Firefghter Ty!

Ty is in the Yellow Helmet


3rd guy from the left

4th guy from the left


Ty is officially a Scottsdale Firefighter! We can't believe it has finally happened and it is very exciting. Academy has proven to be very challenging for both of us. He leaves a little before 5am and is put through strenious physical workouts and training most of which is outside. They also have classroom work, and Ty usually comes home between 4 & 5 with 1-2hrs of homework. It will be this way through December. But it's what we asked for right? just kidding~ Ty loves it and is really getting attached to the Scottsdale Department & I have to admit it is a lot funner to answer the question "what does your husband do?"

We are back! and it was truly a wish come true for our little girl. Here is the run down plus lots of pictures:

Monday- An Excursion limo picked us up and took us to the airport. The kids thought it was so cool, and called it the princess car. It also made loading everybody and everything up really easy. We were met at the airport by our wish granter who helped us all the way to security. It was an easy, short flight and our rental car was ready to go and waiting for us. We had two rooms at the Paradise Pier Hotel, one of the Disneyland Resort Hotels. Immediately we were treated special. The Hotel supervisor came out to meet us personally, and told us to let them know if there was anything we needed & the kids were given balloons. We spent the first night getting dinner, setting up all of Cloey's medical supplies and ooohing and ahhhing over the fancy hotel.

Tuesday- We had special passes to get into the park an hour before it opened, so we got there as soon as we could (about a 1/2hr early). Cloey was in her medical stroller and wearing her Make-a-Wish shirt and we were escorted to the front of the monorail line. We went on the first rides we saw, Nemo and the autotopia cars (the kids favorite). we had a card that let us go up through the exit of the rides and not wait in line, and usually even get special treatment there, like going immediately on , or picking the color of the ride. All of the Disney Cast Members were extra friendly (if that's possible) to us and Cloey, getting down and talking right to her, which she loved. Then we went over to the Princess Fantasy Faire. Cloey LOVED the castle. She spent nearly all of her spending money at the princess gift shop, and was amazed to see all the princess stuff in one place. We were in there for a long time. Cloey got her Lanyard with 4 princess pins on it. If you are not familiar, Disneyland does pin trading. You can trade special Disney pins with any Cast member wearing the lanyard & pins. Cloey caught on real quick and loved trading pins, of course they all traded (or just gave) her the best ones, and talked to her and hugged on her, which she just eats up. At 10:45am we went down to the storytelling area and were escorted in front of the lines. Sleeping beauty came out to tell her story and Cloey started yelling "hi Sleeping beauty" at the top of her lungs as if she was coming out to tell a story just to her. This was extra special because just before we left I had borrowed the Sleeping Beauty move since Cloey had never seen it. So at that moment she was her favorite. Allthough she would never admit to anyone that she ever has a favorite. She just always says "all of them" After the story we were told to wait there for our personal meet and greet. Cloey didn't know what was coming and was happy just to sit on the Princess chair. Cinderella must have forgot her key because while we were waiting, she had to cut through to the back of the stage. Cloey saw her almost immediately and started to freak out, I literally had to grab her with both arms because I was afraid she was going to take poor Cinderella down. She waved politely, and walked past. Cloey was so happy, she would have been fine if that was as close as she got. Shortly after that they called us back to a little room, where Cinderella & Sleeping beauty were waiting just to see Cloey. They talked and hugged and even danced together. Cloey told Cinderella how she has pet rats just like her. I really almost lost it. She was oblivious to everything else, all the pain and struggles she has gone through, the effort it takes her just to breath, all of that was gone. She was just a happy little girl living her dream. They stayed with us for quite some time, then we were taken out to the main area where everyone was waiting for a coronation dance with all the princesses! they learned princess moves and danced with ribbon around a pole (like a may pole). All the princesses payed extra attention and blew kisses just to Cloey. That's when I lost it.

