It's 2024! Time is flying by. This year presents lots of big changes for Emma! On the morning of January 19th, we went on a walk around downtown Centralia. I was pregnant with Emma's sister and I was around 39 weeks pregnant. We like looking at all of the historical buildings and some of the fun shops. That evening, I felt off. I took my blood pressure and it was VERY high. After a series of events, I ended up in labor & delivery, and getting induced. Meanwhile, Dustin and Emma were in the waiting room. Dustin came in every now and then while Carly was watching Emma in the waiting room. Nurses came out to Emma and gave her blankets for her to sleep on, as it was getting late. Labor went on all night, and it was a really rough, scary, and medically alarming delivery for me. Finally, at 7 am, Hannah Kathleen Krall was born! Emma was a big sister! A few hours later after I was moved to the postpartum room, Emma was able to come in and meet her. Emma didn't care about the baby much, but she was pointing and exclaiming about all of the nurses and people in and out of the room. The rest of that day was a blur. Dustin and Emma went back and forth between home and the hospital with me and Hannah. When Emma was in the room, she liked to stand and play with her toys on the bench, and not pay too much attention to the baby. Since I was still having major medical issues, I couldn't come home. That Sunday night, Emma kept asking for me to come home. It broke my heart. Plus, she hasn't been sleeping well either, meaning that Dustin didn't sleep well too. On Monday, I was able to be discharged with Hannah that afternoon. I was able to fit between the two car seats in the back seat, as I need to be with Emma to suction her too. It was amazing to be able to drive home with a new baby instead of leaving her at the hospital for months on end. Emma seemed confused as to why the baby was now in our car. Emma looked so big now that I've been around Hannah for 2 days. I really missed seeing Emma! The following day at home was a huge blur. Emma helped with Hannah's diaper changes and thought that was funny. On the 24th, four days after Hannah was born, I took her to our first doctor appointment. I found out my blood pressure was still very high, so I had to be re-admitted to the hospital again. My heart sank- this again? I was back into the hospital and put on more drugs that beat my body up. Dustin had to be at home most of the time, as he had to work and Emma couldn't take much more of the hospital. He also had to take care of an emergency pipe burst of the hose hook-up with this freezing weather we are having. I was finally able to go home for good on the 27th. It was nice to finally feel like a family, with a new baby now. The following Sunday, Dustin took Emma to church while I watched it at home. My mom was here to help out, and it was nice for Emma to have someone playing with her, as we were just zombies at this point. I can't believe we have 2 kids now- it's so strange that we are a family of four now!

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In the beginning of February, Carly's family, Kevin and Sophie all came over to officially meet Hannah. They were here for a while, giving me a break to just talk to others while Hannah was being cuddled and Emma got to play with cousins. A few days later, it was my first full day at home while Dustin had to go to a full-day work training. It was really tough. Emma is having a hard time adjusting. Whenever I give Hannah any attention at all, Emma will fake cough, getting intentionally gunky so I would have to put the baby down to suction her. She also kept griding her teeth nonstop, had fits and tantrums, took her poopy diaper off and shook it everywhere, and refused to use her ASL signs and communicate. She never smiled and was always in a sour mood. After Dustin got home, he took Emma to a late doctor appointment with him just to get her out of the house. We all needed that break. I was so frustrated with Emma. After a few hours, everyone felt a lot better. I made sure she knew we loved her still. She is definitely having a hard time too, as she is still tossing and turning at night and doesn't sleep very well. Hopefully she feels better about the situation soon. A few days later, we held Hannah up to Emma and she gave her little sister a hug! She was laughing and happy about it! We are making good progress. ​

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In mid-February, we got our big yearly snowstorm. Emma exclaimed a ton and was so excited to see the snow when she woke up and wanted to see from every window. It was about 4" of snow that morning. That evening, our power went out. Luckily, I am sleeping with Hannah in the living room, in the recliner that Kevin gave us, so I just had to keep the fireplace going for us. Thankfully, the power came back on mid-morning the next day. ​

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In March, we decided to go to the Portland temple. It's been a while since we could go with the new baby. I went and did initiatories. Unfortunately, it was terrible for Dustin. It was raining, so the girls and to be in the car for over an hour. Emma was having a fit and Hannah screamed the entire time. This is how all outings have been for us. It's been really hard on everyone. Later that month, we had just a wonderfully warm and sunny day, and I wanted to go on a walk. I had to get out of the house, even though Dustin was at work in person in the office. So I got Emma in her jogging stroller and Hannah in her baby carrier and we did it! It was a big deal for me, cause it was the first time I did something alone, out of the house, with both of them. Plus Emma's suction machine and food pump too. 

