Wednesday, March 31, 2010
Tuesday, March 30, 2010
(all information according to www.unos.org)
As of March 30, 2010 there are 3,151 people (adults and children) in the United States waiting for a heart.
(OPTN data from March 26, 2010)
There are 89 kids waiting for a heart in the age category 1 to 5 years in the whole United States.
There are 21 one to five year olds waiting for a heart in Gabriella's blood type of A+.
Region 5: Arizona, California, Nevada, New Mexico and Utah
There are 16 kids ages 1 to 5 waiting for a heart in the Region 5.
There are 4 one to five year old kids matching her blood type of A+ in Region 5.
While Gabriella and I were at the aquarium in California, we were there at the tail end of probably 20 field trip groups. There were kids everywhere with their matching shirts or buddies. The ticket lady told us by 1-2pm they all clear out, so until then we had to just deal with the crowds. Gabriella's favorite thing was touching the animals... bat rays, sharks, starfish, etc, but it was difficult to get to them with all the kids around. While we were waiting in line for the coral & star display, Gabriella and I were having one of our special conversations- the ones only her and I understand. One of the field-trippers, possible 8 or 9 years old, had been observing our conversation, staring the way kids do best. (the way kids stand there and stare to scope each other out cracks me up). When I gave him a smile, he asked me "is she retarded or something?"
I am guilty. I used to use the R-word in casual conversation, to substitute for the word stupid or dumb or ignorant. It was a bad habit picked up from peers and, like most others, never gave much thought to the reality of the word. It wasn't until I was faced myself with a child having a developmental delay (acquired, but nonetheless it is a delay) that I FELT the hurt in the word. I began to fear what Gabriella would face as she got older, not being able to talk like other kids. I could picture the taunts and words she would be faced with from uninformed kids. I learned my lesson on the R-word.
I kept this all to myself for about a week, until I saw on Twitter a tweeter called @endtheword and they were running a campaign to spread awareness and stop casual usage of the R-word. Then I read a blog entry from a woman, titled 'Reasons to not use the R-word'. I felt compelled to repost the updates they were putting online. A friend asked me if people really do still use that, and I mentioned our experience. I didn't want to make a big deal out of what happened with Gabriella, because I was dealing with a pain in my own heart about the day she realizes what that word means.
What did I say to that little boy? Sure, natural instinct would be to get angry.... but I'm convinced that boy didn't ask me that to be hateful. He asked it because he hasn't been taught what the word actually means, how it hurts and has heard too many people use it casually, so he saw someone different and felt it appropriate. I told him that Gabriella had an injury in her brain that took her words, and she was working very hard to get them back, but she was just like other kids. He just looked and said "oh." For that moment I hated that word. He used it because he has learned that the R-word can be casually used. Yes, being mentally retarded is a real condition, but it is not something people should go around using casually to jazz up a conversation. It would be like using the word 'cancerous' as a word substitution when poking fun. That's not funny, is it?
I had never intended for this to make it to my blog. I don't want to ever place Gabriella's condition over people who have things so much harder. Sure, Gabriella has a weak and dysfunctional arm, and she cannot talk properly, but she can more than partially recover with hard work. I have lovely friends, in real life and online, who have kids with physical or mental limitations that cannot be recovered from. I look up to those moms who care for those kids. A local friend, Sherry.... an online friend, Heather (who posted a wonder blog entry about explaining handicap to kids).... and so many more.... have become heroes in my eyes. To see the dedication to and positive outlooks on their kids with CP or Downs and other limitations reminds me of the beauty of being 'imperfect', yet 'perfect' in God's sight. And my passion for the R-word being removed as an everyday, casual word to replace other demeaning descriptive words is not just because I have and will face it with Gabriella, but because I can only imagine the pain other mothers feel when their child is taunted with it as well. When I think about Gabriella as she becomes a woman who will still struggle with her speech, I can only imagine the pain and depression she, or any adult with delays or handicap may feel, by overhearing such a simple word to the average person being used when it had debilitated her entire life and she had fought so hard to conform to 'normal' society and overcome her delay.
What if WE are all abnormal? Maybe, in God's eyes, that child with CP or Downs, or my daughter with a failing heart, are normal? Society has placed guidelines on what is normal, but what would happen if we all considered that a certain size or healthiness or appearance is not what makes you normal, but rather the way you live life and love people are what distinguishes people as normal or not? God created us all perfect to His design. I think it is our job to teach our kids, the society of the future, to respect that.... Parents, lead by example.