After that we went back to the hotel for lunch and a break. Cloey needed to take a nap on the ventilator, to give her enough energy to make it through the afternoon. Ty & Lainey took naps too, and Cal and Emily took a quick swim. Then it was back to Disneyland! We took Cal to the Indiana Jones ride as a reward for suffering through the princesses all morning. Cal had really been looking forward to it because of the recent happy meal toys & movie previews. He was tall enough, but Cloey was not. I took him on and I could tell he was worried. He was clinging close to me, I pointed out the bugs on the walls and he said "don't tell me, just don't tell me!" then when the boulder fell he was really scared and started crying. I had to carry him off the ride! when we came out Ty went with Emily on the ride and I took him to spend his money that he was itching to spend. I started to walk past the Indiana Jones shop, but he said he wanted to go in. I said "I thought you were scared of that ride?" and he said "but I still like the guy!" so he got some stuff there and was happy. The next ride Cal was looking forward to was the Pirates of the Caribbean. so we took him there hoping that would make him happy, but he was scared there too. We did as many more rides as we could before we were exhausted, including the teacups which quickly became one of Cloey's favorites. Then it was back to the hotel for dinner and Bed. Emily was a huge help getting up with Cloey's machines at night and helping with her care in the day. She even let us sneak back to the park for a mini date, which was really nice since that is where we spent our honeymoon.

Wednesday- Some family met us at the park, so that was an extra special treat. We started at California Adventures. Ty, me, Cloey & Cal went on soarin' over California. We all thought it was really cool. Then was the buzz lightyear ride, the kids & Ty really liked it. Then we took the kids on roarin rapids, I thought Cal wouldn't be too scared because it wasn't the pretend kind of scary, but he didn't like that either. Cloey got soaked and thought it was real funny to run out and give dry daddy a big hug. He would have been more amused but he happened to be on the phone with someone from the Scottsdale fire department who had been trying to reach him to offer him a job (to be continued.......). Then it was back to the hotel for lunch and a quick nap. We went to the Wish lounge (a special place to rest, get refreshments & info in Disneyland just for Wish kids) The helpful cast member told us where the the best place to sit for the parade was and to get there soon, so off we went. it was kind of a long wait, but a barber shop quartet came by and made Emmy sing, so that past some time. We were sitting on the curb right under a tree, and it was well worth the wait. The pictures just don't do it justice, every one had to stay right on the curb and if the started to come at all close the the characters they were quickly put in place by a handler. Except Cloey. The first float was Sleeping Beauty, and the good fairies were walking in front. Meriweather came right up to Cloey and gave her a big hug. Through the whole parade, the characters came and gave her hugs, the ones on the floats blew kisses and spoke right to her. She was being treated like a princess, like the parade was just for her. It was perfect. Then we rushed over to make the last Jedi academy training for Cal. Unfortunately, he wasn't picked as a jedi but he really liked watching. Then it was more rides, including the Peter Pan ride, They liked that one so much they are still running around pretending to be Captain Hook and Wendy. Cal says it's because you "really fly" on that ride. Cloey bought a sword in the gift shop, and as we were leaving a cast member chased us down. He said "hey you left my store too fast" and Bent down to trade pins with Cloey. He gave us all one & Cloey a few, one of which was a "year of a million dreams" pin. Those pins can't be traded, but are only given to special people. She really liked to trade pins. Then as we rushed to dinner at Ariel's Grotto, we saw Minnie & Mickey Mouse. Of course there was a long line to see them and we were already running late. So we decided Ty should just take the kids over and see if they could squeeze them in. Before they even got there, the handler said "everybody, we have a special Make a Wish friend here, please back up" They not only got to take pictures with them, but Mickey & Minnie spent a good 10 minutes hugging and playing hand games with them, it was so cute. At Ariels Grotto, Make a Wish had reservations for us. We met Ariel on the way in, and throughout the dinner all the princesses (except Sleeping Beauty, which Cloey pointed out) came by to the tables. They spent extra time with Cloey, and even Cal had them sign his autograph book. Since it was our last day at Disneyland we wanted to stay as long as we could. So it was back to the park for more rides. We decided not to go and wait for the fireworks, because there was so much left we wanted to do and we could see them from our room, and anywhere in the park. We got Cloey a Mickey ears hat, pink with a tierra and a veil. Of course with her name on the back. We also had to get a picture in front of the Gibson Girl ice cream parlor with all of our Gibson girls (I took a picture there on our honeymoon). When the fireworks started we all stoped to watch. then when we were waiting to get back into fantasyland to go on more rides (it is closed until it is all checked out after the fireworks) a cast member told us to go over to the show fantasmic while we waited. He said it was worth it, and it really was. We weren't able to get to the Make a wish section (front and center) because we got there right as the show was starting, but we got to watch from the wheelchair section, and it was fantastic, they especially liked all the characters on the boat at the end. We squeezed in a few more rides, and as the park was closing we headed back to the hotel. Lainey had fallen asleep in the stroller at about 9pm. Cloey was out the second we put her in her medical stroller, and Cal was falling asleep sitting on the foot supports of Cloey's chair and in danger of falling forward and cracking his head open on the concrete. Absolutely precious.

