June 2008
June 30, 2008
Our little Warrior Princess is sleeping and we hope she will sleep through the night...she had a very tough day today. It started yesterday when we were headed to do some grocery shopping and she did this "funny" contortion with her body..it was odd and we had never seen it before. We could not tell if she had any control to what she was doing...I do not believe she did...well it happen three times and then I freaked a bit and made Super Papi drive towards Brandon Hospital...she stopped doing it and we decided to hang out at a playground just 2 minutes away from the hospital...all was better for the rest of the day.
This morning I woke up to her crying and then after 2 screams she fell back to sleep...it was odd...she did this off and on all morning until she "woke up" at around 8 am....I don't think these two things had anything to do with what happened earlier today but it has just been a weird 24 hours.
We went to the doctors today for Super Papi...he has a busted shoulder...hmmmmm.....I am not suppose to say "busted" but that is how I describe it and it has been this way for a little while but this was the first chance we had to get him to the drs...we had a 2:30 appt and did not leave until 4:30....he needs an MRI....that is another story....during the visit Savvy threw up 3 times...it was odd for you know we are "throw up" experts over in this house...this time we thought that maybe we over fed her cheerios while we were waiting but I don't think that is the case...it was just a simple explanation for the time being...we went to the car changed her diaper and headed home. Well, she was really quiet so I thought she had fallen asleep in the car seat...we had just left the drs office and when we turned around to look at her Robert says..."I truly hope that is vomit on her"...and of course we knew it was not. She had diarrhea all over and the car seat...it was the oddest thing since her diaper was on just fine...
We pulled over at Dunkin Donuts (I will never see this store the same again)...and started to clean her up and her car seat etc... we took her clothes off and she had a rash all over her transplant scar...okay...starting to freak a bit...then we noticed it had spread down one leg and up her back...within a few minutes of observing her....(starting to freak a bit)....so naked baby and all went to her pediatrician's office...
After waiting for the dr (Dr. Wonderful was off) for about 45 minutes Savvy had "turned" back to normal...it was so odd...we went over the possible "suspects" with the dr and we will observe her of course through out the night....but it just sucks at times...as we held hands driving home Robert and I looked at each other and talked about how hard it is with our Sweet Savvy for if she had had a "healthy" babyhood we may not be so paranoid ... but we do not have the luxury of not being paranoid with her... to see her transplant scar with this rash is just scary...it is like a big ole arrow pointing at her liver...screaming....something is WRONG SOMETHING IS WRONG....just a scary 24 hours...
So we got home gave the Warrior Princess her meds, gave her a bath, I fed her while Super Papi cleaned the car and washed the car seat and for the first time in a long time we have ordered pizza...because we have not eaten all day and we are simply tired...we deserve a pizza!
June 29, 2008
My yummylicious Warrior Princess spent the day with her beau, Riley, and her future Mama-in-law (Yes...Dr. Julie...I know what you have said...but Riley just keeps getting cuter and cuter and I can't help but dream...).. She must of had the most wonderful time (i.e. taking all of Riley's toys and claiming them as her own) because when Super Papi walked in the house with a passed out little Warrior Princess the dogs woke her she stared at them for a second and then back to sleep as Mami took her shoes off...she slept for 4 hours!
Today, she is re-charged and full of energy...she has already managed to sneak a piece of her blueberry waffle to her "dahhhhgggg" Buddy...and has been playing all morning with the colorful beads that Super Papi brought back from the parade...he knew they would be a hit...and he was RIGHT! She is such a girly girl...it is funny to watch her put her "necklaces" on and her bracelets and oh we simply can not forget her purse! Funny thing is that her Mami has lived in sweats most of her life for obvious reasons so we can not figure out where she has learned this from....she does not even watch television....just interesting to watch.
She is growing up so fast and is "learning" just as fast! She now "cries" oh...an Emmy award winning cry from a good soap opera...you know a cry with no tears because we are just protesting like a diva...yup...I am hearing this diva cry when I say the word "No"...and I do say the word often...she will do her award winning cry and then try again and of course she hears that same silly word, "NO" again...and this time the second version of the "cry" has her little legs doing this tizzy thing...(I confess I find it adorable ... it is great what a child can do when all of their organs are functioning) so then I give her the "Mami" look and she gets removed from the situation...and she normally within a split second starts yapping away as if nothing had happened...
I have to go and enjoy my day with my little Warrior Princess and Super Papi .. it is a beautiful one ... well any day with these two is a beautiful one .. but today the weather is beautiful too!
June 27, 2008
Savannah had a great time playing at Super Papi's office today...I mean "working"...she is his administrative assistant afterall...I think nepotism had something to do with her job title. When we left there were post its all over the floor and a few rice chex crumbs pounded into the carpet (snack breaks are a part of the contract she negotiated with the bossman). She was so exhausted from all of the "work" she had to do in rearranging papers that she fell asleep before the car even pulled out of the parking lot. She woke up a bit whiny from her nap which is unusual for her so we will see what this afternoon brings us....
I wanted to give an update on some of the babies that we have requested prayers for:
Shaahed, Our Miracle Boy, is doing well...today is his 2nd Birthday!!! His mom created a montage if you would like to see it...it brought tears to my eyes...his yellow eyes, his big belly, the CHOP doctors, the cot in the hospital room...all toooo familiar...to see Nadia and her Mommy in the montage as well...well it is always hard because as we celebrate these little miraculous lives I can not help but get angry on how tough their little lives have been...for goodness sakes he turns 2 today...but I celebrate in my heart as I know his amazing family would want me too...I celebrate for today he is doing well and that is what we pray for ... good todays and better tomorrows...
http://www.onetruemedia.com/shared?p...m_medium=email
Nadia, Our Hope Child, continues to need our prayers...you can visit her site at www.babysites.com/sites/nadiamarie
Aiden will be going to Cincinnati on Saturday...you can read his update if you scroll down. He is an amazing little boy with an amazing family who continue to need our love and prayers.
Bethany, our English flower, Sam's little girl...she is amazing but her little body just keeps fighting her...please visit her site at: (Want to put a smile on Bethany's adorable face?...Bethany reads the guest book comments in her personal page..the first link..so if you have a moment please leave her a little note...I know from Sam that she loves this!)
http://www.bethany.webeden.co.uk/
http://www.caringbridge.org/visit/bethanysalmon
Brody and Taylor...our babies from RMHouse are doing amazing...Brody is so cute but then so is his older brother so no surprise there ... and Taylor ... she is beautiful beyond words...but again...her Mom is stunning. Brody went to a reunion at CHOP recently and I cried looking at his pictures so healthy!! Loving it!!!
Grandpa Pace is doing better but still needs our prayers...Grandma and Grandpa Pace have a long and steady journey...the entire Pace family is so beautiful and loving...when Savvy was pre-transplant every Pace sister contacted CHOP to try and donate a portion of their liver...that love and courage comes from Grandma and Grandpa Pace.
Savvy's bestest girlfriend, Sofia Elena, is doing very well! She is just about to learn how to walk...and her Mami, Ana, is expecting a little brother or sister. Ana recently miscarried and I would like to ask for prayers for her and the baby she is carrying.
Our USAIR friend, Lorraine Barta, also needs our prayers...we just learned that her lung cancer has come back...lung cancer for a woman who has never smoked...We met Lorraine and her husband awaiting a flight ... and within just a few minutes of meeting us she offered her home to us and when Savvy was at the RMHouse she came to visit the little Warrior Princess....an amazingly loving couple the Barta's are!
And a special prayer request from our Angel Lisa's mom, Simone. She has asked that we keep the grand daughter of her co-worker in prayer...please visit her site and keep her in prayer.
http://www.caringbridge.org/visit/angelinajean
Today I had a conversation that reminded me of all of the bad that we as people can do to each other. Many times it is deliberate and some times it is not but yet we are so busy thinking of ourselves that we forget about others. I felt sick to my stomach after this conversation but I realize that for those who deliberately hurt others there are so many others that go out of their way to help others. Some times we are blessed to do it with our actions and sometimes are hands are tied and we feel that we can not help...this I feel is untrue....for we all have the power to have a positive thoughts for those in need. I do it through prayer but I do not believe that this is the only way...goodness...positive thoughts help us all...I truly believe this.