Saturday, March 27, 2010
Our last 3 days in California, Gabriella and I spent in Disneyland. We got word we could come home a day earlier than planned so we were excited!!! Tuesday, we met up with Shannon and her girls, one of them was born with HRHS and had her 3 step surgeries at Loma Linda! We were connected up with each other by a friend here in Arizona, and I'm so glad! Shannon is super cool and her girls are a riot! Caiteyn has a million stories to tell, and Carlie is a little spitfire with so much spunk. I thoroughly enjoyed hanging out with them for the day and can't wait to see them again!!!
Wednesday, Gabriella was pampered at the Bibbity Boppity Boutique, and became a princess by a Fairy Godmother-in-training. We took our own Princess dress and she pranced around the park like a princess alllll day! And that evening, we had dinner with the Disney Princesses at Ariel's Grotto! We left the park early that evening to catch a showing of Alice in Wonderland at the theater by our hotel.
Thursday was our last day at Disney and we ran around doing everything we hadn't done yet!!! We packed up and headed home Friday and it was SO great to see Daddy and PJ! 10 days away went by quick for us because we had so much fun, but we missed them with everything we did!
Thanks for taking the time to look at all the pics I have uploaded! Here's some more from the last 3 days!!
|Disney 3/23 thru 3/25|
Monday, March 22, 2010
Little Miss Hollywood and myself took the day to explore! What a day!!!!!!! We headed up the I-5 right after lunchtime towards Los Angeles. We went to Hollywood to check out the Walk of Fame and some sites there along Hollywood Blvd. We were able to see the stars on the sidewalk to many of our favorite celebs, the Kodak Theater, the El Capitan theater, the Hollywood/Highland center, tons of tattoo shops and little restaurants, tourists and homeless people, awkward characters and so much more. Hey, it IS LA! Gabriella really worked the camera when we stopped to do a little photo shoot... I called her Miss Hollywood for the rest of the day.
|From SoCal Mar 22|
We headed down Sunset after that, and stopped by High Voltage Tattoo, Kat Von D's shop also known as LA Ink. It was AMAZING, and I felt I had stepped into a dream! Kat's sister was up front when we went in. I spoke to the guy at the front for a bit and got my mom a shirt she asked me to pick up for her. We talked about how to get a tattoo drawn up and the best way to pick an artist. I was able to say hi to a few of the artists I recognized and others I didn't. I didn't get to see Kat or Cory, but it was still AMAZING! The shop is a lot smaller than they let on on TV, but it is just as cool looking. The atmosphere is so unique and fun. One day I will cross off "have Cory give me a tattoo that he drew freehand right on my skin" off my bucket list!!!! Since they were filming I wasn't able to take pictures inside, but I did get one of Gabriella outside!
We then stopped by Beverly Hills for a short bit. How could we go to that area and not go to the original Sprinkles. If you know me, you know my obsession with those demonic little cupcakes. So, we stopped at the OG Sprinkles in Beverly Hills. The line was about 15 minutes long, which I was told was a slow day! I follow @Sprinkles on Twitter and today's offer for Beverly Hills was the first 50 people to say "splash of summer" got a free raspberry. DING DING DING! I was the 50th person!!! We walked out with 5 cupcakes, one being free, and Gabriella's cupcake hardly made it out of the parking lot!!!
Our last stop of the day was at the Santa Monica pier. We rode the ferris wheel because Gabriella wanted to, but I was less than excited. That thing scared the living daylights out of me, and my 5 year old thrill seeker had to tell me it was okay. LOL! We walked the pier and enjoyed the sunset. The view from that pier is amazing, and I can't wait to go back and see it on a clearer day!
We got some awesome pictures today! Please check them out by clicking the box below, and read the captions!
Total Hollywood experience: $8 parking
Total High Voltage experience: $20 shirt
Total Beverly Hills experience: $15 in cupcakes and $1 parking
Total Santa Monica experience: $6 parking and $3 balloon
Total LA experience with my little Miss Hollywood: Priceless
|SoCal Mar 22|
Sunday, March 21, 2010
Another 2 days have passed. Gabriella and I miss our guys so much. Things just aren't the same without Daddy and PJ!
