October 2008
October 30, 2008
Today, I am not feeling well ... not at all...I wanted to get up this morning and head out to vote...we have early voting in Florida and the lines are hours long. This is a GREAT thing in my eyes....I think I will go tomorrow ... grin and bear it ... Robert went yesterday and "only" waited an hour in line...how exciting is that?! What an amazing privilege we have in this country to hold a free election. I am an Obama supporter...as you can imagine health care is a very important policy for our family..this is one of many reasons I support Obama but with this said..I am excited to know that so many are lining up to vote. Whether you support Obama or McCain...the fact that we have the RIGHT to vote is an amazing freedom...the fact that we can openly debate our difference of opinions is an amazing freedom...I am so grateful to have this freedom and I will get out of bed tomorrow and cast my vote and for this I must thank all of the men and women who fight to protect our freedom...Thank You.
I will get out of bed tomorrow and vote and I do not care if I have to crawl but I will take my little Warrior Princess trick-or-treating tomorrow!!! This Halloween is so significant to our family...I will never be able to express myself properly. Savvy will always have to face the battles that come with having an organ transplant...she is not free and clear...we know this BUT to have this holiday come and have Savvy spend it like every other toddler in custome discovering the joys of Halloween decorations and pumpkin basket ... to have her spend it outside of a hospital...well....Halloween has never meant so much to me...Never.
Savvy is full of energy and just hysterical...she has had a lot of "quiet" time in her crib today since I do not have a lot of energy but that does not stop her from "reading" her books or "talking" to her dolls or discovering that if you go grab on to the bars you can SHAKE the crib and THAT is a ton of fun!
I keep playing a short video on my laptop that I took a year ago today...Savvy was at All Children's Hospital...this was the visit that scared the daylights out of us...she was soooooo sick and her PELD score shot up pretty high...this was when Robert and I decided that it was best for Savannah and I to move closer to CHOP. It feels like a life time ago and yet it feels like yesterday.
So tomorrow...as you look at all the decorations and you see all of the beautiful children dressed up coming to your door and asking for candy...remember...not every child has this blessing...so enjoy...enjoy the happy little ghouls and goblins and beautiful princesses that come your way! Have a Happy Halloween!
October 29, 2008
My little Warrior Princess is taking a nap..."Night Night" she tells me as if I had forgotten it was her nap time...she is just the most precious thing! Yesterday we went to the "pumpkin patch" .. it was cute and Savvy had the place to herself. She looked around at all of the squash and pumpkins on the floor and could not figure out why these people had such a mess! She started to clean up for them and pick up all of the squash she could (the pumpkins were too big but if she could have arranged them ... she would have!) and organize them in a line...I had to take a video of her "cleaning up" the pumpkin patch. I think I am going to put together a little video on this amazing Halloween....no worries...I will share!!! I always share!
Today, I read some beautiful words....if you go to sweet Emerson's COTA site (www.cotaforemersonw.com) you too can read her mother's words....a reminder....a reminder about what is important...a lesson that parents of sick little ones...very sick little ones learn...a lesson that they so wish they did not have to learn in such a harsh way...but one we learn...one that is taught to us through our brave little souls.. So, please take time...take the time to TRULY enjoy your children...to tell them how much you love them and want them....please do it now...today for we are never guaranteed tomorrow.
October 28, 2008
We are off to a pumpkin patch in just a bit!!!! Welllllll......Florida's version of a pumpkin patch....BUT although we do not get hayrides and we do have to pick our pumpkin from a table (I know...I know....it is not like up north!) we do get to wear LONG SLEEVES TODAY!!!! Yup...we are experiencing a cold front!!! WOOHOOO!!! It is almost to the point that I wanted to run back in the house this morning and put a sweater on! (I type with a smirk on my face thinking of my brother in North Dakota).
In just a few days SNOW WHITE gets to come out and play....ohhhh....I can not wait!!! Below is a picture of Savvy last year....what a difference a year......lots of prayers...an amazing medical team...the selfless gift of an organ donation...and a liver transplant will make to a little Warrior Princess!!
October 27, 2008
Wow...it is almost Halloween!!! We are so excited about this in our household!!! It is surreal because this time last year ... it was not good...not at all...and THIS year...because we received our "Gift"...we were able to surprise Savvy's Abuela on her 65th birthday...yeah...she said she got the most beautiful bouquet of flowers...Savannah (she was wearing a pink tutu with flowers in the tutu when her Abuela answered her door!).
Savvy had an awesome time at her Abuela's house...I mean AWESOME! She got all of the toys out from the "closet"...what my nephew Andrew referred to as the "store" when he was about 4 years old...he grabbed my hand and said, "let's go to the store"...I had no idea what he was talking about and then he took me to the closet in the spare bedroom with the toys my mom keeps stored for the grandkids. Needless to say...Savvy being the only princessa my mom has she has lots of trucks and cars to play with all weekend and she loved it!
She was full of besos and abrazos for her Abuela ...she danced and danced and even got to bed super late...I told my mom that no one enjoyed her birthday more then Savvy. This little Warrior Princess loves a fiesta!
Savvy did amazingly well in the car even though it took 5 hours for us to get to her Abuela's house...she did not nap at all (even though her Mami begged, pleaded and even...yes...even tried to bribe her thinking she would be cranky...but nope...no nap...where oh where does this little Warrior Princess get her stubborn streak from?????)
