About to go into the bay after her GI appt...yup...wearing a dress and her English purse

She loved the purse that Bethany and Eloise sent her...she did not even put it down to go play in the water.

"Party til You Puke!"...that was Savvy's motto last night...we all had a great time last night at Riley's house but then Savvy vomited again...poor thing...this time we think it was an allergic reaction because of how she vomited but either way it wasn't fun for her...but true to the Warrior Princess style...she has bounced back today and acts as if nothing happened...just another day to enjoy.

So, I had to share the vomit story in order to share the funny morning story. We had a little puke on us....okay...A LOT and on the couch, etc, etc, so Riley's mom's being super sweet gave me some clothes to change into since I was drenched with vomit and of course a set of PJ's for Savvy that belong to Riley so we could change her and put her to sleep when we arrived home. Jen made a comment about how BOYish the PJ's were...nothing girly about them...well...little did she know....

My child woke up with what we believe was a case of testosterone overdose! She normally gives you a smile in hug in the morning to get out of her crib but this morning she looked at me and threw herself back on the mattress grumbling the whole time! Okay...then she gets her meds and diaper changed...she is simply making her complaints known very clearly and running around like a wild child raised by wolves...she gets her breakfast and her tired Mami picks out an outfit for her to wear...as soon as the pink little shorts and butterfly shirt were on we got a smile and my sweet princesa was back! Okay...so some people may think that she was starving since her tummy was obviously empty before she fell asleep due to the vomit and that is why she was grumpy but I think the overdose in testosterone theory makes more sense...my princesa was craving PINK! So no more boy PJ's for her!!!

Today...I know it is still early but no vomit...Woohoo for the Warrior Princess! She has labs on Tuesday and stool samples to drop off and then she is going to have an amazing day with her Super Papi as Mami frets and goes off to school. We did not have a chance to download pics last night but I hope to get to them tonight!!!

I am a member of the St. Vincent de Paul society at church and this morning was a little different since we had a meeting. Savvy an "honorary" member went to the meeting with me and was so amazingly good. I am so very spoiled to have her as my daughter...when we left the meeting I just had to compliment her so much for being such a well behaved little girl...okay...so now I am just bragging! Could not help myself for she was a REALLY good girl!

We heard back from CHOP and all of Savvy's doctors are on the same page...they think it is probably reflux too that is causing the vomiting but if the Prevacid does not work then we will go for an imaging study at CHOP to look at the scar tissue...for now our prescription is filled and we are taking the least invasive route possible...and her Prograf was adjusted to get her TAC level down.

No reflux, vomiting or even liver disease is going to stop this child from eating...next time we go to a drs appointment I have to ask to have her checked for a tape worm! She is eating her "Teedio" or Cheerios in the "non-toddler" world wearing her many jewels...she literally woke up from her nap requesting her necklace and "Teedios"...so cute!

I will have Robert download pictures today...I have a bunch I want to share...she is yummylicious!!! Okay...I am bragging again!

Please continue to keep Aiden and his family in your prayers and positive thoughts...here is Lisa's journal...

http://www.caringbridge.org/fl/aiden/:

"He will fill your mouth with laughter and your lips with happy shouting." Job 8:21

Friday morning, and we slept in till 8:00 this morning. ALL of us. This small miracle was only possible because yesterday Aiden had his port de-accessed! That means we took the exterior line from his chest and now he has just the port under his skin. No beeping machines and uncomfortable IV'S at night!

WITH OUT GETTING INTO DETAILS.. cause frankly I am spent and don't want to relive it again, it was not a good experience. He fainted, and it was yucky. moving on...

So our pediatrician and I together decided it was time for us to just stop the nightly IV fluids. It is shocking that it didn't work. I clearly am not smart enough to wrap my brain around the complexity of this. I do know that with talking to his doctor yesterday, one thing is for sure, we are all on the exact same page, with the same goals, and the same understanding of the importance of quality of life. It is one of those things Joey and I just exhale and feel so relieved over, is this amazing set of doctors we have.

I hate talking about this all. I think it feels so heavy and negative. I just deleted 3 paragraphs I had written...I think instead, I just would rather say how proud I am of aiden. I am so proud of him.

Sometimes I look at Aiden and I wonder how he actually does this all. How he can find so much laughter and joy and have such a resiliant heart. I know that Joey and I DO have a part in that, I don't pretend to say that it isn't something we haven't worked on consiously since he was born. Live for today, focus on our gifts. But there is a supernatural aspect to Aiden with his peace and understanding.

John 14:18

"I will not leave you comfortless: I will come to you."

I hope God comes to him and comforts him. I hope that in his dreams he has a special peace and happiness. I love Aiden so much and can't wait to see him better.

