Thursday, December 29, 2011
Gabriella turns 6!!!
Gabriella started homebound Kindergarden
Make-a-Wish was reactivated and Gabriella re-wished for the Disney Cruise
Paul & I celebrated our 9 year anniversary
Genetic testing came back with some pretty great news!
We did a 10k for heart defects in Ethans Run
Celebrated Valentines day with our little ones at Buca de Beppo
Paul & I served dinner at the Ronald McDonald House in honor of what would have been Abbie's 4th birthday.
PJ started T-ball
I turned 29
We took a trip to California for some beach time, Sea World and clinic at Loma Linda
Spent Easter with our family at Restoration Covenant Church
We celebrated Gabriella reaching 1 year post transplant!!
We also kept our hearts close to our donor family, who also faced one year without sweet Abbie
Gabriella went into rejection and we spend 15 days at Phoenix Childrens
Took a staycation for my moms 50th birthday to a local resort and water park!
ZERO rejection biopsy!
We were blessed immensly with Big Give gifts for Gabriellas Wish Trip
Paul took a guys only weekend to Tombstone
Both kiddos start dance class
PJ turned 4
Paul turned 30!
We spent the most amazing 9 days together as a family on Gabriella's Make-a-Wish trip
Gabriella starts school!!
Gabriella has her swallow study done showing a weak swallow
Halloween we had a little Captain Hook and Rapunzel!
I took a weekend with my sister and sister-at-heart to Six Flags
Gabriella received her Ironman medal from Bob
Enjoyed Thanksgiving with our families
Christmas tree, cookies, Santa and too much food!
Saturday, December 24, 2011
Saturday, December 10, 2011
“Tomorrow morning,” the surgeon began, “I’ll open up your heart…”
“You’ll find Jesus there,” the boy interrupted. The surgeon looked up, annoyed. “I’ll cut your heart open,” he continued, “to see how much damage has been done…”But when you open up my heart, you’ll find Jesus in there.” The surgeon looked to the parents, who sat quietly. “When I see how much damage has been done, I’ll sew your hea...rt and chest back up and I’ll plan what to do next.” “But you’ll find Jesus in my heart. The Bible says He lives there. The hymns all say He lives there. You’ll find Him in my heart.” The surgeon had had enough. “I’ll tell you what I’ll find in your heart. I’ll find damaged muscle, low blood supply, and weakened vessels. And I’ll find out if I can make you well.”You’ll find Jesus there too. He lives there.”
The surgeon left.
The surgeon sat in his office later, recording his notes from the surgery, “…damaged aorta, damaged pulmonary vein, widespread muscle degeneration. No hope for transplant, no hope for cure. Therapy: painkillers and bedrest. Prognosis: here he paused, “death within one year.” He stopped the recorder, but there was more to be said. “Why?” he asked aloud. “Why did You do this? You’ve put him here; You’ve put him in this pain and You’ve cursed him to an early death. Why?” The Lord answered and said, “The boy, My lamb, was not meant for your flock for long, for he is a part of My flock, and will forever be. Here, in My flock, he will feel no pain, and will be comforted as you cannot imagine. His parents will one day join him here, and they will know peace, and My flock will continue to grow.” The surgeon’s tears were hot, but his anger was hotter. “You created that boy, and You created that heart. He’ll be dead in months. Why?” The Lord answered, “The boy, My lamb, shall return to My flock, for he has done his duty. I did not put My lamb with your flock to lose him, but to retrieve another lost lamb.”
The surgeon wept.
The surgeon sat beside the boy’s bed; the boy’s parents sat across from him, The boy awoke and whispered, “Did you cut open my heart?”Yes,” said the surgeon. “What did you find?” asked the boy. “I found Jesus there,” said the surgeon.
I pray that your December has been amazing so far. Don't let the stress of Christmas cards, gift buying, parties, baking and obligations fog your view. SLOW DOWN!!! What God wants you to be blessed by during this season is what is right before your eyes and God has a purpose for your life!! So take some time and put all the tasks aside and go look at Christmas lights with your family, enjoy sipping hot chocolate in your pajamas by the tree or sit down with your kids and make some hand made Christmas cards!
Be blessed everyone!!!
Monday, November 21, 2011
Bob was an athlete before for many wonderful reasons, but none more important than his reasoning now. He runs, bikes, swims and competes against himself for children with congenital heart defects. He does it for the little ones who were taken too young by their defect, for ones who are fighting through surgeries or hardships and ones who have conquered the most common and fatal birth defect, CHD. He dedicates his events to them, feels the wind for them as he runs and uses their heroism to get him through a difficult moment in a race. He is a man with compassion and dedication to what he believes.
This weekend, Bob came to Arizona to compete in what he says is the most challenging even yet. He completed the Arizona Ironman with a fantastic time of 16:33 alongside his son, also a CHD survivor. We had the honor of meeting him and his sweet wife tonight before he returned to Colorado and while he kept speaking of how Gabriella was an inspiration (which I completely agree) I could not get over how inspiring he is. His humbleness and determination is remarkable. He has beat the odds and has vowed to make the most of the gift he has been given. He truly has a heart for God, in more than a spiritual way.
Bob gave his Ironman medal to Gabriella, stating "Believe me, Gabriella is the true Ironman". It was a unique moment, knowing this man spent not only years and years of training but 16 and a half hours yesterday swimming 2.4 miles, 112 miles on bike and a full 26.2 mile marathon... and handed over this trophy to my little girl. We are honored to be the recipient of such a deep and meaningful gift. Gabriella is truly inspired also, and cannot stop talking about what he did. She is so proud of him.
Bob's blog can be found here: http://www.heartinspired.org/ and on Twitter as @Heart_Inspired. Please follow and support him in his journey as he inspires others!!!
Friday, November 11, 2011
Gabriella had a swallow study done last month, because it was a mommy vibe of mine that her coughing and choking issues were related to her stroke. Sure enough, she has a weak swallow reflex. Her trigger to close off her lung region when swallowing is delayed and causes food and drink to pool right at the opening to her airway. She is successful in clearing out what is there but runs a risk for aspirating! We have some not so easy techniques to practice and help the process. One is always sitting while eating or drinking. Hard for a girl who is VERY active! And the other is no talking for 10 seconds after swallowing. Even harder for a girl who is VERY talkative!We aren't sure if this will improve or not, because of the muscle damage done to her body from stroke, but as always we are hopeful.
Clinic appointments are going well for the most part. It is all a balancing act with medications, but we are close to target on everything! She is growing perfectly and we do not have many concerns at the moment. Her next biopsy will be in February, as we wean her down from steroids and watch what her heart tissue says to that.
School is going smooth. Her school has been amazing working with her IEP and ensuring that she gets the extra help she needs on reading and writing. She is a wiz at math, and is quite the little gossip girl. We have dealt with minimal cootie issues, for which I am so thankful!!!
PJ is doing fantastic as well. He is in dance class (hip hop) and still plays Tball. He is a smart little guy with more daily energy than I will have in the remainder of my lifetime.
Thanks for checking in!!