The surprise visit did throw the W.P.'s schedule off so she is still trying to adjust...she woke up several times last night .... thank goodness for the liquid gold!!!! I realized one morning that we actually own 4 different types of coffee makers ...yeah....That is crazy!! Crazier is that we actually use them all!!!
Well, Savvy is up from her nap and is reading her new favorite book, "Puppy Love"...she is so cute pointing at each "Daaahhhggg" and now she points at their noses too (since she is able to find her own now).
Savannah,
I write this note to you. When you are older I am sure you will one day read through Mami's journals. I have told you every day of your life and will tell you every day as long as I have a breath in my body how much I love you...but know sweetness that your Papi and I not only LOVE YOU more then anything we so enjoy having you as our daughter! We spent the weekend looking at you and commenting to each other how adorable you are...how sweet you are...how we love how you hug us...how we love how you run to your Abuela to give her a kiss with your little lips all puckered...how we love when you answer your Papi back when he says, "Princess" ... you say, "DAAADAAA!"...how we love when you tell US "Night Night" when you are tired...how we love your dimples...how we love your dancing moves, how we love your hair...how we love your eyes..how we love your ears, and your nose and that perfect little mouth of yours...how you make us smile pointing at every animal you see and saying "Daaahhhggg"....how we love how you say, "Moo Mooo" during the Old McDonald song....how we love to see you look so serious when you are "organizing" your toys...how we love when you "brush" Mami's hair... how we love the grin you get on your face when you put on your bracelets and purses and model for your Papi...how we love your giggle...and we love the fact we hear that giggle all of the time...how we love the way you clutch your Super Papi when you are unsure about something...how we love YOU...you make us smile every day...you make our hearts smile...thank you sweetness...thank you for choosing us to be your parents.
Love You Savvy today, tomorrow, forever and always,
Mami
October 23, 2008
We will not be updating for a few days...we are off in the morning to surprise Savvy's Abuela on her birthday....so we are hitting the road!! What better present could a grandma want then her Warrior Princess surprising her...can't think of a better present!
Shhhhh....it is a surprise....luckily...she does not have internet access :)
October 22, 2008
We have more questions then answers. We spent 4 hours at the hematologist today. The doctor was very late getting to see us so Savvy and I finally decided to break out...we simply went to the waiting rooms and played with their toys..we had to do this a lot during the day since it was a long one. The doctor was very nice and went over the past few months labs and the concern...we of course told her that the "C" word was our biggest concern...guess what....the "C" word may not be the biggest concern out there...my heart skipped a few beats listening to the doctor.
I am going to try to explain what is going on with Savvy...Savvy has a low white blood cell count but within the white blood cells we also have neutrophils. The count from her white blood cells have decreased SUBSTANTIALLY during the past few months from the high thousands to the very low hundreds ... not good since our white blood cells is what help us fight infections and protect our body against diseases... but more importantly her neutrophils have also decreased tremendously and one of the causes for this is that body is attacking its own immune system...when the doctor started with this explanation I blurted out.."an autoimmune disorder"....noooooo....don't want that!!! She said...yeah this is a possibility that we have to look at. The doctor does not think Cancer is a strong possibility because Savvy is simply acting fine...just like a toddler and children with Cancer do not act this way (Yeah...we heard this too about children with liver disease...so I am not comfortable with this part of the explanation but because her red blood cells have been normal this makes Cancer a less likely possibility)...okay...so we go through all this stuff of what it could be and her concerns....we are told that if she gets a fever we are heading to the ER for Savvy has nothing in her body really to help fight anything off in particular a bacterial infection since her neutrophils are so low.
We have to get labs done and then again in 2 weeks. We have decided to take the least invasive course of action and it looks like Savvy will be taken off of her Prevacid and she will "just have to vomit daily for a month" because Prevacid can cause these same symptoms....BUT Savvy's started to have issues with her white blood cell count before she was placed on Prevacid....okay...then Prograf may need to be weaned more (ah....this is keeping Savvy's liver happy...this is a big deal!!) or we will have to try to switch her to another immune suppression drug...ahh...you feel the headache starting to creep in now....NOTHING is going to happen without consulting all of her medical team so we head to get Savvy lunch and then back to get labwork done on her.
Savvy discovered she loves apple slices in ketchup....who knew? So back to the doctors we go...we go and get the paperwork done for the labwork and the nurses wanted to lay Savvy down....NOPE! Super Papi would not have that...he calls for me (in the other room with paperwork) and I run over and grab stickers as he is placing her in his lab....Super Papi explains that THIS is how the little Warrior Princess does her lab draws...no one is switching it up on her! The two nurses were amazed at how well she did....said she was the best patient that had had all day!!! The Warrior Princess was showing off...and even got a pretty pink wand from one of the nurses for being so brave.
Well, Savvy must have waived her wand and since she is a Princess she has these magical powers...for we waited for the lab results on her CBC and everything was PERFECT! We still do not have the more specific labs back and won't for a few weeks but her CBC was GREAT! The doctor goes ... "we cured her!"
Well, I wish it was that simple but it is good news!!! These labs may be an anomaly and when we get another set done in 2 weeks things may go back to "normal" which is abnormal or it may be that whatever was in her system for months FINALLY decided to work its way out of her system and these labs confirm this....which is a possibility since she was on Bactrim but the Bactrim was removed a while back. So we are very hopeful...we await the more detailed labs....we will redo her labs in 2 weeks....and we will continue to pray that this set of labs come out as well as the ones today.