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At the end of March, we took family pictures at the state capitol's cherry trees. They were in full bloom and there were so many of them! Plus, lots of beautiful tulips. That evening, Emma decorated Easter eggs. Instead of dye, this year we decorated them with stickers and crayons. Then on Easter morning, Emma used her walker to walk to the eggs around the house. Their trail led to her Easter basket- a Bluey firetruck! She loved it so much! That evening, at the Krall family Easter dinner, Emma was able to do another egg hunt. Emma had a blast there too!

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On April 15th, Emma had her trach safe. It's a procedure under anesthesia to re-evaluate the trach and how it's working for her. It's been a while since we've had one. The doctor also took a scope in her ears to explore if she can do an ear surgery in the future. He found no reason why we can't. Dr. Bly also saw some granulation tissue in her trach stoma and removed that while he was there. That's why we were having such a hard time doing her trach changes. That helped a ton!

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Then on April 23rd, Emma had a gastroenterology appointment. We had originally made the appointment to look at some granulation tissue on her g-tube stoma, but that went away by then. We did have a question though as she had been starting to have loose poop and diarrhea. They took her weight and she had lost over a pound, which is pretty significant for her small weight. She also had blood tests and a stool test. A few days later we found out that she had low iron and started giving her an iron supplement. We also found out that she had very high calprotectin. It's a protein in the stool that indicates gut inflammation. She had a 750 and a normal range is under 50. This means the chance that she has irritable bowel disease, ulcerative colitis, or especially Crohn's' disease (as Dustin's has that) is pretty high. It took the GI doctor, Dr. Len, a month to schedule a colonoscopy and a repeat stool test. Emma hasn't been feeling well either. Nasty bowel movements and she has told us her stomach hurts. She had a low grade fever for 3 days, which could also be from the inflammation. We are pretty frustrated and a little angry that she might have to deal with this too. Dustin felt guilty (if it is Crohn's) and I was feeling angry and envious of others who don't have to watch their kids suffer. It was a rough month to stay positive. 

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At the end of May, it was Hannah's 4 month mark. Emma is still having a hard time with the new baby and life adjustments. She still refuses to do her signs (she will do them with others, just not with us now). We think she is still mad at us for having Hannah. She refuses to sign, make any decisions, will have random fits and tantrums, grind her teeth out of spite, and sometimes push or lightly kick Hannah. It's really hard on us to see her so unhappy and sometimes angry. I don't know how to help her, other than making sure she is loved and gets lots of one-on-one time with both of us. That helps in the moment, but not overall. She's not sleeping well still, and tossing and turning at night, so Dustin isn't sleeping much either. This is tough, but I'm sure this is temporary!

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On May 29th, Emma had a CT scan to look at her inner ears to see if surgery would even be possible. They tried it without sedation first, but she moved way too much. I stayed home with Hannah, but Dustin said she had the most terrified look on her face. It didn't help that she couldn't have her hearing aid on. Then they sedated her with a light gas and got the images. I wish I could be there for her too, but we didn't want to take Hannah to a hospital if we didn't have to. A week later, Emma had to have ANOTHER CT scan. This time it was combined with an MRI and it was to look at her spine. She has had a few more falls in the last month or so that seemed unusual. She didn't trip, or turn her legs weird, her legs just gave out. So we contacted her orthopedic doctor and they set this up. Thankfully, they put her out right away and we were home pretty quickly after that. 

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In mid-June, Emma's eye got really red. It was just her left one, so we ruled out pink eye or allergies. It was really swollen and red, with no discharge. Dustin had this a few weeks ago too. After a lot of research, we came to the conclusion that it was episcleritis- inflammation of the top clear layer of the eye. People with gut inflammation get it more too. Only the colonoscopy next month will tell us for sure what is going on. A week later, we all caught colds! Emma was gunky and we had to keep suctioning her over and over. Emma's lasted about 5 days. A few days after she was better, she had her second stool test. It showed that her calprotectin for inflammatory bowel was 1600 (way over the 750 last time and normal is under 50). Such a disappointment, but now we really need to get answers with the colonoscopy! 

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Now it's time to talk about Emma's 7th birthday on June 20th! On her birthday, she opened up a few presents from us. Then two days later, she had her party with family. We had a BBQ in the backyard. It was Disney princess themed with lots of pink and gold glitter. I made a cute strawberry princess cake. She had so much fun getting presents from the family. And loved pretending to blow out candles on her cake with her circuit. It was a good evening. 