Friday, September 23, 2011
Paul & I woke at around 5am to watch the boat dock back at Port Canaveral and have some coffee. To our surprise, we were already back at port, and we realized it was all over. We woke the kids because we had a 645a seating assignment for breakfast, where we were able to see our awesome wait staff one last time! We ate and prepared for disembarkation. It was hard to leave for all of us, but the hardest on Gabriella. She took the end of the cruise VERY hard... she was definitely not ready for it to be over. She had some moments of quiet, some of crying. That cruise was WAY too short and time went by SO fast. The kids enjoyed every moment on that boat and at our ports of call. We spend good, quality time on this cruise together as the 4 of us, and met some great people as well. It is something we will save for and peruse again in later years as the kids get older, most definitely. The experience was phenomenal and probably the most fun we have ever had, individually or together! We feel so blessed to have a strong, vibrant 6 year old daughter in her 2nd chance at life and healthy, hilarious 4 year old boy, that we could enjoy that with. We live for today, never banking on tomorrow, and we made the most of that on this cruise!!! THANK YOU MAKE A WISH!
Once we got back to land, we took the Magical Express to the Disney World Resort. We asked Make a Wish to fly us home a few days later than they originally planned, and with a combination of saving and some pixie dust from some kindhearted friends, we made plans for 2 days at Walt Disney World at our expense! One of our amazing friends helped us to stay at the Animal Kingdom Lodge on property, and this place was PLUSH! The decor was amazing, and our room was an outlook room over the savanna, where the zebras and giraffes and other animals roamed around. It was breathtaking how gorgeous this resort was. Once our room was ready, we all settled in for a much needed nap. On the cruise, there is such a great schedule that they leave out room to sleep, so we were all beyond exhausted!
After waking from our nap, we headed down to the busses and rode into Downtown Disney to have dinner. I had made reservations at an Irish place down there and boy was I glad I did! The food was amazing and they had a live band! We roamed around Downtown Disney, which is probably 15 times the size of ours in California! There was so much going on and the shopping.... oh the shopping. I was wishing I would instantly win the lottery so we could have gone crazy down there!
We got back to our resort that night and to bed at a decent time. We were all ready for part 2 of the fun!!!
Our "off" day photos! (remember the captions!) https://picasaweb.google.com/vegaangel82/MakeAWishDay6DisembarkationDisneyWorld?authuser=0&authkey=Gv1sRgCKG30ber6r7T6QE&feat=directlink
Friday, Day 7
Another touch of pixie dust from a friend covered half of our 2 day tickets to the parks, so on Friday we made our way to Magic Kingdom! We also were given the gift of preferred seating for shows, tickets to the Not So Scary Halloween party and parade seating from someone who didn't even know us but works for Disney and wanted to help out!!! So much magic around us before we even got into the park! Pulling up to Magic Kingdom was breathtaking. Our passion for Disneyland is something you would only understand if you too felt it, so seeing the place created off of Disneyland's image but "improved" was like a dream for us (although I was a bit worried I would be critical, lol)! Everything was bigger and brighter! In front of the park is a huge lake, and the ticket stations were so spacious. The train station was HUGE! We even got there in time to see the opening ceremony where the animatronic Mickey opened the park! As we walked down Main Street, everything was so similar but so different, but nothing was more unique than looking at the massive structure that is Cinderellas Castle. That thing is breathtaking! We got some pictures and walked with our jaws open until we found the bakery. The bakery is a universal must for us... Land or World, we must stop at the bakery! We ate some breakfast and started to explore!
Because we wore our Make a Wish buttons, we were taken to see the characters without waiting in line, which was a HUGE blessing! The kids got to see SO many characters and we got to ride almost EVERY single ride in the park. Gabriella even became an honorary pirate with Captain Jack in his show!! The park closed at 7pm for the Halloween party, so we switched the kids into their souvenirs they got on the cruise and they were all decked out for Halloween. More rides, more characters, an awesome parade and FANTASTIC fireworks! As we were exiting the park, we stopped by a location that was housing some very important characters. Only at Halloweentime can you find princesses with their princes, so we got to meet Rapunzel, Cinderella and Snow White, all with their princes! We also got to meet Mickey and Minnie in their Halloween garb. Gabriella was in pure bliss meeting Minnie in this costume, and you can see the excitement in her eyes!!! Flynn Rider showed the kids the crown in his satchel and Cinderella gave Gabriella the sweetest squeeze ever. It was a wonderful way to end the night!!!
14 hours later, my kids were troopers! They walked all day without a complaint, without strollers and with minimal breaks. Being able to experience Disney World with them was just another thing we never thought we would be able to provide them with!
Magic Kingdom pictures! https://picasaweb.google.com/vegaangel82/MakeAWishDay7MagicKingdomHalloweenParty?authuser=0&authkey=Gv1sRgCOeA5MOhy6yAjAE&feat=directlink
Saturday, day 8
Our last day of magic, and exhaustion was evident. We headed to Animal Kingdom for our last day, which worked better because they closed at 5pm, and it gave us time to go back and pack. Animal Kingdom is nothing like I thought it would be! Divided into different countries, it was a LOT bigger than I anticipated! It is like a zoo gone Disney... well, I guess that's exactly what it is! We went right to the Nemo Show since we had VIP seating for the first showing. It was SO cute and it totally made me realize how much I am like Marlin with Nemo, me and Gabriella! After such a traumatic experience in life, I feel a need to completely control her safety and well being, just like Marlin with Nemo. After Nemo, we decided to go into Asia and ride Expedition Everest. Paul and Gabriella went on the ride since PJ was too small, and none of us were anticipating what this ride actually did!!! Gabriella came off of it shaking, but she LOVED it. Just not enough to ride it one more time with mommy. I rode it alone, next to a 12 year old boy who was trying to be so cool.... it was hilarious. This ride is no joke, my friends. That is all I will say.
It seemed a million degrees warmer this day, and I started to feel really sick. Turns out I was beginning to get dehydrated and the heat was making it worse. (That 24 hour drink station on the boat caused me to drink too much soda!!). I took a rest while Paul took the kids on a Jungle Trek. We did some rides, lunch and headed to the Lion King Show. I think the tickets into the park were worth that show alone.... it was AMAZING! We were given the opportunity to meet some of the cast afterwards, which was such a neat experience!! We saw the parade and then made our way to the Safaris before the park closed. The Safaris are rediculous.... so cool. We rode in a jeep out into the savanna and these animals were just feet from us! We even had to stop for a biit while 3 giraffes crossed the road! It was our favorite ride in the park for sure! The kids could hardly believe all of the animals so close to us!!
That night, we ordered pizza and took the time to pack and just sit. We got to see the truck come and fill the giraffe feeder which was RIGHT outside our room, and we watched the giraffes eat their dinner. Bedtime came quick for us all, as the excitement was wearing down and the kids had their fill of short nights of sleep.
Pictures from Animal Kingdom! https://picasaweb.google.com/vegaangel82/MakeAWishDay8AnimalKingdom?authuser=0&authkey=Gv1sRgCMXfq-C55NimOg&feat=directlink
Sunday, day 9
Another early morning! We took the Magical Express to the airport, got all checked in and started our 5 hour journey home. The kids did really well given the length of the flight and how early it was. When we arrived back in Phoenix, our Wish granters were waiting for us and got us into our ride home.
Going home photos: https://picasaweb.google.com/vegaangel82/MakeAWishDay9Home?authuser=0&authkey=Gv1sRgCNuXrcLb4datsgE&feat=directlink
* * * * * * * * * * * * * * * * * * * * * * * * * *
NoTHING lasts forever, but the memories will. We had the time of our lives! Gabriella's wishes came true and she was given an experience that she so deserved after fighting so hard! PJ had an amazing time, and deserved everything just as much for being patient and a great brother to Gabriella and all she has been through. And Paul and I... well, just having Make a Wish bless our family so much satisfied our desire to give our kids the world for those 9 days. Many times, we kept saying that even though it was an experience we will never forget and cherish so closely in our hearts, we would trade every second of it in exchange for our daughter to have not had to go through all she has nor face all she will have to. But that is not an option, so we embraced and will take pride in the fact that we are a Make a Wish family with a medically fragile child who God gave us this opportunity to experience with.
