Sunday, January 27, 2013

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

Friday, January 18, 2013

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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Thursday, January 17, 2013

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. 
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.


Saturday, January 5, 2013

Sweet Bubby

Bubby being Bubby








Wes and Daddy "watching" the football game

Loving on Emmy's baby



And for good measure...



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