Wow, I can't believe it has been almost a year since the last post. It has definitely been that no news is good news! Lydia has had an amazing (relatively healthy) year compared to the first three of her life. She had a couple of minor bouts of rejection, but they were able to correct those by adjusting her meds. She also had a few Immunoglobulin Infusions when her IGG levels would get low, which was residual from her Chemo. She was excited to get those infusions, though, because she loved the one-on-one time with me or Brian for 4 or 5 hours. She also was excited for the games, shows, popcicles and food she got to choose while she was there, not to mention doting attention from the medical personnel.
Now we have more good news. Lyds went to the Liver clinic yesterday for a check up and her blood pressure was good enough that Dr. Book said we could stop her blood pressure medicine. Yeah!!! She is now down to just her anti-rejection med.
We are so grateful that she is doing so well. Again, we want to thank everyone who has prayed and exercised faith in behalf of Lydia and our family, and helped us in so many ways. You have truely been angels to us!
Lydia was recently granted a wish from the Make-A-Wish Foundation of Utah (M-A-W). The whole experience has been a wonderful ray of light for Lydia and for our family. Last spring, Lydia was appointed two wish granters, Rhonda and Bette, to help her declare her wish and make it come true. It began with our family going to The Wishing Place in Murray for Lydia to make her wish. Before we went there, Lydia was sent a special key in the mail to unlock the Wishing Room. When we arrived at The Wishing place and met Rhonda and Bette, we played a game which helped Lydia to think of and verbalize her wish. She wished to see Barney. Ever since Lyd's was really little she has loved watching Barney. She knows many of the songs and loves to dance and sing along to them. She gets severe leg aches fairly often (most likely from the steroids) and Barney has helped many times to get her mind off her pain until the Tylenol kicks in. It's also a favorite show for her to watch in the hospital. After she declared her wish, she took her special key to the Wishing Room door and unlocked it. The floor of the wishing room is made up of squares of glass with colorful lights under them. The squares lit up in a sequential trail that led Lydia to a metal cone where she placed her wish. The lighted squares then led her to the cone stand where her wish was sent to see if it would come true. We enjoyed some refreshments, the kids played with toys and we took a tour of The Wishing Place. Throughout the building there are several touching pictures and stories of children who have been granted wishes. There is a star hanging from the ceiling and a page in a scrapbook for every child who has been granted a wish in Utah. In the back yard there is a beautiful garden area with a pond, a bridge and benches. It is a special place, built with love and caring. Our family had a fun, exciting afternoon.
Shortly after making her wish, we got word that it was granted. At Universal Studios in Florida there is an area where Barney and his friends put on shows. We were going to Florida for a week to visit Barney and the other theme parks there, but we needed to wait until she was three years old because the place where we would be staying (Give Kids The World) required the children to be three and older. This was great with us because it gave us something to look forward to. Lydia's birthday is in October so we decided to go in November. In the meantime, we were invited to attend local family activities of the Make-a-Wish foundation. Also, Bette and Rhonda periodically gave Lydia thoughtful gifts. One of these was a darling Disney "Marie" outfit for Lydia's birthday. When she opened it she was very excited and immediately took off her clothes and put on her new "kitty" outfit.
Lydia had a star raising party the week before we left on our trip to hang her star and get her scrapbook page. Relatives, Lydia's nurse Corrine and Rhonda and Bette attended her star raising party. Jason and Tammy (Lydia's aunt and uncle) gave us a basket full of autograph books and disney blankets that they had made for the kids and fruit snacks. My kids loved these gifts on our trip and still love using their blankets. Rhonda and Bette presented us with money to cover all the expenses of the trip, as well as souvenier money for each of the kids. They also gave treats and activities for the kids to do on the trip and a darling disney scrapbook that Rhonda made.
