Thursday, May 29, 2014

the bandaid

The day started off normally enough.  

We all got up.  

We all got dressed.

The kids went outside to play on the trampoline.

Soon, Ella had an injury.  Somehow she had got bonked on the area between her nose and her upper lip.

As every 2 year old demands, she wanted a bandaid.  Emma was stifling a laugh as she tried to explain to Ella that she didn't really need a bandaid.  But, seeing as how Ella knows best, we got her a bandaid.

Obviously I had to take a photo of it:

It clearly made her feel better.

I took a series of photos of her.  For whatever reason, it got funnier and funnier to me.

I won't bore you with all those photos since they look VERY similar to the one I just posted.

So, I had no choice but to do this:


When the other kids saw her, they wanted some too.

Luckily we have some left over medical tape that we don't use.  It's clear and perfect for fake mud-stashes (as T2 calls them).

And, soon they all had them:


As you can see, they are very serious people:



I give them mustaches.

They do my makeup.


My hair did itself.

It streaks nicely down my cheek.

Yep, that's the hot momma Tyler gets to come home to.

Try not to be too jealous.

Wednesday, May 28, 2014

conversation between the babies...

(If you're a friend on my personal FB page, you might have already seen this...)

Conversation today between Rhys (3 yrs) and Ella (2 yrs):

(I realize this might be funny only to me...)



They had just gotten out of the bath and were standing by each other in their towels. They both looked adorably cute.

Rhys was all lovely and smiley. She looked at Ella with such fondness and said, "I love you because you are my little tiny sister. You are so cute. You are..." and she continued on with all the reasons she loved Ella so much.

I watched them, thinking how precious the relationship between siblings can be.

Ella watched her for a moment, looking completely unimpressed. She didn't smile back, didn't look loving at her. She was very matter-of-fact and serious. To a lay person, which apparently I am, it sounded like Ella said to Rhys (who was still going on about how much she loved Ella), "You were rude to my chicken."

Rhys hadn't heard her, but I had. Holding back a laugh, I thought to myself, rude to your chicken? You have a chicken? Where are you keeping it? More importantly, how is someone rude to one?

Ella said it again, and it really sounded like that's what she said. Then she added, "Mommy, Rhysie killed my <insert word I couldn't figure out>."

Lucky for me, Ella said it several more times. All I got was, "Mommy, Rhysie killed my knees."

I said, "Rhysie killed your knees?"

Ella said, "Yes."

Rhys had still been going on about all the things she loved about Ella. "You're so cute and have such little feet---"

*record scratch*

She apparently finally heard what Ella was saying.

The smile went away. The sweetness was gone. She glared at Ella for accusing her of such horrid things and replied, "No I didn't. I hate your life now." And walked off.

<insert hysterical spit-all-over-the-children laughter from me>

Um...what in the world just happened? None of this even makes sense.

I'm pretty sure that's not what Ella really said, but it really sounded like it. It makes me feel like I'm living in the middle of a real life "bad lip reading" clip when I listen to those two talk to each other. (If you haven't seen one, they are pretty funny. http://youtu.be/5Krz-dyD-UQ)

And, that's a little insider's view of the life of a ninja mom.

And, it's also why, if you are a working spouse, and if you have a stay-at-home spouse, they might really, really, really want to talk to you a lot when you get home.

(I don't usually burst out laughing when one of them talks about hating someone...just fyi...it just was so unexpected considering what she had been saying before.)

Monday, May 26, 2014

Bruisers Week

This past week was the week-of-the-bruises.

First it started with Ella (2) running like a maniac with Rhys (3) chasing her.  She tumbled and fell and hit her face on the window sill corner.

It left her with quite the bruise.