We head off and have to run some errands...and Savvy gets to try her first lollipop today!!! Wooohooo she loves it! She had a few licks and just thought it was great...Mami picks her up and thought we would head to a nearby store when PUUUUUUUUUUUKKKKKKKKKKKKKEEEEEEEEEEEEEEEEEEEEEEEE comes out of her .... OH MY GOOODNEESSSSSS..... it never occurred to me that lollipops would have milk! Who knew??????? I have never given her any candy from a candy jar for there is always chocolate lurking in it but this time the bowl JUST had lollipops....I am trying to catch the vomit in my hands as I run out of the store and am literally throwing it into the bushes....I run into Jenny Craig and ask to use their bathroom as Savvy continues to puke and ask them to yell at my husband to get the Epi Pen I am not sure if she is going to stop breathing....Seriously, Savvy had maybe 4 licks of a lollipop and I thought she would stop breathing....it was surreal!
Robert comes with the pen and I was able to calm Savvy down and then clean her up as she finally stopped puking...I don't think Jenny Craig advocates puking as one of their weightloss remedies....we were not exactly a great commercial for them. They were so sweet and understanding ... turns out when we found the bag that held the lollipops that were in the bowl and it says, "may contain soy or milk"...well let me tell you they DID CONTAIN MILK! Ah.....I felt terrible for not checking...just NEVER occurred to me that LOLLIPOPS would not be safe for her!! Come on!
I grabbed paper towels from the bathroom and went back to the original store to clean up the mess we had made as I ran out and they were not so understanding in this store...not pleased at all...they had already cleaned things up when I got there....and I don't think we were welcome to do any window shopping...atleast not today! Hey....if you ever see a mother or father run out of a store with a child vomiting like a bad horror movie...it is not done on purpose...really....not planned....no need to give the mom nasty looks when she comes back in to clean up the mess...nope..not necessary....
So we headed home...and my little Warrior Princess has skipped her nap....not feeling well and yet I know she is exhausted....but she is playing quietly so I will let her stay up and play and simply start our bedtime a little earlier today.... a girl needs her beauty sleep....even the most beautiful of Warrior Princesses.
Oh....as a COMPLETELY different side note:
As I mentioned before I have become a Creative Memories consultant. The reason I decided to do this was to "pay it forward"...we have been blessed and continue to be blessed with many friends and even complete strangers helping us raise money for Savannah's COTA fund. I have decided to become a consultant so I can help others fundraise. If you know of anyone in circumstances in which they need help fundraising I will be happy to set up an "online" crop party for them and donate proceeds to them... I also plan to do the home parties and I can earn some extra cash this way but the main purpose for this is to help others the way we have been helped.
My first Creative Memories fundraiser is for our sweet Aiden. I will be having a crop on November 8th at the Summerfield Community Center...if you are interested please contact me but if you can not come because you are not in the area and want to purchase any items from Creative Memories please use the link below to go to my site and purchase the item using "Lisa Hawk" as the Host...this will credit his party...check out the site...it has everything from traditional scrapbooking items, to digital, to framing.
October 21, 2008
Super Papi is at the office so it is just my little Warrior Princess and I hanging out this evening. She is eating some "yum yums" as she so cutely puts it and I am sitting here in amazement on how much this child can put down! Funny...not even liver disease could keep her from eating!
Tomorrow we are off for Savvy's hematologist appointment as well as my follow up (that nasty lung thing ... just need to make sure it is all cleared out)..can't wait for them to tell me that I have overreacted and that the worst case scenario is not Savvy's case scenario...I want it to be "official!"...just hard to not panic a little bit when I have heard the "speech" before about the "odds being so small"...well we hit those odds once and do not care to do it again!
Well, my carrot face little Warrior Princess wants my attention and so I am off to give it to her.
October 20, 2008
Not a happy camper at the dentist....no...as soon as she saw the gloves on and the mask put on the face...our little Warrior Princess was in protest mode. She even started yelling, "all done..all done" as her teeth were being cleaned. The dentist is so nice and his hygienist...well...BEYOND sweet! Savvy was not as big a fan though as her parents....just can't explain to her that all of her sugary meds cause damage to her teeth and this is just necessary....boy, I wish it were that simple!
Savvy did leave with a smile...she got a token for the "treasure chest"...very cute... so she earned a little prize for her visit...THAT she liked!
She is eating her veggies now ready for nap time soon...she had a busy morning between the dentist and weeding the front yard (oh...how cute is she putting the weeds mom pulled out in her wagon!! Beyond cute!)
I am off to school soon and Savvy will be off to her nap ... then she has all afternoon with Suuuuuuuuuuuuuuuppppppppeeeeeerrrrrrrrrrrrrrrrrrrrrrr PPPPPaaaaaaaaaaaaaaapppppppppppppppppppiiiiiiiiiiiiiiiiiiiiiiiiii!!!!!!!!!!!!!!!! Yup! She is going to be one happy Warrior Princess!
October 19, 2008
Tired...tired...tired little Warrior Princess is what we had on hand today. Funny how things affect her...on Friday we went to visit Aiden at the hospital and on the way home our Warrior Princess puked all over...as soon as we heard the noise coming from the carseat Robert started to look for a safe place to pull over while I did the 180 turn around to make sure she was not choking....so there she was done...sitting with puke on her (Yeah...I have been holding back my puke/poop stories...miss them?) and she looks dazed...she goes to grab a piece of recycled "who knows what" off of her chest and I grab her hand so she does not "play" with her own vomit. Savvy thinks this is funny so she grabs it again...so I grab her hand again...oh....this is a GREAT game! She is hysterical all the way to the rest area where we were able to pull over and clean her and her car seat up....Vomit...no problem...can be a lot of fun!