Savannah was on and still is on many prayer chains and lists....I would not trade this for anything for this I truly believe helped her in her journey...in our journey. The other day, Savvy's Madrina Julia, reminds me of the women in Costa Rica who have never met Savvy and yet keep her in prayer....women we will never meet...I will not be able to thank everyone that keeps my baby in their hearts, their thoughts and their prayers but I can keep others in min.e..when we needed you were there for us...so ask that you share this special gift with others and in my selfishness I ask that you share it with those I mentioned above.
With love and prayer,
Ana, Proud Mami of Savannah
June 26, 2008
My little helper just finished helping her Mami put all of her toys away in her basket...clapping for herself after each toy (way too cute!)....then I turn around for a second and now the entire basket is again on the floor with all of her toys...toddlers are a lot of work but it is just an amazing thing to watch them figure out their world...so after she dumps the whole basket she is now putting in her toys again...the cute thing is that she seems to have a place for each toy...her bunny rabbit was too heavy so she placed her in the corner...just darling!
So the little Warrior Princess is having a good day...she is off to nap time soon we still have to wait a few minutes due to her Nystatin. She ate her waffle this morning filled with giggles since she was sneaking some to her Daahhhhgggg...and he was quietly next to her accepting it....I pretended not to see....I know ... I know... but her giggles were just to precious to stop...
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I just placed her down for her nap...she is just scrumptious! I am rocking her and she is about to fall asleep and she looks up at me with a little smirk...so cute so then I placed her in her crib and said, "nite nite" and she waves at me and says.."tye tye" which is her "bye bye"... just scrumptious!
Second Annual "Swim 4 Savvy"!
The Second Annual "Swim 4 Savvy" is taking place at
Connecticut Belair Pool in Rockville MD
July 26th-27th
Noon to noon
If you are interested in registering to become a swimmer at the event please contact Carolina at caper213@yahoo.com.
Our Sweet Aiden
I wanted to update everyone on Sweet Aiden...Savvy's little protector...my sweet friend, Lisa, continues to need our prayers and positive thoughts. They are heading to Cincinnati this weekend and I just wish I could wrap them in a blanket of love ... a blanket that would not allow any pain to come through it ... I do not have this blanket .. so the best I can do is wrap them in prayer ... and I hope that you will join me in this.
Here is the update from his site:
http://www.caringbridge.org/fl/aiden/
Here is Aiden exactly one month ago... Now with a little prednisone:
Yep Folks, Steriods DO make you stronger :-)
Aiden at his MiMi's Pool Last week
DONATE LIFE!
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Welcome to WELCOME TO MY SITE
Made with love by The Heroes Banner Site
Welcome to Aiden’s website! Aiden is 6 years old. He was born with a rare liver disease called Biliary Atresia. About 250 children are diagnosed each year. Aiden became very sick at a very young age. He had his first major surgery at only 6 weeks old. This surgery is called the Kasai, and it is done to help save children with this disease. The Kasai did not work well for Aiden and soon after, the doctors said with out a liver transplant Aiden would not live to celebrate his first birthday. Aiden suffered from many terrible complications to end stage liver failure. He had cholangitis (a liver infection), ascities (fluid in the abdomen) and the worst was his very poor clotting times and esophageal varicies (he bled internally).
On December 21, 2002, A special family lost a baby. IN their sadness they became heroes. They donated their child's liver to our precious baby and gave Aiden his Gift of LIFE! It was a real miracle.
After Aiden’s transplant, he had a rocky road. Aiden spent 200 days in the hospital that year after transplant. Aiden developed CMV in his GI tract, and his liver. His liver numbers didn’t recover for 11 months. Then in the fall of 2003 Aiden’s doctors diagnosed him with a disease called Eosinophillic Gastroenteritis. This is where his own immune system was attacking his GI tract. His body was becoming confused with all the new medicines and soon it would go haywire.
Not long after, Aiden began to develop what they called an allergic storm. He was have severe life threatening food allergies to so many foods we stopped counting. Even if he touched the food, or breathed it, he would go into anaphylaxis. This is when we realized he could not ever attend school like this; things were just out of control.
In October of 2005 we all suffered an incredible loss. Our best friend’s daughter lost her brave fight and became an angel in Heaven. Haley Christine Vincent changed us all and we will never forget her.
The next month, November of 2005 Aiden woke up one morning, stood in our hallway looked at me and started screaming at the top of his lungs. He was screaming, “I am so thirsty! I need a drink!” The next moment he collapsed on the ground. Aiden lay crumbled in a ball on the floor white as a sheet of paper, and his eyes rolling in his head. He began to vomit, and have diarrhea. Once in the ER, my gut instinct was screaming in my head that something was wrong, and we couldn’t ignore this. Aiden’s labs came back and for some reason his Hemoglobin, Hematocrit and all his Red blood cells were very elevated. They sent us home, and our new nightmare began. Over the next few weeks he repeated this exact episode. It went on for many months. I began to panic while I watched everyone else tell me it was not a big deal. You can never argue with a mother’s instincts.
Spring of 2006, Aiden was with his father and I was out of town. Aiden became very ill, He had an episode but this time though he didn’t come-to and just get over it. It just kept getting worse. Joey took Aiden to the ER, they said he had a stomach bug, gave him a few hundred CC’s of IV fluids and sent him home. Aiden was worse again in hours. Again, back to the ER and IV fluids. perk up.. send home. This happened one more time….and yet again on IV number 3 they sent him home. After sending his labs to his transplant center they promptly flew Aiden up for a direct admission to the hospital 8 hours away. Aiden’s admitting diagnosis was “Acute Renal Failure”.
Something was wrong, and everyone knew it. We saw Neurologists, cardiologists, and immunologists. Aiden had a MRI of his brain, sleep study done, and heart tests. With each test the doctors just said, “it is the flu” but I had been dealing with his fainting and collapsing since the fall. His Hepatologist knew it was not normal, but everyone who he consulted over Aiden just didn’t help us. The cardiologist ignored us and it seemed no one would listen. They decided to discharge Aiden but once unhooked from his IV’s Aiden began to faint and vomit non-stop. They said he was still dehydrated. But couldn’t explain how a child who had been on constant IV fluids for 5 days was still dehydrated. Finally after a week Aiden was sent home with no answers.
Aiden continued on with his symptoms for many more months and was admitted for heat exhaustion. It was that summer when we discovered he was not sweating anymore, and his body wasn’t cooling itself. Just 10 minutes outside and he would get a fever! This was not normal. Joey and I discovered if we over loaded him with Gatorade he seemed to do better. Aiden’s skin was turning from red and veiny to pale white like a ghost. Sometimes a couple times a day. The summer seemed like it was better for him except for the heat, but when the fall came Aiden was collapsing and vomiting again. Aiden was admitted again and this time, one of the nurses noted his incredibly high blood pressure. Immediately our pediatricians consulted a nephrologist. It was now another symptom just added to the rest. During that admission Aiden underwent a painful bone marrow biopsy, in hopes for answers. Thankfully he had no malignancy. Our pediatricians worked tirelessly to help Aiden as they saw him getting worse and worse. It had been one year since it started and we still didn’t know what was happening.
Another piece to the puzzle was given to us when Aiden suffered from an anaphylaxis at transplant camp. He had cardiac arrhythmias in the ambulance. The cardiologist didn’t like what he saw on the EKG and had him monitored overnight. Every few minutes, Aiden’s monitor would alarm with his heart rate going to the low 50’s and high 40’s. I explained to the nurse that this was “normal”.. and she explained right back to me.. NO IT ISN’T. Over many months in his chart it was noted his hear rate was very low at night. His local doctors suggest him do a sleep study, but I explained he already had one done the year before. We got the results.. and right there in black and white it talked about his bradycardia (very low heart rate) while he slept. Why did it take another year for us to add this to the puzzle?
I knew it was time for a new set of eyes on my baby. No matter how much the doctors cared… I was his mother and I knew it was time for a second opinion. 2 ½ years had gone by and he was still suffering from life threatening food allergies, unable to attend school, and this new weird stuff was taking over our lives. We flew Aiden to Cincinnati Children’s Medical center in Ohio. They agreed there was a “multi system” problem happening with Aiden, and sent us to see every single specialist in the hospital.