Saturday, we had fully intended on going to the beach. Well, I fully intended. Gabriella had other plans. She made it a point to tell me of all the things she didn't get to do the day before at Disneyland, so we had to go back. Saturday + Spring Break = insanity, but us being the 'Diva Dream Team' tackled the job. We managed to get Fast Passes for Splash Mountain, then wait 70 minutes in line for the ride, the main thing Gabriella reminded me we had not done yet. After we rode it the first time, we got the all-coveted Disney corn dogs for lunch and went back to ride Splash Mountain again! We then had our ice cream, the 2nd thing Gabriella was insistent on completing for the day. We went to California Adventure to ride Grizzly River and the Fun Wheel before we settled into a spot to watch the Electrical Light parade. Gabriella, who was "not tired" and wanted to stay at Disney, fell asleep on the way back to our hotel.... lol.
Here are some pics from the day! Just click on the icon to view:
Friday, March 19, 2010
|From SoCal Mar 17 thru 19|
Our first 3 days have been nice! Wednesday Gabriella and I drove into SoCal. It ended up being the most boring drive in history for me! Gabriella was so into her movies that she ignored me for 6 hours. I was only called on when she needed a snack or drink or potty stop! We made such good timing we stopped at the Cabazon Outlets, which I was severely disappointed in! Arizona Mills Outlets back home are way better.... we made it into Anaheim around 5p and got settled into my friends hotel room. We were lucky enough to stay overnight with my bestie from Sacramento as she was in Anaheim with her family for the week! We had dinner in Disney (thats part of the luxury of having passes!) and rode one ride before heading back to get to bed.
Thursday morning Gabriella and I got up super early to drove back to Loma Linda for her monthly clinic appointment. It is about 45 miles from Anaheim back towards the east, but we made good timing for it being Southern California at 8am! Clinic went well! Gabriella lost a small bit of weight, but they aren't too worried. I was happy, because stopping her appetite stimulant last month really got me worried! She also grew almost a whole INCH! I couldn't believe my eyes! They were very happy with her status for now, and sent us on our way! The scary part for me is thats how the appointment was the day before her stroke. She was doing super well, then BAM! But, I have faith she will be fine. We then went to the grocery store and loaded up on some meals and goodies before checking into our hotel. We got check in and settled in before meeting back up with Bestie and her family for dinner and some more evening Disney time. Gabriella crashed SO hard Thursday night that she didn't wake when I carried her to our room and changed her! Poor kid.... lol.
Friday morning we slept a bit before heading out. We planned to go to the Aquarium of the Pacific in Long Beach. OH MY GOODNESS! I have never driven through Long Beach before, and it was SO nice (and yes, I DO know about the not so nice areas too... lol). We spent the whole day at the aquarium, and maybe a whole hour of that petting bat rays and sharks. Gabriella, I tell ya.... no fear! We headed back and got to our hotel by about 6pm and spent the evening there having dinner and Skype'ing with daddy and PJ, Gammy, Nina and cousins Marko and Jordan, and Aunt Kara!
Having such a busy schedule will help our days go by for the time we have to be here waiting. We are going to visit some family not too far away, spend some beach time, explore some more areas of the city and of course ride a few Disney rides! It is so hard though doing these things because it makes me miss Daddy and PJ SOOOOO much! BUT I figure I either do lots of stuff with Gabriella and miss them, or sit here bored and miss them!
Here are some pics from the first few days! You can either watch the slideshop, or click on the "SoCal Mar 17 thru 19" words on the image...
DO NOT GO SEE 'Repo Men'!!!!!!!!!!!!!!!!
If you haven't yet heard of this tasteless and offensive movie, you can watch the trailer here: http://bit.ly/9wu3mu then fill out this survey: http://bit.ly/akrzVG to let Hollywood know how disgusting this is!
Critics are already bashing it for being tasteless and crude.
What was Hollywood thinking???? How about a movie to encourage organ donation rather than scare the living daylights out of people by this rediculous concept and diving into such a serious matter? Had they made a movie completely offensive in style to a more known issue such as 9/11, it would have never been cleared for filming.
Instead, check out some good ole Joan Jett! See the Runaways! Or Remember Me!