Thursday- It was off to the beach. It wasn't too cold, and 5 or 6 dolphins were so close the coast guard was flying over and sending the fishing boats away. The kids buried dad, built a sand castle (well, tried), and searched for seashells. We met family there too, and ate lunch on the beach. The kids had never seen the ocean before so it was amazing to them. It was so much fun we didn't want to leave, but we had to get back to the hotel and get cleaned up for our dinner at Medieval times. We had to wait in line at the ticket counter, and Cloey said "Why we have to wait in line for?" it was so cute, since we hadn't waited in line for two days. Our family met us there too, so we filled up a whole row for the green knight. Cal really liked the jousting especially when the wooden shield broke into little pieces. Although he did ask me "mom. it's real swords and fake blood right?" just to be sure. and there wasn't even fake blood. When the green knight came to our section to throw flowers to the crowd, our whole row stood up and pointed to Cloey, so she got the flower. she immediately turned to me and said "He loves me!". After it was over we were leaving and the narrator was telling everyone goodbye. Cloey was looking for the green knight, I told her "maybe he will know where the green knight is" he heard me and started to say that the knights only comes out after the second show, then he noticed Cloey's shirt and said. "wait here. I'll see what I can do" shortly after, the green knight came out and took pictures with her and spend some extra time talking to her. She was thrilled to be his princess!

Friday- We woke up and went to a character breakfast at the Paradise Pier Hotel. They met several other characters including stitch who did all kinds of funny things like "pick" daddy's nose and wipe it on Cal's head. They both really liked that, but Lainey wouldn't get near any characters, she was fine watching them, but didn't want to get near them or have them touch her at all. Kinda like she is with people :) Next was Universal Studios. We were in traffic for a long time before we got there and Ty & I were joking that we needed a cut in line pass for the traffic. When we got there we had front of the line passes waiting for us at the will call counter. As we were going into the park, there was a line to take your picture with the Simpson family, Cloey doesn't watch the show but loves seeing characters, so Ty took her up to see them. They all made a big deal over her and she loved it. Then it was over to the Simpsons ride. Cloey, Ty, and Emily went on it. I really had no interest in it. Lainey was asleep and Cal was traumatized and refusing all rides. It quickly became Cloey's favorite, in total she went on 4 or 5 times, and I even went on once with her, but Cal could never be convinced. I did make him go on the Shreck ride because otherwise he would not be able to do anything at universal. He was screaming and crying when we were waiting to get on, then when we were inside and he had the 3D glasses on I saw him laughing and grabbing at the candy that was "thrown" into the audience. but when we were leaving he said "actually I didn't like it" so that was the end of rides for Cal. After the Shreck ride, we got to meet Spongebob Squarepants. Cloey was so excited she started jumping up and down. Then Spongebob starting jumping too! He was really playing with Cloey. Right next to Spongebob was Curious George, so of course we stopped to say hi to him too. Then Spongebob came over as a special treat and tapped her on the shoulder. Pretty soon they were all jumping up and down. Cloey was definitely the star of the show to the large crowd of people who had gathered to see Spongebob and Curious George together. Mostly Emily, Ty & I traded off to go on the big rides and that was fun. I got to take Ty on Backdraft which was cool , but I have to say it was more impressive the last time I was on it, when I was about 9 years old. Cloey rode Simpsons one last time and I broke down and got her a Simpsons t-shirt since she loved the ride so much.

