Reflections

Visitors

We've had quite the time this last week. Dad and Angie left early Thursday morning and friends from Utah came Saturday. Sean and Liz Williams(friends from Sacramento) brought their little girl, Kate, who just turned 2! What a cutie. We had a great time together but not nearly enough of it. We went out to the "Mini Gran Prix" and rode go carts, the BIG slide, and the dragon coaster. Livi even got to do little go carts all by herself. She was so nervous at first the worker rode around the track with her while standing on the side of the cart. Then she was so excited, when he got off she would wave enthusiastically to us and forget to watch where she was going...head first into the tire border. She loved it regardless. Aaron surprisingly had grown a good couple of inches since the last time we were there on Mother's Day weekend with Papa T and Grandma Susie, 'cause this time he was big enough to go on the dragon coaster...he is definitely a little thrill seeker. Livi did the coaster for the 2nd time this time...didn't like it so much. Little Kate LOVED the slide. She went down it 8 times! The first time she came down she had absolutely no expression on her face but she kept going back for more. Fun times. We had lunch at Jason's Deli and then after naps went to the infamous water park. Aaron was his usual self, Kate joined in the fun and eventually Livi played on the wild side. Just a little. It was great to spend the day with the Williams and to be reminded that distance only separates our physical bodies, not our friendship and love for one another.

As far as the picture goes...it actually says alot about the three different personalities of the kids. Livi loves love, Aaron is enthusiastic about everything, and Kate, well Kate is like marble cake with icing. Very calm on the outside, likes to know what's going on but very energetic underneath. In this picture, it's pretty clear she doesn't quite know what's going on. For more great pics, check out our friends' blog to the right!

Sunday was another day of visitors. Two girls, sisters, from my YW church group in Sacramento had flown into town for EFY at UNLV and were able to visit with us. Bri and Leena were brought over for a time by their mom's cousin Carol and played with the kids. The girls babysat for me quite a bit while Bill was in training. It was so great to see my kids having so much fun with friends from Sacramento.

Deja vu...almost

Sunday night, Monday morning, 1am Livi was having extreme abdominal pain. At 3:30am, after consulting with Dr. Bernstein, I took her in to Sunrise Hospital's emergency room. She was scheduled to have a follow up CT-scan Tuesday, so Dr. Bernstein wanted to go ahead and get it done along with blood tests and x-rays, all a very regular thing in our lives now. Anyways, they took x-rays right off and found that she was constipated. Some of you may be wondering why we didn't know that, well...when regular for your child is every other day, and that's been happening constipation is the last thing on your mind. They also wanted to do a CT-scan to see how her pancreas was doing, so, she had to drink contrast, AKA barium. She got half way through the 8 oz drink and puked it all up. Then they wanted her to take Malcitrate (a fast acting laxative) she got 1/2 was through that 2oz drink and puked it up along with the remaining contrast. A few hours later, one more try on the Malcitrate...that's gonna be a no go...more puke. A few more hours to let the tummy rest and one more shot of the contrast. She has to drink 8 oz of fluid in 45min max, sounds pretty easy huh? For a girl who maybe eats a total of 6oz/day that's a big fish to swallow. After 45 min she had successfully kept down 4 oz, the nurse secretly dumped the remaining 4! The scan showed a "change" from the last scan, and so while doctors played phone tag to figure out the "change" good or bad, we continued to wait in the ER. Livi had a bed, I had an upright chair. 15 hours from when we came in, we were released having learned that there was a slight improvement in the pancreas. WHEW, but UUUGGGHHHH! Bill had stayed home from work with Aaron and when we got home to them everything was back as it should be. Dr. Bernstein called to see how we were doing and Livi started crying and said she missed him.

We're good. Livi's doing great and most importantly we're still on track for our family camping trip this next week!!!

Livi's love for Aaron

As Livi and I were leaving for the hospital in the wee hours of Monday morning she started to cry. She was emotional and has been a bit more so since all the trauma in her life, but the things that she says stop me in my tracks and make me grateful for a child who is so in tune. She said, "I'm scared. Aaron's going to be so sad when he wakes up and doesn't know where I am. I won't be there for him." Upon getting released from the hospital she said, through tears, "I'm so excited to see Aaron. I've been away from him for too long." The love that Aaron and Olivia have for one another is such a blessing to witness.