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On June 29th was Emma's first day of summer camp through Thurston County Inclusion. It was their kick-off event of the 6 or 7 at a school playground, once a week. It's mostly for children with disabilities. Emma LOVED it. They got to make tie-dye shirts the first day and we wore them to each camp day every week. She loved the adaptive bikes, balloon play, cheers, parachute, coloring, crafts, dancing, music, games, and generally playing with the other kids. She was so excited each week. She is also signing/ talking to us again! We are so grateful and happy she is back to her goofy self. It took a few months, but she isn't as mad at us anymore for having a little sister. She mostly just ignores her now, but I feel like progress is being made.

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On July 3rd, Emma had her colonoscopy under anesthesia. We had to do the laxative prep for 2 days prior. That was rough. The procedure itself was very scary for her. I guess she cried cause she knew enough about anesthesia at this point and didn't want to do it again. Poor kid. Surprisingly, we ended up not finding anything on the colonoscopy. Her frequent diarrhea and weight loss over the last few months were completely unexplained. And it mysteriously went away. We were thinking it was a gut infection? She was 24.6 pounds before all this and got down to 22.8 pounds. Thankfully, she's starting to gain more weight again. 

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On Independence Day, we went to the ward flag raising and breakfast as our tradition. It was good as always. We then went to the Centralia parade with the family. Emma loved it and had fun being with family. A few days later, we had a video visit with Emma's orthopedic surgeons to talk about the CT and MRI scans they took a little while ago. They told us after reviewing them extensively, that Emma needed to have another halo/ traction/ spinal fusion. Her spinal cord was being squeezed again from her scoliosis progressing. It makes sense with her falling more and loosing her balance. We knew she may need to do this again, but not so soon! It was disheartening to say the least. And now we will be more separated than ever- Dustin will need to stay up at the hospital for 1 1/2 months with Emma and work remotely while Hannah and I stay home, visiting frequently. We are dreading it. We don't know when it will be yet, but it looks like in the next few months. We are also terrified as the risk of her being paralyzed is there if we don't do the surgery, and if we do, it's still there. Even a little more of a chance since it's her second spinal fusion. I'm trying not to worry about it right now, but it's so difficult.

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In July, Hannah started to eat more solids. I'm letting her feed herself and it is pretty messy. Emma isn't a fan of it all, as she is a clean freak. She tries to take the food from her and clean it up. Also in July, we went to our local fire department as they had an open house and summer carnival. Emma had lots of fun! She loved throwing the bean bags and using the mini hose from the fire engine to knock down "fire" from a wood house cut out.

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On August 2nd- 4th, Rachael's family came here for a visit. We met up with them in Sequim on Saturday morning at the Olympic Game Farm. We had a blast! Hannah's window was up, so she just watched. Emma and I fed the animals in the back seat and Dustin up front. She had a blast and had lots of silly giggles. As always, the elk were completely in our car. My family was in the car behind us. After walking around the property and things to see there at the Farm, we went to a local beach. Even though it was on the Peninsula Puget Sound, there was sand, and felt like a beach. It was nice being in the sunshine. Emma was a little cranky about touching the sand, but liked the trip overall. After eating lunch, playing in the sand and relaxing, we drove home. We met them at The Ram restaurant and then home. It was a nice weekend visit.

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On August 9th, we decided to try out Hannah's new-to-us stroller. She has never ridden in one before, so we decided to go to the Tacoma zoo. Both kids did really well! Hannah even napped at the zoo. Emma loved the elephant, Suki, and mimicking her trunk and ears flapping. We found out the next day they had euthanized her as she had cancer and was in paint. Crazy that we were one of the last of the public to see the elephant. I don't have the heart to tell her there is no elephant the next time we go.​ A few days later, we met the Krall family at Tim & Terry Clark's family campground for lunch. We sat around the fire and talked, ate, and then Emma and I had fun throwing rocks and weeds into the creek. Hannah enjoyed being held by everyone. The Clarks are a long time family friend of the Krall's and I know them a little bit too. It was a nice evening. That weekend, we went to the Southwest Washington Fair in Chehalis. Emma enjoyed petting the goats and getting stickers, pencils, and a fireman's hat. We ate some good food and had a lot of fun. The next weekend, we wanted to do a long drive with Hannah, to see how she would do. She did great! We went to Astoria, Oregon. We walked down a bunch of shops, toured the Flavel House (a Victorian Mansion), ate at a good Mexican restaurant, and came home. It was a fun day trip!