Thanks for reading!!!!!!
The morning started early! The limo was outside and waiting for us at 6am, and the kids had no idea we were riding in a limo! We made it to the airport in great timing where our wish granter Brian was waiting for us. We managed to fit everything into 4 suitcases, avoiding any charges, but we were so happy he was there to help with baggage check. We said our "bye"'s to Brian, got through security and to the most essential place of them all... Starbucks. After we finished our breakfast and coffee IV's we made our way to our gate. The flight to St Louis was full of excitement for the kids! The Stuard was so kind and gave Paul a free Monster drink and kept checking in on us. We had a 90minute layover so we grabbed some lunch at the STL airport before catching our connecting flight to Orlando, of which the kids slept the whole time! I guess the early day caught up with them!
When we landed in Orlando, it was so hectic! I think 10 other planes landed at the same time! Outside security was a Make a Wish sign but for another family. We made out way to baggage claim and ended up running into the other Wish family, going on the same cruise!!! We got our bags and headed to the Hyatt hotel located INSIDE the airport. It was SO nice and convenient!!!! We checked in and got our instructions for the next day and went up to the room to organize our things. The airport/ hotel also featured what was like a mall, so we wandered around the shops and found some dinner at Chilis. We all CRASHED that night! It's amazing how exhausting sitting on a plane all day could be!
Day 1 photos (please be sure to read captions!!): https://picasaweb.google.com/vegaangel82/MakeAWishDay1Travel?authuser=0&authkey=Gv1sRgCPK0m7rL-fetLg&feat=directlink
Sunday, day 2
Florida is 3 hours later than Arizona time, so the next morning 6am wake up was like 3a to us! We got up and got our bags ready to go, as they had to be ready and against our wall with Disney Cruise tags by 830a. I made another Starbucks run (it's 24 hours in that airport!!!) so we could keep our eyeballs open. Our bags would be taken by the bellhop and the next time we saw them was outside our stateroom on the boat later that day! We went down to find breakfast, when we decided none of us were hungry. About 9am we headed to the transportation level of the airport where Disney Magical Express has their own setup. We got all checked in for our cruise, documents processed, transit boarding ticket and our Key to the World cards.
A Disney cruise line bus took us from Orlando International to Port Canaveral, which was about 45 minutes. Every mile we passed, Paul and I were in awe of how gorgeous Florida is!!!! The bus showed us a video about the cruise that had Gabriella and I practically screaming! We were all so excited we couldn't stand it! We passed Nasa from a distance, and came over a hill where our boat sat there in enormous majesty. ** Lets just pause for a moment and remind everyone reading that we are in the group of the most hardcore Disney lovin family out there. We love anything Disney. My house is mainly decorated in Disney something, and you can find a Mickey Mouse in every room. So I will be preferential and passionate about how I speak about anything related or pertaining to Disney. :) ** We were speechless. The boat was GIGANTIC, clean and gorgeous. After I took a moment to take a few pictures of the cruise terminal and boat, we went inside the terminal. Since we did the check in at the airport, we only had to wait in the terminal for boarding to start and our group 3 to be called! Of course, in natural Disney fashion, Characters started to appear in the terminal and we caught Mickey Mouse before his line got 2 miles long and got the BEST family picture! We got the lo-jack bracelets for the kids (not really, but they were tracking devices for them when they went into the kids clubs). Gabriella was getting VERY impatient and wanted on the boat NOW. I can't blame her, I was kinda feeling the same way.... lol. We went out onto the outlook, where even there it was impossible to get a picture of the whole length of the boat. Before we knew it, they were loading people onto the boat at about 1130a. We had some issues as they printed 2 cards for Paul Sr and none for Paul Jr, but once we got that squared away, on the boat we went! We entered the lobby where a big group of crew members waved and clapped and we heard over the speaker "The Disney Dream welcomes the Vega family!"..... yeah. I cried. One of them walked aside with us to point us to a few places and even asked if I was ok since I had tears down my face.
After standing in awe in the lobby for goodness knows how long, we headed up to main deck to EAT. We hadn't eaten breakfast so by now we were starving. Little did we realize, we would never starve again being on that boat!!! We went to Cabanas on the main deck, which is a 18 station buffet style walk up self serve restaurant. That's right, grab a plate or 4 and see how heavy you can make them! The Disney cruises also have drink stations with 24/7 free soda, tea, water and coffee, unlike other cruises where you buy a soda card or pay for drinks. We stuffed our face, and then changed into our swim gear that we carried on with us! The main deck is amazing.... with a deep Donald pool, shallow Mickey pool, Nemo splash pad, a smaller water slide and of course the Aquaduck water coaster, and an enormous LED screen that showed Disney movies or trivia! Gabriella and Paul headed right to the Aquaduck, which ultimately was Gabriella's wish. She wanted to ride the water slide on the boat more than anything else!
We headed up to the room at around 2p, and you would have thought we were all little kids seeing it for the first time! It was spacious in comparison to what I was expecting and the veranda was AMAZING! Waiting for us was a fruit and cheese platter, one of many gifts to come from our Make-a-Wish cruise hostesses Ana and Valentina. Our bags showed up shortly after and we took a few minutes to unpack. The bed was high enough to store suitcases under and the storage was great for our things. I even read ahead and bought an over the door organizer for the bathroom, so we didn't feel cramped up in the room at all! We got a visit from a lady that I connected with before the cruise that made us a hanger for outside of our door, called a Fish Extender among avid Disney cruisers! Another sweet lady with her gave me the BEST Minnie Mouse bag that I have carried everyday since then!
We headed to the safety drill, which was miserable for all the kiddos on the boat, but as soon as it was over we went up to get ice cream from the all day ice cream bar and prepare for our sail away! Of course, in Disney fashion, Mickey and the gang threw a huge bash as we left port, and my most favorite part of the whole boat happened. The ships horn went off to the tune of "A dream is a wish your heart makes". It was my most favorite part of the boat, but I wasn't able to get it on video! I did however, find a video online of it, and you MUST watch. (yes, I am crying hearing it!) http://youtu.be/JJ0CEN-hoj0
We got early seating dining, so we had to go get ready by 545p for dinner. The boat has 3 rotational dining restaurants, and while you change locations every night, you stick with your table number and waiter. We had the best service duo on board (this is my opinion of course), with Delyan as our main server and Katarina as his assistant. The first night, we ate at a restaurant called the Animators Palate, where dinner starts off as plain colored and transitions into a multi colored and bright palate! There are multiple screens around the room where Crush swims around and interacts with people. This is one restaurant from the original boats that Paul and I remember seeing on Travel Channel shows years and years ago! Dinner was amazing. Gabriella had Mickey noodles and cheese while PJ had steak. Paul enjoyed Veal and I ordered some YUMMY black bean cakes! Our waiter not only brought us an appetizer, soup/salad, entree and dessert, he also brought us a dessert appetizer so we could try them all! I blame him for coming home 4.5lbs heavier!!!!!