NOW on the other hand if this little W.P. is tooo tired because she refused to take a nap....well...that is a different story....that is Today's story. She layed in her crib and talked and talked to Minnie Mouse and they exchanged stories like old girlfriends...Minnie had some funny stories cause Savvy would giggle periodically but not once did this child close her eyes and fall asleep. FINALLY, we gave up and took her out of the crib and then it began....cranky W.P....happy one moment....terrorizing her sweet innocent parents the next!
Yeah, some may say (ROBERT) that it is similar to how her mother acts but we all know that I am ALWAYS sleep deprived. So now our little Warrior Princess is asleep...after much cuddling and loving and the house is quiet. I need to study for a big exam I have on Tuesday....ah....sleep deprivation is not good for exams! Who knew?
Tomorrow we are off to take Savvy to her dental appointment...she was not a fan of the dentist 6 months ago...it will be interesting to see if things have changed...HOPEFULLY they have!! Then we finally have our hematologist appointment on Wednesday....say it with me ... NO CANCER FOR THE WARRIOR PRINCESS! That is all I want to hear....No Cancer!!! I doubt we will get anything from them on Wednesday but I have been wanting to hear these words for a while...just need to "officially" rule it out...do not want it on the radar at all! Again...NO CANCER FOR THE WARRIOR PRINCESS!!!!
Prayer Requests
I believe in the power of prayer and positive thoughts. I know that we do not all share the same religious beliefs but I do TRULY feel that the love that is sent out to others no matter how you choose to send it is felt by them...I ask those who continue to keep our little Warrior Princess in prayer and in their hearts and thoughts to hold these other little Warriors in them as well.
Sweet Aiden is back in the hospital. He was admitted yesterday after a heart wrenching ER visit. Please continue to keep him in your prayers and positive thoughts - www.caringbridge.org/fl/aiden
Our Princess Bethany had a rough day today...she is listed and her parents are awaiting "the call" any day now... Please continue to keep this little Warrior Princess in your prayers and positive thoughts -
http://www.caringbridge.org/visit/bethanysalmon
http://www.bethany.webeden.co.uk/
Little Warrior....Xander...is doing AMAZING! Please continue to keep him in your prayers and positive thoughts.
http://colbykids.blogspot.com/
Baby Emerson is still fighting strong like a little Warrior Princess but her little body has not had a break. Please continue to keep her in your prayers and positive thoughts - www.cotaforemersonw.com -
On a very happy note....I wanted to share with everyone for I am always asked about Sofia Elena...and I know so many keep her in prayer. I spoke to her mom the other day and she is doing amazingly well...I also got to see some pictures taken for she will be featured in Miami's calendar this year. She is beautiful and strong - almost a year ago she was fighting for her life along with Savvy and today she is home and awaiting the birth of her baby brother!!! It simply makes my heart smile!
Angelina - is doing well and is a big sister...how fabulous! She too was another little princess that fought so hard and is doing really well...these kids are simply amazing!
http://www.caringbridge.org/visit/angelinajean
October 18, 2008
I am exhausted...but a good exhausted. Robert and I stayed up late last night watching a movie and I woke up early to hit the community yard sale...woohooo for community yard sales! I sooo wanted to sleep in this morning and skip the whole thing but I had been looking forward to taking Savvy yard sale shopping all week and I was not about to miss it! I know it sounds weird...looking forward to yard sale shopping but this is one of the many "normal" mommy/daughter things that I dreamt about doing with my little girl when I was in the hospitals last year...simple things...and last night we went to visit our sweet Aiden who is back in the hospital...and so as the thought of skipping the yard sale crossed my mind it was quickly replaced by ... how lucky am I to not be sitting in the hospital with my child tonight...so off we went!
Savvy was soooo into it at FIRST....yeah...we got a bag full of tiny beenie babies for $1...she loved this .. then the next stop she got a plastic toy for 50 cents...she is so into it....then we got books for 10 cents each...loving my bargains!!! Savvy is loving a "gift" at every stop...we were hitting jackpots left and right and then ... then .... my little Warrior Princess decided that all of the walking and NOT being allowed to touch EVERYTHING we saw was just not worth it in the heat...yeah it was fun at 8 am but now...now it was almost 3 hours later and she saw no end in sight so .... I hear my sweet child in the car seat yelling "Night Night...Night Night"...oh my goodness this is SO funny! She is ready to get home and take her nap....she MUST be exhausted...so one last stop bribing my sweet child...I beg...just one more....but at this point I knew it was time to call it quits...so we head back home and beep our horn to see if the handsome Super Papi is home. I see him open the garage door to help us with our jackpot and his eyes get a little big..."Where am I suppose to put this stuff?" Well...in the garage for we have to clean it up but didn't I do good? I was sooooo proud of my deals! I mean 50 cents for a wagon so Savvy can help Mami garden and $3 for a Crayola art easel...come on...this is good!! I did not find any pink flamingos and I searched...boy did I search...I was on the hunt for a friend but otherwise Savvy and I found a lot and so look forward to the next community yard sale!