Deep Thoughts
Olivia has this brain that is constantly working. The other day after her bandage had come off inadvertently, we had to change her dressing, which is quite the process. We have to use 6 betadine and 6 alcohol swabs to clean and then re-bandage. She hates it! Her prayer that night, "thank you that we could do the 6's good and that we won't have to do them again." Today she was able to go "needless" so we got to swim! After swimming with our friends, the McMillans, she yelled, "let's go home and have BBQ'd hot dogs with needless Livi!" Tonight I reaccessed her without any nurses around. She was great and even tried helping.


It down right stinks that she is having to go through this. Whenever she knows a needle is going in or out of her port, she gets so anxious and "just want(s) it done now! But she always says,"I'm really trying not to be scared. I'm trying to be brave." Lately I've really been taking the time to explain to her that if she wasn't scared she couldn't be brave. "Being brave is what you are if you do something that you're scared of." She's doing so great and we are so proud of our Livi!




This picture is from 2 weeks ago. I thought the sky was beautiful and fitting as a backdrop for Olivia. She is fighting so hard, being so brave...there are definite storms surrounding her, but she remains so strong.

Day to day livin'

Aaron and Livi LOVE playing on their whale and dolphin. They pretend to be trainers and doctors!

Aaron is just now starting to become interested in reading books. He enjoys the fact that Livi can read books to him. So do I!
Can you sense the intensity?!

Lovin' the park, especially when there's shade and we don't need the hat!

He'll fill "gaggy's" shoes someday!

Just keepin' the neighborhood safe! He's our "post man."

Special Visitors

Livi & Aaron have anxiously been awaiting their arrival, and alas, it has come. Gee and Papa arrived this last weekend and the kids have been in eutopia ever since. (Papa even put Aaron down for his nap yesterday, without a pacifier, and the sweet little love didn't even cry!) We've been having a good time doing different things; playing games, doctor visits (for Livi and Angie), BBQ'ing, going out to eat and swimming. Last time Angie and Dad were down here they had a horrible dining out experience and as a way to ask for a second chance the resteraunt comped them a great gift certificate. Livi was so excited to go out she got dressed in her Easter dress that my mom had given her last year. She said, "It's special to go out, like when we go to the movies, so I wanted to to dress nice."She shares the same thought on this as I do. I do think going out is a special thing and should be treated as such, therefore I try to dress up as much as possible but still fit the crowd. Livi looked like a little princess. The rest of us dressed nicely for the occasion, Aaron in a darling outfit from Gandma Susie, but Livi stole the crowd. With her, "no thanks" attitude towards hats inside she was quite the little one to behold.

And, as far as the resteraunt winning us back, the waiter could not have been any better. He worked with the cooks to prepare a non-fat spaghetti for Olivia that she actually ate! Not the whole thing, but more of than anything else I can remember!

Previous to going out to dinner on Monday, we were able to enjoy the pool. The kids loved it! So did I. Angie didn't get to go in due to the burn she got on her leg, darn motorcyles. (Livi had gone with her to the doctor's and reported back that Angie was brave!) For a moment, Angie and I actually thought we would witness a miracle...my dad almost jumped in to the pool! But, he didn't.

Brendon, from upstairs, came with us, which is always a treat. Aaron loves playing with him. Aaron would push Brendon into the pool and then push himself in! (He would stand on the edge, place his hands on his own back and "push" himself into the pool! It was really funny to watch.) Livi did great and felt quite at home once more in the pool. Needless to say, when my kids have fun, life makes sense to me, and seems that much more sweet!