Thursday, March 18, 2010
Today is March 18, 2010. One year ago today we had our very first of what we would later find to be a lifetime of cardiology visits. We had our initial consult with a Cardiologist on March 18, 2009, to find Gabriella had heart abnormalities we never knew existed. It is amazing how this past year seems to have lasted an eternity while also flashing by in the blink of an eye, in perfect sync.
To 'celebrate' this year marker, we have our monthly clinic appointment at Loma Linda! Gabriella and I came over to California yesterday for a long stay. We have limited medical transport available for almost two weeks, so Gabriella and I are staying locally to the hospital in the event the call comes in this time frame. It turns out to be cheaper to stay locally than to pay for some of the flight quotes we have as back up resources, and since it is something we were able to plan for, we decided it was best to go. My insanely talented trip planning skills got us into an extended stay less than an hour from Loma Linda for a smoking deal!
It turns out we have a lot planned! We are meeting up with my best friend from NorCal for the first couple days since they will be in town also, going to visit family a short drive away, meeting new heart friends we have met through this journey, playing at the beach and going to some fun places, and spending some quality mommy daughter time. I started to realize as I planned this trip how little time Gabriella and I get recreationally! Sure, I spend a ton of time just us 2. But it is typically going to doctors, emergency room, therapy, etc. So despite the fact that we will miss Daddy and PJ back home, we are going to make best of the necessary situation! And hope the time that we are gone flies like this past year has!
If I could ask for prayer, I'd ask for you all to pray protection over us on this journey! And also that God fill in our emptiness as we miss our family back home. This is almost a preview of how it will be post transplant as we stay close to the hospital for 4-6 months! And finally, that if God wills Gabriella a heart in this time, that he guide Paul with safe travels making it to us!
Wednesday, March 17, 2010
Tuesday, March 16, 2010
Saturday, March 13, 2010
Friday, March 12, 2010
As we finish our first whole month of waiting on the transplant list (March 11 completes one month)..... I wanted to answer on the blog my most common asked question. "Does the heart need to come from a child?" The answer is simply, no. Gabriella can receive a heart from a larger toddler up to a small teenager. More important than the age of the heart is the size. Her new heart needs to be big enough to pump enough blood for her 43lb body, but small enough to fit into her little frame. Hearts are not dependent on age, race, gender or religion.
I thought it would be helpful to paste a little info about how UNOS matches organs here, just for educational purposes. It truly is a fascinating process... and not so much of a "list" as it is a database. The list itself is not generated until there is an actual heart available, and the list is specific to that heart. Please, read on!
Donor Matching SystemBE A DONOR!
All patients accepted onto a transplant hospital's waiting list are registered with the UNOS Organ Center, where a centralized computer network links all organ procurement organizations (OPOs) and transplant centers. Staffed 24 hours a day throughout the year, the Organ Center assists with the matching, transporting, and sharing of organs throughout the U.S.
Transplant centers, tissue typing laboratories, and OPOs are involved in the organ sharing process. When donor organs are identified, the procuring organization typically accesses the UNOS computerized organ matching system, enters information about the donor organs, and runs the match program. At times, when requested or when there is a need to identify perfectly matched kidney donor/recipients, the matching process is handled by Organ Center personnel at UNOS headquarters in Richmond, Virginia.
For each organ that becomes available, the computer program generates a list of potential recipients ranked according to objective criteria (i.e. blood type, tissue type, size of the organ, medical urgency of the patient, time on the waiting list, and distance between donor and recipient). Each organ has its own specific criteria. Ethnicity, gender, religion, and financial status are not part of the computer matching system.
After printing the list of potential recipients, the procurement coordinator contacts the transplant surgeon caring for the top-ranked patient (i.e. patient whose organ characteristics best match the donor organ and whose time on the waiting list, urgency status, and distance from the donor organ adhere to allocation policy) to offer the organ. Depending on various factors, such as the donor's medical history and the current health of the potential recipient, the transplant surgeon determines if the organ is suitable for the patient. If the organ is turned down, the next listed individual's transplant center is contacted, and so on, until the organ is placed.
Once the organ is accepted for a potential recipient, transportation arrangements are made for the surgical teams to come to the donor hospital and surgery is scheduled. For heart, lung, or liver transplantation, the recipient of the organ is identified prior to the organ recovery and called into the hospital where the transplant will occur to prepare for the surgery.