July of 2007, We sat and explained everything to Dr. Jackson, a kidney specialist. She listed to everything and then said….
“Have you ever heard of Dysautonomia?”
I knew in one moment when she mentioned that name.. we were done with our search. THAT would be his diagnosis. More testing, more doctors, and sadly a lot more admissions for Aiden, we finally eliminated every other hunch, and the doctors kept coming back to dysautonomia. Scheduled to see a doctor in New York City… the door shut to that doctor, and Aiden was now scheduled to see Dr. Tim Grubb in Toledo Ohio.
Finally on Valentines Day of 2008 we sat with the most compassionate doctor we had ever met. The world renowned Dr. Grubb, looked at Aiden, and said, “Your son has dysautonomia.”
I could not hold back the tears and the cries.. I wailed right there in the office. Finally 2 ½ years since the day he collapsed screaming for a drink in my hallway, Aiden had a diagnosis. Dr Grubb, did something so sweet, he reached out, and held my hand. He continued to talk about what this meant, and what life would be like for Aiden, while holding my hand. I felt almost like I was holding an angel’s hand, finally, we knew.
Aiden has a type of dysautonomia that has it’s own category. We do not fully understand it yet. We have seen him worsen so much this past year, and Dr. Grubb warned us as Aiden’s center of gravity changed, he could possibly become sicker. It was so hard to hear, but we just needed to hear something. Dr. Grubb told us he was suspicious that Aiden’s bradycardia (his low heartrate) at night was actually playing a major role in his problems. He was concerned that Aiden’s heart was actually stopping in the night. He ordered a special heart monitor to be placed in his heart to see what his heart is doing during an episode. He wrote for a “coolvest”, some flourinef to increase his blood volume, and some other heart testing to make sure it wasn’t a defect that we were missing. Joey and I were exhausted, emotionally spent with all the news we had learned, but now ready for our new battle.
Much to our dismay we hit another roadblock when our local cardiologist said they didn’t feel comfortable doing these tests on Aiden. Somehow we had to find the money to fly back to Ohio to get the tests done. Once again with a Garage sale, God Provided. On May 13th of 2008, Aiden met his new cardiologist, Dr. Knillians. Dr. Knillians said with out a doubt he also supported Dr. Grubbs’ diagnosis and went ahead and did the testing ordered months before. Aiden was cleared of a heart defect, which left us with the possibility that Aiden’s heart is actually stopping for beats in the night while he slept. If they can prove this, they will place a pacemaker in his chest.
As of now, we are still trying to understand Aiden and his complicated diagnosis. His team feels it is related to his transplant medications. We know it has gotten worse over the years, but we also have accepted how we can help him have a better quality of life. Aiden will be getting a port (IV in his chest wall) placed to run IV fluids at home. We are tweaking his medications to help his blood pressure from spiking and dropping, and we are doing everything we can to help him with his problems with regulating his body temperature… This story is just the beginning. With a diagnosis, no matter how ugly of a diagnosis it is, we are empowered and WILL make him better. One day we will see him playing in the heat of summer, or attending school. One day he will not have to take so many medications and we will make him like he was before November of 2005. Joey and I have faith in miracles, we have faith in healing. We know that God has a plan for Aiden and that he is ‘fearfully and wonderfully made.’
This journey started out with a little infant needing a liver transplant, and now it is about a little boy wanting to enjoy the life he was given on that day he was transplanted. With prayers, wonderful doctors, and hope for the future… We will have a cure. We know it… just visit this page often because MIRACLES happen here.
FAQ: WHAT IS DYSAUTONOMIA?
Dysautonomia is a medical term often utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A dysfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment.
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We have set up an account through the American Liver Foundation for Aiden's Fund. It is a tax exempt foundation. All money goes to medical bills, and hospital related expenses. The ALF acts as our trustee so you are insured your donation will go directly where you meant it... Aiden's bills. We thank you in advanced for donations you may give. God Bless!
American Liver Foundation
Transplant Trust Fund
1425 Pompton Ave
Cedar Grove, New Jersey 07009
*****All checks should indicate that they are to be deposited into Aiden Hawk's Account. Please fill in the Memo portion of the check, with Aiden Hawk's name.*****
June 25, 2008
Savvy's favorite "EEE EEE" had a fight with our dog, Buddy, and lost....yup I found his eyes in the middle of my living room....so he is now eyeless but still unstuffed even after losing his left ear a few weeks ago....it is going to be a tough day when he finally bites (ha..ha...bites) the dust! Savvy LOVES to give Buddy the EEE EEE but does not understand that Buddy LOVES to bite him...I do not know what the obsession is with this particular monkey....I might just have to take a picture so when she is older she can explain the incredible love she had for this EEE EEE.
She is so darn YUMMYLICIOUS...she is napping with her little tushy sticking up...just like those yummy pictures of babies you see in the magazines...so darn cute. She has slept through the thunderstorm and could not look any sweeter! She went to visit Super Papi at his office this morning. I received an email from a nice neighbor/scrapper that lives near Super Papi's office...she had used ink cartridges for recycling (for Savvy's COTA fund) so I went and picked them up and gave Super Papi a welcome treat...his Warrior Princess! Savvy was fussy because I forgot her "Aqua"..and she was asking for it...luckily Super Papi had a sippy cup with water so we picked it up...the cutest thing was as soon as I turned it the office she recognized it and started to yell ... "Da Da!"...too cute!
Okay...I just feel like writing all about how cute Savvy is and how wonderful she is...and how yummy she is...and how lucky we are...and did I mention adorable? Nope... I have not mentioned it...so how adorable she is..and how wonderful...and what a gift...and how amazing...and ... and .. and...but we all know this...but I still feel like writing about it! She is wonderful and cute, and adorable, and amazing, and a gift, and yummy and we are so lucky!!!!!!
Ways to Help with Fundraising from COTA's volunteer newsletter
Ways to Help People Can’t Help If They Aren’t Asked
How many people did you communicate with today? What if each of the people you emailed, text messaged, or voice mailed in the past 24 hours got a chance to learn about your COTA patient? While you may not want to make a formal fundraising pitch, there are some things you can do to subtly get people interested in learning more about your COTA patient, and perhaps in making a financial donation.
On your computer:
- Add an inspiring quote to your signature line. Include the patient’s COTA website address. For example; While we try to teach our children all about life, our children teach us what life is all about. Angela Schwindt Help me make a difference in ______’s life. Log onto www.cotafor____.com.
- Send a brief update to those in your online address book telling them you are volunteering for a great cause. Urge them to reply with how they can help make a life-saving difference.
- Create a screen saver. If your employer allows you to personalize your computer, add a scrolling message to inspire action or add a photo and the patient’s COTA website address to grab the attention of those who pass by your desk.
On your phone:
- Include in your voicemail greeting that you are volunteering for a local COTA campaign and you could use donations of time and money.
In person:
- While you may not have time to spend telling your patient’s story around the water cooler, you may be surprised at the multitude of opportunities that exist each day to share your COTA patient’s story. As you purchase your groceries, perhaps you can share with the store manager that in the coming weeks you need to get supplies for a fundraiser and would like he/she to consider a donation. Your own cart full of groceries you are buying supports the grocery store management’s willingness to help with this local cause.
Remember, the worst response you will ever get is “no”, and “no” is better than no response … because you never asked. Start spreading the word today – People Can’t Help If They Aren’t Asked.
Bright Idea Good Clean Fundraising
Most people have cars – cars that need the grime and dirt from the winter months washed away. Why not host a car wash and donate the proceeds to a COTA patient in your area? Here are some simple tips and strategies for some "good clean fundraising."
First, determine a location. You will need to ensure you have access to water and sufficient space to wash at least one car while others wait in line. Try to find a location with lots of car traffic and with an easy entrance so ‘passersby’ can pull off once they see your signs. Some suggestions include a bank parking lot, a gas station parking lot, an oil change quick stop and a church parking lot.