I didn't take a photo, so here's a drawing I made (okay, the drawing of Ella is part of something else I'm making, so I'm really not crazy and drew the whole thing JUST to show the bruise):



Then Violet (5) wanted to create her own permanent make-up, or something, and she got herself a black eye.  It happened on our indoor playset when she and her brother (7) went down one of the slides together and somehow crashed, causing her to face to smack on the slide.  Luckily the cut was really minor, just enough to bleed a little, but it gave her a really pretty black eye.



Did I just say "pretty"?  Yes, I did.  It turned into a nice shade of purple and some pinkish color.  So, we thought, "Hey!  We should put makeup on her other eye to make her blackeye look like makeup!

So, we did:





And THEN...

It was the day after that that Violet somehow accidentally kneed Ella in the chin.

GAH!!




Then add in all the normal, less painful bruises between them all.

And, that is the drama of the bruises.

It's weeks like this one that I want to bubble wrap the children.

---

Ella & Violet together.  (Pretty sure it was just a few hours later that Ella got the chin bruise.)

It started off innocently, except for the sneaky look in Ella's eye:


One little nudge, and...


Down goes Violet:

Gets back up:

Tries to knock her back off:


It worked a little too well:

She thought it was hilarious:

They both were laughing a lot:


 And, then starts the fake falling.  They did this for a while:


 Proof that they are crazy:


 Bunny Ears:





---

I was cleaning in the kitchen when I looked and saw Ella and Emma snuggling together on the couch watching a movie.  It was so cute.







Emma helping Ella look at me - haha:

If Emma looks a little pink, it's because SHE IS A LITTLE PINK!  She is burning so easy.  We find it safest to keep her indoors most of the time.  Sunscreen, long sleeves, hats...nothing is working.  Post transplant, due to a combination of the medications and chemo, it has made her burn SUPER easy.  Like, 10 minutes in the shade, and she burns.  Riding in the car, she burns.

I need to update on our Facebook page.  I'll do that when I have more time.  For now, I better go organize the little girls' room while I can!

Saturday, May 17, 2014

baking a cake

Boo to you blogger!!  My photos were so much sharper and crisp until I uploaded them onto here.  I need to use that "web sharpening" feature in Lightroom.

Anyway, my kids really want to learn to bake and decorate cakes.  They always get to help with birthday cakes, but we don't do much beyond that because of the sugar.  But, thinking of how much they could learn and develop those skills if I let them do it weekly, I decided to let them as part of their schooling.  Cooking incorporates so many subjects too - math, reading, comprehension, etc...

(The only thing is that we will be tossing the cake after eating a slice or two.  They know this and totally fine with that.)

The ultimate goal is for them to learn to do it all completely on their own, no help from me, as a team.  Except I can sit the mixer out for them to be able to reach it since it's so heavy.  I expect for this time and the next time or two, I'll help some with more of it, but in the not-too-distant-future, I expect they'll do it all themselves.

I rewrote the recipes a bit, handed them the paper, and let them do as much as they could.  If they had questions, I asked them what they thought the answer was, then helped them figure it out.

They all put on their aprons, Tyler (the best reader - well beyond his age) was the head baker.  He read and directed everyone (in a very non-bossy type of way too!).



Emma was most equivalent to a sou baker..is that a thing? (see crazy face in background).


Violet was the "mixer engineer".  She made sure the mixer was locked in place, all hands were clear when it was time to turn it on, and monitored safety while it was running.  (Emma looks like she was about to cry!  Can't remember what was going on then.)


Rhys was the sneak-a-taste-of-the-batter-and-frosting-when-no-one-is-looking.

Ella was make-sure-to-watch-in-wonderment-and-then-cry-and-demand-attention-when-it's-least-helpful-to-the-situation.  She did pretty good this time, but she's really good at knowing when the least convenient time to start crying is (those with little ones know exactly what I mean!):


They liked to hold the top down because it was a bit wobbly at times.

The idea of little fingers reaching inside when it's on is always at the forefront of my mind.  So, everyone knew to stand guard for that.  :)  And, luckily, no little fingers tried to make their way in while it was on:

Then it was time to color the frosting.  They teach took a bowl and colored it.


