Black Market Baby Sales

This is how the conversation took place, no lie:

Emily: (carrying two baby dolls) I just had these two babies out of my tummy...and they're for sale!

Parents: (aghast) You're selling your babies?!

Emily: Yep! You want one?

Parents: Well, how much does one cost?

Emily: $1

Mommy: That's a bargain. Ok, I'll take one.

Emily: (handing me one of the babies) This is Alexia and-

Mommy: Oh, I wanted a boy.

Emily: (still handing me the baby) This is a boy, his name is SuperMarket.

o-O

She was in the process of selling the other baby to her but when she found out he planned to eat it, she shut the deal down.

At least she has a conscience...kinda.

Going to school and Baby Brokering is just exhausting.

Houston, Hearts and Hair Cuts

1. Houston
We made our trip out to Houston this week for Liver Clinic. Dr. F and Sarah were excited to see us in the outpatient setting, as we were to see them as well. I half joked, actually was super serious, that regardless of what the labs said, we were not staying...just here to say "hi" quickly followed by "BYE!" Praise the Lord, we were able to laugh that off because Bubby's labs were GREAT! Well, his bili was 0.0, which is super fantastico! Everything else was hovering around where it was the previous week, but a 0.0 bili?! Amazeballs. Yeah, you read that right. Amazeballs. So, the final opinion is this: SOMETHING, SOME THING (William Shatner-like) knocked out a huge percentage of his bile ducts last fall. And whatever that SOME THING was, is now under control and/or gone. Virus? Weird additive in his meds? Other infection? Alien life? We don't know. While I would love to know what the cause of this was, could it have been avoided, can it be avoided in the future; I am just so thankful he seems to be recovering and doing so much better. And, if I've failed to mention it recently, we do have the best liver doc and transplant nurse and team in the world. We aren't just another file, or another patient and their crazy parents. They do truly care. We are so blessed in many ways. Oh, and perhaps second best news, we are going to start weaning the steroids and possibly get rid of that second immunosuppressant!! Hooray!!

My Chuy's Date

NON-jaundiced Bubby.

2. Hearts
Yesterday was Valentine's Day. Emmy was way excited. She was so precious..."Valentine's Day is about LOVING each other!!!" They had a little party at school, in which her Secret Admirer, DaddyDaddy, had a special balloon bouquet delivered. The teachers said she was so excited to get a special delivery and made sure that her classmates knew that those were HER balloons from HER Daddy.






My precious Pumpkin.
Love her so much.











3. Hair Cut
Both kids were in desperate need of hair cuts. Emmy really only needed her bangs trimmed. Heck, I can do that. *Snip, snip* Saved $15. Weston needed a full blown cut, but I was possessed by the idiotic notion that I could do it like Emmy's. What resulted, I can only describe as if Mo (Three Stooges) and Lloyd Christmas (Dumb and Dumber) had a baby...

I messed up bad. REAL BAD. So bad, that when I picked him up early to get it fixed, they brought him out and at first I was like, this bowl-cut, mushroom headed child isn't mine. Oh wait, he sure is. The hair stylist was like WHAT DID YOU DO TO THIS CHILD?! So he got one too many valentines from girls in his class. He loves only the Mommy, ok? Don't judge me. You gotta do what you gotta do. ;-p
Happy to report that it is fixed, and he is a handsome devil again.

Chil'ren

If there had to be a reason for the horrible stomach virus of 2013, it must have been to help Weston's system flush itself.
While everything lab-wise is still abnormal, there was a HUGE improvement in his labs a couple weeks ago. His bili level was half of what it was before. YAY!

He is doing well and we are hoping to have a good check-up on Wednesday.

Yes, we are making the trek to Houston for Liver Clinic this week.

JUST FOR CLINIC! 

Ya heard?!

Passed out! He doesn't like to miss his nap.

Great pic of Bubby and giraffe from our Safari

Every time we get labs drawn we have to go to the hospital and register through the ER.
EVERY TIME.
Wes passes the time by trying on masks, playing with tissues and meticulously sanitizing his hands.

Emily...

GOOD LORD

She's been on a sassy, crazy bender lately.
She got in trouble for having a potty mouth (poop, butts, doodie, fart, etc) and had her baby doll taken away. 