The next step? Finding volunteers. Your volunteers must be willing to commit to the hours of the event, and must come to the car wash full of energy and enthusiasm. People seem to enjoy volunteering at a car wash (even though it can be physically tiring) versus committing to other fundraising activities like selling items, preparing food for dinner fundraisers or soliciting in-kind gifts for auctions. Car washes are a lot of good, clean fun. During your car wash, make sure all volunteers are prepared to wash the cars and are prepared to offer a heartfelt thank you for the donation that will make a life-saving difference.
Finally, you must have cars to wash. Your signage must be bold and easy to read as cars pass. Kids can help by holding up signs, but remember to always have adults supervising your smallest volunteers to ensure their safety.
You can also add to your event day proceeds with some of these pre-event fundraising ideas:
- Wash-A- Thon. Ask your car wash volunteers to collect pledges, in advance, for every car they can wash. This can be a really fun contest amongst your volunteers.
- Wash For Free. How can a free car wash generate funds? Research indicates that people actually donate more when they are not asked for a set amount. For instance, if your sign says each car wash is $3.00, that is all you are likely to get. If your sign says the service is free, the driver may give you a $5.00 donation. You will be most successful with this strategy if your volunteers are willing to share information with the driver about the COTA patient your car wash is supporting.
- Sell Coupons. There are lots of advantages to pre-selling coupons for your car wash. Pre-selling allows you to know how many people will likely come to your car wash, meaning you can better plan labor and supplies. Some ticket buyers will never show up, but you already have their donation. And if it rains on the day of your event, you are washed up, but not washed out.
As you roll up your hoses and hang the towels to dry, celebrate the fact that your hard work has helped COTA to give hope, and possibly make a miracle, for an area child or young adult. Funds raised at your event can be sent to: Children’s Organ Transplant Association, 2501 West COTA Drive, Bloomington, IN 47403. (Please place in "Honor of Savannah A." on all checks and correspondence).
June 24, 2008
I am back for the Creating Keepsakes Convention fundraiser and it was a success! At the last minute things were falling apart cause everyone became sick and Savvy could not be around them but then my sister flew in from Maryland to help out with oh....24 hours notice and my Tia Elluz joined full forces and by the time Friday morning came around we had plenty of people working and on Saturday we even had "eye candy" for the scrappers since both of Savvy's padrinos came to help!
I think we did a pretty good job for our first time and so did the CK coordinator who has invited us back to join them every year until we no longer need to! We were told that we were the best organized group they have had....wooohooo!! and my sister was asked to run the booth in CT so we have another fundraiser with Creating Keepsakes coming up!!!
We had some surprises...I met up with Priscilla..a friend of mine who I did not know would be attending the convention (Although I should have guessed!) and that was super nice. We had people who recognized my Tia Elluz (She is an actress in Spanish novelas and a former Ms. Venezuela)...so that was fun to watch her pose for pictures and stuff...frankly I forget that people recognize her from T.V. since she is my Tia and so for a bit I could not figure out how she "knew" so many people...that was cute! When we went out to dinner on Friday, one fan even wrote a check to Savvy's COTA fund for a picture with Tia!! How awesome is that?!
I missed my little Warrior Princess so much...I swear when I came home she had grown so much! And now she does not want help in eating her meals...what has her Papi done???? She wants to eat on her own?! Ahhhh....
I have to give a BIG THANK YOU to Tia Spare Parts, Savvy's Tia Abuela Elluz, Savvy's Abuela, Savvy's Madrina Julia, Savvy's Padrino Julio, Savvy's Padrino Danilo Antonio, and our dear friend Gale who spent the weekend helping at the fundraiser!! Not only did we raise funds but we spread the word on the desperate need for organ donors...we passed out organ donor pins, donor cards, and bracelets...we spoke to many attendees who were recipients or waiting for an organ donor (this was unexpected and yet not surprising...there are almost 100,000 people waiting every day for an organ transplant)..even in ordering our coffee I learned that the person selling it to us felt the effects for her husband was once represented in the statistics...he was waiting for a liver transplant but passed away waiting.....I will never say it enough...Organ Donation Saves Lives...there is NO reason that ANYONE should have to pass away waiting on an organ donation...NO REASON!
(I did not bring my camera but have been promised pictures via email so I will post them when I get them) --- The Ride 4 Savvy pictures are in the photo album..in a folder!!! and please do not hurt me...Updated Savvy pictures are coming I just need Super Papi's help in downloading..so yell at him.....if you need his phone number so you can yell at him personally just let me know!
As per unos.org:
Waiting list candidates
| 99,039 | as of today 12:15pm |
June 18, 2008
Okay my Sweet little Trouble Makers Whom I LOVE and adore!!! I will get pictures up but you are going to be mad....I am preparing to leave for the CK convention to do the fundraiser (We live 4 hours away) and Super Papi is not feeling well....so please do not RIOT...but I will have to post pictures when I come back....or maybe Super Papi can when I am gone but I know he will have his hands full ... not feeling great and caring for the little Warrior Princess.... If no posts go up from now through the weekend it is because I will be at the convention.
Please do continue to keep the Childers family in prayer...the "call" was not to be for him...we know how this feels and the desperation of waiting for the "right" one..our hearts and prayers go out to them.
Grandpa Pace also needs our continued prayers....things are looking like they are improving so it is wonderful news!!!
and I just wanted to mention some special angels that Savvy and I pray for every night....Savvy's Abuelo, Antonio, Lisa, Callie, and Sarah.... who were just taken from us too early.
Hugs to you all!!!! I can't wait to come back and share the weekend stories!!! Hmmm....wonder if the Poopy Monster will visit Super Papi?
June 16, 2008
Super Papi is home and all I hear in the baby monitor is giggling....and it is not just Savvy doing all of the giggling! Life is Good!
June 15, 2008
It is 8:30 p.m. and way past Savvy's bedtime...and we are waiting up for Super Papi to arrive. She has her pretty little dress on and is playing .. probably wondering why her Mami is not feeding her on the rocking chair and letting her play at this hour but she is not complaining.
Super Papi had hoped to arrive yesterday but the weather has given him trouble all through this trip...actually the only "wonderful" weather day I was told was the day of the Ride...hmmmm....I think that Savvy's guardian angels had something to do with that...
So, we are sitting here waiting to hear the "vroom vroom" of his engine in the driveway... I thought he would have been home for dinner but I guess we have to go with what Robert's idol would say...."it's 5 o'clock somewhere".
June 15, 2008
To our donor angel's family
Thank you for your amazing Gift...if it were not for the courage that you displayed in providing us the Gift of organ donation we would not have this amazing day with the love of our lives. If it were not for your decision...Super Papi and I would be spending the day visiting our Savvy's grave site. The gratitude we have for you is one that will never be able to be expressed for I know that as we say Thank You for Savannah's life on this day it is due to the loss of your beautiful angel...your brave little soul. There is not a day that goes by that we do not think and pray for your angel...our angel...
**************
To Savvy's Abuelo Happy Heavenly Papi's Day:
You Never
You never said I'm leaving
You never said goodbye
You were gone before I knew it,
And only God knew why
A million times I needed you,
A million times I cried
If Love alone could have saved you,
You never would have died
In Life I loved you dearly
In death I love you still
In my heart you hold a place,
That no one could ever fill
It broke my heart to lose you,
But you didn't go alone
For part of me went with you,
The day God took you home.
-Author Unknown
June 15, 2008 - Happy Papi's Day!
Savvy and I are eagerly awaiting for Super Papi to arrive home today....the bad weather throughout the country has delayed his return....I have been receiving phone calls to the like of "you will not believe what just past me on the road...a storm chaser's vehicle...Thankfully it was driving in the opposite direction". He was in Iowa...
We are looking forward to having him walk through the doors and seeing his cute little smirk on his face. Savannah has not stopped saying, "Da Da", every morning when she wakes up, every time she hears a motorcycle or the dogs bark at the door. I can not even begin to imagine how big her cute little dimples will be.
So to all of you fabulous Papi's out there and to those Mami's that are Mami and Dada....we want to wish you a Happy Papi's Day...and hope you enjoy the little dance that this Daddy is sharing with us: (How we did not enter Super Papi wearing his leather and jiggling his moves is beyond me????!! Maybe next year?!)