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Hannah is now 7 months old! She has officially learned to crawl and sit on her own. We had to buy a large play pen pretty quickly as she was crawling and grabbing Emma's suction tubing, g-tube line, and Emma's trach. We definitely need them separated for a bit until Hannah can know what not to touch. She could really cause a medical emergency. It's so fun to watch her progress, but terrifying as we aren't used to these milestones passing this quickly. 

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At the end of August, we went up to Seattle Children's for a Pulmonary visit. We asked about baptism by immersion as she is almost 8 (can you believe it??) and if there is a way to do it. She strongly advised against it, like I thought. We were hoping there was an easy way, but as we thought about it more, I'm hoping we can find another way. We can address it with the bishop later. On the way home, we ate lunch at the Old Spaghetti Factory in Tacoma for our 13th wedding anniversary. Yummy food and a good place! The following weekend, we went to the Washington State Fair in Puyallup. We had a fun time and Emma got to make a Princess Emma bobblehead. It was cute!

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On September 3rd, Emma had her Make-A-Wish party as her wish got granted! The volunteer came down from Seattle and met us at the Olympia Children's Museum- one of Emma's favorite places. Make-A-Wish reserved a party room and we had Carly's family and Kevin meet us there. Emma got a bunch of small toys, books, and activities from Make-A-Wish and the Children's Museum, and there was a bunch of Disney decorations. Emma was so excited! We then ate ice cream from the fun ice cream bar that she made ​​(Emma ate waaay too much ice cream), then we went over our official packet for our Disneyworld vacation! It was all very exciting! After the party, we all went to play at the museum for a while. She loved the rockets, wheelbarrow dumping, and being a vet to stuffed animals. I'm glad she is getting excited to go on her wish trip!