This is what happened next, no exaggeration:

*throws self on floor, wailing and gnashing of teeth*
"I want my baby back!! I want my baby baaaaaaaaaack!"
(full on Sally Field, Not Without My Daughter)

Emily, when you go 24 hours without saying nasty things, you can get your baby back...blah, blah, blah.

*continued wailing and gnashing of teeth"
"I am not a mommy anymore!! Now I am just a regular girl!"

o-O

How could you not love this?

Stomach Virus and Exotic Animals

Seriously, never a dull moment in this house.
Billy picked Weston up from school Wednesday morning for diarrhea. Like BAD diarrhea. No fever, acting normal, eating and drinking...just terrible tummy trouble.

I was very wary of taking him to the pedi office because I felt very safe in thinking it was not C. diff and more than likely a virus that just had to run its course. Plus, Bubby hasn't received a flu shot this year, thank you massive loads of immunosuppressants. So, not really wanting to chance it. I talked to his doctor and as long as he wasn't dehydrated and it wasn't getting worse, we could skip the visit.

Thursday is still bad, but not as better as Wednesday. Friday is showing significant improvement from the days before. Enter school phone call from Emily's teacher. Emily is now vomiting. WHY?!

So, now it's Sunday evening and I'm pleased to report that as of this moment, children are doing MUCH better. Yay. I'm controlling my excitement because yesterday we thought they were much better and decided to venture out since GD was visiting.
Mistake. We were stuck in an exotic animal tour with a sickly E. :-( (Yes. I know I should have known better. Shut up. You can also project some of the guilt trip DaddyDaddy's way. *hmpf*)



See! She looks good. Looks happy! Who wouldn't want to see zebras and giraffes??





More so these guys and deer and some kind of four legged, rectangular pupiled herbivores than giraffes and zebras.



He was persistent



Very persistent. However, not nearly as much as the rude ass ostrich.



Axis deer and some other deer...but the best is the Bubby in the mirror



He had a GREAT time, except for the ostrich



Baby Girl, not so much.




Sweet bébés this morning

Prayers Answered!!

Nothing short of a miracle!!!
I got the awesome news that Weston's labs are so improved that we don't have to go in for treatment next week!!!

I also owe everyone an apology. I misheard the medication he was to receive. Basiliximab not Retuximab. I heard "-ximab" and automatically assumed the "retu-". It's still NOTHING I want Bubby to get, but is used only as a heavy duty immunosuppressant in post-transplants. No cancer uses. I don't know why this makes me feel better, it just does. Regardless, no "-ximabs" for the Bubby!!

Thank you for all your prayers and positive energy. I am not telling lies when I say I could feel the calm wash over me. I'm not saying I wasn't totally freaking out; but I would get these moments of peace knowing that God was with us. Faith is an easy thing to say you have...but actually practicing having faith is a very difficult task, involving letting go of control. Not something I do very well...

So, here's our most recent miracle:

Bilirubin: 5.7 (down from 7.4)
AST 161
ALT 134 (down from 151)
GGT 1649 (down from 2167)

That's over 500 points!!! It's still hella high, but WOW! Sarah says its the lowest it's been since November.

We are so very excited and joyous!!! Thank you for every thought; every prayer; every crossed set of fingers; chicken sacrifice (hey, we don't judge!). We couldn't keep it together without our amazing support system!!

Enjoy your beautiful weekend!! We sure will!!!


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The Deal

We've just been going along with minor adjustments to W's ProGraf for the last month.
Weekly labs.
No real changes to the values.
Very jaundiced little boy.
All too frequent pale/less than acceptable poop.

Then I was a bit blindsided Monday afternoon.

He has to have labs drawn Friday (tomorrow) and if there is not significant improvement, they want us to come in next week for a new medicine infusion. 

Rituximab

Chemo.

I want to vomit. Cry. Smash things. Scream WHY?!

I had a hard time with the addition of Imuran.
Every time we start a new immunosuppresant I freak and worry myself sick about cancer.
Well, now he could get chemo. 

I am terrified and angry and so, so sad.

As I am understanding, he is still trying to reject his liver. So, with this Rituximab it will basically target all his B cells (part of his immune system)...pretty much wipe them out and "reboot" the immune system.

Lots of prayers for a miraculous turn around.
We should know by Monday.

His favorite bath time activity.

Sweet Bubby

Bubby being Bubby

Wes and Daddy "watching" the football game

Loving on Emmy's baby

And for good measure...