Volunteers Needed in Fort Lauderdale - June 20 and June 21st
The Creative Keepsakes Convention is right around the corner and we are still in need of volunteers to help with the tote and stroller booth. This is a fundraiser for Savannah's COTA fund. The fee from the tote and stroller booth will be donated to Savvy's COTA fund.
The hours of operation are 8 am to 6 pm on Friday and 8am to 5 pm on Saturday.
Please email me at analiz0211@yahoo.com if you are able to help during any portion of these two days.
June 13, 2008
What a lovely treat to have Katie come over this morning to play with Savvy...my house now looks like a home and not a science experiment. Savvy really likes Katie and kept her very busy all morning. Please continue to keep the Childer's family in your prayers...I have not heard any updates but prayers are needed whether they received their "Gift" this week or not. Also, please keep Savvy's Grandpa Pace in your prayers as well....he is doing better but things are tough...it is not a smooth road ..we love Grandma and Grandpa Pace so dearly.
Savvy is sleeping and looks like an angel....she is just the most precious thing in my life. I rocked her to sleep and just kept thinking about next year's Christmas...we will be at Disney with Savannah and Sofia Elena....just like Sofia's first birthday...this is a day that I am so looking forward to! I just imagined these two precious baby's spending Christmas with the princesses....
June 12, 2008
Savannah had a great time with her babysitter! Katie wore Savvy out ... Savvy was rubbing her little eyes for her nap about an hour before she normally goes down...it was so nice to get time to CLEAN the house! Savvy took out ALL of her toys to show Katie...she was a good sharer today. I sound like a dodo bird but boy did I enjoy cleaning my oven, carpet cleaning and catching up on laundry....my hands are raw and I can't wait til tomorrow to finish the rest of my projects!! I have butterflies in my tummy just filled with excitement! I feel spoiled! ..... I remember a day that I had the same butterfly feelings over a manicure and pedicure....how times have changed!
June 11, 2008
My yummylicious Warrior Princess is sound asleep...she was so tired at 6 pm ... rubbing her little eyes...I did not think she would be able to stay up until her medication time but she did...we took our bath and played and then she conked out.... Savvy had a tough night waking up at 3:30 am with the poopy monster visiting ... when I got her cleaned up and down - she woke up screaming at 4:30 am -- this was so odd for her so I checked in on her and she looked at me with tears running down her face and said, "EEE EEE"... She is just so darn cute it is almost ridiculous. Her monkey had fallen out of her crib...so I grabbed her EEE EEE and put it in her crib and off to sleep.... it happened again at 5:30 am but this time I just let her calm herself down and fall asleep (I can't imagine reinforcing the crying every time her monkey falls out of the crib)...so at 8:00 am when she woke up for her meds she looked at me and said.."EEE EEE"...and was happy as can be to take her meds with her monkey. She LOVES her monkeys.... I LOVE monkeys and my girlfriend , Karen, from College mails her stuffed monkeys and she just LOVES them!!
So, needless to say her waking up several times through the night through her little body off so she was a tired little Warrior Princess. Tomorrow is an exciting day for her and she does not know it! She is getting her first "official" babysitter!!! Katie (of the liverwurst story FAME! ) will be babysitting Savvy while I clean the house...so Savvy will have Katie playing with her all morning giving me a chance to catch up and get this house clean before the weekend...would really be a bummer for Super Papi to come home to a yucky house right before Papi's Day! Well, Savvy is going to love having Katie over!
We have a total for the Ride 4 Savvy .... drum roll ......
...............
...............
..............
$2700 for Savvy's fund! Woohooo!! Great Job! They exceeded their goal of $2000!! So the first entrants to the scrapbook contest is Tio Ozzie and Tia Pattie! Remember the contest will be running for the next 3 months!
I am off to bed soon....but would like to ask that you keep the Childers family in your positive thoughts and prayers...and that you keep the donor family in them as well. As I hear my little Warrior Princess snoozing in the baby monitor I can not help but think of our donor angel...I think of our donor angel every day...and I will never forget how bittersweet the day we received our "Gift" was...the Gift of an organ donation is the most selfless and priceless gift any human being can give and I pray that today is the day the Childers family receives this Gift.
As per unos.org: (This is not just a number..but individuals with families...people like you and me who are loved and love dearly...please spread the word to leave a legacy of life...and become an organ donor...please)
Waiting list candidates
| 99,088 |
as of today 11:21pm |
Prayer Request
Please pray for the Childers family, Jim, Mary and Cory. Jim Childers is in need of a liver transplant and this husband and father has been told their is a possible match today ... please pray with me that he receive this "Gift" and please keep his donor and donor family in your prayers as well.
I am in tears praying for I know how the power of prayer helped us and our Warrior Princess...The Childers family is a member of our parish...and I know they too believe in the power of prayer so please pray this family receives this amazing Gift and begins their journey of healing.
Volunteers Needed in Fort Lauderdale - June 20 and June 21st
The Creative Keepsakes Convention is right around the corner and we are still in need of volunteers to help with the tote and stroller booth. This is a fundraiser for Savannah's COTA fund. The fee from the tote and stroller booth will be donated to Savvy's COTA fund.
The hours of operation are 8 am to 6 pm on Friday and 8am to 5 pm on Saturday.
Please email me at analiz0211@yahoo.com if you are able to help during any portion of these two days.
June 10, 2008
She is simply Yummylicious! Seriously, She is wearing this mismatched outfit....well...it was matchy this morning but you know the drill...not talking about it today. Well she is learning how to pour from her container and could not be any cuter..those dimples I tell you...they just melt you away!
I help her pour out a Cheerio and she just grins so BIG! As if the Cheerio is the best thing in the world...and you know for now it is! She opens her little hand but will not cup it so it is funny to see....just so darn cute to watch her learn. She caresses my leg and says "dande" which is her version of "suave...soft in Spanish". Yummilicious I tell ya! She is also playing with her cup this morning...actually it is a water bottle that she sticks on her mouth and talks into...it cracks her up to hear her voice change due to it! You should try it .. it really is a lot of fun!
She is growing up so fast...it is just surreal to experience. I love every bit of it!
June 9, 2008
So we woke up with the poop monster both in the morning and after our nap....THANK YOU Jen for the lysol and clorox wipes...as you can see they have come in very handy!!! The good thing is that the little "monster" is leaving less liquid and more formed gifts which is a sign I think that we are headed in the right direction...just thought it was suppose to take 24 - 48 hours to leave the system.
So, I felt well "enough" to pick up the dogs from the vet today...I just could not do it before but simply can not afford to keep them there til Super Papi gets home...well they are happy to be home and Savvy is happy to have them home but wouldn't you know it....They have DIARRHEA! Okay...this is my last story on the poop monster cause I am so tired of it...I do not care how many more times he comes to visit this week....I will move on.......
Exciting news!!! The 2nd Annual Swim for Savvy event is in the beginning stages!!! Tia Spare Parts is on top of things ... if you can help her out with it in any way please drop her a note at caper213@yahoo.com ---
June 8, 2008
I could not figure out how to get the pictures on so I will have to wait for Super Papi to get home and I can download them from the camera..well...he will download them for me. I can't wait! Tio Ozzie and Tia Pattie did a great job!!!! Almost 100 bikers showed up for the ride...they had police officers blocking traffic for them...the pictures are surreal! They were able to spread the word about organ donation on the local Fox Channel and live on the radio!
One of our "liver families" came to support the ride and my entire family was delighted to see them...Carson...a cutie patootie who also had Biliary Atresia and a liver transplant came wearing a shirt promoting organ donation as well..."An Organ Donor Saved My Life"...I started to cry when I saw this picture! To learn how an organ donor saved Carson:
www.caringbridge.org/mn/carsonkitch
We are very grateful to the entire community who supported this ride..they donated a ton of prizes for the participants including 2 round trip jamaica vacations and tickets to the local music festival!! Super Papi said that he was overwhelmed with emotion to look around and see everyone wearing their organ donor pin...it means so much! Thank You!!
Thank you to all of the volunteers, participants, sponsors and a special Thank You to Tio Ozzie and Tia Pattie for all of their hard work in putting this amazing ride together!!! Remember...Organ Donors Truly Save Lives...Savvy is a testament to this....let the last thing you do in this life be ... give someone else their life.