I know the IV fluids didn't work until after the crisis, but we will still have our miracle and healing! I just know it.

Full of HOPE and excited for our miracle...

Lisa

Hello Everyone,

My name is Melissa Boyett and I need your help. I have a project that I have submitted and I need you to vote for it, please! American Express (the credit card company) has a contest every year to award $1.5 million to an organization or project. Once you submit your idea for your project there is a process of voting and nominating the project, to get it down to the top 25 then top 5 and so on.

My project is called “Second Chances”: Mobile Organ Donation Awareness. It basically targets high school and college students, to educate them, answer any questions they may have and make them aware that only 35 percent of licensed drivers and ID card holders have committed themselves to donation by registering to be donors through their state registry or motor vehicle department - leaving the donor shortage a leading public health crisis!

This project will basically be mobile organ donation awareness program. We will go college by college and school by school having things such as talk and fundraisers and like I said educating people about this subject that is so close to my heart! Another thing that this project will do is make is easy and accessible for people to get into the on line organ donor registry. As of right now the only way to become an organ donor in the state of Florida (and each state has different laws) is to say “yes” when they ask you if you want to be an organ donor at the DMV after you stand through long lines to get a license or anything of that nature. So, we believe that with this knowledge and accessibility for people (especially students) that it would increase number tremendously! We have one week to nominate this project and get it into the finals! This money could go a long way and make such a difference is so many lives!

So, this is where I need your help! I have found a way that could potentially make people aware of Organ Donation around the country, and make it a common house hold conversation. American Express (the credit card company) has a contest every year to award $1.5 million to an organization or project. Once you submit your idea for your project there is a process of voting and nominating the project, to get it down to the top 25 then top 5 and so on.

All you need to do is, go to the link below and log in as a “guest” then you will be able to nominate the project. We have just ONE week! The deadline is September 1^st! Our goal is 5,000 nominations! With your help I believe we can do it! Forward this to all your friends and family! (:

http://www.membersproject.com/project/view/UZHKO0

Also, if you have a moment and would like to share your thoughts about this project please post your positive comments at:
http://community.membersproject.com/topic/Education-Outreach/Project-Quotsecond-Chancesquot/14000000742&#msg14000003554

This is a project very dear to my heart and a legacy that I want to leave behind someday. Some of you may know me and my story quite well, but for those of you who do not I would like to briefly share with you a little about my life and then ask for your help again.

Eighteen years ago I was born with a genetic disease called Cystic Fibrosis this disease made it very hard for me to breath, absorb foods, it caused diabetes and osteoporosis among other things.. I was constantly in and out of the hospital with infections and one surgery after another. By the time I was 11 years old. I could no longer go to school like a normal child; I was being pushed in a wheel chair by my family and friends, and needing oxygen because I just couldn’t breath! I was placed on a waiting list to receive a double lung transplant. (My “Second Chance” at Life) After, waiting about two and a half years I finally got the call and I received new lungs! I FINALLY knew what it felt like to breath. It was a whole new life for me. I went back to school, got a job, did cheerleading etc. But it wasn’t long, six months later I got deathly sick! It was cancer! Cancer in both my new lungs! I fought it with Chemo and other treatments for about a year. But by the time it had gone away, rejection had set in to my lungs. Yet again I was no longer able to breath. No more school, back in a wheelchair, back on oxygen and back looking for another set of lungs. Just over one year one the transplant waiting list I received a second double lung transplant! Praise God!

At this time I am currently fighting the rejection again and it has been over two wonderful years since my second transplant! I was able to Graduate High School and I am starting Community College this week! :) Unfortunately at this time there seems that there are no real options for me except to live out the time that I have left to the fullest and to the glory of God! I am currently, back on oxygen and in a wheelchair (at times). But, like I always say “I just take it one step at a time, and I am thankful for each one!”

Although, I am still here today, I have many friends that are no longer with us. Children and teens that had illnesses such as Cystic Fibrosis that did not get there “Second Chance”. Just a little statistic for you, 18 people die everyday waiting on transplants. 6,411 Americans - one every 90 minutes – died in 2007 while on the transplant list. Also, my younger brother, who is doing quite well right now, was also born with Cystic Fibrosis.

I feel that God is calling me to help others in similar situations to my own, and that I am still here for a reason! I want to help get the word out there about Organ Donation! If I could help one person get a “Second Chance” and make sure that one less family has to bury there loved one. I would feel then, like, it was all worth while and I have done what I was meant to do.

