For 3 years now Savvy with so many of the "Liver babies" I adore have been a part of the Liver Families montage....it is an honor to watch our children grow...If you don't believe in organ donation, please watch this montage.  These children are a testament to the most precious Gift of all...the Gift of Life. 

http://www.onetruemedia.com/otm_site...fb&skin_id=601

I am telling you that Robert and I were both dropped on our heads when we were children!  That is the only explanation that I can fathom that would allow us both to be so freaking slow in figuring out Savvy's sudden behavior change.  Savvy has stopped napping.  She is tired.  Savvy looks worn out but her "numbers" are great.  Savvy has been a nightmare to put to bed at night taking us up to 3 hours when just a few weeks ago "Night Night" time was just precious!  We chalked it up to her being 3 and trying to push her boundaries. The child is exhausted...yawning and then this sudden burst where she will pop out of bed and start running around...it is like having someone with 2 personalities.  Then she will put her little hands up to say her prayers, close her eyes...then out of the blue legs start hitting the bed up and down ... up and down...full force...

Such a rollercoaster this liver journey takes us through...I am only sharing this because I know every once in a while I will hear from a family that has stumbled upon my blog because they like I were searching the net for hours upon hours after hearing the news...your child has been diagnosed with Biliary Atresia.  I keep writing this blog to share the hope...I know it was sucked out of me when I heard the news that my baby ... tiny baby..my perfect angel needed a liver transplant.

I was so overjoyed to hear about the decrease in Savvy's prograf...my first thought and feeling...I literally wrote back "WOOOHOOO!" lets get started.  Super Papi ... he is scared and stressed...his first thoughts and feelings...Rejection is word that scares us..."playing" with her medication is scary.

You know when your day starts off with your little girl taking a nice poo on her potty...you just know it will be a good day!  Our life in the last 3 years have been measured with poop so today...I just had a good feeling!

Drum Roll please......

Savvy is still sick...this thing is just lingering.  I knew that she would be dealing with this since she is immune suppressed but it makes me think about how it is going to be for her when she gets to school.  We are off for a "pokey" this morning...then maybe again in a little bit.  Not sure since she is sick...normally we don't want labs drawn when she is sick but at this point CHOP wants to look at the numbers and see if there is anything going on that they need to be aware of....and as Dr. Ponytail said...if it is anything we need to be concerned about it is better to know now.

We had her scholastic assessment done and we have to do another more in depth one.  Her hearing test she did not pass due to the fluid in her ears...simple enough but her speech is not to par for her age and blah blah...heck...she is alive...and she is happy...all we ever wanted for her. Genetically the kid is swimming up stream...I mean do you know who her father is? You do??? Tell me then.  Okay...just kidding..I don't want 1000 emails defending Super Papi....

Tomorrow is scholastic assessment testing (about 3-4 hours) and for a dose of fun we will throw in a doctor's appointment.  Savvy really needs to get her labs drawn but she hasn't gotten rid of the stuffiness soooo....depending on what Dr. Ponytail says..we may end our day with some "pokeys"...I have the lab slip from CHOP just waiting for the okay....I KNOW it sounds like more fun then one family can handle right?! The wonderful news is....we will have Super Papi with us.  He has taken the day to join in on the fun!  So maybe if we get out somewhat early...I say with a smirk since this is never the case...we will head to the beach and enjoy that cold sand...brrrrr....it actually is super cold today for Florida standards!  I actually saw steam coming from my dog when he peed this morning...ohhhh...the visual...not good! A picnic dinner at the beach sounds like the perfect way to round out the day. (AND YES, Robert before you come home and ask...I HAD to share the dog pee story...JUST HAD To!)

Since December, our special challenges have meant tens of thousands of dollars for the organizations listed
at iGive, groups just like COTA for Savannah A..  These challenges are our response to the tough economic times.
We're tremendously pleased that they're working, so we've put together another 24 hour / $5,000 challenge.

It requires your participation, but it is free and definitely easy.

We'll give COTA for Savannah A. a dollar for each person who joins iGive using the special link below and visits one
store via iGive between noon Wednesday, February 24, 2010 (Chicago time) and noon Thursday, the next day. 

Here's where you come in.  Send your friends, family, and colleagues the following link in an e-mail, tweet it, do a

Sassafras ... I mean Savvy is passed out!  Her obsession today...BUBBLES!  She gets obsessed sometimes with one thing and then it is the same thing over and over...today....bubbles!  I have sticky floors all over!  Besides bubbles she did have fun decorating the tree outside with Easter eggs and riding her tricycle....ah...she learned how to pedal on her own...so precious!

She is still sick...this thing is lingering...it usually does with her but she has improved a great deal.  The dr wants to see her prior to her finishing this course of antibiotics ... hopefully....she will be 100% when he sees her.

Speaking of antibiotics...I did speak to the Area Supervisor of CVS.  I have to say that he put on his Big Girl Panties on and called and I was impressed.  I was ticked that I had not heard from him. He did call today and left a message and when I returned his call I was clear that I had been lost as a pharmacy customer for him and there was no need to call back...but he did...kuddos!

I wrote them an email last night as soon as I was off the phone with the pharmacist.  To there credit I did receive this back from them today...

People make mistakes....last night is no exception and I got angery...but what BOILS my blood is pointing the finger!

I am about to throw away the bottle of medication for Savvy that we got at CVS...It was empty I figured we were done...but being a "Liver Mom" I double checked the date...it is suppose to be for 10 days and this was day 8.  I called CVS and I tell them the problem.  First person tells me I should have shaken the bottle.  I inform her that I normally do out of habit but there are NO INSTRUCTIONS to do this on this bottle...she tells me there are...uhm...NOPE...I am almost 40 and can read....

I ask to speak to the pharmacist and am told it is not the normal pharmacist and that I would have to come by in the morning and see what they can do.  AGAIN, I ask to speak to the pharmacist - I explained that I was not interested ina  Free ANYTHING...I wanted to speak to the pharmacist to discuss the effects of a medication that was given in a concentrated dose that was not prescribed....Finally.  I spoke to the pharmacist who actually listened....ah.....okay.  They are going to call the drs in the morning.