Sunday, December 28, 2014

Christmas Part Two

(Sorry this is months late!  It was all written, just sitting here in my drafts, and I didn't realize I'd never posted it. So for memory's sake, I'm posting it now.)

I think every family has their own little traditions when it comes to Christmas.  Usually we have "elfie" come and bring tiny presents every day for the 12 or 24 days before Christmas.  (Don't confuse him with Elf on the Shelf.  My mom did this years ago, and I'm carrying on the tradition.  The "elf" is actually a lion with a Santa hat on...so...).

But this year I was a bit of a loser and didn't do Elfie.  In fact, for whatever reason, I wasn't in the Christmas mood at all.  I'm ALWAYS IN THE CHRISTMAS MOOD when it's Christmas.  Usually I'm one of those weirdos that put their Christmas tree up right after Halloween.

(I know, I know.  I see people comment on FB every year about how Thanksgiving is getting overlooked since people are heading straight to Christmas.  It's what I used to think too.  But then my friend in Australia told me one year how she was putting her Christmas tree up after Halloween, and it was the first time that it occurred to me that we get to celebrate Christmas LESS because we celebrate Thanksgiving *and think we have to wait*.  So, I thought about it more, and I thought, "Gosh freakin' darnit all!  Out of everything in the whole world to be grateful for, wouldn't Christmas be a big thing to be grateful for?"  So, we started putting our Christmas tree up right after Halloween.  And, you know what?  It really adds to Thanksgiving.)

So, anyway, I've been struggling a bit with all the emotions of everything our family has gone through the past couple years, and for whatever reason, Christmas brought it out a lot more.  It made my normal desire to get all ready for Christmas a lot less than normal.

When the kids started asking when we were going to put the tree up, we put it up that following weekend.  We also put it up where they wanted it - upstairs between the playset slides.  But hey, they liked it! 



Decorating the tree was nice and adventurous when I put the lights on it.  Climb up part of one slide, walk behind the tree, step onto the other slide at about half way up, try not to fall down the slide, carefully slide while standing, walk around in front of tree, climb on the first slide again...rinse and repeat...over and over...until tree has all the lights on it.

Then the kids decorated it with ornaments:


They weren't really in the mood to sit for a photo...so we're left with this not-so-good-quality of photo.  (The room was super dark - darker than it appears in any of these photos, but at least I got some!)


This is how a lot of the photos looked:


We got our kitten on Christmas Eve's eve (the 23rd), and then in our family, on Christmas Eve, we open up presents from everyone.  So, we did that. 





And then on Christmas Day, Santa brought a few more presents via their stockings.  

This is Ella (yes, she's wearing the same clothes as yesterday because she does that) mourning over waiting a few more minutes to open presents:

And then it was time to open them:

Like all people do when they receive a new present, she flung it over her shoulder to smash it on the ground.  She was trying to get the plastic off of her new little lady bug sleeping bag.

Tyler meeting his favorite present:

All the girls got Frozen dolls, which, despite their expressions below, they love them:


The kids were so super duper excited.  They made it a ton of fun.  Seeing their looks of excitement and joy are awesome...and knowing we're making memories for them for forever is probably the most fulfilling part of it all.

Tyler and I already gave each other our presents in October.  That's because we're so super cool and can't wait.

As for Emma's health, we still feel like we're at a standstill.  We're really hoping that soon we'll see improvement in her immune system.  We should have some detailed immune testing done soon, I think.  Cincinnati wants us back for her checkup, but I think we're going to have to do it through Dallas (costs way too much to go up there to Cincy every six months) - and that checkup should include a nice rundown on her immune function.  

Saturday, December 27, 2014

Christmas Part One

When Emma was having her bone marrow transplant, one of the things we used to help encourage her through all the crappy stuff was the promise of a kitten.  So, back in June, we got our first kitten.

We put a lot of thought into the breed and where to get the kitten from.  I thought about adoption for cats in need of homes, but we'd seen cats that absolutely hate children, and...we have five kids that will want to love and hold and hug on a cat.  It just didn't seem right or fair to do that to a cat.

Thus entered the Burmese cat.

They are "doglike" in their affection.  They love children.  They are very social.  It seemed like the perfect cat.

Here Tyler is hanging out with our first "kitten" Crimson:


But, five kids trying to share a cat seemed a little funny.  So, we started toying with the idea of getting another kitty and made the decision IT WAS TIME!!

We expected the kitty cat to be ready to come into our home the week after Christmas, so we were pleasantly surprised when the cat owner told us we could pick the kitty up the day before Christmas.  We decided to try to surprise the kids with it.  And, it worked.

The kids were sitting, watching a TV show when they heard the garage door open, their dad walking down the main hallway, and a tiny meow...over and over.  That perked their interest, and they all stopped and looked at their dad, wondering what was going on.  By the time they stood up, the kitty was in the living room for them to see.

Here's a video of it on FB (you don't need an account to see it - it's public):
https://www.facebook.com/video.php?v=422358071245108&set=vb.167386820075569&type=2&theater

The was taken right after the video.  The lighting was pretty poor in this room, so it's not the best, but Ella was so sweet with the kitty!  I love this with him.



This was taken the next day with him snuggling with my very favorite blanket (a gift from a friend during transplant).  He's so tiny.  He looks bigger in the photos.




He is so sweet.

He's also a little bit of a chicken.

He gets pretty nervous around the kids, so we've been taking it slowly.  Our other cat, Crimson warmed up to the kids a lot faster when we first got him.

We keep the cats separated for the most part.  We have them eat together (started through a closed door, then a slightly opened door, now the door is completely open).  And now they get little playdates.  Crimson does really well with it.  He loves to groom the kitten.  haha.  He gets a little too playful with the kitten, but he never growls or hisses at him.  The kitten gets a little scared and will hiss rarely.  So, we're keeping their visits a little bit short and taking it slow to try to go at a pace the kitten is comfortable with.


As I mentioned, we named our first kitten Crimson, which really doesn't make sense, considering he is a "blue" cat (aka grey) and has no red tone in his coloring at all.  But it was a name they all wanted, so we named him that.

Our new kitten does have red tone to his coloring, which would have made more sense to name him Crimson.  In the end, it made us decide to name the new kitten after the coloring of the first (basically naming them the names we should have named the other).  So, new kitten is named Ash, after the color of the first cat.  So, Crimson and Ash...

It's been super fun having a new little baby in our home.  The kids are sooooooo excited.  They sometimes have a hard time waiting for the kitten to not be so scared (mainly the little ones), but they still do such an excellent job.

Thursday, December 11, 2014

Emma & the Kitten & Weekly Infusion

I'm grateful for many things, and here are two of them:

(1)  That Emma lived to get the kitty that we promised she would get once she got home from transplant.

(2)  That the kitty is super snuggly.  Most of the day he hangs out like a doll...wrapped up and snuggled or held in someone's arms most of the time.  He doesn't try to get away (usually...and if he wants to go, we make them let him).  I just don't know if we could have gotten a more perfect little animal addition to the family.

Burmese cats are awesome.

(Even if I don't really enjoy it when he wakes me up in the middle of the night...or when he climbs in the fire place...or sticks his nose in all our cups...haha.  But, it's worth it to see how happy the kids are!)






Emma was laughing because she thought he looked mad.  But, he didn't struggle or try to get up at all! haha!  Made all of us laugh.

===

Today Emma had her weekly infusion of cidofovir.  She's been having this since May or something.  It's to try to kill off the BK virus because it was messing with her kidneys, making them pull liquid from her system constantly, even if she hadn't drank anything it was still pulling liquid from her system, making her at risk for dehydration quickly (she was always guzzling water like a crazy person to try to keep up with what her kidneys were doing!).

So, that part has improved, but the BK virus is stubborn and still hanging around.  The numbers are down to about 150,000 from 268,000,000.  Her BK virus had actually gotten down to 140,000, but it seems it went up to the 150k, and it seems to be struggling to get lower...or go away.

Her BUN and creatinine still fluctuate up and down, which were also signs that something was going on with her kidneys.  It's minor, though, so we don't really worry much about it.

Emma seemed to feel a little off during some of her infusion today.  Her nurse always checks her temp and blood pressure and O2 stats regularly during it.  So, I decided to be a paparazzi and take some photos during it one time:


That little "ball" that Chris (nurse) is touching with his left hand is what holds the medication and goes inside through her port on her chest.  First she gets a lot of saline for about 1.5 hours, then he hooks her up to that thingy.  It's nice because she's off of the IV pole when that is running for about an hour.  But then she has to get lots of saline after for about another 1.5 hours...putting her back on the IV pole.  The saline is to try to protect her kidneys from the toxicity of the medication.

If you ever wonder what goes on with the other kids in the meantime, here's what they did today:
- painted nails
- painted toe nails
- wore playdoh as beards and mustaches



When the nurse left, the kids got some little candy canes for their wonderful behavior (I say that a touch sarcastically, as they get a little stir crazy during the whole ordeal!).  And, it was dark and overcast, so we went on a walk...with hopes that emma wouldn't burn.  Emma's pink jump suit was a gift during transplant from a family, and she wears it over her normal clothes to keep her warm.  hehe.



























The boy...that needs a haircut...


Just because they are cute:

 Looking in our backyard actually:

Emma keeping hold of Ella since the street was a little busier than usual, and I have this paranoia that Ella will trip and fall and land in the street.  You can't see it very well (you can in a larger photo), but Ella's hair is naturally in ringlets:

Violet got cold, so Emma gave her the coat she had brought for herself, just in case she needed it.  They all walked hand in hand and/or side by side for quite a while (I had hold of Ella).  It's moments like these where it stands out to me just how much these little people have gone through...and continue to go through.  I hope it's a bond that lasts a lifetime.

These little people are my whole world.  I'm so glad I get to spend my days with them.  Sure, it'd be nice if we could spend our days in social settings now and again, but those days aren't now...maybe soon in the future.

I love you, my babies.