Thursday, March 5, 2015

That Liver...

Last week we had tiny P's appointment with a liver specialist to determine the cause and extent of her liver damage...


There are, of course, no answers yet, but we do know that her liver damage is extensive, and they feel that it may be that she has something called biliary atresia. She has portal hypertension, and the side of her liver is quite enlarged and causes her constant pain...


They ordered some further testing, so we went back to Children's this week for blood work, a clotting test, and a doppler ultrasound. There was much discussion of her "oddly shaped liver" and how it was "tilted strangely," and they took a long time trying to figure out where everything was...

Now, we wait to hear results, and find out what the next steps and tests will be!


Two different people at the hospital commented that tiny P must have been a good girl, and gotten a purple lollypop... she hadn't. Her lips are just blue, and the doctor viewing her ultrasound was much more concerned with her duskiness than any possible jaundice in her eyes. He was so concerned that he ordered a pulse-ox be brought in to check her O2 sats... which were at 67! No wonder she is blue!

We are looking forward to getting to the bottom of some of our girl's problems, and getting her more comfortable. It looks like many more tests are in her near future!


Wednesday, March 4, 2015

Wordless Wednesday...Pirate Of Love






Monday, March 2, 2015

Courage...

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged. For the Lord your God will be with you wherever you may go. ~ Joshua 1:9


Our girls have to be strong. They have to do hard and scary things to keep their hearts healthy, and they have no choice about having to be brave through painful, frightening experiences. And they rock it in a way that I am not sure I could...


There is an organization called beads of courage that serve these little heart warriors, and our girls, especially Little M, LOVE getting these beads...


Each bead is made of glass, and all the beads are beautiful.


They are a rainbow of colors, and each color stands for something. Yellow beads are for every overnight stay in the hospital, there are black beads for every needle poke, there are glow in the dark beads for x-rays and sonograms, and there are beautiful big glass heart beads for each heart surgery.



Tiny P has had more surgeries and hospital stays, so her string of beads is longer... little M is already planning which heart bead she will choose for her next surgery, and how much longer her necklace will be. I know. Bless it.



We are grateful for these beads, and the fact that our girls love them, and the story they tell.



There is a story in these necklaces, and it is a story of courage...


A beautiful story of our beautiful, courageous girls.


Sunday, March 1, 2015

Sunday...

The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you lived and lived well. ~ Ralph Waldo Emerson



Saturday, February 28, 2015

Heard...

Teef? You have teef, daddy? ~ tiny P
Yep, I have teeth. Do you have teeth? ~ the husband
No. No teef. ~ tiny P. Poor thing...

Mommy? Are happy you? ~ tiny P
Yes, I am happy! ~ me
Yay! I happy too! ~ tiny P


Here I am, mommy! I am a fairy, and I am here to make your wish come true! What would you like to wish for? ~ little M
Umm... I wish for Spring. ~ me
Hmm. Ok, mommy. That will take just a couple months, but your wish will come true. You're welcome! ~ little M. She's a practical little fairy.

Mommy, what can I do to help you clean? ~ little M. She's a helper now, and I love it.

Mommy, I have made you a shopping list... All of these are ingredients for the meals I want to make. ~ little M, going through her cookbook
What are you going to make? ~ me
I am planning to make lasagna, stuffed potatoes, and hummus. ~ little M. Oh my.


You two cheeks! ~ tiny P
Yes, I have two cheeks. Please stop touching them, ~ little M
Aww...only one nose! ~ tiny P
Yes. that's actually a good thing. ~ little M

Ahh! Ahhh!!! ~ tiny P
Why are you yelling? ~ me
Pants go off! ~ tiny P. Her pants fell down. Also, she is loud.


Mommy! Uh oh! Helpa me! HELPA ME! ~ tiny P
What's the matter? Are you ok? ~ me, running into the next room.
My bow! My bow fall out! ~ tiny P. Her hair bow fell out. For real. Serious business.

Mama! Where are you??? ~ tiny P, covering her eyes.

Oooh, booberries! ~ tiny P, popping one in her mouth.
NOT booberries. ~ tiny P, spitting it back out.
It's a grape. ~ me
Oh. A grape. Ok. ~ tiny P, popping it back in her mouth.

Who made this mess? ~ me
It was P! ~ little M
Yeah, I think it was P. ~ baby J
ME!!! ~ tiny P


What are you doing? ~ me, to the girls
I am measuring our chest scars to see who's is longest. ~ little M, with a tape measure
Oh. ~ me. Of course she is.

Mommy, that was my friend, G! At the hospital, can you believe it? ~ little M, after we ran into someone she knows at Children's hospital.
I can't believe it! I wonder why she is here? ~ me
Oh mommy, I was too astonished, and I forgot to ask ~ little M

I asked G why she was at the hospital, and she has a lump on her neck that is going to get taken out in March. ~ little M
Wow. Well, it was nice to see her, maybe we'll see her again when we're there. ~ me
OH! I forgot to ask if she was going to be inpatient or outpatient. ~ little M. Only a kid with lots of medical issues...



I am extra, extra, extra, extra angry! ~ baby J
Ok. I am still not going to play with you right now. ~ little M
If I was a hunk back whale, I would bite you right now! ~ baby J
Hmmm. That does sound pretty serious. ~ little M. She still didn't play with  him. Also... hunk back whale made me giggle.

Ring around the rosie, pick a lot of posies... ~ baby J, singing in the car

Mommy, am I pretty? ~ baby J
Yes? ~ me
But... I don't have a princess crown. ~ baby J
You're still beautiful, buddy! God made you perfect and pretty! ~ little M

I love you, family!! ~ baby J, throwing his arms around little M and the husband



Hold on, sassy pants, let me open the paper first... ~ little M to tiny P. Sassy pants...right on.

I am not just a fairy that makes all your dreams come true. I am also a warrior fairy that protects all the people I love. ~ little M. Bless.



Friday, February 27, 2015

Five Months...

FIVE MONTHS!! I cannot believe it has been five months since we brought our precious tiny P home...


She is sweet, and smart, and sassy...


And her smile makes all of us smile right back at her.


She is funny, and it cracks me up when she teases and plays with us.


She has brought so much joy to our family, and we already can't imagine our lives without her.


Happy five months, baby girl!