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At 4:15 am on Thursday, September 12th, we woke up, got all packed, and left an hour later with Kevin to drive to SeaTac airport. We were going on Emma's Make-A-Wish trip to Disneyworld!!! Emma wasn't tired at all, she was SO excited. Going through the SeaTac airport was nuts. We had a Make-A-Wish volunteer helping us, but things kept going wrong that wasn't his fault. We were in the wrong place at first, the construction made the wheelchair access difficult, and they told us they lost one of our luggage bags after we checked them in. The whole time until we got to Orlando was stressful cause we didn't know which bag was lost! It could easily have been one of the medical bags that Emma NEEDS to have. Thankfully, when we got there, no bag was lost, they just had printed an extra bag ticket by mistake. The flight itself was fairly easy. Hannah cried a little, but did good sleeping. She was almost 9 months, so we were a little worried on how this would go, but family made it so much easier to fly with a baby. Emma had fun with her activities with us, like coloring, stickers, tablet games, and other fun things we brought. The hostess even gave us 3 free snack meals! It paid off having our Make-A-Wish shirts on. It was a little turbulent at t eh end as we had to go around the remains of a hurricane by Texas/ Louisiana, but it wasn't terrible. The almost 6 hour flight went very well! The moment we stepped off the plane, we were hit with very hot and humid air. We really didn't stop sweating that whole week. Getting through the Orlando airport was a breeze and we found the Give Kids the World volunteer with Emma's sign. She loved her name on the big sign! They helped us with the rental car and our bags, then we were on our way to Give Kids the World, about a 30 minute drive. Carly came with us to help with the bags, Hannah and Emma sat in the 2 middle seats, and I sat in the back of the van so I can lean forward and help the kids as needed. It was a good setup. When we arrived at Give Kids the World, we were stunned. It was so neat! This is a place for Wish kids to stay while they have their Disneyworld wish trip. It has many fun whimsical homes lining residential-looking streets on one side, and a fun place for activities on the other. That included the town hall for events, ice cream parlor, carousel, theater, mini-theme park, mini-golfing, science center, playground, and a few other things. It in itself was pretty magical! Once we got there, we headed straight to the town hall for the Christmas party (they had themed parties every night). It was very loud, but Emma had fun decorating a sticker sheet, meeting Santa and Mrs. Clause, a reindeer character, making crafts, and getting a present! After getting a bite to eat at their cafeteria, we went to our villa to unpack and get orientation from a volunteer. Emma was so excited as she got more toys and gifts when we walked inside. The villa was perfect! A complete 2 bedroom, 2 bathroom house. Emma slept on a mattress next to the master bed in one room and I slept on a small bed by a pack-in-play that they had for Hannah in the other room. The next morning we woke up early and drove to Disneyworld! We were headed to Magic Kingdom today. All the family (us, Carly's family, Kevin & Sophie) came to the park with us. Because of our disabled pass, we got parking right up front and easily got on one of the ferry boats across the water. It was so beautiful, seeing the castle come into view. As we got off, checked in, and went through security, we came upon Main Street, Emma was so excited to see the castle in real life! It was so amazing. We were able to use the Photopass that Make-A-Wish gave us to have the cast members take professional pictures of us along the way. After walking down Main Street, we bought Emma some cute gold sparkly Minnie Mouse ears. She wore them the ENTIRE trip after that. As part of the passes, we got a walk-on lighting lane for 7 people (even if Emma can't ride them). Some people rode Space Mountain, others rode Tron. Emma did the Buzz Lightyear shooting game and loved it! She also rode the Tomorrowland Speedway with Dustin and had a blast. By then it was time to head to the castle! We had lunch reservations at Cinderella's Royal Table. After some pictures at the castle and a wishing well penny toss, Emma got into her Rapunzel dress. We got to wait in the inside line, then meet Cinderella. Emma wasn't too thrilled, only because she didn't want to wear her dress. It was so hot. Once she saw that Cinderella was signing her book, she perked up. When we got to our table, we took her dress off and she was so hyper after that. During our meal, Jasmine, Aurora, Merida, and Ariel each came to our table, interacted with Emma (and Hannah) and signed her book. Emma had so much fun meeting them. Plus, the food was amazing! Braised beef, fillet mignon, veggies, and cheesecake. The castle itself was amazing and so beautiful on the inside. They did a wishing star ceremony too during the meal, and the girls got a magic wand and a sword. Such a neat experience, and Emma LOVED every minute of it. We met Rapunzel and Tiana on a meet and greet area with Emma's cousin. So neat! Then Emma got to ride the Winnie the Poo ride, Little Mermaid, and It's a Small World. We bought a cute Halloween-themed Mickey cookie too. There was fall-themed decor every where! While we were waiting for the older people in our group to ride Tiana's Bayou, Hannah, me, and Emma had a Crew Member give me a free Mickey pretzel and cheese. These free-bees are called "pixie dust" by Disney fans, and we get noticed more by being a Make-A-Wish family. Michael even got free food and discounts as well, just for being in our party. Throughout out trip, we would be given 20% off merchandise as well. It was amazing and touching. After we all rode Pirates of the Caribbean, we slowly made our way back to the entrance. That day we walked 14,600 steps (or about 6 miles)! After going back to Give Kids the World, we had dinner and our free Ice Cream at Henri's Scoops with the family, then back to sleep in our villa. The next day, September 14th, was the Animal Kingdom day! This park was super easy to get to. After checking in, you round the corner and wow! There's the big carved tree. We went first to the Kilimanjaro Safari ride. It was so neat to see all of these animals up close. Emma had a tantrum for the first bit until she realized what we were doing, then she was interested. She loved the elephants. I loved seeing the giraffes up close. Then we went on a walking tour to see lots more animals- kind of like a zoo. We got to watch a bunch of silverback gorillas interact with each other. Then we got on a train and went to Rafiki's island- a fun place where you can learn to draw animal animations, see a vet office, and more small animals. Emma got to meet the Rafiki character! She got to also stamp out a little Minnie Mouse out of a leaf. The most fun part though was that she got her Wilderness Explorer's booklet- a scavenger hunt for all of the stations around the park. Each station has a Crew Member with an activity and when you finish, you get a sticker on that page. From that movement on, it was Emma's mission to complete that book. Instant good mood! We then stopped for lunch in this Indian- style area and had some good spicy rib tips and fries. We got to see Kevin the bird from Up and Emma got to meet the Jungle-themed Mickey and Minnie Mouse! She thought that was so cool. Whenever there is a character line, we get pulled out of line by a Cast Member and moved to the front. It was so special to be able to skip everything and the characters got to spend so much one-on-one time with her. It was pretty special. She LOVED when the characters got to sign her autograph book too. From then on, everyone else left expect us, as they were meeting Michael's family who lives in Florida. We took a break and got a pumpkin-shaped Mickey lemonade drink and saw a huge flock of macaw birds fly over our heads. We then walked EVERYWHERE to complete Emma's booklet. Some of the kiosks weren't on the paper map, so we had to backtrack a few times. I'm glad we did it though, as we got to see the Everest area, Pandora areas and extra ride, Dino area with playgrounds, and the Asian ruins that we wouldn't have gone to see. But we finally got to all of the Explorer booths! On her last kiosk, they gave her a huge line of Senior Wilderness Explorer stickers and a round of applause. She was so proud of herself! That day we walked 17,600 steps (7.25 miles)! What a day! So hot but so fun. After getting back to our villa, getting a bite to eat there, then we went to the castle at Give Kids the World to redeem Emma's 2 pillows (well, one is technically for Hannah). That was a cute integration with Buttons, the squirrel in the tree to get them. The next morning was our "rest day" on Sunday. Not super restful, but no parks. Emma started off doing a horse ride at Give Kids the World. She rode a white and black horse named Oreo. She rode with a therapist and there were trained people on either side of the horse. She thought that was fun! Then when we ate breakfast at Give Kids the World, Emma was approached by Wonder Woman! She talked to her a bit, then led us to the town hall to meet the rest of the super heroes. She loved Superman and his big "S". There was also Harley Quinn, Blue Ivy, and one other I didn't know, but Emma just loved Superman. Didn't want a hug from