We left for the trip on Wednesday, November 9th and returned on Tuesday, November 15th. When we got to the gate to check-in for our flight, they told us that the plane we were scheduled to fly out on had a bird get caught in the engine on the previous day so they had to downsize our plane. They offered us flight vouchers that would cover another trip for each of us if we would wait for a later flight that day. We didn't have any plans in Florida for the first day except checking into Give Kids The World (GKTW), so we felt blessed that we could have another trip by waiting. Delta also gave us meal vouchers for Breakfast, Lunch and Dinner in the airport. We ate breastfast there, then went to the Tracy Aviary to see the birds. It was a fun day with a great bonus. In the afternoon, we went back to the airport. We ate some lunch, got some dinner to take on the plane, and boarded the plane.
When we arrived in Florida, there was a very kind volunteer there to greet us from Give Kids the World, even though it was almost midnight there. He helped us gather our bags, get our rental car and gave us good directions to GKTW. Give Kids the World is a 70 acre resort where children who have life-threatening illnesses can enjoy a majical, memorable, care-free week with thier families. This was exactly the kind of week that we had there. GKTW is run mainly by volunteers with around 1200 shifts filled each week. We learned a lot about the goodness of people during our stay there. (Visit http://www.gktw.org/) to learn more about this amazing place and see pictures of the fun places there.)
When we arrived at GKTW, they had a nice hot meal ready for us in our nice two-bedroom villa. The next morning we ate breakfast at The Gingerbread House Restaurant where we sat at child size tables decorated with thousands of real peppermint candies and surrounded by thousands of dolls from around the world. We enjoyed almost all of our breakfasts and dinners here. They were varied, delicous meals served to us by caring volunteers. After breakfast, the kids rode several times on the Enchanted Carousel, trying out several different animals. We then enjoyed our first of many ice cream treats at Ice Cream Palace which is open all day, every day, for whenever we wanted ice cream. After a delightful morning getting a glimpse of the fun that awaited us at the GKTW village, we ordered a lunch to go from Katie's Kitchen at GKTW and headed off for a fun afternoon at Gator Land. We all really enjoyed seeing lots of alligators, watching some gator shows, holding a baby gator and feeding and petting tortoises. Alyssa and Dallin bought some real alligator heads for souveniers. Parker and Spencer bought some gator whips and Lyds got a pink squeaky gator (go figure). That evening we went back to GKTW for a Christmas celebration that they have once a week. They have a Christmas parade, horse-drawn carraige rides, "real" snow, treats and Santa visits.
On Friday after a hearty breakfast, yummy icecream and a few turns on the Carousel we set off for Universal Studios to have Lydia's wish of seeing Barney fulfilled. At the Barney Theatre, we were seated on the front row along with another little Down Syndrome boy who was staying at GKTW. At first, when the lights turned down, Lyd's was scared, but as soon as she saw Barney she got really excited. She and Parker and the other little boy and his sister danced and sang along with about every song. We were asked to wait, along with the other GKTW family, for the other guests to leave after the performance. Then Barney came to talk to Lyd's and give her hugs and get pictures with her. It truely was a wish come true for her. It was so fun to watch! We finished out the day with riding lots of fun rides and seeing the sights at Universal Studios.
Saturday was the day for DisneyWorld. We had looked at the map to decide which rides looked the funnest and made a plan of attack. Because of the passes which we had, we were able to get on the rides very quickly. We were able to go on all the rides that we wanted to. Lydia is too short to go on many of the rides and Parker is too short for some of them, so I would often take them to other rides or areas while Brian would go on the big rides with the other kids. This works well for us since I get queasy on many of the big rides, but Brian loves them. In the evening, we went to the Epcot center. They had different foods from lots of different countries. We tried a few for our dinner. While Brian took the other kids on some rides there, I took Lydia to see a lot of the Disney Characters who were lined up to greet children. She was excited to see them, especially Pluto who is one of her favorites. Brian and the other kids went on a really fun ride called "Soarin". This was one of their favorites of the trip.
On Sunday we enjoyed a slower morning at GKTW. We went to chuch, then to see the Orlando Temple. After the temple, we visited the wife and daughter of a friend of ours, Cory Chinen. Cory was working, but he had come to see us when we were at Disney World because he is a Japanese tourguide at the theme parks. It was great to be able to visit with him and his wife. We hadn't seen them since their wedding. They are such fun people and their daughter is beautiful. It was just the right timing to have a more low key day in the middle of our trip.