As per unos.org:
Waiting list candidates
| 98,998 | as of today 10:39pm |
June 8, 2008
Another tough morning...the poopy monster hit...this time even Savvy was sitting with a look of disgust on her...she just held her little hands up for me to wipe them and then tried to pull down her little pants as to help her Mami clean her up. After her bath, she was so good...just stood next to me while I cleaned her crib...she is an amazing little girl!
When I feel better I will create a file about the Ride 4 Savvy. Such great pictures!
June 7, 2008
Oh my goodness ... we survived!!!! This GI bug was AWEFUL...but we are so glad to be feeling human again!!!!
First...it all started with Savvy throwing up after drinking her formula Wednesday morning .. I think it was Wed. atleast...she threw up which is not new in our world so I did not panic. Fifteen minutes later she threw up again...again this is not weird in our lives...she kept throwing up though and could not stop...at first she acted like she "normally" does when she throws up...she would throw up and after it was done she was comforted and started to play...again..this is not new to us so I thought it would be a tough day for her but never imagined how tough. Well, my sweet little Warrior Princess would not stop vomiting and so I called our pediatrician's office. Dr. Wonderful was not in but they gave me an appointment then after talking a while longer and Savvy throwing up as I am on the phone they said to bring her right in...I could not agree more so I tried to clean up but as soon as I changed and changed her she threw up again...so I threw her in the car seat and headed out.
She panicked me in the car cause she started to what I thought was pass out but I believe now that she was falling asleep cause she was so exhausted from throwing up. I would scream at the top of my lungs to wake her and her eyes would barely open. I was freaked. To make a long story short the doctor saw her at which point she was no longer able to throw anything up but clear which turned to green bile...he wanted her to get some pedialyte in her and did not believe it was an allergic reaction which was my thought (he was right). He said to wait a few hours and things did not stop to take her to ACH ER....I was thrilled that she was not going to stop breathing on me. That was my fear the whole way up driving faster then I have ever driven..hoping a cop would actually stop me so I could get them to get me to the dr even faster.
I am driving home with some samples of pedialyte and Savvy continues to throw up. I get her inside and call my hubby...he calls the vet who amazingly sends someone over to pick up our dogs...they do not have this service but they have taken our doggies at the drop of the hat when we call .. it was just such a blessing...Savvy was laying in her crib when the vet tech arrived and she looked so sad...not my sweet Savvy at all. Okay...so now I am boo hooing and have decided that I am not going to wait a few hours but I am going to call Savvy's GI and just tell him that we are heading to the ER at ACH. Then the door bell rings...so here is my one doggie just happy as a clam jumping around and licking the vet tech that he loves dearly and the UPS man leaves this huge box at my door and my baby is just starring rather sadly. It was surreal. I ran after the UPS man to let him know that he dropped off the package at the wrong door for we had not ordered any toys for my daughter (we live in a community with lots of kids and as AWESOME as this toy was I would be heart broken if the right kiddo did not get it)...well...he stares at me and says it is your address on the package. I look at the address and it has our address and it is addressed to Ms. Savannah...oh....I know who sent this.....no one else sends anything to Ms. Savannah...that is her special name. So I bring it in and the dogs are packed up in the car and I grab my baby and put her in the car seat...off to the ACH we go.
I am calling her transplant team to be advised...her Super Papi to keep him updated...and getting into my calm mode...can't freak out... I am by myself..as I was reminded earlier. When I ran into the drs office I was told to "calm down"....that was hard to hear. I was about to start crying..after all I thought my baby was going to stop breathing due to an allergic reaction...I am ready to stab her at any moment with the epi pen...I was scared. I heard the words and I all hit again...you have no time to cry, feel, freak not in a crisis...that is why it hits on a "normal" day.
I get her to the ER and she is triaged and taken into a room. The dr comes in and agrees with me that she looks dehydrated. He orders an IV and labs and a catheter....I was okay with 2 out of 3. The lab techs came in to draw the blood and place an IV and luckily one of the techs was listening to me cause they wanted Savvy on the table and held down. I refused and told them that she would sit on my lap and I would hold her arm and that Savvy knows about "pokeys" and all I need are some stickers (forgot to grab them on the way out). The guy looked at me and said.."mom knows what she is talking about .. haven't you heard her...this child has had a liver transplant this is not her first time"...brought me back to a year ago when I was in the same ER room and the dr told me not to cry because if I wanted to stay in the room I would have to get use to seeing Savvy going through this....let me tell you ... a parent NEVER gets "used to it!"...NEVER!
Well, Savvy sits on my lap like a Warrior Princess and something happens that I have never seen before....blood goes all over .... I mean ALL OVER! My shoes and socks...I did not "get it" when she put a towel over Savvy's clothes before she started...that had never happened before..why would you need that? I NOW KNOW if anyone ever puts a towel on my baby again..I will immediately demand another tech!
IV in place Savvy starts to fall asleep...then they want a catheter in her! NO WAY...you do not check for an infection on my baby with something that can give her another infection...not without a good reason...not my baby! I requested a vagina bag and got it ... so many issues on this one but this blog is getting too long. I refused a catheter til the labs came back and I could see her WBC count..if it was elevated then it would make sense to me...otherwise we do it the harder way for the nurses but the easier way for Savvy!
Lisa...Aiden's mom..stayed with me in the evening and brought me dinner. Aiden had a rough couple of days and had been at the hospital and here she is holding my hand...she is an amazing woman! It was actually "fun" to have someone who gives you throat tongs to eat your dinner with and does not find it odd in any way! Love her!
Long story...but after 2 bags of IV fluids, some pedialyte and anti-vomiting meds Savvy gets to go home~~ WOOHOO! After going to CVS and getting the prescription we came home and Savvy's present was at the door...THANK YOU SIMONE!!!! Savvy and I stayed up and put it together and it distracted her from all of the horrible diarrhea she was experiencing....THANK YOU the timing could not have been better! I have to say that I thought Lisa may have had something to do with the timing because it seriously entertained Savvy and has entertained her the entire time she has been sick! What a blessing! Even the box has been put to good use by our little Warrior Princess! I thank you for all of the smiles you have given my sweet Savvy these past few days.
Okay....I have so much gratitude to express over the Ride 4 Savvy that happened today and I just realized how long this blog is already so I will express it tomorrow....but for all of those who came out to support our Warrior Princess...THANK YOU! Thank you from the bottom of our hearts!
Ride 4 Savvy!!!! Saturday, June 7th
If you click on the link you can see the brochure created by Savvy's Tia Pattie that will be given out to all of the participants tomorrow. For those of you who can not make it to the ride you can listen to it on-line!!
The ride is going to be broadcasted!!! It will be on from 3pm-4pm central time. Thank You KFGO radio ... for helping us spread the message...Organ Donors Save Lives! Savannah is a testament to it...please if you have not done so become an organ donor.
June 6, 2008
It hit me at 4 am...I am no sick and miserable...booger!
June 6, 2008
Savannah was very ill today. She spent the afternoon and evening in the emergency room. She is now home. My email account is not allowing me to send out any emails for some reason there is a hold on it for 48 hours so I wanted to let the Project Cure women that I will not be able to join them on Saturday morning nor will I be going to SVDP tomorrow. I am exhausted and hoping Savannah can get some sleep tonight....Have a good night!
Thank You For Your Service - The Gratitude Campaign
Have you ever seen one of our military walking past you and wanted to convey
to them your thanks, but weren't sure how, or it felt awkward?
Recently, a gentleman from Seattle created a gesture which can be used and
has started a massive movement to get the word out. Please everybody take
just a moment to watch...
The Gratitude Campaign...forward it to your friends!
June 3, 2008 - Update/Retraction/Robert is making me make it clear
So I emailed my blog to Super Papi as I normally do....he called from somewhere in Iowa after reading it on his phone and would like for me to make it CLEAR that he does NOT make it a habit to pee on walls...actually has NEVER peed anywhere but in a toilet bowl and does not understand why these thoughts would ever cross my head...so this is my public retraction....Super Papi was not involved with the pee episode and does not want to be associated with it!
Okay...as he spoke I almost peed myself since I was trying to hold my laughter back in explaining that people do know that I was kidding....but he wants it to be CLEAR! I Hope THIS clears it up for everyone....Super Papi is potty trained!