So, I am tired...I have to study...I have to do laundry..and yet I am happy...my girl and I spent our morning having a "normal" day...thank you...thank you to all of you who have prayed and continue to pray for her health...I thank God for this day...this wonderfully normal yard sale shopping extraordinary day!
Today is the Day!!
God Bless this donor angel and his family for giving Xander his second chance at life. Tears are flowing .... Xander is in surgery!
Update:
Xander is out of surgery!! He is officially Post-Transplant and NO LONGER has Biliary Atresia!!!! Wooohooo for the little Warrior!!! Prayers that the recovery go smoothly!
October 16, 2008
I am cleaning the house trying to keep myself busy and anxiously awaiting to hear some more news about Xander....it is surreal that we were in the same situation almost a year ago. I remember our first "call" so clearly ... calling Robert so he could hop on the first flight to Philly ... sitting in the dark with my baby girl and rocking her and hoping she would sleep just a little longer as not to feel the hunger she was experiencing...and then we learned it was not to be....then the day ... THE DAY... we received our "Gift"....so many emotions. Praising God for granting mercy on us and letting my baby girl have a chance to FIGHT for her life and Sadness...OVERWHELMING sadness for our donor angels family...knowing that they are living the nightmare that we are so desperately trying not to live...nothing easy about this day.
I look forward to Xander returning home to Florida...and for Savvy and him to have a chance to play together...so looking forward to this.
Savvy is napping...she has had an amazing day. She had her swim lesson and then to my surprise she recognized the "Golden Arches"...."Appi...Appi...Appi!" She was asking for apples!!! She gets them when we go to McD's....wow...not even two and already recognizes the Golden Arches!
I am so grateful for the day I have been blessed to spend with my child. So grateful. I recognize how fragile life truly is and today...today is what we are given...live, laugh and never forget to love ..
We continue to keep Baby Eme in prayer ( Emerson's site www.cotaforemersonw.com) - Fight little Warrior Princess...Fight!
Xander got "the call"
Please keep our little Warrior, Xander, in your prayers today...and for his potential donor and the donor family who selflessly have given this beautiful boy baby a second chance at life.
October 15, 2008
"You are so amazing...the beauty you are...soooo amazing"...yeah...I was watching our 4 month post transplant video montage.( Savannah's story ) ..again...and it is always so amazing to me! Funny thing when I was watching it this time...I noticed something that I had not noticed before...my baby girl's hair color has changed! It is funny because I had JUST heard about baby's whose hair color changed post-transplant due to the immuno-suppressant drugs and I thought it was such an unusual thing. Then I watched the video and it hit me...my girl has brown hair now...and it WAS pitch black before....interesting.
Our little Warrior Princess with her beautiful brown hair is super whiny today. She is not sleeping through the night...just waking up and cries and then falls back asleep within a minute or two but last night she did it A LOT and I think this is why the pretty little whiny monster has struck our home...whiny or not she is JUST SO AMAZING!
I was talking to my mom on the phone and Savvy was whiny and attention seeking and just being a typical toddler. I could barely hear what my mom was saying and I just had to smile and say, "Aren't you just tickled that her new liver is working THIS well!!! Look at all the energy she has!"...yeah...her liver is working amazing!!! She has been climbing on the table today, climbing into her toys (yeah...the ones that aren't really meant for this), she has tried to climb out of her high chair, and has bossed the dogs around like no other whiny monster could! and I am TIRED beyond words and yet soooo very, very happy! So happy she is home, so happy she has the energy to be a whiny monster...just so happy in knowing how blessed I truly am.
I learned of this wonderful event taking place in Virginia for those of you in the area....I pray that one day soon a cause and cure for Biliary Atresia is found...so other babies NEVER have to go through what Savannah has gone through.
THE BA 5K RUN & 1K WALK
SATURDAY, NOVEMBER 8, 2008 • 8 AM
CAMERON RUN REGIONAL PARK
4001 EISENHOWER AVENUE
ALEXANDRIA, VA 22304
The BA 5K Run & 1K Walk, presented by the Sydney Moss Fund, will raise money to continue Biliary Atresia (BA) research at the Johns Hopkins Pediatric Liver Center. Not much is known about BA, a rare and serious liver disease that affects newborns, and the only "cure" lies in a liver transplant.
Please join our efforts! Our goal is to raise $25,000 to support research leading to exciting BA discoveries. If we can find a cause, we can find a cure!
Presented by
October 14, 2008
Giggles!!! LOUD GIGGLES...Laughter...and more giggles...and MORE LAUGHTER...Big old belly laughs!!
That was what my little Warrior Princess was doing tonight as I rocked her to sleep...yeah... "sleep"
A little bit of milk dribbled from her sippy cup on her chin and she found it HYSTERICAL!!! Even more HYSTERICAL when I would wipe her chin. She is just so amazing...so very very amazing!
We are still waiting to hear back from the hematologist for an appointment...turns out it is not as easy as "just" making an appointment. They want to review her medical records prior to even making an appointment...as you can imagine there is a lot of reading to do with Savvy's records...so hopefully we will have her in and out of that doctor's office NEVER to go back real soon. I am trying to prepare myself mentally for the doctor is a hematologist/oncologist and as I have been told not to go "there" yet mentally I am not sure how things will be at the appointment seeing little ones battling cancer waiting for their appointment. But even if we have to face the worst case scenario...we know we will make it through...afterall, Savvy is THE WARRIOR PRINCESS! Robert and I have made "worst case scenario" plans but they are in the back burner...for now we simply enjoy the amazing giggles!!!
Oh...if I could have recorded that laugh tonight I would play back every day for the rest of my life...it was just the most delicious thing I have ever heard in my entire laugh!
I am hopeful tonight for sweet baby Eme (www.cotaforemersonw.com)...it looks like this little Warrior Princess is fighting hard and making good progress. If you have a moment please write her mother a message of hope and encouragement in her guestbook. It is so hard to be alone wanting so badly to trade places with your child ... so hard... our love and prayers go out to baby Eme and her family that one day soon they will be hearing the loud laughter coming from their sweet girl.
And our little Warrior Xander and Warrior Princess Bethany who could get "the call" any day now. Thank you for the love you so unselfishly give our children ... thank you so very much .. thank you!
As per unos.org:
Waiting list candidates
| 100,161 | as of today 10:25pm |
October 13, 2008
This child makes me smile..yeah my heart smiles all the time I am with her! This morning we had a swim lesson...she was so excited about everything EXCEPT the lesson...unlike the other times she wanted out...not in the mood but even with that said..I think she did really well! Oh....and looked precious with her tutu bathing suit.
We then went to Super Papi's office...this was the CUTE moment of the day...okay she had many cute moments but this was the BEYOND CUTE moment of the day! Our little Warrior Princess was tired and since Mami and Super Papi had some things to talk about she played with her toys and then we turned to see that she had taken some papers laid them out grabbed her toy and had made a BED for herself!! and laid in it!!!! She was ready for her nap and nothing was going to stop her...okay...it was a MOMENT...just too cute! That little Smarty pants!!
I wanted to thank all of you who continue to keep our little Warriors and Warrior Princesses in your positive thoughts and prayers....I know what it means to their parents for it means the world to me!
Sending you lots of "wov wov"!!!
Our Sweet Bethany's montage
See Bethany's Transplant Assessment online.
Please continue to keep all of our little Warriors and Warrior Princesses in your prayers and positive thoughts.
Prayer Vigil for Emerson White at 8:00 pm Eastern time
Please...If you read this...please join us in prayer for baby Eme tonight at 8:00 pm eastern time.
You may read her journey at www.cotaforemersonw.com ...but please lift this baby up in your heart.
KrystenaSun, 10/12/2008 - 3:27pm
(part of psalms 91)..."I will say of the Lord he is my refuge and my fortress. My God "in whom I trust".
~Lord we give Emerson to you. Please touch her little body with your almighty hands. Heal her from the top of her head to the souls of her little feet~
To all who love Emerson~
We have to lean on God - let us all join in a united prayer at 8:00PM EST/7:00PM Central.
Let us remind God of these verses below.
Let us have enough faith to be given what we ask for. Faith is a hard thing to have when things look so grim but please know God is real and God can and does heal. Let our faith come alive for our little Eme.
Matthew 18:19-20
“Again I say unto you, that if two of you shall agree on earth as touching any thing that they shall ask, it shall be done for them of my Father which is in heaven. For where two or three are gathered together in my name, there am I in the midst of them.
(we are agreeing)
Mark 11:22-24
And Jesus answering saith unto them, Have faith in God. For verily I say unto you, That whosoever shall say unto this mountain, Be thou removed, and be thou cast into the sea; and shall not doubt in his heart, but shall believe that those things which he saith shall come to pass; he shall have whatsoever he saith. Therefore I say unto you, What things soever ye desire, when ye pray, believe that ye receive them, and ye shall have them.
We believe God --- Give Emerson life
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I have yet to hold her little hand or touch her precious face. I long to do those things. Emerson is the daughter I will never have(thanks for sharing her Erika :). I have loved spoiling her from afar. She has my heart, that's for sure. I cannot imagine the pain of losing her before getting to hold her. I further can't imagine the agony Erika and family are going through right now. Emerson has a family that loves and NEEDS her. I don't see why God won't honor those things.
Let us pray,
Krystena
October 12, 2008
Yesterday I spent a beautiful day at a scrapbook crop. I went to this crop with a purpose...I wanted to work on Savvy's donor family album. I wanted to thank the family of our donor angel for each and every moment that they have given us with our baby girl. I could not work on the album alone for I just kept crying....thinking about how close we came to losing her and then about how GRATEFUL we are for having her and then for the pain the family of our donor angel is feeling in their loss and yet for the love they have shown complete strangers....so many emotions.
So, I went...I spent so much time looking at every detail thinking am I making it to simple or too ornate?...is the the right picture? Am I choosing the right words? Is this a good idea? How do you thank someone for saving your little Warrior Princess? How do you express gratitude in a way that is tangible? How do I share our story without details for we are not allowed to provide them without screaming....YOU SAVED SAVANNAH!! She is the most precious thing in my life...YOU SAVED ROBERT... YOU SAVED ANA...How????
So...I did the best I could...with my husband's help..who overlooked every picture I was choosing and every word...he too I know feels it...feels this .. this intense feeling...I do not know how to describe it... but I guess gratitude is the best word.
Well, the day was nice and I even decided to become a Creative Memories consultant. I decided to do this primarily to help others the way we have been helped time and time again. For those of you who know anyone who needs help with their medical expenses I will be happy to host an online "crop" and donate the profits....just email me at analiz0211@yahoo.com with Creative Memories on the subject line so we can make arrangements..when I have the website through Creative Memories set up I will share the link.
