It has been way too long since I updated...which in a way is great news!  Life has been good!  That is not to say that Savvy has not had her ups and downs...she has...we are both home today because she does not feel well but overall we have had more Ups!!  I have to post some pictures of her...you will be shocked on how grown she is! Or maybe that is just me...she reminds me everyday that she is a Big Girl...oh...she really is!

She is the little .. I mean BIG girl I have always dreamt of .. she is just the perfect fit to our little family and although she begs for a little sister (wouldn't be thrilled with a brother)..we are happy just the way we are!

Well, we have been fortunate enough to stay out of the hospital this holiday but Savvy is sick.  She had a fever since Monday and although that broke on Friday ... 102 was making us pretty nervous!  She was diagnosed with pink eye and pneumonia on Thursday...being immune suppressed Sucks! She hates her antibiotic...and for a child that doesn't complain about medications it is hard to hear her scream and cry and try to cover her mouth because it tastes so Yucky...she is amazing as always though...seriously, so Sweet!!!

She asked (even sick) how she can earn MONEY because the RMHouse in NJ has a little well and she loved putting coins in it and watching the coins go down the well.  I explained that the coins help the sick children stay at the RMHouse and EVERYDAY she will ask how she can earn money for "the Ronald House :) to help sick children"...God Bless this child...she has NO IDEA that she is one of the children this house helps.  I LOVE HER SOOOOO MUCH!!!

It has been toooo long since I updated Savvy's COTA site and I apologize.  Things are "calm" right now...I say this as Savvy lays upstairs with a fever of 101 but she is in her bed and Super Papi is on the "blue pillow" laying next to her and reading her stories.

Savvy had a heck of a few months going in and out of the hospital for a week at a time...the worse was when she started to bleed internally due to varices in her esophagus.  To make a long story short her liver and her natural veins had not grown with her so the blood in her body started to back up...by the time we had our first sign of a problem she required 3 blood transfusions while in the ER and then transferred to the PICU.

We took her to CHOP for a balloon dilation and things went bad the first night...a "simple" procedure turned into warnings of a clot in her body...placed on blood thinners while getting blood transfusion for bleeding...just crazy...but Savvy being Savvy was amazing through it!

We have been home about 2 weeks now...and things have been okay and then she got the boogies....time will tell what this will turn into if anything.

Savvy has been in the Pediatric Intensive Care Unit at Joe Dimagio since Sunday evening.  She has had a GI bleed(s)-she has had a procedure to band the bleeds - she has had 4 blood transfusions to date - it has been a bit of a rollercoaster for her little body the last 2 months and I am sorry I have not updated...she will not be home soon...nor out of ICU.  After she stabilizes she will need to go to CHOP....even if she continues to bleed she will need to get to CHOP.

Savvy went to the hospital due to dehydration.  She has been sick a great deal but just recently the vomit and poopies have been so we could not keep her hydrated.  We took a very sick little girl to the ER and ended up being hospitalized.  She was released last week and within 24 hours we were back at the ER and getting admitted again.

Savvy was discharged on Friday and again...she is back to the vomit and poopies...thanks to an amazing medication called zofran we have been able to keep her vomit away for 24 hours. Zofran is what they give patients who suffer from nauseau due to chemo...so it is a pretty intense medication...luckily it worked for us yesterday.  Last week, not even the zofran, or an injection of zofran could keep her from vomiting.

Today, I am nervous she is still pretty fragile...I took her to the pediatrician to make sure she was not dehydrated this morning and will be taking her daily until this "thing" resolves itself.

Savannah is 4 years old!

I wrote a few days ago about "the cough"...well it turned out that the day was much more eventful then expected.  As I was leaving to pick Savvy up from school I got a call.  The school was on lock down mode...no one in and no one out!  After a very long and frustrating day we learned that the police were informed that a man had planned a shooting spree at a local school....yup...not good...

The school system and the police did a fabulous job in keeping all of the children safe.  Savvy was thrilled with her "special" day because she got to eat crackers in her classroom (due to the lock down).  Savvy took a nice nap and then we headed out to Santa's Enchanted Forest (the Make-A-Wish invite).  I think I might have cancelled if it were not for the lock down...watching the news reports and the police around the schools with the gates closed...it was an emotional day.

Savvy is a Make-A-Wish child...last year we had an amazing time in Orlando due to Savvy's wish!  One of the things that our Make-A-Wish chapter does which is so unexpected and wonderful is send us invites for different festivities throughout the year for current and former wish children...they are amazing!

By chance EVERY single invitation we have accepted has come with a last minute apology from us for having to cancel our RSVP....Savvy gets sick on the day or day before the event....total bummer.   Today, I am dropping her off at school and I heard "the cough"...I almost took her home .. I was torn but she was so excited to be at school and her teacher had already mentioned to me to be "warned" half of the kids have been out due to being sick....Augh...it is par for the course...I know....but today...we are invited to attend a Make-A-Wish event and I really want to take her!  Fingers crossed that things are not as bad as I think they may be....you know I can be a bit paranoid at times...

I can't believe the holidays are almost here!  Savvy is so super excited about Halloween...the neighbors have started to put pumpkins up and she is just loving everything about the holiday season (especially the big "scary" spiders...go figure?!).  She is going to be Tinkerbell this year and wants to fly from house to house with her Super Papi whom she wants to be a bat (we shall see....)

I am beyond delighted to share that Savvy is doing really well...especially this week!  She adores school and up until this week has really only been able to go 3 out of 5 days a week on average simply because she gets sick.  It is almost a pattern that by Friday night the boogies start and by Sunday well...things aren't looking great so we have to keep her home.  Savvy doesn't care about the {boogies} she will cry though that she can't go to school to see her beloved teacher and her "kids"....so now we tell her that school is closed on those days.  This has been tough for her...she LOVES school.  This week she went to school on Monday, Tuesday and is there as I type..WOOOHOOOO!!! I think we might make a full week of classes!

Savvy had her first day of Pre-K yesterday and LOOOOVVEED it!  She got a smiley face on her first day and her teacher commented that she could tell how much Savvy had worked since her assessment...Mami is thrilled!  I did tell her teacher that Savvy loves Sid the Science Kid and does expect her to break out in a song and dance at some point during the day...a rap perferably...I am sure she will do her best.

Savvy was just as excited this morning to head off to school.  As soon as we walked into the cafeteria I got my hug and kiss and she ran to grab a book and sit by "Her Kids"...so adorable!  The only time she was upset was when I had to pick her up and explain that school is over for the day ... she wants school to be longer!  For now, a half day is just fine.

Savvy has a cold and we expect her to have some type of cold throughout the semester...we are getting our pokeys done on Friday so as long as her liver is happy ... the boogies can stay.