Saturday- we rushed to pack and get off to the airport. When we checked out the Cast members were very nice and wanted to make sure we had a magical time. The man who was helping us load our luggage gave each of the kids an 8x10 signed portrait of some of the characters. When we arrived at the airport our wish granter was there to meet us, and the "princess car" took us home.

I know this is extremely long, but I still feel I haven't described how truly magical it all was. The Make a Wish organization is outstanding. It wasn't about how much money they spent or what we got, but about making a wish come true. We didn't have to worry about anything. Everywhere we went it was all taken care of. It was so easy to check in, pick up tickets, cars etc. It was like we had fairy godparents watching over us. As I watched the other kids and realized they all will probably be back several times over their lifetime, not to mention all the dreams they will be able to make come true for themselves, I was filled with the most bittersweet feelings and a heart full of gratitude for being able to spend this extra special time with my Cloey. We will remember this for the rest of our lives. Cloey has now left her mark all over Disneyland and whenever we have the chance to visit again we will see our princess smiling in that castle where her wish came true.

I'm too excited to sleep! We are headed to Disneyland to meet the princesses tomorrow at 11am and will be gone until Sat afternoon. We can't wait to be there to see Cloey get her wish. We will take lots of pictures and make sure to post all the details.

Besides the excitement of getting ready for our trip we have been going to swim lessons, tumbling, karate & a trip to the High School Musical at Gammage auditorium. Cloey was really impressed and didn't even mind that it was a different cast then she is used to. Lainey really likes the little trampoline, my little daredevil. Ty & I celebrated our 8th wedding anniversary with a full night out at the Carefree Resort. It was really relaxing. We had a couple say "oh, look at the newlyweds" ands we both started laughing out loud, so we had to explain that it was our anniversary and our 3 kids were at home. but it was really nice to just be "us" for a while. Ty has been working for a temp agency so his hours have been a little crazy, but after not working for 2 weeks we are just thankful for the work. The most recent bummer is that our van died, completely. we still owe money on It so we are not sure yet what we are going to do, bit it will still be broken when we get back so we'll deal with it then.

An organization called Songs of Love writes personalized songs for medically fragile kids. They wrote one for Cloey and you can download the song or ring tone at songsoflove.org. email me at megan.g@cox.net for her record #. It's a really cute song and perks Cloey right up. That's whats up with us, more to come after Disneyland.

Spring Break 2008

Been Gone To Long.....

I can't believe I haven't updated since Christmas! We have been keeping busy as usual. I am not going to even try to update on everything, just be sure to check out the pictures. Our Most recent blessing is Ty has passed the interview process for the Tempe Fire Department! Hopefully he will be in the Academy this fall (pending background check, etc.) We are so excited we can't even think straight!

Cloey's wish was granted! She wished to meet all the Disney Princesses, so Make-A-Wish is generously sending us to to Disneyland California on July 7th, for 6 days and 5 nights! Again can't think straight! The kids are excited and they don't have the slightest idea how cool it really is. Ty & I are excited too, we have never been able to go on a family vacation and we are really looking forward to it.