Here is the link to vote for this project one more time…

http://www.membersproject.com/project/view/UZHKO0

For your comments:

http://community.membersproject.com/topic/Education-Outreach/Project-Quotsecond-Chancesquot/14000000742&#msg14000003554

Again, thank you so much! I will keep you informed of how we do.

If you have any questions please feel free to call me: (904) 422-5415 or E-Mail: jasmine10_4@yahoo.com

Sincerely,

~Melissa S. Boyett~

We had a very long and wonderful day today! It started off with a ceremony and ended on the beach the way each day should...celebrations and the beach! We headed to see our GI this afternoon (whom we think the world of!)..the nurses were amazed with how big Savvy had gotten for the last time we saw our GI it had been at a different office and the nurses that have followed her were not there. I kept hearing "do you know who that is? That is Savannah!" as she strolled down the hallway to STEP UP (Yes...step up on the scale no longer are we on the baby scale!) on the scale to measure her weight. Yes...strolled in with her new English designer purse sent to her by her friends Bethany and Eloise (Thank You Sam!!).

Before heading to the doctors a packaged arrived from England! It had a purse and bracelet in it for the little Warrior Princess...and as the universe has it - the purse was perfectly matched with the outfit she was wearing!!! So...Savvy strolled in with her little outfit and simply asked for a "Ticker"... she knew she was at the drs and wanted a sticker!

We ran into a mom whom I believe I wrote about ... a long while ago I was in the waiting room for our GI...this was real soon after Savvy received her Gift. There was a mom looking so stressed out with her little boy and a precious little girl in a carrier with an NG tube coming out of her nose...oh ... that NG tube....

She was filling out the initial paperwork and I am not sure why for I usually keep to myself (in waiting rooms...ONLY...Haha) but I walked over and told her that I thought she was in amazing hands no matter the doctor that she was there to see..that we had experience with both and they are intelligent men who are extremely caring and yet straightforward. She seemed relieved and told me about her beautiful little girl being born with Down Syndrome and having to have heart surgery due to congenital defects and her other issues...she told me that she was hurt for she had heard from so many that they were "sorry" and that she felt that her daughter was a gift and not something to be sorry for but some one to cherish...well...today we happen to see this precious little girl in the waiting area our appointments were one after the other...she had her heart surgery and her mom showed me this beautiful Warrior scar on her chest...she is doing so much better! What joy we all had in the hallway looking at these amazing girls!

So in the car Robert and I were talking about how lucky we are....yeah...it does suck that Savannah has to deal with more appointments then a "healthy" kids does but seriously...we are blessed!

So...to make a long story even longer....we believe Savvy has a case of reflux (yeah... a word we can pronounce!) and that is what is causing the vomiting ... tomorrow we head out to the lab to give a stool sample (you know we are all about the poop in this house!) and have it checked out for some disease that has initials and letters that I already forgot and will not worry about it unless she is positive for it...we changed her Pepcid to Prevacid and hopefully her vomiting will calm down after this.

Savvy's Tac levels are high so we have to see what CHOP is going to say about what to do with her immune suppression medication ... and of course we have to go get a "pokey" next week...since the labs are off...we have to have it rechecked....so this is the news with Savannah.....

But what I will remember from today is ... the wonderful ceremony we had this morning...the look on Savvy's face when she saw her new purse...and Savvy running into the St. Petersburg bay clutching her plastic shovels all dressed up with her purse....

Already started with the vomit thing this morning.....augh!

Vomit...that is what is fashionable in our household...we like to be trendy so we thought we would try out how vomit looks on our clothes...we are hoping that this is a short lived trend! Savvy had an amazing day yesterday playing for hours at the park with our friend, Jerilyn ... it was an awesome day! Today not as awesome from her perspective I imagine. We started our day with Dr. Wonderful...we had an appointment due to the constant vomit issue that we have going on..and just to throw a little curve ball I thought I had seen blood in her diaper last night when I changed her...but then of course it could be the marinara sauce ... and why would she have blood in her diaper now? So, I kept the diaper and mentioned it to Robert but did not freak out...Yup..we went to visit Dr. Wonderful with presents this morning...the smelly kind! You should see what we are planning for the holiday season! So after visiting with Dr. Wonderful and learning that there probably was blood in her diaper and some reasons that may explain it, Savvy and I headed to the park...just about the time I was pulling into the house after leaving the park to put Savvy down for a nap we learned that we had to head out and get bloodwork done on her ... so off we go....Savvy did great!

Our fabulous, Julie took her blood and Savvy got her Dora stickers...I just love that we see Julie every time...she has a great touch! ....Not a tear was shed as usual but this time she was even more amazing! Who ever Savvy sits on holds her arm down and keeps gauze pressed down on her arm til she stops bleeding for she is very sensitive to bandaids and we avoid them...today, it was my turn to hold her so when I stopped putting pressure on her arm with the gauze our little Warrior Princess grabbed and did it herself!