As if the day hadn't been exciting enough, we caught a show that night after dinner. The Golden Mickeys show was AWESOME and so exciting!!! The boat was a tad rocky that night as we were travelling fast towards Nassau for the next mornings port of call, but none of us had any issues with sea sickness, thankfully! Upon returning to our room, we had a swan sculpture on our bed via towel and a bunk bed magically appeared from the ceiling while we had been out!! I'll admit, I've missed turn down service since we have been home!!! We spent a little bit on our balcony, enjoying the ocean air breezing past us and listening to the waves steadily hit the boat. It was bliss.
First day on board (please be sure to read captions!!): https://picasaweb.google.com/vegaangel82/MakeAWishDay2BoardCruise?authuser=0&authkey=Gv1sRgCLbf_vrf4_6SEQ&feat=directlink
Monday, day 3
We woke to a call from Mickey Mouse, telling us there were some exciting things in store for the day! Mickey was on to something! Our Fish Extender outside had been stuffed with awesome goodies from various generous people (of whom I connected with on FB and Disboards before the cruise). Since proper cruise and Bahamian attire would be SWIM, we got our suits on and headed up to Cabanas, since we had not yet stuffed our face with their breakfast spread. We could see Nassau, Bahamas appearing in the distance during breakfast, and I was able to snap a lot of great pictures as our boat turned and backed into its parking spot. (yes, I say that like it was a VW Bug because that's the precision it had!). We even had a great view of Atlantis from our rooms balcony! We had an excursion planned that took us on a boat to Blue Lagoon to the Dolphin Encounter, so we had to meet in the Buena Vista theater (their movie theater) for our wristbands and instructions for the encounter at 9am. We followed the guides off the boat and on a 10 minute walk through the shops along the dock in Nassau, Bahamas. It took us to another boat that took us 30 minutes off to another island. As we ventured further from port and closer to Blue Lagoon, the water turned into this AMAZING aqua color.... something I doubt could ever be recreated. It was magical, really.
After getting off the boat in this private little cove, we went right to the dolphin encounters area where we went through a quick training. After the educational portion, we all got our things put in lockers and found spots around the encounter bay. We got to meet the trainer and our dolphin for the day, Salvador! They started by doing family shots with the dolphin kissing one member of the family. We, of course, had the dolphin kiss Gabriella, and it was AMAZING!!!!! After family shots, the trainer brought down groups of 8 or 9 people to interact with the dolphin. We were the last group, so we got to see everyone else do it first! The dolphin danced with each person, everyone got to pet his back and belly and even touch his teeth, everyone got a hug and a kiss from him and everyone got to feed him. When it was our time up, PJ was hesitant and Gabriella was VERY concerned about the fish swimming by our feet. It didn't take long though before all 4 of us were in dolphin heaven, enjoying our encounter with this amazing creature. Gabriella hugged him like he was one of her baby dolls.... it made me melt. Gabriella got 2 kisses from Salvador. I like to know that one is for her and one was for Abbie, since Abbie loved nature so much! At the end of the presentation, the other party got out of the water and the trainer asked what we thought. I expressed my gratitude and shared Gabriella was a Wish Kid. She then had Salvador give Gabriella his tail fin. She told us about how doctors come in every 6 months from Animal Kingdom and they test out the animals to make sure they are healthy. They get blood drawn from their tail fin, so allowing someone to hold it showed great trust. She showed Gabriella all of his scars from blood draws, just like she had! It was probably the sweetest and most personal part of the whole encounter, for Gabriella to see how her and Salvador were alike in a small way. It was an experience like no other, and something I couldn't be more thankful to Make a Wish for giving to my kids.
We got some time after the encounter to play on the beach at Blue Lagoon before heading back to Nassau. The sand was soft and white, the water clear and the landscape paradise. The kids were SO ready to finally get their toes in some sand and ocean! We only had an hour or so before heading back, but Paul and I indulged in a Bahama Mama before leaving. We couldn't go to the Bahamas and not have one, right?!? When we got back to the dock, we ended up buying 2 huge conch shells from a local as souvenirs and headed back to our boat. While I am sure it is an amazing place, it was best to get back on the boat before it got dark.
Waiting in our room was a plate of cookies from our hostesses! These cookies, my friends, are the downfall to my existence. If I could eat them for the rest of my life, I'd sacrifice all other foods. They were SOOOO yummy!!! Gabriella watched a movie while PJ quickly watched the backs of his eyelids. Paul and I got ready for the 2nd night of dinner, at the Enchanted Garden. Dinner was again amazing, and we ate enough for a week. The kids persistently begged us to go to the Oceaneers Club and Lab, so after a quick stop to meet some characters in the family lounge, we took them. They practically ran away from us, and Paul and I were left with nothing to do! We didn't plan on taking the kids there, so we didn't research the adult sections of the boat. On our way to figure out what to do, we met the captain of the boat, Captain Henry, and snapped some pictures with him. We explored some of the lounges and bars, but decided we are just way too cool for that boring adult stuff. We ended up making friends with a bartender at one of the locations and learned about the crazy schedule those cruise ship worked work. I had wondered why everyone was from somewhere else in the world, and it is because they work for 6 months straight and go home for 2 months. I give them so much credit for what they do!!!!!
We got the kids after a while in the club and we all headed back to the room to catch some much needed rest!
Photos from Nassau! (please be sure to read captions!!): https://picasaweb.google.com/vegaangel82/MakeAWishDay3NassauBahamas?authuser=0&authkey=Gv1sRgCLDhztXXscKM1wE&feat=directlink
Tuesday, Day 4
We knew we wanted to get up early and be ready to get off of the boat this day, so we had room service delivered bright and early to our room. Again waking and changing into beachwear, we looked out and saw we were docked at Castaway Cay, Disney's private island. It was something I have known about for a long time but never thought I would have the honor to see, and here I was, waking up and looking at paradise. The kids were SO excited to spend the day at the beach, nonetheless Disney's beach!! We got in line downstairs and were one of the first to get off the boat and onto the island. It was a 10-15 minute walk to the family beach, but we got a great resting spot right along the waterside. The sand was still freshly raked because no one had made it to the beach and I think my kids were the first ones in the water that day! They saw a ton of fish and a crab before the waters got a little busier. Thanks to our hostesses, we got a complimentary getaway package with tubes and rafts and snorkel gear! We spent a while just enjoying the beach. Gabriella was my brave one, going out in the water and letting fish swim around her feet. PJ was hesitant, not travelling much past 4" deep. Time seemed to speed by before it was time to send Paul and Gabriella for their stingray encounter! We got them all signed up and to the learning hut to find out more about rays. After that, into the ray pool they went! They got to touch and feed the rays!!! Gabriella was concerned about the big fish by her feet most of the time, and was too scared to feed the ray, but she was still able to touch them! Paul and Gabriella spent some time after that snorkeling in the ray pool. I couldn't BELIEVE my daughter was snorkeling!!!!!!!
Castaway has 2 big restaurants, which are walk up self serve BBQ places. We hit lunch after the ray encounter and went to soak up some more time on the beach. We had gotten an invitation the night before for a special appearance in the family D Lounge at 245p, so we headed back a bit early to the boat for that. It was starting to get to be a little much with the sun at that point, so we were ok to head back, but it would have been soo nice to have more time at that island! My kids thought it was the bees knees!!! We got changed and somewhat freshened up (as much as one can after a day in sand and salt water) and headed for our special invite event. It was a Make a Wish only meet and greet with Pluto and Mickey! We got to see all the Wish families on the boat and even met a 17 year old boy who was transplanted at Loma Linda!!! More amazing than that was meeting Desiree, the mom of a 3 year old cutie, who lives in the neighborhood we used to live in about 25 miles from our house now, also on their Wish trip! The kids ate some of those amazing cookies they had out for the families, and we got some pictures with the characters as well as out Wish cruise hostesses. It was a great little treat to spend that time with other Wish kids!