Cloey is amazing. Although we had to turn up her rates on the machine at night (meaning she is becoming more dependant on it), and she is starting to struggle in the afternoons (getting tired, using all her energy to breath, and being very crabby to the point we have begun to restrict our afternoon activities), She is still our smiling angel. Our hearts ache a little all the time. We are doing our best to count our blessings. One of which is that for now she is here with us and there is nothing imminent that would change that. She is as happy & as comfortable as possible, and that is what matters. We will continue to love her, enjoy time with her, and soak in her sweet spirit in the months to come. We are so blessed with all of the love and support that surrounds us. Not to mention the lessons we are learning about how precious this life is and that we must handle it with care. We have become much more laid back and loving and for that I am truly grateful.
Love from us- Ty, Megan, Cloey, Cal & Lainey

our winter so far

We had a surprisingly good Christmas. While it was strange without family, it was kinda fun to have a white Christmas. Thanks to generous and kind people all around us we were given enough gifts and money to make Santa come all the way to Ronald McDonald House for the kids. We all had lots of fun shopping and playing with all the gifts. The House put on an amazing dinner with China and linens and all the trimmings. Santa also visited the house and one little boy (named Cal) had all kinds of questions for him, like "where are your reindeer?" It was great. We flew home late New Years Eve, in fact we were some where between time zones to ring in 2008.




At Mayo we discovered that the problem with Cloey's breathing lies in her brain. It means there is nothing we can do to "fix" it, but it also means there were no surprise conditions or unexpected surgeries, truly a blessing. She came home on a Bipap ST machine in a last ditch effort to avoid putting her on a ventilator. Unfortunately it did not work and Cloey was placed on the vent about two weeks ago. This is a machine that is breathing for her, which makes her eligible for the Make A Wish program, so we have started that process. There are many complications that could arise with the vent, the most concerning being that she may eventually become completely dependant on the machine to breathe. That would make it hard for her to continue to go to school, church, and participate in so many other things that she loves about life. This pulls on our hearts and we have been on our knees in prayer trying to make the best decisions for our sweetheart. For now, she is only on the machine at night and is doing well on it. It is giving her the support she needs to sleep and wake up to be Cloey all day. We will take it one step at a time and continue to live our life. Whether it's buying a house, taking a job, having a baby or whatever. We don't want to sit stagnant waiting for Cloey to leave us, hopefully she won't, and we don't want life to pass us by in the meantime. That being said we are making sure we spent lots of time together as a family. We hope to go to the beach, camping, Disneyland and all the things we have not been able to do because we are always getting ready or recovering from some surgery or something. Our focus is now on Cloey's quality of life. There-It's all said and you can take a break to cry if you want to.




-sigh-

Ty is applying at various cities around the valley, we are hopeful it will happen this year now that he has his degree. In the meantime he is working as an electricians helper and looking for a part time job to supplement our income. He is also really enjoying the Wii that he got for a graduation present. He was released from the Elders Quorum and will now be the scouting program Chairman. Thanks to Uncle Albert and Aunt Robin he got to take Cal to monster trucks, once again he came home with more pictures of the trucks than my son, so I think it is safe to say they had a good time. Ty and I have recently come to the realization that we are old. Friday will be 10 years since we met, and St Patrick's day will be 10 years of being together, crazy. So I changed my hair and got a pedicure :)







As if we didn't get enough snow in MN, the kids had an ice skating field trip where they had a lot of fun. Our amazing Ward did it again with huge yard sale benefiting Cloey's medical care. It was even in the local papers. There is no way we would make it to Mayo without that help. It is so comforting to see how much good is around us, so many people put so much effort into the sale just to help one little family. Words can't describe the spirit that was felt by all involved. We are all recovered from the flu and bronchitis we had two weeks ago, it was horrible. Cloey was in the hospital and Ty was rationing my cough syrup with codeine because I was so miserable I kept asking him to bring me some. Little Lainey had her tonsils and adenoids removed on Mon. She had to stay overnight because she is under 4 and has asthma, but she is doing much better now. It is amazing she is already not snoring! She has snored like an old man since she was born. We think she will start feeling better and maybe gain some weight now. Now that Grandma Hall has helped us out with a computer, hopefully I will be able to update more often. We love and miss everybody we don't see nearly enough.
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