We are going to see our local GI on Thursday after the blood results return...we should know more then. So, I am thinking she had such a good day yesterday and no vomiting and we have not vomited today!! WOOOHOOO!!! But then.....this evening we heard the all too familiar sound and her dinner was on her pretty little dress...combined with her medication and a look of disgust from our Savvy....booger!

******************************************

Jen,
I was going to send you a private email to respond to your guestbook entry but I thought that I should simply thank you in a public forum for that is where the conversation started. I know that you are an amazing woman and an amazing mother whom I respect dearly and I thank you for I appreciate your response. I know that many people feel exactly as you do but you trust our friendship enough to openly say it...that is what makes our friendship so beautiful. I only have 2 lines to respond to guestbook entries and did not feel it just to leave at ... "It is a good documentary and I recommend it highly".

I believe that in this amazing nation of ours all individuals should be treated fairly and just and that discrimination should be fought against and that includes discrimination against individuals that are homosexual. I thought about it all day and I can not recall an occasion that I have ever asked anyone what their sexual orientation was...sometimes it is obvious to me .. sometimes not..but I really do not care...simply because it makes no difference in my opinion of the person. I can not rationalize condemning someone due to the color of their skin anymore then I can rationalize condemning them for their sexual orientation. Our history is one of condemnation for both..and this is something that I will never understand. That is my belief system.

I recommended the movie that I did for it puts into context a lot of things that I believe and whether or not you agree with them I think it is so important to continue to keep an open dialog and learn from each other...for when we stop questioning, we stop growing.

I have a deep respect for the religious beliefs of others whether or not they coincide with my own for I believe that we are all loved by God...whether God is the name you chose to place on the higher power or not. I believe that the Bible is the holy scripture but to take it at face value or "100% truth" without question as you have asked me to do is to follow the truth of one faith only...this is what divides so many faiths and why we have many different religions even within Christianity. Our religions interpret the holy scripture and the different interpretations is why there are so many sects..and that is within the New Testament alone. There are many wonderful religions that are not Christian based that follow the same teachings of love....I think we have more in common with each other then not.
I am not responding to argue this point but simply to question why it is that we can justify the "hate" of one's sexual orientation. We have used the name of God to justify violence and hatred throughout the centuries...Hate is a powerful word with lots of emotions and many people do "hate" homosexuality...why? I do agree with you that God does not "hate" the person..for I believe that "hate" is a human attribute that God does not share..but we can justify attributing this to God because of the words in the Bible which says it is an abomination?

You stated, "There is no changing the Bible or the meaning of the verses in the Bible. On this topic - the Bible clearly defines marriage as between a man and a woman - period." The Bible clearly describes many things that as a society are no longer applicable such as in:
• DEUTERONOMY 22:13-21

13If any man take a wife, and go in unto her, and hate her,

14And give occasions of speech against her, and bring up an evil name upon her, and say, I took this woman, and when I came to her, I found her not a maid:

15Then shall the father of the damsel, and her mother, take and bring forth the tokens of the damsel's virginity unto the elders of the city in the gate:

16And the damsel's father shall say unto the elders, I gave my daughter unto this man to wife, and he hateth her;

17And, lo, he hath given occasions of speech against her, saying, I found not thy daughter a maid; and yet these are the tokens of my daughter's virginity. And they shall spread the cloth before the elders of the city.

18And the elders of that city shall take that man and chastise him;

19And they shall amerce him in an hundred shekels of silver, and give them unto the father of the damsel, because he hath brought up an evil name upon a virgin of Israel: and she shall be his wife; he may not put her away all his days.

20But if this thing be true, and the tokens of virginity be not found for the damsel:

21Then they shall bring out the damsel to the door of her father's house, and the men of her city shall stone her with stones that she die: because she hath wrought folly in Israel, to play the whore in her father's house: so shalt thou put evil away from among you.

Isn't death for not being a virgin a little extreme?

• LEVITICUS 18:19
19Also thou shalt not approach unto a woman to uncover her nakedness, as long as she is put apart for her uncleanness.

The Bible forbids a married couple from having sexual intercourse during a woman’s period.

Well if taken literally then eating shrimp is an abomination too - I confess shrimp cocktail is my favorite appetizer. There are many passages that can be used in so many ways in the Bible but that I recommended the movie not to question anyone's faith nor to attack anyone but simply to ask that people think before attacking someone's sexual orientation...at least start the dialog...love not hate...that is what I believe we are here to do.

With my deepest respect,
Ana