Afterwards I met up with my amazingly handsome husband...boy was he looking cute yesterday!!! I am a lucky girl! and my beautiful daughter chilling out at the beach...so Savvy has grown up to be an official beach bum...she is so at home on the beach...it is precious.
I am so grateful...so very, very grateful for today and all of the possibilities that tomorrow brings!
"EL Corazon" vs. "EL Tigre"!! COMING SOON!!!!
A Charity Sparring Match will be held to benefit Savvy's COTA fund and Marlon Pastora's medical fund who has also received a liver transplant due to Biliary Atresia.
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Ulysses "El Corazon" Ocon (and dear friend of ours) take on Eric "El Tigre" Castano.
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October 9, 2008
It was a whirlwind evening last night...warning I am in the typing mood...so this is going to be long!!!
As we drove into our complex Robert casually says, "oh there is the gator in the lake"...WHAT?????????????????????????????????? I know common sense in Florida is not to walk to close to lakes and to look for the birds....no birds...bad sign...but to actually see the gator oh....as we turn into the complex!!!!!!!!!!! So NATURALLY I yell...turn the car around...I wanna see!!! There he/she was .... chilling out in the water...so I grabbed my camera and took pictures and then I notice that the gator is looking at me...hmmmm....time to run back to the car...don't want to make the local news....."Scrapbooker mom could not resist picture of gator and was eaten alive clutching onto her camera!"
So we went gator watching .... not the normal evening for us!
Then our little fiesta girl was the life of the party!!! Last night we went out to dinner...an out of the way little restaurant that we could not imagine would be busy in the middle of the week...well.....there was a FIESTA!!!! Two birthdays were going on and there was a HUGE table down the middle of the restaurant with about 30 people and a woman on a microphone singing DooWop music! Our little Warrior Princess started clapping the moment she walked and shaking the tushy!!!
The nice thing was that other then this huge party the restaurant was empty so Savvy had a dance floor and boy did she need it...can't stop a little dancing queen when she feels the music in her soul! She had on pink little cowboy boots and a cute little jean skirt and she showed off her moves...it was so cute that the fiesta goers stopped their party to join Savvy's!! They all turned around and started clapping and cheering her on as she showed them her Super Papi's best 1970s moves that she has learned!! She was so darling! The birthday girl came over and gave us a huge piece of cake for Savvy (although Mami and Papi ate it since Savvy couldn't...yummy....raspberry filling! )
Savvy got a little pumpkin from someone else and just kept on grooving..this went on until our meal came out. Then she sat like a little princesa and ate her meal. We always ask the manager to read the ingredients on the boxes of what Savvy is being served and we have been really lucky so far that everyone has always been understanding and so far so good (although we always carry the Epi Pen) so we explained the whole allergy thing and liver transplant thingy and the birthday girl learned about it and then I guess the news traveled REALLY fast because I had left to clean the dancing queen's tushy and I understand that a Shriner came to our table. Robert thanked him and his father (also a Shriner) for all of the work they do for our children ... and they said they did not work with liver transplants...we know ... Robert explained that although they do not work with transplant kids we know of so many children whom they do help in a direct way..at the RMHouse the Shriner's help so many...and helping our children is the greatest gift any man can do.
My heart went to my dear friends at the RMHouse ... we thank you too... you help our children and it is the greatest gift any one can do...and those who volunteer their hours...they only do it because they already know there is no greater reward...I went to sleep last night thinking of all of them and thinking of Dan...Super NJ RMHouse volunteer...thank you for making my heart smile!
So as you can imagine the dancing Diva was EXHAUSTED when we returned home...YEAH! Maybe she will sleep in ... WRONG!!!!!!!!!!!!!!!!!!!!!!!! I think she may have been overly stimulated or drunk on pineapple juice (she had it for the first time last night and LOVED IT!) but she woke up at 2 am...then at 3 am then at 4 am...then decided she was not going to go to sleep...it was like having a newborn in the house.....tired Mami....and tired Super Papi that needs to head t to work....ahhhhhhhhhhh...no worries...the dancing queen woke up energized this morning ready for the next fiesta!
So for lunch this little diva has her dogs at her feet...not sure how they snuck in because we tend to separate them during meals...Why? Because she feeds them...and "we" do not feed them table food....she breaks all of the rules!!! So, I look up and see her giggling while her fingers our in their mouths and they lick off the preserve that she had on her toast...then she sticks her fingers in her mouth guess the doggies missed a spot....yeah...I am just sharing THIS story hoping someone reads it to my mom...Savvy's Abuela (hahaha).
So, as you can imagine it is naptime in the household ... even the dogs are sleeping...Super Papi is at work and hoping to hear more about Savvy's results. Turns out her white blood cell counts are still low...too low for comfort...this is the third lab in a row...not good. So we have to go to the hematologist ... can't imagine that the BLOOD doctor is not going to require more BLOOD.....errrr....but I was told not to freak out yet....yeah... our transplant coordinator knows me...and knows my fear of the "C" word... just could not handle that not now....not exactly a year after we had to move out of our home... NO this Halloween my little princesa is GOING to go trick or treating!!!! So, as I have often selfishly asked so many...familia, friends, strangers...please keep our little Warrior Princess in prayer...please let her continue to lavish in her good health and let her stay out of hospitals beds....please...