The recovered organs are stored in a cold organ preservation solution and transported from the donor to the recipient hospital. For heart and lung recipients, it is best to transplant the organ within six hours of organ recovery. Livers can be preserved up to 24 hours after recovery. For kidneys and typically the pancreas, laboratory tests designed to measure the compatibility between the donor organ and recipient are performed. A surgeon will not accept the organ if these tests show that the patient's immune system will reject the organ. Therefore, the recipient is usually not identified until after these organs are recovered.
Tuesday, March 9, 2010
Today, her family tweets: @LaylaGrace: Layla went to play with the angels early this morning. Rest in peace precious Layla. 11/26/2007 - 3/9/2010
God bless you and your families.
Monday, March 8, 2010
My friend Andrea, Owens mom, entered our name into a photo session giveaway and we won it way back when! It took a while to get this session scheduled because everything for so long post-stroke was hectic, and then the holidays, and getting her listed... blah blah blah. Anyways, we finally got the session scheduled and had our pictures done this Saturday!!
CLICK HERE TO SEE OUR SESSION
I am, NO DOUBT ABOUT IT, going back to Rachael in the future for more family pictures. Her style, ability to capture personality, and laid back structure of the pictures is just absolutely perfect! And she is such a sweetheart to boot!
VISIT RACHAELS WEBSITE! AND BOOK A SESSION!
(Family, no worries. I will have prints to share with everyone in a few weeks! If anyone out there wants some pictures, please comment here or email me and I'll make it happen!)
Wednesday, March 3, 2010
(all information according to www.unos.org)
As of March 3, 2010 there are 3,130 people (adults and children) in the United States waiting for a heart.
(OPTN data from February 26, 2010)
There are 86 kids waiting for a heart in the age category 1 to 5 years in the whole United States.
There are 18 one to five year olds waiting for a heart in Gabriella's blood type of A+.
Region 5: Arizona, California, Nevada, New Mexico and Utah
There are 16 kids ages 1 to 5 waiting for a heart in the Region 5.
There are 2 one to five year old kids matching her blood type of A+ in Region 5.
Tuesday, March 2, 2010
Yesterday, I made my calls. I called and left a message for our transplant coordinator (Sharon, for those of you who know the office) and also for the coordinator at St. Joesph's. I got a call in the early afternoon from St. Joseph's nurse, and she was extremely nice! I was able to give her a rundown of Gabriella's history, and she then told me about their team. Their individual credentials make for excellent people to build a transplant team! The doctor started at CHLA and did additional work at Stanford. The Cardiologist spent most of his career at Children's Memorial in Chicago. And the coordinator worked at CHLA, and worked closely with our Loma Linda team, and also at Mount Sinai on the east coast! She was very excited and even said if this went through, Gabriella would be the first transplant kiddo in Phoenix! We talked a bit about being listed at multiple transplant centers and left it with her calling my insurance coordinator to feel them out.....
A while later, Sharon called me back from our cardiology office. I really do love talking to her. She told me about how their offices met with the team at St Josephs the day before the press release came out, and they are a very well put together team! Our cardiology office has been dealing with transplant kids and sending them out for 20 years or so, so they know what it takes! The 2 teams spoke about the future, post transplant care and other suggestions. St Josephs seemed eager to take the suggestions and work quickly on getting them in place! Sharon said in a few months they should have all aspects of the process in line and she'd definitely feel good with us going there. But.... a few months or so. And I value their opinion highly... they haven't led us wrong yet!
Later that night, the St Josephs nurse called me back and said she talked to insurance. There was NO way they were going to approve Gabriella for St Josephs.... darned HMO. So... we are back to where we were. But I met a super awesome new nurse in the process and hope to get to see her, under POSITIVE circumstances, in the future!
Surprisingly, we are not upset. Sure, having a heart transplant in Phoenix would be ideal. It is 30 miles away, we wouldn't have to split up our family, Gabriella could have in-home school and therapy, we could have help from family. But God wants us in California for this, and there is a reason- that of which I do not question. And I did my work, and I tried it out as an option.
The best part of this whole story is it IS available! There are kids out there who will benefit from this center and families that will stay together. In a region of Arizona that has 10 to 20 kids per year who need a new heart, most of them can stay home to get that now! What a blessing, and long overdo for the Valley of the Sun!