But I will post one here.... isn't this breathtaking? View from the jet before we landed....
Sent: May 22, 2010 2:12p
@GabriellasHeart Bless your precious new heart! You are so loved! Wish you a quick and painless recovery!
On Twitter: http://twitter.com/kellanlutz/status/14516670245
"What the heart gives away is never gone. It is kept in the heart of others." - Robin St. John
She walked today to the bathroom, got her pacer wires out and she is drinking!!!!!
Her heart biopsy will be monday or tuesday and she could be discharged as early as next Thursday or Friday!!! (Barring any issues)
Please pray! Deeper update tonight. I'm phone blogging and headed back to Gabriella!!!
And smiling! She's only been back 9hours!!
We woke up and got ready. As we were walking into the hospital, the nurse called to tell me they had just extubated her and she was crying!
She is on 11 meds right now and having a hive reaction to the IVIG so they added more benadryl. She's asking "I want hot tea, my heart hurts"... Sweet girl! She has drank and eaten ice chips and even smiled as you can see in her picture. She's been talking to me and even had a dream PJ stole her ice chips.
She's a fighter. Some people's heroes are over 6ft tall, wearing logos and costumes and use super powers. Mine is 45.75in tall and curly haired with a sparkly heart.
I love her so much. I can't even fathom how much more God could love her than I do, but he does.
More updates as the day goes on. No cell phones so I'll post when I sneak out.
Pleading for prayer tonight from everyone.
How do you honestly feel about the people you have "met" either via Facebook or Twitter, wanting to meet you and your family, or who offer to help? I know I have been personally touched by Gabriella's story and in a small way feel like I know you.
I firmly believe through this process that God has placed people in our lives in a way to bless us.
I have never been opposed to meeting people online. I think caution and just using your brains is a good way to stay safe. I met my best friend online in the summer 2004 on a preggo mommy website. I also met 60+ other women who have become strong towers in my life at the same time. I met my best friend in person a year later, and quite a few of the other moms over the years. I have had 'strangers' come up to me because they recognized me or Gabriella from the blog, and though it is a little weird (I can;t imagine celebrities!) I think it is fabulous to meet the people who love my daughter and follow her story. I have met in person a few other heart moms that I met online. The literal sense of meeting people from online doesn't bother me too much, but I am cautious for sure.
In a more emotional sense, I can honestly say that people I 'meet' online are such an important part of our journey. Grasping the concept that there are people out there who have never even met us, can care so deeply for the wellbeing and life of my baby is indescribable. It is the whole idea of selflessness. It is super easy to have compassion and care for your own family or friends, but to lend a part of your heart to a complete stranger out of compassion and concern is beautiful, and exactly what Jesus did. People who want to help Gabriella or us either monetarily or emotionally are taking something very valuable that is theirs and choosing to give. In 2010, how many selfless acts of kindness do you really see on a weekly basis? This whole experience with Gabriella has opened my eyes to how beautiful people can be. Choosing to give either hard earned money as a donation, time in helping with something, or prayers when they themselves have plenty on their own mind is a CHOICE people make, and I firmly believe with all my soul that God smiles every time someone does so.
We pray for all of the love and support that people have given to us. We feel the embrace of everyones prayers and well wishes. It keeps us going knowing that at any given time, someone somewhere is thinking of Gabriella and lifting her in prayer or positive energy!
So, bottom line... I love you all for loving my Gabriella. *sniff sniff* THANK YOU!
How much does Gabriella know about her condition? How have you dealt with explaining why she has lost her speech?
I'll never forget, when Gabriella had her stroke, my pediatrician told us that the reason he loves working with kids is that they don't have an acceptance for being ill, like adults do.
Gabriella, from the beginning, understands her heart is very special. She was just over 4 when she was diagnosed, so we had to be very gentle and careful with what we told her as to not scare her. The way we explained ECHOs and EKGs was to tell her that her doctors wanted to look at her heart because it was so special. Blood work was because they needed to check to make sure she was healthy enough. As things got more serious, we explained that doctors needed to fix her heart to make it perfect. During an interview with a news station, when asked what she knew about her heart, she said "Doctors are going to make it sparkly" and so the phrase was keyed by her. We went to Loma Linda for her listing appointment in August and she knew we were going to fly to that hospital and thats where they would fix her heart.
Then she had her stroke, at just 4 and a half. Our immediate way to explaining it to her was that she got an owie in her head and that she was like the little mermaid and lost her voice. We made it a point to constantly ensure her that it didn't happen because of anything she did wrong, that is just happened and that she was so strong that we would work hard to get her words back.
Now that she is a little over 5 and has faced a lot of things most grown adults have never experienced, I think her understanding is growing. Though we never told her SHE was different from other kids, she will often point out her special arm, her voice and her heart in scenarios that she is explaining why she is different. I use the word special, because that she is. Different can have a negative connotation, and I never want her to settle for thinking she is any less worthy of anything than a child who can efficiently use both hands or speak.
I had a very difficult time for quite some time deciding how much to tell her about heart transplant. Telling her too much could scare her to absolute ruins and make clinic appointments, or even the travel when we get the actual call, unbearable. It has also been proven that having a positive mind going into a surgery dramatically improves your tolerance of surgery and recovery afterwards. But telling her nothing would be lying to her. So with a lot of research and consulting with others, I think we have a safe communication about the transplant. She knows theres a problem, she knows we need to fix it... but does not know the process of replacing the heart. I actually bought a book on Amazon about explaining heart transplant to children. I plan on showing her afterwards and having some very honest conversations with her. I will have to explain the mark down her chest and the massive amount of medications compared to the mere 5 she is on now. But after seeing how she responded with so much trust after her stroke to therapies and twice daily injections, I know she will be able to handle this.
The hardest part for my mommy heart? That my baby has to grow up this fast.
Does this $ go dirctly to Gabriella care or others? not that i wont help others...I just really touched by her face tonight! I was a preschool teacher and No child should ever have to go thru this! best wishes
All donations go directly into Gabriella's medical expense account and used for expenses related to both her stroke and heart transplant. We have had fundraisers for her and they came to be the biggest blessing to us with her unexpected stroke and therapies!
One day we will start a non-for profit organization/ ministry and raise funds to help other families who struggle due to their child's illness with lifes necessities. It's kinda become a dream of ours and we know it is God directing us to do so! But all Gabriella's medical donations will remain separate from this. She/ we will have a lifetime of financial burden with medications and rejection tests, so there will always be a need for her!