Returning to the room, we had another yummy fruit and cheese plate waiting for us. It was good, but we had more important things to think about.... like PIRATE NIGHT!!!! Something all 4 of us were VERY eager for!!!! We all got cleaned up and changed into our pirate garb and headed down to a restaurant WAY too pretty to be filled with a bunch of scuurvy scoundrels! We ate at the Royal Palace that night, but it featured the same pirate night menu as the other restaurants. We both had the steak, and it was probably the yummiest meal in my opinion! Immediately after dinner was a short Mickey's Pirate Party on the main deck we went to. PJ went into meltdown mode, but it quickly passed. The kids spent some time in the Oceaneers Club again while Paul and I did some souvenir shopping for all the things that would bore the kids. We went back a short bit after to get them so we could grab our place for fireworks on the main deck that night! The fireworks were AMAZING, partly because it is Disney but mainly because we were watching fireworks from a majestic piece of machinery in the middle of the ocean. Amazing. After the fireworks was a dance party that Paul and I were amped for, but the kids were not having it. We headed back to the room to rest for the night and prepare for our day at sea!!!
Castaway Cay day pictures! (please be sure to read captions!!): https://picasaweb.google.com/vegaangel82/MakeAWishDay4CastawayCayPirateNight?authuser=0&authkey=Gv1sRgCI_W5_HD8NjWKw&feat=directlink
Wednesday, Day 5
Today was a big day! Paul turned 30!!!! This was our all day at sea, so we got up and headed for a sit down buffet breakfast at Enchanted Garden. The spread was great, and we took no break from shoving our faces! We took the kids to do their souvenir shopping, where we had to convince Gabriella to get something OTHER than what she already had! She wanted to get this Marie stuffed animal from Aristocats, of which she already has! They ended up with great souvenirs. Gabriella got a Rapunzel dress and a sailor Minnie plush. PJ got a Captain Hook costume and a pirate gun. At the end, Gabriella told me she made a good decision getting her dress. Stay tuned for pictures of them in their garb!!!
I did not take a ton of pictures during the day. We spent all day lounging at the pool, letting the kids go on the waterslide over and over, and talking to new friends. We grabbed some yummy lunch from Flo's V8 Cafe that is poolside and just enjoyed the ride on the ship! They sounded all the tunes on the ships horn, and my heart melted at the top notch thinking it took to make such a marvelous boat.
We dressed up this night for Daddy's birthday and went back to the Royal Palace for their traditional dining menu. It was bittersweet knowing it was our last night, and Gabriella was already struggling with the idea of the trip ending so fast. We spent the evening together.... attending a character meet in the family lounge, going into the kids club with the kids and meeting some very important characters in the main lobby. We went down at 10p to the main deck to enjoy some ice cream and watch UP on the big screen. Looking over at my fancy dressed kids and husband, eating their ice cream and enjoying that moment is something I will cherish forever. As many beautiful things that we saw on this trip, that moment took the cake for me. I am one lucky and PROUD woman to know God entrusted me with all that He has given me in my family.
We returned that night to one last special gift from our Wish hostesses. A signed Mickey Mouse plus that now sits proudly on the shelf in the living room. A precious reminder of the time we had!!!!
A day at sea, (please be sure to read captions!!): https://picasaweb.google.com/vegaangel82/MakeAWishDay5DayAtSeaPaulS30th?authuser=0&authkey=Gv1sRgCIvBocCb-KjXyQE&feat=directlink
to be continued.......
Thursday, September 22, 2011
Our journey began long before the day we left for Gabriella's wish trip. August 2009, Gabriella was visited by her wish granters and wished to go to Disney World. Two weeks before going on her October 8th trip, she suffered her massive stroke and her trip was cancelled.
Fast forward to January 2011, where after countless hours of therapies, endless doctors appointments, and most importantly a life saving heart transplant, Gabriella was approved by doctors to travel again and was able to re-wish. This time, wishing for what she originally wanted but could not do due to medical limitations.... the Disney Cruise.
Because it takes a while to plan, our trip was scheduled out into September 2011, which gave us plenty of time to prepare and anticipate. Gabriella was chosen to be a recipient in something called "The Big Give". Not sponsored by Disney or Make a Wish, the Big Give is just a humble group of giving and talented ladies who shower certain wish kids with gifts to get them ready for their trip. Thanks to this Big Give, both of my kids had plenty of airplane activities and snacks, cuddly blankets, beach towels, bags, and clothes for every single day on our trip with accessories to boot! Paul and I even scored with some great shirts and goodies as well! We couldn't have been more blessed to receive 25 packages over the course of the couple months leading to her trip!!!!!
Little did we realize when becoming a wish family that not only would we end up with an experience of a lifetime with memories that are priceless, we would be so blessed in relationships. We have connected with numerous people along the path, but our wish granters take the cake. They were so much more than just a liaison between us and the business end of Make a Wish. They have become friends, family even. They were there through Gabriella's stroke, transplant and rejection. They kept touch in those tedious waiting periods between treatments or transplant. They made sure to treat us every couple months or so to dinner, just to catch up. And you could see how they went from meeting a "poor little girl" and wanting to do everything right for her wish, to being people who genuinely love my kids and our family and shared so much joy in seeing Gabriella finally fulfill something we were all unsure would ever happen. They are forever stuck with us, poor things.
I put together an album of our pre-wish journey.... from the first visit, through all of the Big Give packages and into our send off party. Oregano's in Chandler went above and beyond in their generosity and compassion to make Gabriella's send off party a success, and her wish granters Brian and Ama threw the party of all parties for the special Princess.
Enjoy the pictures!! LINK: https://picasaweb.google.com/vegaangel82/MakeAWishTheBigGive?authuser=0&authkey=Gv1sRgCNaH26O5iInVtAE&feat=directlink
Be looking for my next entry! I am breaking the actual trip into 2 entries!
Tuesday, September 20, 2011
Gabriella wasn't the least bit nervous. She was ready. She was excited and eager to move onto this new chapter in her life. I'm not surprised because that is what we have focused on since day 1. We have carried the burden of struggle or difference FOR her, encouraging her to keep her mind on normal things for her age. Because we did focus on that so strong, she was in the right place mentally to start school.
Of course, that meant something different for me.
Sending your baby to school for the first time carries a universal emotion. Excitement, tears, sending your baby off. It's hard. But today was brutal for me as the mom of Gabriella, stroke survivor, heart transplant recipient. The day I learned she was in heart failure and had the possibility of not surviving, I went into war mode. I fought within every boundary possible, and sometimes outside of my boundaries, for her. I spoke for her when she couldn't speak, I have tended to her basic needs since she lost her right arm function, I kept a strict account of every medical appointment, medication, insurance issue and service to ensure she had the best care possible. My job, my life, my goal has been her in a way unlike the typical parent since May 2009. I have fought to keep her. Today felt like in those cartoons when they try and rip the soul out of Daffy Duck and it smacks back into place like a rubber band. When we took her to school and watched her go into line with her class and walk into her building, I felt like my soul was stretching around the building into the door and down the hall, as she walked further away. I was severing that 100% connection we have had. That total control I had over making sure she was always breathing right or had good coloring. Of knowing exactly what she was being exposed to, touching or how often she was cleaning her hands. 7 whole hours of handing her over to a classroom, and to her independence.