THANK YOU Brandon Times!!!
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June 4, 2008
Oh...how I was so tempted to hop on this morning and type up my blog...yup...so wanted to torment others with a good poop story and yet I was too busy cleaning it up and taking care of the little Warrior Princess attached to the atomic tushy that I did not have the time..but I was tempted!!! So, I spoke to my hubby aka Super Papi and explained to him that Savannah needs to be grounded because I am sure she snuck a little boy into her crib last night...not sure what time cause I was awake most of the night but I found the evidence! Yes, he was a nasty little boy too!
I woke to Savvy's stirring this morning and she was really fussy in the monitor..kinda odd for her since she normally wakes up proclaiming her love for Super Papi..."Dadada dada dada!"...but not today.
So as I walk into the nursery with her syringes in hand.. I see it...I kicked myself for jinxing myself the other day and mentioning that I had not shared a good poopy story...so now I have one. Yup....the poop monster visited last night and I am staring at this cute little thing and could not figure out where to start....okay let me get her bath water ready and THINK.. So, I grab a handful of baby wipes and starting wiping her down in her crib which is a big ole no need to describe mess...and this stuff is actually stuck to her...EWWWW!
So, off to bathe her we go....good thing about the whole thing was that after cleaning her up it had been 30 minutes since her meds so she was able to lay with her big teddy bear drinking her formula while I cleaned her crib...yeah...Now this is where I have to share the evidence of the little boy Savvy snuck in last night! As I am wiping and bleaching the hand rails on her crib I look at her wall and there is PEE! On the wall?????
How does a little girl manage to splatter urine on the wall above her waist line???? Impossible you say....blame Super Papi you say? Well, Super Papi is not home otherwise he would bear the blame (not sure why I would think my husband would go into the nursery and urinate on her wall but it seems more reasonable then my little girl doing it!)...so I checked and yes...she is still a little girl! Nothing appeared overnight! THAT WOULD have been a super interesting blog!!!! So the only answer I could come up with is that a little boy was snuck into her crib last night while I was asleep obviously bribing my dogs with their favorite treats for they did not bark!
I cleaned the wall up and I explained to Savannah that she is now grounded for a month! She is not allowed to go to any parties without her Mami, she is not allowed to stay out late at night with the boys, no more drinking and needing a new liver thing, and lastly NO MORE SNEAKING little boys into her crib!!!! So her television privileges are gone! She did explain to me that the only boys she knows are Riley and Mason and Aiden and they have Mommies that watch over them like a hawk...haha "hawk" (Aiden's last name...oh how I do amuse myself!)...and that she does not watch television, and she is only a baby so she does not drink alcohol oh and the going out to parties without her Mami...well...her Mami is invited to parties because of her....well....so I have learned that it is much harder to ground my little Warrior Princess then I thought!
Oh....wait till her father gets home!
June 3, 2008
Today, I learned that our COTA balance is $0. And although I had a really tough day yesterday (who does not have them from time to time?) I see this news as an opportunity! I need to get people motivated about fundraising!!! WOOOHOOOO!!!! Fundraising...the first three letters are FUN!!!! So, I am trying to figure out a creative way to get people motivated to help us fundraise .... I thought I would run a contest....
So I thought I would do a "custom scrapbook" for the person/organization who raises the most COTA funds in the next 3 months. The WINNER will not only know that they truly helped us out BUT I will have them email me pictures and I will create a scrapbook for them...it can be an individual or an organization. My scrapbooks are pretty good....I have to figure out a way to link pictures of one. So I will put the "tally" amounts in the activities section. If you email me the fundraising activity and the funds collected I will keep track in the activities tab and at the end of the three months...the winner will be chosen! FUN...FUN...FUN!!! If you do not want to send pictures to me I will be happy to do a "theme" scrapbook and leave it blank for you to fill in with the pictures when you receive it....so how about it? Please let me know in the guestbook comments if you think this is a good idea?!
June 2, 2008
I am writing this for me...and for anyone else who is in this journey and thinks that they are crazy...you are not ... this is just a tough road! All day I have been on the brink of tears....little things are stressing me out. I ran to the allergist this morning and arrived where Mapquest sent me to learn that the office is not there. I called the office and I was not far and told that it happens a lot ... I shuffle my little Warrior Princess out and learn that I am at the wrong office...turns out they have opened a new location literally down the street from my house. It is so close I could have taken my stroller and walked Savvy to the appointment but instead I drove 30 minutes and the whole drive back I am stressing about the amount of gas I have just wasted. I got another appointment for later in the afternoon so I run to the next appointment that I have and the person has left early for the day...no problem I will catch them tomorrow. By this time I realize I have not eaten but don't have the time to make it home to make a sandwich and run back out so we go to the doctor's office a little early hoping to get out early.
I sat in the parking lot and spoke to my amazing husband....I am about to lose it and do not know why...nothing has gone terribly wrong today and yet nothing has gone right. This has been a hard year ... so hard. I should focus on all of the good and yet I can not stop thinking of all of the crappy luck we have had. What are the odds that after 14 years of waiting for our baby she is born and we do not get to enjoy the pleasures as parenthood like others? We have to watch our baby dying on a daily basis until she gets her liver transplant...that sucks! What are the odds that after getting into my Doctorate program that I always dreamed about I then have to quit? That sucks! What are the odds that after coming home and so desperately wanting to catch a breathe I find out that I could have cancer and have to deal with the stress of that? That sucks! What are the odds that our sole income goes to zero and our health insurance is canceled on the same day? That sucks! What are the odds that after driving a motorcycle for all of his adult life my husband gets into a motorcycle accident when trying to honor our daughter and her donor angel? That sucks!
I told Robert that I know that I have to be more grateful...my daughter got her liver transplant and she is ALIVE! I am re-applying to the Doctorate program and will hopefully get back in and continue my career path. I DO NOT have cancer! My husband started his own office and it will eventually grow...I know it! Robert got into an accident but is ALIVE! I am so grateful for all of this but today it is simply compounded ... little things were going wrong and my world feels like it is falling apart. It is so hard.
Robert is trying to figure out a way to get to the Ride on the 7th ...He will be there... and I know he misses his little Warrior Princess more then ever. He is having a hard time with the separation...I remember when he was separated before from her he never knew if she would be alive the next time he came up, or in ICU, or...or....we lived in fear.
So, the other day I was talking to my dear friend, Lisa, and she told me how everything that I am going through is exactly what she went through after Aiden was transplanted....there is no time to lose it, cry, mourn for your healthy child in the mist of the crisis...you do a bit...but not really...now it all catches up to you....she said something to me that struck a cord....she told me that the last thing she can handle hearing from someone is someone telling her that everyone eventually passes. YES this is true...but others do not have to live in fear on a daily basis that will be there child. They do not wake up every morning thinking is today the day we go back tot he hospital? Is today the day everything goes downhill?
I had told Lisa that I do know that every child is different and takes on their own course but this time last year we met our "Hope Child" and our "Miracle Boy" and they were doing so well...and now they are both fighting cancer and that simply sucks!!! I fear that Savvy is next...that this is the reprieve that we have been granted. I know this is all hitting me because of the motorcycle accident...the thought of losing Robert is incomprehensible to me... it was just too much.
So, this morning I am driving my little girl to the doctor's appointment thinking this is the story of our lives....why are we not going to Gymboree? Why do I have an Epi Pen in my diaper bag? Why do I have a syringe with Nystatin in case I am running late?
This evening I sat in Savvy's nursery as she brought me her shoes and wanted me to put them on her feet....not the same shoes...she wanted a sandal one foot and a boot on another...we went through our wardrobe changes atleast 12 times..it was so cute to have her walk around and grab another option, hand them to me and then plop herself on my lap so I could dress her up. I sat their and I felt so guilty for wasting my day feeling so ungrateful for all that I have...so things are hard...I know so many parents that would trade my hardest day for theirs for their children are no longer with us. I write this tonight to get my feelings out...to share them with myself really....and maybe with another family that is going through this...times do get so tough...we worry about how we are going to pay our bills, how we are going to put diapers on the Warrior Princesses tush, how we are going to get ourselves out of this hole that liver disease has dug for us and then I see it...the Gift that liver disease has given us...my Savvy.