Incredible Weekend

Olivia has been doing so well we wanted to take advantage of this time, not knowing how long it's going to last. At her doctor's appointment last Tuesday, they gave us the go ahead to take a little weekend trip. We decided on Sea World over Disneyland so she could "sit and watch" instead of having to "go and do". The idea backfired,in a good way. I'll explain more later. Dr. Bernstein's NP, Jennifer, wrote a letter for us to take to the park to help facilitate us with any needs that Livi may have. I decided to take the initiative and call the park ahead of time to see what could be done to help us or even make the experience more enjoyable/memorable for Livi. The PR representative basically told us no, they couldn't help us with anything unless it was through "Make a Wish". After that dead end conversation I asked to speak to the medical staff to make sure that they would be able to accommodate us with Livi's meds and I.V. Lisa, the medical director for the park, was very helpful. When I mentioned my conversation with PR and expressed my disappointment in them not even being able to provide a stroller for Olivia, Lisa was surprised! "Oh, we can get you a stroller no problem. We can even do more than that. Let me talk to some of the animal care takers and see if we can do some things behind the scenes." She wasn't going to be there on Saturday when we went, so she told us to meet up with her assistant, Carolle.

We stayed in a hotel in San Diego Friday night and what an experience that was. It was our first time with Aaron not being in a crib. The kids had so much fun. They were bouncing back and forth between the two beds eventually both settling down with me. Lucky Bill! Saturday morning we arrived at the park in time for the opening, keyed by the playing of the Star Spangled Banner. We headed straight for the medical office and were greeted be an enthusiastic Sea World nurse. Carolle was FANTASTIC! She had a double stroller waiting for us, Sesame Street stuffed animals waiting for Livi and Aaron, a schedule of some events that she had set up for "the kids" to do, and another nurse, Ashley who was to get our shopping needs taken care of. "What do you guys want?" We were understandably confused by the question and its follow up of, "How big is your car?" To which we responded, "big". They proceeded to make a shopping list between the two of them of souvenirs to get the kids and me! They loaded the kids up with Shamu tattoos and TONS of stickers. We were on our way. Carolle first took us to a penguin exhibit that didn't look quite open to the public. We got to see warm weather penguins and when Carolle introduced us to Mary, the penguin keeper all of a sudden we were face to face with one of the penguins that had come to her by calling its name. We were able to pet him and and learned that the lack of feathers around their face is so they can stay cool.

After the penguin meet-n-greet, Mary gave both the kids penguin ID bracelets which were recognized by trainers throughout the park.

Next we were on our own with strict instructions to meet back in a couple of hours time. We saw the Killer Whale show, "Believe" and sat by the flamingos to eat an early picnic lunch. When we met up with Carolle the fun really began. First thing was to take care of the shopping that Ashley had done. We were presented with 2 each of blankets, hats, shirts, scrap booking kits, and an over sized dolphin and killer whale. (Thankfully they kept it all for us in the office til end of day.) Off to the baby sea lion. She was found on the beach abandoned by her mother and currently was only 3-4 weeks old. SOOO cute and well mannered. She took the warm bottle (98 degrees to be exact) so well from Livi. It was the first time that she'd ever been around anyone besides her care taker. Olivia loved it! While back behind the scenes we also got to see a pregnant dolphin that was due within the next month or so. It swam right up next to us! Amazing. Also, a tank full of eels waiting by their feeding tube (YUCK!) and seals that couldn't get enough of the sun. (Hence the little guy being prodded back to his pool with the care takers broom.) All the animals in the back were their because they were somehow afflicted. "Hey, just like when I go to the hospital!" That's right Livi.

After meeting some of the workers we had another break before we were to meet up again. So we munched on some cotton candy and a bucket of popcorn, thanks to Carolle, while we made our way over to the kids play area. The kids loved this free time where they could run/walk (in Livi's case) anywhere they wanted without being tied down. Bill and I just followed them around. They got wet in the fountains and even got a front of the line pass for Liv for a ride. It was Sea World's equivalent of the spinning tea-cups so Bill sat it out. The kids and I went on it and had a great time! By this time they were pretty well worn out and fell asleep in the stroller as we went to our next destination, the Arctic Zone.