Initially Ella was THRILLED that I gave her a bowl of frosting with a spoon.  She clearly thought she was going to eat it all.  It was so funny and made me feel bad for her all-in-one.  How disappointing it must have been to discover all she was going to get to do was stir it...



All their pretty colors...


Next goal was to figure out how to put it somewhere so they could all reach it and decorate it.  So, I took one of our living room end tables, and then pulled chairs around it for their frosting.

They had great visions for their cake.  It was going to be a cake of rainbow goodness and beauty.  Something for all to see and be in awe of their skill and talent.


Then they started frosting it. Except Ella who clearly was too good to put frosting on a cake.  haha.  Or wanted to eat her frosting instead of put it on a cake like everyone else.


You can see a little dab of green.  Violet tried to help Ella put some on the cake, but Ella was not interested.  She made it very clear that NO ONE WAS GOING TO USE HER FROSTING!

They even got the sides.

In the words of Violet, "This doesn't look like what I thought it would."  The kids all agreed, but they loved it and thought they did amazing.  And, considering how little help I offered, they really did great.  (They did manage to get Ella to put some green on...)

It reminds me of this game...a pastel version:

Anyway, it was fun!  My goal is to teach them how to make dinner too.  Simple casserole type meals that they can read the recipe and do themselves.  They help a lot with dinner...so soon they can do it.  WOULDN'T THAT BE FUN?!!

Wednesday, May 14, 2014

cidofivor

If you've been following us on Emma's Facebook page (www.facebook.com/ourlittletasteofheaven), you'll already know that Emma's kidneys have shown signs of dysfunction.  She has conjoined kidneys.  So, if one goes, they both go.  

Transplant is hard on the liver and kidneys.  When there was the option, and since she has conjoined kidneys, they always opted to save the kidneys and harm the liver (if there was no way to protect both).  Her liver numbers are still elevated from it all, but her kidneys had been good up to this point.

Meanwhile, her BK virus levels have made it up to 170 million.  The doctors are pretty sure that her BK virus is causing the kidney issues.  But, even if they aren't, her levels are high enough that she needs treatment.  So, they wanted to start her on cidofivor...which we did today.

The only downside to cidofivor is that it can cause kidney damage.  Nice.

It took four hours.  And when you are in a room for four hours, and you like to take photos, you end up with a lot of photos.  I'm only posting maybe 5% of them?  haha...

---

First, they access Emma's port.  They spray it with some cold spray to numb it.  Then they clean it.  Then they insert the needle.  Then they add the dressing.  It is quick and easy!  She has a port under her skin (kind of like a big circle with a flat top), which always has access to her vein, so they just have to poke through her skin, to get to her port.


They start with a lot of fluids.  It was maybe 200mL over 1.5 hours.

Then the cidofivor came in this bag:


Do you like how she's looking at me?  If you look at the IV pole, there is a little bag up top (cidofivor) and then the saline in the big bag under, which ran with it (or appeared to from what I saw).  The medication ran for an hour.  Then she had another 1.5 hours of fluids.

 She was making the face above, just to be funny.  And the face below, obviously to be funny:


Yes, she is capable of normal expressions.  And, in case you're wondering, those random-seeming-feet DO belong to Emma.  They weren't someone else's that were left in the seat or anything...

And, some more funny faces:




 
I did not notice the food on her face until I got home and looked on the computer.

It looks like she is relaxing, but her legs are sticking out in the air - nothing is under them.



She did really good.  She didn't seem to feel any side effects at all. We have no idea how it'll affect her kidneys...hopefully only for good!

She was down a pound again this time.  Not sure what's going on with that!  She's a good eater!

She'll have this drug every week until symptoms are better and virus levels are...not sure.  I'm not positive what they will require.  :)

Emma wanted me to take photos outside, especially of the sky...so here you go: