dressed even though we were just staying at home
because seriously how cute are these pictures!

Move over Anna and Elsa, there's a new ice princess in town ;)
The dapper-est little dude I've ever known.
But he will not keep hats on, no matter how cute they are!
 
This picture pretty much sums up
how Chloe felt about Christmastime
AND how Sam felt about it! Oh my!
There's just something about this picture.
I don't know exactly what it is,
but it makes my heart swell.
It's simple, but it's the details that get me.
So grateful for this life.
 
A few days before Christmas, Chloe was being extra fussy.
Oby decided perhaps she was just bored
and decided she needed Santa to bring one of her presents
a little early. So we told her how Santa sent an elf just to her
a few days before Christmas because he heard she wasn't feeling well.
She got this iCraze iPad stand and was able to watch Barney
on Netflix while she was laid up from her hip surgery.
She thought the elf, Santa's special treatment, the stand, and Barney
were all THE COOLEST things ever! She was happy...
for at least an hour! LOL! But seriously, I'll take it! ;)

Happy girl!

The iCraze was a hit!
Christmas Eve at my mom's. I am IN LOVE with Sam's face in this pic!

Oby and I on Christmas Eve.

This cutie patootie did pretty good on Christmas Eve for about an hour
(that seemed to be her max during the hip surgery recovery period).
She sure looked cute during that hour, though! But wouldn't look at me for a picture! Haha!

 
Is there anything better than Christmas Eve as a parent?
All that work comes down to this moment when you stand back
and see the gifts under the tree and anticipate the next morning.
Magic!
When we went to bed on Christmas Eve, there was no snow.
When I woke up early Christmas morning, it was a white Christmas!
We had been envisioning our home at Christmastime since the moment
we saw it and here it was. It was every bit as beautiful as I had dreamed.
Life is good!
Christmas morning was perfection!
Chloe did relatively well and Sam was crazy excited!
My parents came over for breakfast and we decided
that should be a new tradition.
One of Chloe's favorite Christmas gifts was this
"Awesome Book of Awesome Faces" that I made with Chatbooks.
You can see it here:
http://chatbooks.com/share/volume/IzOny6TbK9BiONAKIi7u8pdmtmVlDNksZBv5SZ0V

The day after Christmas, we took Sam out to play in the snow.
His first time in snow was a hit! He loved it!
Me too, Sam. Me too.

Hip Surgery

Varus derotational osteotomy (VDRO) with open hip reduction for hip subluxation or, as I call it, hip surgery. That's what was recommended to us when it was discovered that Chloe's hip was out of socket in October. I was told recovery can be rough for anyone, but especially fragile kiddos like Chloe. A lot of kids don't seem to have pain associated with a dislocated hip (which is astonishing to me). Well, Chloe did not fall into that category. She definitely had pain, sometimes excruciating and unbearable pain, because of this. Since I consider that unacceptable, we opted to go forward with the surgery. I cannot explain the turmoil I had over this and it did not help how utterly happy Chloe was the morning I took her in for surgery. I knew she was going in to surgery happy as ever and that she would definitely NOT be happy after surgery and didn't know how long it would be until she was happy again. It was heart wrenching! But I did it. Here is the journey.

Here she is the morning of the surgery. Sooo happy!
She made the sweetest friend in the waiting room.
Her friend was having bilateral exotropia surgery.
Her parents were a nervous wreck and I was glad to tell
them Chloe has had that surgery twice and that the recovery
was quick and relatively painless. Love tender mercies like that!
12/10/14 Facebook status:
The surgery went well. Chloe is still really out of it,
but seems well when she does wake up.
I even got a smile out of her when she heard Christmas music,
saw the Christmas storybooks, saw that I had decorated her room,
and made Olaf sing the summer song. I'm afraid her overall recovery
is going to be difficult, but if in the end she has pain relief, goal achieved!
Thank you all for your love and support, especially Team Sam (Nana & Grammy)
who step up to take care of him when Oby is at work and Chloe needs me.
Jazz players Trey Burke & Gordon Hayward along with Jazz dancer, Angie
stopped in to see Chloe. Hospital stays have their occasional perks ;)
Thank you, Utah Jazz!
Chloe had been screaming hysterically about one minute
before the Jazz players and Jazz Bear stopped by.
The timing was a bit magical, if you want to know the truth.
So glad it worked out because it sure made Chloe's day!
She was absolutely in love with Jazz Bear!
He gave her an autographed ball and poster.
They added to the room d├ęcor for our stay. :)
The hardest part about Chloe's surgery was seeing her in so much pain.
The second hardest part was being away from Sam and Oby.
Our parents, as always, helped out with Sam when Oby was at work
so I knew he was in good hands. Facetime helped and Oby brought
Sam up to visit a couple times. He is such a trooper and I have
come to believe that these experiences are developing Sam's
character in ways I can't even imagine. So even though it's hard,
I'm sure grateful. I believe this is the plan for us and there must be
reasons beyond which I could imagine that will all make sense
in the end so I'll just be grateful along the way. Mostly because it makes me happier.
Enough said.
I have some crying pix of Chloe during her recovery,
but I can't bare to show them. It is just too sad.
I will, however, show this picture showing the rash
she got around her eyes from crying so hard so often.
It was rough on me and I can only imagine how rough
it was on her to be in so much pain for so long.
She needed to be held basically all the time, day and night,
so Sam spent many more nights with Grammy and Nana
for a few weeks. I was so grateful for the help.

Sometimes, not often, but sometimes she was super happy.
It was usually in the middle of the night/wee hours of the morning, but hey,
I'll take it. It's always good to see this sweet smile, whenever that may be.

Here she is at her one-month follow-up appointment.
My Facebook post that day (1/12/15): We are at Chloe's hip surgery follow-up.
This is the happiest she's been (without narcotics) in weeks if not months!
Hoping we've turned a corner toward real recovery!
Does my heart good to see this sincere smile.

So it's only been a few days since that follow-up visit. It was just that morning when Oby and I noticed a big change. And we've been using fewer meds and seeing more smiles. She still has quite a bit of pain on occasion, but it is less frequent and easier to manage so I feel like we have turned that corner. She is starting PT next week and has an intensive PT session scheduled in two months. This means we are looking forward and hoping for PROGRESS. I will never, ever stop hoping. Though I can hardly say this is completely behind us at this point, I will say I feel like it was the right decision for Chloe and I'm glad it's done. It was not easy, but I think it will be worth it.

1.11.2015

California Trip 2014


I don't know that I've ever had such mixed emotions about a trip. It was the best of times, it was the worst of times. Truly. Chloe's hip pain was severe (she was scheduled for surgery two days after we got home), she started having new seizures, she was in a lot of screaming pain and just plain miserable....about 70% of the time. But 30% of the time, she was happy as ever! And it was Sam's first major road trip and first time at Disneyland. He was shockingly unimpressed with Disneyland, but loved watching movies in the car (believe it or not, we bought our first DVD player for the car just before this trip and he was simply fascinated by the concept), and loved being with cousins, grandparents, aunts and uncles at the rental house. It rained three out of the four days we planned on going to Disneyland. Like major downpour. It was a hard trip, but oh so worth it! Here it is in pictures.
 
The road trip there, we made it to Mesquite and stopped early to give Chloe (and us) a reprieve from the screaming and crying. Sam thought the hotel was the very best thing ever!
 

 
 
First day at Disney was probably the best one. The weather was lovely, Chloe was relatively happy, and we enjoyed riding the rides! I think Chloe's favorite rides that day were Dumbo and Peter Pan. So we rode those rides 2 or 3 times! Sam was truly unimpressed with the rides, but loved standing in line with family! :D
 

This was my attempt at a family selfie on Peter Pan.
Chloe had been happy and squealing up until this very moment.
And Sam was looking up smiling until I clicked.
Selfie fail! :)
 
Aunt Taylor captured this moment
while we were waiting for the big kids to get off
Indiana Jones.
 
Day 2 was a downpour, but Chloe was her happiest that day! We braved the storm for as long as we could. I'm glad we stayed as long as we did because it was one of my favorite times of the entire trip! We spent most of that day at California Adventure, which meant...Chloe's favorite ride, the rocking Ferris wheel! It terrified us as usual, which made her giggle and squeal even more than usual! Sam's expression never changed on any ride. What a crack up! Chloe's g-tube came out when Oby was getting her back in her chair that day after riding Monster's Inc. I had a panic attack mainly because I wasn't sure if I had the syringe I needed to fix it, but when I got her to the bathroom, all I needed was there and we got put back together no problem. Whew. But seriously, what a day.
 
 
 
3D glasses on the Toy Story ride!
  