Once again Carolle met us here and took us through the back gates to meet with Gareth. What a great guy. First he took us to meet Snowflake, a female polar bear. She was beautiful and big. Gareth said she's half the size of the male bears who stand at 11ft! None of the bears have contact with the trainers beyond the doors. They are like dogs in the essence that you can train them with commands but they can never be completely trusted. Also, they are very habitual. So never do they have the same daily routine. We got to see as snowflake was fed fish with tongs through her cage door and watched her play a game of high five with the trainer.

It took a few tries but Gareth eventually got Nanook up on the scale.

Next, was my most favorite part. Nanook is a male Beluga whale who lived in the arctic. They are white for camouflage, for they live under the ice. Nanook means shark in the Inuit Indian language. There is a scratch along Nanook's back that they say was from a shark. Gareth was "not so sure, but it's a good story anyways". Nanook is so beautiful and graceful. All of his movement was like watching slow motion, but with such power. And sooo gentle! I don't quite remember how old he is, just that when they are young their teeth are large and sharp and over time they wear down.What a magnificent creature. I will admit, it was more than a little nerve racking having Aaron right there. Aaron is not the type of little boy to sit/stand still for any length of time and the pool was very cold and VERY deep! Livi did get a little upset and actually dropped her pants after we were soaked by the water coming onto the platform after a huge roll, but we were able to quickly reassure and redirect her. Thank you Gareth!

We pushed past the crowd and made our way back over to the Shamu stadium. Let's take a moment and clarify. There is no longer a Shamu. Shamu is more of a reference to the killer whales at Sea World. Now that we have that settled...(Every time anyone asks Livi if she got to see Shamu she rolls her eyes and looks at me as if to say, "don't they know?" It's pretty funny.) We waited outside the gate for one of the trainers to come see us. Jen was very generous with her time, as were all the trainers/care takers. She explained a few rules and then brought us in to see the whales. Four of them! Ulisses, Samson, Nakai, and Kalia range in age from 3 1/2 yrs old to 30. The eldest being Ulisses, is also the calmest, go figure, and that's who we had our one on one time with. He also has the most bent dorsal fin of the group. Jen explained that the dorsal fin is subject to gravity and over time, because he spends so much time near the surface of the water, Ulisses' fin has drooped. (I guess everything can have the drooping issue with age.) The video says it all, even though you'll have to tilt your head to the side for the majority of the film. We didn't realize that video doesn't auto correct itself like the photography. Oops!

This picture was so fun to take. The trainers, Jen and her partner Tom, told us to stand in that spot and be aware that we would get wet (hence we are shielding the kids), but to not look back when we felt the splash or the picture wouldn't turn out. The anticipation of the splash was killing me. Bill and I wish we would've looked back, what an amazing sight that would've been! We agree that it wouldn't have ruined the picture, just made it different. What more can we say than WOW!

After the whales were let back out to play, Samson wouldn't let go of his "blanket"(the big flotation raft down on the left) Jen took an ample amount of time with Olivia explaining to her which whale was which and how old they are. She and Tom even signed a necklace of a whale's tail and wrote "Believe" on the front. The entire Sea World whale experience is now based on a"Believe" theme. The necklaces were throughout the park and it was the one thing that Livi said she had wanted.

Quickly now, over to the sea lions! They're hungry and we were running behind schedule. Hoards of people were crammed in to watch the feeding of the sea lions. The buckets of fish were brought out and people were pawing to get at them. The trainers seemed to be used to this and efficiently backed them off and then, called US forward! It was a little overwhelming to say the least. Everybody yelling, including the sea lions,...and where was Bill. Carolle and Sunny(the trainer) were so concerned that Bill and Aaron were missing the experience and I was a little scared of how the crowd would start reacting if we didn't hurry and start the feeding. (By the crowd, we can be talking humans or ocean mammals. At this point I couldn't have told you which species was louder. Our other halves were finally found and ushered in, the camera was given to the designated photographer and feeding time began. What a rush! I fully understand the term "feeding frenzy"! At first it was, toss a fish and watch the excited recipient dive into the water, a bit like 3 flies up in a swimming pool, but the barking was escalating and one sea lion, wow, what a set of pipes. He would let loose on one long note and not let up! Every once in awhile I would look down at my right elbow and see a sea lion who despite his noise was behaving very well. Thank goodness! He easily could've taken a bite of my elbow, that's how close we were, or they were to us! Towards the end the kids had given up and Bill and I were throwing handfuls of fish, in any direction, not even seeing their final resting place. We all agreed how amazing it was that not one single fish went wasted. No matter how bad the toss, the sea lions were able to get their mouths on the fish. What fun!