him, but high-fives were all smiles. Then we went on a few rides on the carousel. She loved that! We then explored the Give Kids the World Amberville amusement park area. It had a huge model train area with a ton of interactive buttons, drivable boats in their pond, Legos, arcade games, car driving games, and mini golf. She loved all of the activities. Then we left for Disney Character Warehouse. It was a discount store in the local mall that gets all of the unsold Disney merchandise at a super cheap price. Kevin and I waited in the food court inside with the girls while Dustin stood in the VERY hot sun for an hour before we could get in- it was a super long line upon opening! We were out within 15 minutes, but we got a ton of stuff for a huge discount (clothes, toys, puzzles). Then we went over to Disney Springs- an outdoor Disney-sponsored mall (it used to be called Downtown Disney). We ate lunch at D-Luxe Burger- an amazing burger place with brisket mixed into the hamburgers. Then we walked around some of the shops- Harley Davidson, Art of Disney, Christmas at Disney, and the biggest Disney shop in America. Emma had fun going from store to store, and would tell us to keep walking when we took a break. We then went back to the villa and relaxed for a while after dropping Kevin (Grandpa) off at his Air BNB. Then after we were good and cooled down, we explored Give Kids the World some more. She wanted to go on the carousel again and the Wonder Science Lab with the cousins. Then we played in the splash pad and pool. I was REALLY nervous for Emma to be in the water, but she was just fine. Both Emma and Hannah LOVED the splash pad! It felt so good to be in the water after being so sweaty and humid. After getting cleaned up and ate dinner there, we went to the Give Kids the World castle for her star making appointment! The castle ceiling, walls, beams, and banners were filled with thousands of tiny gold stars. Each star is a child who stayed there for their Wish. It was amazing to see and absolutely beautiful. That night, we added a star for Emma! We met in a little room decorated like the night sky. Stellar the fairy (on a screen that looked like a mirror) walked Emma through getting her star, writing her name on it, and then giving it to the giant (the projection on the wall) to put it up in the sky. We would see the star up in a few days later. It was a cute and very special and touching experience. Emma was amazed and really believed in all the special magic! The next morning, Monday, we were all headed to Universal Studios! We got to Islands of Adventure first. Some of us rode rides first (Hulk, Spiderman, two water barge rides, Jurassic Park). Emma wasn't very thrilled so far and was just hot, but she had fun seeing the huge dinosaurs inside the building. Then we went to Harry Potter world and Hogsmead! We ate lunch at 3 Broomsticks. Dustin filled out a postcard there for Emma and put it in the Owl Post to mail it to her when we got home. She will like the extra present for Emma when we arrive home. After riding some of the rides we went on the Hogwarts Express train to travel to the other side of the Harry Potter park. Emma was pretty grumpy at first, but she was starting to get pretty bored. We walked along Diagon Alley then got butterbeer ice cream at Florean Fetescue's. That perked up Emma's countenance! On the way out of Universal Studios, we happened to come upon a parade! Emma got some special attention from the crew and floats and was pretty happy. After a quick Minion shooter game (and the confusion with her wheelchair), Emma ended on a good note. We went back to the villa and had dinner. We quickly stopped by the Give Kids the World Halloween party that night and made a few crafts. We skipped the trick-or-treating, as Emma doesn't eat candy anyway. We needed a relaxing evening in our villa instead! We walked 12,000 steps (around 5 miles) today! The next morning we went to Epcot! It was just us this time, and we made it by rope drop opening. Emma loved seeing the huge Epcot ball among arrival. The first country up was Mexico. Emma loved the 3 Amigos ride, as we just watched the movie before leaving home. Plus she got to meet Mexican Donald Duck after! She was all giggles and smiles with Donald. We then started on Emma's passport journey- each country had a booth to stamp and color in her booklet. She looked forward to that a TON (just like at Animal Kingdom). Next up was Norway. Both Emma and Hannah went on the Frozen ride. They loved it a lot, especially the small drop down a waterfall and then going backwards. Hannah laughed, and Emma had happy hands and kept exclaiming. Plus her "excited tongue" was moving! Then Emma got to skip over an hour line to meet Anna and Elsa in a private room. She wasn't super engaged with them, but was still happy to get her book signed. Then in China, she met Mulan in a beautiful Chinese cathedral. Then we stopped in Germany and Emma liked the huge HO train area. After going through Italy, and doing some pin trading in America (another fun thing she was super excited to do), we were at the Japan area. We went to the Akoya Pearls booth, and Emma got to pick out an oyster and the Japanese cast member did a fun ceremony with a drum, opened it up, and cleaned out the pearl. I got to choose a necklace holder for the pearl. All doing things with our large Make-A-Wish money allowance to have the best time possible for her! Then we went to Morocco and France. Since Hannah was napping, Dustin took Emma on the Remy Ratatouille ride. She absolutely loved it as the rider looked like they were a rat running around the kitchen. Then she got to meet Chef Daisy Duck! Daisy was just finishing up to head out to her break when she saw Emma, and said "one more!". I'm so glad she did, as Emma was SO hyper to meet her! She loved how Daisy kept kissing her cheek. Then we went to the UK, met Winnie the Poo and Rabbit and she loved that as well. She liked how they were greeting her in Christopher Robin's bedroom. Then the last was Canada, where she got her Finisher's postcard and pin for getting all the countries! She was over the moon for completing it as well. She then had fun walking in the Nemo building- seeing the aquariums ad the small Nemo ride. Around this point, she started to get frustrated and done. We then walked through the Moana water splash pad, and didn't get very wet, thank goodness! After that, we called it a day and went back to the villa. Since it was our last park day, we had about $500 left on our Make-A-Wish card, even though we were spending pretty frivolously, so Dustin went to Walmart to get a gift card with it. It didn't work so that meant we had to spend it all today! So after about 45 minutes of rest in the villa, we decided to go to Hollywood Studios, the only park we hadn't gone to. We wanted to swing by Magic Kingdom one more time, but it closed early due to the Halloween party that night. So off we went! We are crazy, but didn't want to loose out on money for Emma. It was nuts at the park. There wasn't much for Emma to do here, but we didn't stay long. We did some shopping for family members. Emma went on the Toy Story shooter ride, but it was a little jerky for her. After a quick walk around Toy Story Land and Main Street, we had spent most of our money and were tired. Emma was able to get a neat Loungefly bag, a princess EMMA letter painting (mailed to us when it is finished), a castle painting, and lots of clothes. There was a beautiful sunset on the way out. That day we walked about 11,500 steps (around 4.75 miles), but it was worth it. That next morning, Wednesday the 18th, was our last day! We packed up and Emma said goodbye to the villa. It was pretty hard to leave, as it was truly like home to us. We had breakfast at Give Kids the World with the family, then did Emma's star viewing. It was a very special moment as they had a spotlight on the star. Emma got to point to it and we now have a place to find it when we come back. After doing the carousel 3 or 4 more times and visiting the gift shop, we got Emma ice cream one last time. Then we left. It was actually pretty emotional for us. We have been treated so well, and this has been a once in a lifetime trip for her. It was so hard to lave! We then went to see the Orlando temple. It was a quick drive by as it was under construction. Then we drove to SeaLife Aquarium as Give Kids the World gave us free tickets. It was neat, just small. Emma was just interested in getting the stamp booklet, but that's okay. She was done with doing things. We just had time to kill before our flight as it leaves at 5 pm. We met the family at the airport, and it was really easy to get through. The ADA line was super short and fast. We had a nice and relaxing time in the airport as a group waiting together. The flight home was nice to watch out the window and follow the sunset, but Hannah was pretty cranky throughout. Emma did great and actually slept a little. After we got back to Seattle, we got back to our truck with Kevin and found out that all our parking was paid for. Another touching perk of Make-A-Wish. The drive home was easy and we were in bed by 11:30. What a trip! The following day we just relaxed and it felt weird to get back to normal life. Dustin made a pink wooden castle pin board to hold all of the pins that Emma traded. That was just an amazing trip. It is so hard to leave. In all, we walked over 82,000 steps, or over 36 miles in a week! I'm glad we bought 2 pairs of shoes each! 