This picture doesn't do justice to the amount of rain
and the surprising crowds despite the rain.

See? She was SO happy that day! She still had plenty of tears,
but these smiles made every tear and every poncho worth it!





Hard to tell, but Chloe is in her wheelchair under that umbrella.
Oby asked me if she looked okay.
I laughed and said it depends on your definition of okay.
Yes, it was functional, so that was what we were going for!
It looks like nighttime here, but it was only like 4 pm! It was just dreary!

Fun with cousins
 
The rainy day was rough on the entire group so we took the following day off since it was still raining. We just hung out at the house, swam (Chloe's favorite, of course and Sam liked it too), and went shopping. Oh and I took Chloe to the ER and she had three new seizures. Sigh.
 
Third day at the park was sunny and beautiful and Chloe screamed nearly the entire time! I was bound and determined to muscle through it. We took turns holding her/riding rides. Twice I went to take her home and when I would be walking back to the car, she would be all smiles! So I would try again and it would start all over. Here was the smile I was talking about.
 
 
 
The fourth day at the park was a Friday. We hadn't planned on going on Friday because we knew it would be that much busier on the weekend, but the weather changed our plans so there we were on Friday. It did, indeed, take three times as long to park, twice as long to get into California Adventure, and the crowds were insane. By the time we finally got in line for the first ride, Chloe was already done and screaming bloody murder. So we walked out and called it a day. Here is the Facebook post about my feelings at that moment, that I included with this pic from the first day.
 
My sweet little Chloe....I honestly believe she is an angel on earth and it is such a privilege to be her mama! She has been having new seizure activity and significant pain from a dislocated hip (surgery this week, thank goodness)... We shared a lot of tears this week, but we shared many more smiles. It can be a hard road we walk, but I'm grateful for it. I'm grateful for her. Oh the lessons she teaches me every day! What a courageous and beautiful soul! I thought we were going to the happiest place on earth, but I learned the happiest place is with my angel. As long as I get to be with her, it will be my greatest joy.

 
The best day of the trip, beach day! Huntington Beach:
 
Be warned. I am going to tell a pooping story. The blog is named TMI so, really, you've been warned twice! ;)
 
The night before, we had given Chloe a liquid glycerin suppository, which usually works almost immediately (Chloe poops right away). But she hadn't gone and we just chalked it up to being out of her routine and all the pain and seizures and just everything being completely out of whack. We have used these suppositories for 4-5 years and have to use them once or twice every single day because Chloe is unable to go on her own. We rolled Chloe in her wheelchair and Sam in the stroller and got to the beach. It was an absolutely lovely day, surprisingly not too crowded at all, especially for a Saturday, and both kids were super happy!
 
 
 
Sam took to the sand immediately. That boy LOVES sand! Who knew? So he was crawling around without a care in the world. We were supervising him and got Chloe in her swimsuit. We had just taken her diaper off and we didn't put a swim diaper on because they are only for poop and Chloe, like I said, hasn't gone poop on her own most of her life, but especially the last 4-5 years. She had been in her swimsuit without a diaper on for maybe 3 minutes when Oby picked her up to carry her closer to the ocean and felt...a giant poop! So basically the perfect storm of Chloe randomly pooping on her own (probably just a majorly delayed reaction from the suppository the night before, but that is still completely random because there usually is NO delay), and just that short time when she didn't have a diaper on and we didn't have the proper supplies to clean up. It was a big brown mess for a minute! LOL! But Oby's sister, Taylor, helped with Sam and Oby and I managed to get things taken care of pretty quickly. It was just honestly the weirdest thing! We couldn't believe it!
 
Okay, last poop story for this post! Ha! So then we took her down to the water and let her sit in her bath chair. This was perfect because the water was too cold to just let her be in it with how skinny she is, but just having the waves roll up on her was okay and she absolutely adored it! Sam wasn't too crazy about the water, but I'm telling you he was in LOVE with the sand! He's my little sand man. Everyone had a great day, we got lots of pictures, and it was a highlight to the trip for sure! Which was kind of funny because it was free and planned last minute. Isn't that just how it goes?!
 






The drive home was surprisingly not too terrible. We gave Chloe Dramamine, thinking maybe she was feeling car sick on the way there, and put sunglasses on in case the sun might be bothering her. We stayed in St. George and went swimming at the hotel there. It was a pleasant surprise and great way to end an emotional trip.