But thank God for the classroom, school and independence. My saving grace and why I did not end up in some Country mental institution was because her Sped teacher was holding her hand walking her to class this morning and checks in on her frequently, her godmother works in the front office, the principal and teacher are great and understanding, the nurse is on my speed dial and I on hers, and her cousin is in her class. On top of it all, I will humbly but proudly pat myself on the back for instilling good habits and hopefully god decisions into Gabriella.
This is what we fought for. This is what we begged God to give us. This is what we eagerly anticipated to honor Abbie and those first days of school she would not see but from heaven.
So though I shed more tears than I can count, and the minutes ticked by like a slow leaking faucet, she did fantastic at her first day. I am so proud!
Monday, September 19, 2011
Until then, here are pictures from PJ's FroYo birthday party at the end of August and his birthday lunch at Benihana on his actual birthday!
Thursday, September 8, 2011
He is currently in Hip-Hop class, plays T-ball, can count REALLY well and knows almost all of his letters by sight. His best trick is doing a headstand for as long as he can stand the blood rushing to his head! I would say his favorite thing to do is spend one on one time with Mommy, but I am just biased. ;)
I am so blessed to be his mom... thankful to God everyday for giving me and Paul our beautiful babies. Today I am reminded of the miracle God allowed us to be a part of in bringing new warriors for Him into the world.
Here is a journey our Bubba's 4 little years......
|My newborn Prince|
|PJ's 1st Birthday|
|PJ's 2nd Birthday|
|My Goofy boy at 3!|
|And my Bubba today!|
Monday, September 5, 2011
We are working up close to Gabriella's Make-a-Wish trip! The anticipation the kids harbor everyday is SO exciting to watch! Gabriella was even chosen to be a recipient in the Big Give, an independently formed group of crafty and loving women who shower certain Disney wish kids with gifts and hand made goodies. Receiving these packages for the kids (and occasionally something for Paul and I) has been better than any countdown calendar we could make!
Gabriella is also SO excited because she will be starting school soon!!! While this is VERY hard on me, I can't help but feel her joy. School started already, but she has been receiving homebound services so she is on track with the classroom. Knowing my godson is in her class, and my comadre works at the school... I know they will be my eyes while she is there. Sending her off is not the hard part, it is EXCITING knowing she is growing and thriving and alive. It is the fact that for 2 years I have had 100% control, or at least 100% involvement in everything this has been through. To relinquish that and trust other people with the smallest details of her existence that can affect her whole life is a BIG thing for me. For her it will be learning to independently operate. She relies on me so heavily because of the trust we have built in our bond through her journey, and I worry about her confidence and spirit being pulled away.
Here are a few pictures I wanted to share of my amazing babies!
Wednesday, August 17, 2011
(I apologize for not posting sooner. I did an email update but it never posted and got lost in cyberspace!)
Thursday, August 11, 2011
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?"
And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith?
So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."
Tuesday, August 9, 2011
Monday, August 8, 2011
Sunday, August 7, 2011
Tomorrow morning Gabriella will have her cath/biopsy at Phoenix Childrens. This will be the main indicator regarding her recent rejection as to whether we fully battled it or if she still has some low level of rejection lingering. It also will tell us how her pressures are in her heart. In June during her rejection, her heart pressures were more than double what they should have been. Her function will take a while to get back, if it does, to normal... but its vital to that recovery that her pressures be close to normal!
They will put her under and perform the procedure, then we will spend the whole day laying low as she recovers the procedure and allows the site to clot. Its a long day for her and we will have PJ with us to boot....
I'll post tomorrow how she does and hopefully a big fat ZERO rejection report by Wednesday. :)
Monday, July 18, 2011
Brief recap, in August 2009, Gabriella wished for her Make a Wish trip. She had been telling us she wanted to go on the Disney boat (thank you Travel Channel...lol), but she was far too unstable to be out to sea at the time so we had to veer her away from that idea. Make a Wish planned a beautiful week long trip to Disney World instead, since Gabriella also said she wanted to go to Cinderellas castle! Of course, as most of you know, Gabriella suffered a massive stroke 2 weeks before going on her trip. The recovery from stroke, waiting for transplant, transplant and recovery, and adjustment time after there led us to January 2011 when she was finally deemed safe for travels!
When her Wish Granters came back to talk to Gabriella in February this year, almost exactly 18 months after her first visit, she boldly declared she wanted to go on the Disney boat! Make a Wish has put together a lovely 5 day, 4 night cruise out of Florida on the Disney Dream. We leave in a couple of months to enjoy this opportunity of a lifetime! One day of travel, 5 days on a boat and the plan was to fly home that night after we dock.
Gabriella picked 2 excursions from a list about 4 pages long! When we dock at Castaway Cay, Paul & his princess will be in thigh high waters alongside the ocean feeling and learning about sting rays. Gabriella LOVES sting rays... I think it is their velvety feel and how they flow like satin. Then when we dock at Nassau, she chose to do the 6 hour long dolphin encounter where we will have a lunch by a dolphin tank, go through the day to day life of a dolphin trainer and best of all, SWIM with dolphins! All 4 of us get to do this excursion and I don't know which one of us is more excited!!!!
Paul and I have put in SO much of our energy into making Gabriella feel like any other kid, and it shows in her attitude. She never acts like she is different or lacking in anything, because we absorb any of that for her and discipline her just the same. Her doctors, therapies and meds are just a part of her and we move on quickly from whatever we have to do that day medically to put more emphasis on our "normal" portions of life. We have seized opportunities to make memories and been able to give both of the kids more than we believed possible, because tomorrow is never guaranteed for anyone, but especially a medically fragile child. This Make-a-Wish trip is something monumental in that process for us, and I know that is what Make-a-Wish strives for. Something absolutely unattainable for a family like ours. An opportunity out of the ordinary for ALL of us in a positive way, not just out of the ordinary because we are a family with a "sick kid" on a lifetime medical journey. It is an escape, a memory to top all others and a way to "reward" my warrior princess and patient prince for the life they have been pushed into but embraced so well. I can only believe this is what all families feel about Make-a-Wish and that is why it has become such a passionate charity of mine, to which we try and frequently take donations of new toys and activities to. PLEASE contact your local chapter to see how you can help!!!!
Of course, you all have gotten to know us so well, that you know we would sell our souls to the devil for our kids. We encourage them to dream big... because nothing is impossible! In that, we asked Make-a-Wish to send us home from our cruise a few days later than planned, extending our trip at our own expense, and taking the kids to a place we will probably not be able to go to again in the near or distant future.... Disney WORLD! This means we will be responsible for hotel (that was ever so generously provided to us by a friend who has access to the good stuff), Disney World tickets and food for those extra few days. In the grand scheme, this is so minimal. The blessing of our flight already existing saves us that much money on a typical Disney World trip, and the intensity of the week already planned by Make a Wish already filling our cup of excitement, that we see food and tickets as something achievable and sugar on top of this wish.