Monday morning we went to Animal Kingdom. They had a Safari Ride that is probally about as close to a real safari as you can get without it being the real thing. We rode in a jeep/bus safari type vehicle out to see many different kinds of animals. They were living in very natural looking habitats. There were many of the regular animals that you would see on a safari, but there were also animals which I've never heard of before. It was interesting to learn about them. Brian and the four older kids went on a ride called "Everest". Parker still talks about the scary Yeti from that ride.
On Monday afternoon we went to Legoland. Our whole family enjoyed this park a lot since we are all big lego fans. All of our children have enjoyed playing with legos since they were very young. Every Christmas, for many years now, the boys have wanted a lego set. The detailed lego creations which were displayed throughout the park were really neat to see. There were also some fun rides which we enjoyed. One side of Legoland was bordered by a large lake. They put on a fun Lego pirate waterskiing show which we watched.
Legoland closed early in the evening which was just the right time for us to make it to the Medieval Times dinner which we had reservations for. The Medieval Times dinner show was another big hightlight of the trip for our family. The building is shaped and decorated like a castle from that time period. We were seated at a long table in front of an arena where they put on a knight jousting show. They served us tomatoe bisque in a bowl with a handle, bread, roasted chicken, ribs, roasted potatoe and a fruit pastry. They didn't give us any silverware so we ate everything with our hands. Parker loved being able to eat everything with his hands. The food was delicious. The show was very entertaining. There was a king and his daughter the princess who sent her noble prince to save the kingdom from a bad knight. The knights were skilled horsemen and jousters. It was a really fun last evening of our trip!
On Tuesday morning after packing and cleaning up, we enjoyed our last delicious breakfast at the Gingerbread House. Alyssa and Lydia got a manicure and pedicure at Twinkle Hope's La Ti Da Royal Spa. We took some turns on the Carousel, explored and enjoyed the fun in the Castle of Miracles, and ate another yummy icecream treat. It was a great last day to a most incredible trip!!
We did get a flat tire on the rental van when it was time for us to head to the airport which made it a rather stressful departure, but Brian handled it like a champ. We can't complain a bit about the flat though since so many people had done so much to make it a wonderful, stress-free vacation for us. Because of it being a different vehicle, it took a little while to figure out how to use the jack and tools. These delays along with needing to drive on the spare tire at a slower speed on the freeway, made it really tight to catch our flight home. Almost everyone was already loaded on the plane when we got to the gate, but we were blessed to make it.
We truely had a majical, delightful trip-of-a-lifetime. Our hearts are full of gratitude for the countless people who have given so much, in so many different ways, to make this trip possible for us. It just magnifies the gratitude we feel for all who have helped our family in countless ways and prayed for us during the past few years. We love you all and are grateful for your love!!
Spenc and Lydia enjoying some brocolli (at least the taste of it for Lydia since she just sucks out the flavor and spits it out)
Shortly after birth, Lydia was diagnosed with a rare liver disease called Biliary Atresia. This is when the bile duct is blocked or too small, causing bile to back up into the liver which causes psorosis of the liver. When she was 6 weeks old, she underwent a surgery called the Kasai procedure in which they removed her bile duct and attached her small intestine to her liver in its place. This was in hopes that her bile would be able to flow properly and her liver would function properly. As weeks and months passed after her Kasai, it became evident that there was already too much damage to her liver and she would eventually need a liver transplant. She is now 15 months old. She continues to show signs of psorosis of the liver with a variety of symtoms. One of her main struggles for several months was not being able to grow because of malabsorbtion of fats and proteins. She has been on IV nutrition for a couple of months and it has been helping a lot. She was stuck around 13lbs. for several months but is now up to 16 lbs. If she puts on a couple of more pounds, she will be big enough for the portion of my liver that they could transplant to her. She is a very sweet, precious baby. I call her my "sweet angel baby" and she is!