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Now, we are prepping for Emma's surgery. We got the call 2 days before our trip that her halo/ traction surgery was to be on September 30th- just over a week after her trip. What good timing that was. Since we've been through this before, we know how hard it is- the halo and screws, the annoyance of traction, the month long hospital stay for Dustin, the travel back and forth for me and Hannah, and the fusion pain for Emma. Then the after affects of halo and the other things for 6 months. I'm dreading it. I'm also scared to heath she will wake up from the fusion and be paralyzed. I keep having nightmares of that and random moments of anxiety throughout the day. We haven't told Emma yet, and I'm dreading that too. But we have to soon. Her spinal cord is being pinched again and she keeps falling, now more frequently. I'm trying not to keep looking at her in sadness or heartache, but with strength and positivity. We got this! It's going to be hard, but we've done it before. We can do it again. Plus, we can keep revisiting our Disney trip for happy memories and encouragement. A few days later, we had some fun Wish Trip extension surprises n the mail! One was the illustrated "EMMA" in princess dresses. It looked so good and Emma loved it! She also got her Harry Potter postcard that was addressed to her that we mailed from Hogsmead. We got our mailed Cinderella Castle artwork too. 

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On the 27th, Emma lost her first tooth! Her bottom left front tooth has been wiggly for a while, and even had a big tooth growing behind it. She has been really scared of us wiggling or even just touching it. That morning, I noticed that when I wiggled it, I could see the root on one end, so I had her use her "chewy T" oral therapy tool to push it out. She she pushed her tooth out by herself! She didn't know what to do with it. Once we got all the blood cleaned up, she got a good look at it. She was pretty excited it came out! She got a visit by the tooth fairy and thought it was fun that she got a dollar that morning. The next morning was the Primary program at church. Emma had two "speaking" parts by saying "smiling" and "talking to my neighbors". I had to walk the halls with Hannah to get her to sleep, but I was able to pop my head into the chapel and see her sign them both with such a big silly grin. She was so proud of herself! 