We have been saving up for it for a couple months now, and I have been trying to do side jobs and sewing to make money. My side job has been SLOW but I am focusing my energy on sewing until my fingers bleed between now and then because it is something I can do any hour of the day without committing my time and risking not fulfilling due to an unexpected appointment or issue. I have rarely used this blog to promote my web ventures, but I think this is a fitting opportunity to do so since all the money will be used towards her trip extension! I have 2 shops online, one that sells my excess fabrics and one that sells my creations. I make custom tutu's, nursing covers, burp cloths, cloth wipes, diaper/wipe cases, etc. and am working on a batch of frilly flip flops that will be sold at a local hair salon! Here are the links to my shop if you would like to check them out:
Fabric Shop: http://www.etsy.com/shop/gabriellasheart
Sewing Shop: http://www.MaggieMooDesigns.com (past items sold can be seen here: SOLD ORDERS)
And as always, Gabriella's donation account through PayPal remains open and accessible from the right sidebar under 'How to Donate to Gabriella' (and PO Box mailing address under the Contact link above). I just ask that if you wish for any donations through there to be used for her trip, you put that in the donation notes so it can be expensed properly & honestly. This is very important!
I can't keep a full time job with Gabriella's demands, so this is my job. Making side money, selling my creations, and being the best mom possible to my little boogers! I thank you for sharing the links and spreading the word! I always believe it never hurts to put the need out there, because how else does God lead people to fill needs if they do not know they exist!!?
Saturday, July 16, 2011
I searched, interviewed and toured charter schools in April and May to prepare for Gabriella's 1st grade year this fall, fully knowing I was not going to put her in a general public school after what we saw and experienced for Kinder and those overworked teachers. I finally found a brand new school that I felt comfortable with, a place that FINALLY seemed like I could handle sending her to school. They have a dedicated speech therapist ON STAFF and a crazy strong focus on the students physical and mental well being. We got my godson into it and my sister in law even got a job there! Things were looking forward for Gabriella's ability to flow into a school setting and me be comfortable with it.
Then I got a call from the special ed department of the new school while Gabriella was in the hospital last month. Long story short, he proceeded to tell me that because another district wrote her IEP and she was on homebound status for Kinder, she would need to remain homebound through them until they were in a position to reevaluate her again and take her off homebound, then they would transition her slowly into a classroom setting. I was heartbroken, mainly because I had convinced myself this was what was happening, I was sending my princess off to school with kids and germs and self-sufficiency. I got my head wrapped around it, got her excited for it (even through her apprehensiveness) and it was going to happen. Then I was told to just erase my plan, it was all changing. That was a lot of work on my heart to get where I was and I did not take the news well.
Then it dawned on me, she was in rejection and given those hard core meds to stop it, which also meant knocking out her immunity again. Not only was she educationally and socially being held out of starting 1st grade, but now it was also medically necessary. I spoke to our transplant coordinator and she confirmed what I was thinking, and said it could be a few months into the year before her bloodwork shows us she is back at a level thats safe to be in school like that.
So now we are going to be starting 1st grade, yet again as a homebound student. We will be assigned a teacher, and after a couple months of homebound (medically permitting) she will start mornings only with me going with her, slowly weaning her (or me) into full time school. I don't know about you, but to me this is sounding like she will not be full time 1st grade until January or so.
I am struggling, yet again. Homebound, again. I feel even more now like she would be getting a better quality education if I enrolled her in the virtual home charter academy I have heard such great things about. Committed wholly to home school, local co-op field trips and groups, and the flexibility to meet all doctors, therapies AND school at our time schedule. Instead, we will spend another half of a school year in limbo... which doesn't excite me. Gabriella needs a structure, to be challenged and to be busy... and I feel I can have better control over that if I just commit to homeschooling.
I need to pray about this some more and try and eliminate from my pleas to God what MY plan is. School has been something of a struggle for me from the moment Gabriella was diagnosed, and I wish I had clarity towards one decision or another. Could you drop a line to God on my behalf? See if He tells you anything? :)
Tuesday, July 12, 2011
Gabriellas ECHO has been looking steady, and we have been able to increase her Lisinopril to aid in the recovery of the damage her rejection caused. Her bloodwork her been hovering around target ranges as well. We couldn't be more thankful for her recovery! Gabriella is now on weekly clinics again, pretty much up until her Make-a-Wish trip in September, to watch for any slight changes in her function. We will be doing blood work weekly as well, so I am sitting in a very comfortable spot as her mom knowing we are closely monitoring her. We also condensed her medication times and now we give meds 4 times a day verses 7.
No major medical updates besides these. It is just time now, giving her heart ample time to heal and recover. I have some more updates in the coming days on her school year & Make a Wish trip!
God Bless and thank you all for the continued prayers!
Wednesday, June 29, 2011
"I got a call today from the genetics doctor at Loma Linda. Everything is still in the very early stages of gathering some answers, but I will share a few things here. Gabriella did have a change in the gene associated with cardiomyopathy, meaning she was born with the mutation and it was not anything that happened during my pregnancy that caused her condition. That was a slight relief, because I naturally had little bits of me that wondered. The issue with this gene, which I will call the T gene because the code names won't mean anything to all of you, is that it is the type of mutation that shows in adult onset cardiomyopathy, in ones 20's or 30's. So why did Gabriella fall into heart failure at 4 years old? This take us to a second gene mutation they found, we will call the M gene. On file, this combination of mutations has not ever been recorded in a case of cardiomyopathy. Given that they have not seen this combined, there are no statistics or information available. The genetics doctor says this causes her to consider that the M gene mutation caused the T gene mutation to progress, causing Gabriella to fall into a condition she shouldn't have experienced until later in life and at a much less severe level. This M gene, in my understanding, is like an instigator that made the T gene issues bigger than they needed to be."
And right before this recent stent in the hospital, I got our follow up results!!!!! We were scheduled to go in to genetics at Loma Linda, but this was cancelled due to her hospitalization. We will have to reschedule, but the genetic counselor at the genetics lab spoke to me in detail and explained the results.
Neither Paul, PJ nor myself carry the disease causing gene linked with HCM, mentioned above as the T gene. This means it was a "spontaneous" mutation (per the geneticist) or in my words, the way God carefully created her. Paul and PJ both carry the M gene, also called a variant gene. But without a disease causing gene for the variant gene to modify, it is a harmless gene.
This means so much. It means we do not have to worry about PJ having this same condition. It means we do not have to worry about this being a genetic condition passed through family lines to our 11 nieces and nephews or hundreds of cousins. It means that if we do choose to have more children one day, the risk of having another CHD baby is that of any other parent, 1 in 100, with only the added risk of the modifier gene being passed down.
I always say to everyone that God gave us Gabriella for a reason. Her story is to be shared as a physical reflection of His mercies and love. Regardless of the results, we would have believed this, but it makes it even more special and isolated knowing she truly is unique and was created with such intricacy, something we were blessed to be able to see through gene testing.
Monday, June 27, 2011
Gabriellas bloodwork done today by home health was great! Her levels of immunosuppressant are a little high now, which is better than low. Her magnesium levels are being stubborn but we will continue watching it. If her levels stay stable we will remove the PICC line before next weekend. We went in today for an ECHO and that too looked great! Function returning and leakage improving. We have a few more blood draws and a clinic appointment Thursday for this week and I am sure it will only get better!
Our coordinator was telling me how a girl they just did a biopsy on last week showed grade 3 rejection with no symptoms while Gabriella showed a grade 1-2 with total decline. Its amazing how rejection works and how it is so unique for each kiddo.