A thorough wash of our hands, my shorts, and Bill's shirt (all of which had fish remnants on them)and we were off to Livi's most anticipated experience, the dolphins. She still smiles when she talks about it. Ashley was the dolphin trainer that helped give us this once in a life time chance. She was great. So cautious with Olivia. Livi got to spend so much time with Tobi the female dolphin. All of the dolphins in the pool were female, but Tobi was another pregnant one. She, like women do, was reluctant to show her belly because she was pregnant. The instinct of a mother to protect is amazing! Once again, as the crowds looked on Livi learned the signs to have the dolphin sing, swim, wave, roll over and splash! It was as if the trainers were there for us. So much time was taken. It was simply amazing! I think the thing that surprised me most was how soft to the touch all of the animals were. Their skin is so sleek it appears to be hard. This is not the case. Because of their blubber they are all very...squishy. The beluga whale the most. Makes sense, since he lives in the coldest climate, he has the most blubber.

As the evening approached we took the kids back over to the medical office to hook Olivia up to her TPN(IV nutrition). We caught an evening show of Cirque de les Mer (fitting that it was in the bay) and shared a couple of dinner plates between the 4 of us. With Livi's pancreas still severely damaged she is still on a low-nonfat diet so we have to be very picky. Not an easy thing to do when you're at the mercy of other people preparing the food. Luckily she's a smart girl and won't just eat because something sounds good. She eats a very minimal amount and we're able to make it work. During dinner we stretched out on a grassy hill and let the kids run around. Aaron loved running down the hill and even flipping forward. Livi was enjoying making up and singing her own songs, she gets that from her dad.

The dolphin show was the perfect end to a great evening. The kids loved seeing Tobi and the other dolphins that they had got to meet earlier in the day and to watch their speed and agility was incredible. The show also featured a couple of pilot whales that were amazing to watch.

The trek back to the car was quite the experince, not like we drew the crowds' attention or anything! It was such a great day. Definately not one that will be forgotten anytime soon or probably ever! It makes me laugh when I think of how everything came together. When we got to the park Carolle had planned the baby sea lion feeding and Nanook, the Beluga whale. Everything else came as trainers heard about Olivia and wanted to do something special for her too. Each of them took the time to talk about their animals' medical care and the tests that they have to do. They really helped Livi connect. As we went from one place to the next the trainers would ask where we had gone and what had we gotten to do there. It was almost like they were trying to one up eachother. Good for us! Thank you to everyone at Sea World who took Olivia's pain away for the day and in doing so carried our burden. We will be forever grateful to such caring individuals.

(Just a quick side note:It's hard not to notice the "binkie" in Aaron's mouth in EVERY picture and of course, Leo (the lion) He's a bit like Samson the killer whale in that regard, also now in the way he eats. (Ever since he fed the whales we have to remind him to chew!)...needless to say Monday morning the binkie broke somehow. Huh? Livi says, "But it wasn't an accident mom!" SHHH, we won't tell Aaron that.)

Bill's cousins dropped by our hotel later that night to say hi. Aaron was ZONKED! He couldn't move a muscle. We laid him down on the hotel bed and he was out til morning. Good thing too, because we had more fun planned out. Sunday morning we drove out across the bay to Coronado Beach. It was great. The sand was beautifully white and warm. The water was cold but that of course didn't stop Aaron. Bill's cousin Matt met us at the beach and had great fun playing with the kids. Livi LOVED playing in the sand and building sand castles. Lucky us, a friend of my aunt had just sent Livi a care package with a great big sand bucket in it. It was the center of our village! After several hours enjoying the sand and the surf we got desanded back at Matt's place and hit the road. It was a long 5 hours and Bill did it solo, but we made it...great job honey!

WOW! What an amzing trip!!!