And our little friend, Xander, we learned that his daddy is not a match...same thing that happened to us with Savvy...please continue to keep him prayer...that his "Gift" arrive soon and that like our little Warrior Princess that it be the "perfect" liver for this little Warrior.
http://colbykids.blogspot.com/
I know that I sound like a broken record...I have no problems going up to strangers and telling them that the family of our donor angel saved our Savvy's life....please...it means so much...please share the stories of these little Warrior's share their stories so that one day parents like myself do not have to beg and plead and live with broken hearts for their child was placed on a LIST...a list...NO this is not acceptable!!!
Please become an organ donor and tell your loved ones.
As per unos.org - As Savvy was last year, Xander is this year...represented in this number...it is not just a statistic...
Waiting list candidates
| 100,084 | as of today 2:12pm |
October 8, 2008
Slowly but surely I am feeling better. This fluid in the lungs thing is not fun...but fortunately the pain is going away...but then when you live with a yummilicious little Warrior Princess it is hard not keep a smile on your face even if your body is not 100%. Savvy is so darn cute it is almost to the point of ridiculousness!!! I know...I am biased...but I do not care...I will share my bias viewpoints.
Robert aka Super Papi is amazing but we all know that by now...but when I am down it is so fabulous to have someone who can and does pick up the slack with no problem...so on Monday morning my little Warrior Princess goes off to work with her Super Papi (I understand his office looks like a sticker explosion hit it...) and then to the courthouse with him to drop off whatever it is that these Super Papi lawyers drop off in courthouses....so here is a cute story that was shared with me. Savvy has a new purse...yup..SHOCKING! Super Papi HAD to buy this Hello Kitty purse for Savvy when Mami was out of town because well...it was just so darn cute like she is...pink and glitter....what every Warrior Princess needs!
The two of them trot on down to the court house and the officers in the court house tell Robert that it is okay that she does not have to put her purse in the conveyor belt to walk through (the purse is empty)...but Savvy so use to going through airport security is ready, willing and able to place her purse in the conveyor belt walk through and wait for it on the other side....just made me smile...for I remember the first time we went through security at an airport with her she had a diaper wrapping her IV on her arm and now she carries a Hello Kitty purse....my heart smiles!!!
Then after coming home for lunch and naps...they get ready to drive Mami to school for I could not breathe very well and radomnly went into coughing fits with pain...so thinking it would not be a great idea to drive my little familia takes me to class...and they head to the park as I sit in class.
Tuesday morning again...I have to go to class ... which I could stay home but that is not the reality of my program...and in the back of my mind I am always thinking if Savvy goes to the ER then I have to reserve not going to class for that ... not because I do not feel well...so I go to class and I felt better then I thought I would ... meanwhile Savvy goes to the park with Super Papi and DISCOVERS puddles!!!! I know this because when I got back in the car she was wearing a different outfit....Yeahhhhhhh!!! A different outfit and it was not because of VOMIT!!! WOOOHOOOO for the Warrior Princess!!!!
Then we head to Chick-Filet for lunch (love this restaurant...they have hand sanitizer wipes in the bathrooms and play areas!!!! Kudos to them for this!!! AND Savvy is not allergic to their chicken!!! WOOHOOO!!!) So she is a bit overwhelmed at first with all of the kids playing in the play area so we take her out and have lunch...Super Papi gets a "work call" that he has to take care so Savvy and I go back to the play area...I sit and catch my breath while my now energized Warrior Princess starts "talking...I mean lecturing" the other kids...now it hurts to laugh but I could not help myself...she is the smallest thing in the play area and she is yapping along with such a serious note ... the other parents in the play room started to laugh too. She just makes me smile....this time last year...she was so sick....actually it was right before Halloween when we had our VERY SCARY final admission at All Children's before we moved up to the Ronald McDonald House to be close to CHOP...so a year later to have her "lecturing" the big kids with such ENERGY...just makes my heart smile!!!
So today, I am feeling much better...things still hurt but they are not as bad as they could be so I am happy!!! We have received Savvy's CBC results back from her "pokey" last week and have forwarded them to her transplant team...just waiting to hear back now on what the results mean....but meanwhile as I type I listen to my little Warrior Princess "talking" to her doll trying with all of her might to skip nap time... I just love it!!!! My heart is smiling and smiling BIG!
My heart smiles....not a day goes by that I do not think of our donor angel...our angels family does not hear me but I thank them daily for our "Gift"...for without this gift I know ... I KNOW...my heart would not smile today. Thank you for letting my heart smile...Thank you!
October 6, 2008
Savvy went to work with Super Papi today. I woke up to Super Papi asking Savvy to be really quiet on the baby monitor...too cute. He had dressed her like the cutest little preppy girl and she had a grin from ear to ear. He took her to work today because I had a really hard time last night getting any sleep....oh that darn breathing! Well, I have an appointment set...oh...what do I hear? The garage door just went up guess Super Papi and his administrative assistant came home from lunch...gotta go...I am sure his administrative assistant needs a nap and I need a kiss and hug before she goes "night night"!
October 5, 2008
Savvy went "night night" early today...she had a long day today. I went to Texas to visit one of my dear friends...Margarita's!!! Okay...well it was more like "Hi, I set foot in Texas and need to go to the nearest ER". The good thing about going to the ER with a friend is that even ER visits can be fun!
I am healing (turns out I have fluid in my lungs) but feel like dooodoooo big time so I am going to keep this brief...just wanted to share that Savvy is doing well. She greeted her Mami with a huge smile at the airport...it was the most beautiful site on earth to see her standing there with her Papi!!!
So glad to be home with my familia!!!!
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