We don't know what our future holds with the risk of further rejection but I know this was another battle won by Gabriella! This girl keeps pushing on through whatever is handed to her.
Friday, June 24, 2011
My lack of sleep last night over my aggrivation built confidence to tell the docs on the unit I wanted out today. She isn't on any advanced monitoring and only here to take meds orally & have blood drawn. Luckily my amazing transplant team agreed and is sending us home on home health and a PICC line. A nurse will come and draw levels daily so we can intricately adjust her med levels. We got her 12 outpatient meds delivered and sorted, my advanced schedule of 7 med times through the day and supplies to get us by at home. One last dressing change and we are waiting for transport to take us out!!!
We will proceed with caution for a while. Since she has a PICC line, just finished an aggressive immunity treatment over the last 2 weeks and her levels are lower than desired of immunosuppressant, we will be semi-hermit for a while. Well worth the trade off to be home and in our element.
I couldn't be more blessed to be sitting here watching her do so well again. Makes these last 15 days away from home, away from PJ & Paul and sleeping on a recliner with infrequent showers SO worth it. I'm so honored to have a fighter on my hands. I need to remember this when she is strong willed about other things... I'd rather have her stubborn than one who gives up!!!
Wednesday, June 22, 2011
We were supposed to be in Loma Linda right now for genetics, biopsy & kidney function testing. Seeing as how its 113 in Phoenix, if we can't be in California, I'll find the positive in being here that we are not outside!
We are now a few rooms down from some transplant friends. Please pray for little L, who is almost 1year post transplant and having lung & intestinal issues! I love seeing our friends, just wish it wasn't in the CVICU. :)
I'm so thankful for this gorgeous new hospital. It truly is comfortable in an odd way. We don't feel cooped up at all and are thankful for the amazing nurses we have had. It has all made a difficult issue tolerable and we will stay willingly until she is safe to leave!
Monday, June 20, 2011
They have stopped Gabriellas IV epinephrine and her r-ATG treatments are complete. Today they stopped her IV Lidocaine, magnesium and sodium fluids... And we are hoping she reacts well! The next step is to stop her IV Milrinone.... But that will come in it's own time. Her r-ATG did it's job, depleting her t-cells, and it was successful in stopping her rejection.
So we have gone our first round of rejection, and it was a severe one! We are ever faithful that this will not happen again, but we will not take for granted the healthy times we have and will always be on guard now that we know she is the kind of kid to quietly fall into full blown rejection.
If we can get her levels right of immunosuppressants, get her magnesium and sodium levels back up to where they should be and continue to see progress, we can get out of here! Last night was night eleven here, which could have been miserable in the old unit but is luxurious and tolerable here at the new tower of the hospital!
Thank you all for prayers up to now, and we ask that you do not stop! We believe in complete healing and restoration, and all God wants is for us to simply ask. Prayers to Him are precious not just for him but also us. God is always near, always listening, and does not need fancy words... Just loving meaningful conversation. How lucky are we to serve such an amazing god....
Saturday, June 18, 2011
The game plan is to finish the r-ATG and get her off other IV meds, switching most to oral. Since she is moving towards being stable enough to go home mid to late next week, we will be checking blood and ECHO every 2 weeks after discharge to keep her out of here. She also will have another biopsy in 1 month to recheck pressures and rejection. The r-ATG treatment will take 3-6 months to fully remove from her system, so we will watch her blood counts to see when she is 'safe' again, but until then she is back to wearing a mask and keeping home more than we had been. This affects school in August (along with other factors I learned yesterday), something far too complicated and better suited for another blog this week when I have time to go into detail.
Gabriella is going home on more meds than she did post transplant! We are going back to all of the original meds she was sent home on last year, plus supplements of nutrients she is lacking, plus meds for her declined function. Her heart needs a significant recovery time, so we will watch for signs of improvement in the relaxing phase of her heart- the function that was badly affected. One day we will attempt to lower the function medications and see how her heart reacts. We are faithful for full restoration though, and will allow God His timing in doing that.
We haven't wanted for anything in here. Nurses have been wonderful and spoil my girl rotten, the gifts & activities have poured in like candy to keep us busy, I have snacks galore, but more importantly we have felt the love in every visit or message. We haven't really felt lonely up here because there is always someone calling, messaging or visiting to make us feel connected to outside. We do miss our hard working daddy, and little brother PJ, but we are doing what we need to in the short term to have long term time together.
God bless every one of you. I hope your Fathers Day weekend is filled with as much hope and blessings as ours!!!!
Thursday, June 16, 2011
Please continue to be fervent in prayer! The cries to heaven are working and we know God will guide the doctors and provide complete healing... Our faith has never wavered!
Wednesday, June 15, 2011
The initial option today was to transport Gabriella back to Loma Linda. Reasoning behind that was more big picture. IF she goes into a more critical status where she needs ECMO, Loma Linda has the resources to care for her from a transplant standpoint. They can relist her while they cannot yet do that here. After we all conferenced with Loma Linda, they encouraged us to keep on with the full Thymo treatment and watch what her blood says. They said they'd be happy to take Gabriella but they are confident in the treatment. So we are staying here for the time being while Loma Linda runs some in depth labs on her. I'm confident in the plan, but not comfortable. I won't be until they see improvement in her. But I won't be comfortable anywhere until she improves. And that's what I continue to ask for in prayer, is improved function and restored structure.
Gabriellas spirits are completely turned around today. With the exception of being angry that she can't walk around, she's overall in good spirits! We have had loving friends, comforting family and faithful prayer warriors come today and it is just what we needed to keep us smiling.
Like Paul said to me earlier, we need more than medicine... we need God.
I'm going to have an 'iced tea party' with my smiling girl, enjoy right now and pray for many many many more years of tea parties. <3
Tuesday, June 14, 2011
We are pending biopsy stains on humoral rejection. I was going to post details on that but will wait because the stats aren't anything I want to keep looking at until we find out a diagnosis. If it is not humoral, we will further investigate.
Gabriella is critical so I ask that you do not stop praying for clarity of diagnosis and Gods continued protection over our princess. We have been enveloped by your prayers and blessed by the kind words. I am trying as hard as possible to reply to all, but I am reading them all for sure.
God bless, from a mommas broken heart. Good night.
For the medically savvy: Last nights r-ATG treatment went well with little reaction. Today they decided to start another medication called Epinephrine for her heart function, since cardiology was surprised at the more critical status her cath showed. Along with the Milrinone, steroid, fluids & lasix. We are trying to combat her heart failure while also attacking her rejection.
They just finished placing a PICC line and will remove her IV leaving just the PICC in her arm and plasmapharesis cath in her neck. I had a minor freak out session because it seems we are placing a lot of ports with no sure direction, but after talking to the docs I'm better understanding of it. Goes with my theory that if you don't feel right make them convince you. It was the first PICC I stayed in for but it went well.
She's peeing more and we are watching her renal system for kidney function to make sure that doesn't give out on us.
Once we get these biopsy results back we will decide whether we move forward with plasmapharesis or r-ATG (thymo). Whatever it is, I wanna know now. Time is ticking and doctors are anxious.
Gabriella is very tired and sad. She keeps asking me why she has to do scary stuff. PJ went to Bible Camp today and she was sad she couldn't go. This is so hard on her 6 year old little spirit, but her willpower & stubbornness is still in tack! Even after 3 doses of light sedative, she was still telling the PICC team what to do.
Who else gets to hang with a warrior today? I know I do. I love that girl.
Sent from my BlackBerry