This weekend I watched a telethon for All Children's Hospital in St. Petersburg and I started to cry...this is "our local" hospital...the place is so familiar to us...I could not deal with it and then I read Lisa's blog....it made so much sense to me that I have to share it. Another Gift that liver disease has brought us...our dear Aiden and his Mommy, Lisa...Lisa who gives me a shoulder to cry on when so much is going on in her life...Lisa who sends me a list of questions to ask the allergist with #5 being "why is she so cute? Is she just the cutest ever?!" and you know what....I did ask the question!
Journal
Monday, June 2, 2008 6:24 AM CDT
LOOONG ONE.. warning..
The telethon was on this weekend. I always tend to forget to not watch. Of course after spending the evening hanging out with my mom, talking all about Aiden and everything that they are doing to help him, I was so emotionally spent I just wanted to go home and go to bed. It was late in the night, I turn the TV on and see the telethon. Ouch.
I tried explaining how painful this is for me to see the telethon to a few people in the past no one ever gets it. But since this is MY page I am gonna talk about it till the cows come home and I don't care if it makes people uncomfortable or makes me "less fun" to be with.
Once apon a time I was on a treadmill in a Gym,(don't gasp.. I know this is shocking.. it was a LONG time ago) with my mom. We both had our ear phones on watching a children's Miracle Network telethon. Aiden was about 4 months old, we already were diagnosed, had the Kasai but he was doing ok. It was our calm month. I was walking next to her, watching these moms cry and beg people to understand how painful it was to endure you child suffering from XYZ disease. I look at my mom and I see her crying big tears as she walked along. My hands started to shake...It hit me.. it just hit me that very very moment.
I was now them.
I was the moms crying and begging for someone to understand.
How on EARTH Did that happen!? How did my life become a sad story? (bear with me people this gets better.. I was in the midst of accepting the diagnosis) We always had joked for my whole life, I had the "charmed life" Rode horses, was a good girl, cheerleader, good student, lucky in love with my Joey (whom also had a charmed life as well), happy go lucky, just life was good!
NOW.. I was the mom on TV crying about my sick kid? It was sureal. I didn't WANT that! I didn't WANT to be sad! I didn't WANT to accept the fact that things had gone from being neat and pretty with a big pink bow on top.. to an exhausting, terrifying lump of crap. No bow. Just crap.
I went home and told joey my discovery. I told him that Aiden was so sick that he could be on TV! (still bear with me)
He didn't get it. (Joey was in the real-deal-denial and was planning Aiden's private baseball training for when he turned 7 months. )
I told him that this whole "Biliary Atresia thing" was bad! It just hit me.. we could acutally have to keep going back to hospitals! Aiden could actually need a liver transplant! Didn't he get it?
-- don't you hate it when you are reading something along side someone and you turn the page faster, but the other person says, "I am not THERE yet!" and makes you sit and read that same last paragraph for 2 minutes while THEY catch up?
So a telethon was HOW I accepted, heck how I even realized that this whole liver thing was a BIG deal. Not just a scary deal.. but a VERY VERY BIG DEAL.
Years go by... Aiden is transplanted.. there is NO more denial, Joey and i get it. The year AFTER transplant we spend 200 days in the hospital and away from home. It feels ok. I am actually very happy. Aiden was transplanted, he was alive, he was our miracle. I didn't care if we lived on the side of the road, I was so darn happy to have this life.
OK not really. I just wouldn't allow myself to feel anything else..... well until one day I watched another telethon. We were in All children's Hospital sitting with all the excitement of the local telethon and I sat and watched. it had been about 7 months since I had shed a tear. Not one tear for me and Joey or Aiden.. I was in transplant mommy mode and there was no time for crying.
Until the telethon cameras circled the floor and it hit me. I was a telethon mom, and I was ...proud! Where did the young mom go that saw it as a big pile of crap? Now I was an advocate, the mom of a miracle, thankful to just be a mom. And it hit me how even though I never knew it was happening God had changed my heart, and showed me that even in the strangest places, with the most painful terrible events, we can change our perspective.
I remember Aiden was in his crib I made his little hand wave at the camera as it looked at him. I don't even think it aired, but My heart swelled with pride. I wanted to hug all the other mom's necks that were the parents of children who were the spokeskids that year. I wanted to tell them, that even though I never wanted to be in their club, I was so thankful we were there with so many amazing children. Determined, resiliant, strong, brave and frankly just a little cuter. (bias I know)
Now the telethon was the only way I woudl cry. I would call Cheryl (Haley's mom) and tell her, "I haven't cried in almost a year. I know that is not normal... but when I watched the telethon I cried so hard for those other children. Not for me.. but others. It seemed safer and easier." Cheryl's reply: "Oh yeah we do that all the time here. We watch things that make us cry so we don't have to cry over us."
Wow.. she got it.
SO more time went by and Aiden was SOO healthy. It was his 2 year old year. Oh if you could have seen him back then! He could eat every food he wanted! Only allergic to milk. He didn't spend ONE night in a hospital for the whole year. It was Heaven. But then he turned three, and we have never looked back. When Aiden started getting out of control with his anaphylaxises had a massive rejection, and then in the fall of his 3 year old year Aiden looked at me early one morning and collapsed. His first dysautonmic episode. (we just didn't know it back then) Aiden was sick. He was getting bone marrow biopsies, IV fluids, high boluses of steriods, ambulance rides... and our happy healthy year was gone.
Now... the annual telethon is a reminder to me that this is getting exhausting. Two more telethons come on and I realize now I need to ban them... I am angry, I am hurt, I am sad, I am just not ready to accept we were there again.
So Saturday night, Just only days ago, when I stayed up in the late hours sobbing into my towel... the telethon was only a reminder of how much of a marathon this is. A looongg marathon. One that I am thankful to run because others don't have the chance to with their children, but man lets face it... it is a lonely race. It sucks too. I am tired and just need to get that cool glass of water and get a breather.
Last week I wrote about how his port saddens me because it reminds me how sick he has become. Lets just face it. He IS sick. This is NOT normal. This is NOT good. He looks bad, he can't barely function in the heat. He is in and out of the hospital, things are not good. Each visit we add more medicine, and the medicines just make us add more. One to control his heart rate, one to control his blood pressure, one to control how much fluid he looses, one to control his kidneys. Medications so he won't reject, medications so his allergies don't get out of control again, medicines to heal his GI tract that is torn up and eaten up by his own White blood cells. Medicine for the medicine. He is geting a port, he is getting a heart monitor placed under his skin. He might be getting a pace maker...
Aiden IS sick.
SO why am I the last to get the memo? Why am I the one who isn't turning the page? The one who is slowest to read the words? Why does it take a telethon every darn year to teach me yet another lesson? Why is Aiden sick? Why is he worse?
I don't know the answers. It just is this way. I cried my tears, yes for the other children on the telethon... but this weekend.. I have cried my tears for Aiden too.
It is a step towards some acceptance. I am no longer doing the little "finger quotes" each time I say he has a systemic form of dysautonomia. I am no longer wondering if the port is the best for him. I am defeated to the worries and the control.. now I can only just get on my face and beg God to heal him. An earthly healing. I can only beg God to make my little boy better. Please God let us not exhaust all these medicines and monitors and tests with no anwers. Please God just make him better.
I am so thankful for our doctors and hospitals.. but to me God is the ultimate Healer and decider of our race. Pray with us for Aiden. Pray for all these little ones who weren't given a fair shake.
And if you have any extra prayers... pray for their parents who just don't ever know how to feel.
Lisa
June 1, 2008
From the heart
Organ donation is in crisis in New Zealand. With just six donors per million people, our organ donation rate is one of the lowest in the Western World. But as Pete Cronshaw discovers there's an amazing woman who was determined her husband's death wouldn't be the final word. She made the tough call after an accident at work, to allow her husband's organs to be donated. His organs, and her decision, saved the lives of six strangers. But Helen Stewart was then thrilled when three of those whose lives were saved by her decision made contact - we're there for the emotional reunion.
http://tvnz.co.nz/view/page/1805129 --- follow the link to watch the video.
In the U.S. - As per unos.org:
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