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Now to the surgery....the day prior, we showed Emma pictures of her last halo/ traction and explained to her it was happening again. She didn't fully understand, and just liked looking at pictures of herself. I had to step away and cry. I don't want to do this. I know it will be difficult, and it's scary, and a huge risk, but if we don't she could be paralyzed too. It was a darned if you do, darned if you don't situation. That day was crazy busy- making food to take with us to the hospital, cleaning, packing, getting the house and animals ready for us to be gone most of the month. Then on September 30th, we woke up at 3:45 am to make the drive to Seattle Children's (check in time was at 6:30 am!). After getting all set up and ready, it was about 8 am. She was all happy and smiles that morning (despite it being very early) until we put the hospital gown on her. Then she started to get defiant, angry, and kept saying "all done". She knows that the gown means anesthesia, surgery, pain, and hospitals. I tried to have a brave face. I was the one to gown up and walk her back to the operating room. When we got to the table, she held tight on my neck, refusing to be let go. After she laid down and got the anesthesia through her trach, she calmed down a little, even though she kept saying "no, no". After a kiss goodbye, I walked back to the pre-procedure room where Dustin and Hannah were. I was on the verge of tears, but Dustin helped me get to the cafeteria for breakfast as a distraction. The halo/ traction placement didn't take long. We got paged 45 minutes later that she was in the recovery room. Once we walked in, she started stirring. We put her hearing device on over the top of her halo pins and she woke up easily. But she was VERY grumpy. And rightly so. She was crying, getting angry, and being defiant. We knew she hurt. That was hard. We couldn't pick her up to comfort her. After about an hour, we were able to wheel her bed to her final room in the Rehab unit of the hospital, floor 5, River, room 526. It's a small room, but we can stay here just fine. After we got situated, she was slow fed through her g-tube, and feeling a little better, we got her into her traction wheelchair. We want her out of bed as much as possible, as the traction is much more effective that way. But she looked uncomfortable. Her chin was pulled way down and she wasn't moving her head very much. Come to find out that she was physically resisting the traction weight and pulling it down instead of letting it pull her up. Not many smiles that night. Pursed lips and grumpy, she ended up sleeping okay for Dustin. Hannah and I left around 6 pm. It was so hard to leave. But Dustin will stay the night ad I will take Hannah home to bed. Plus, I need to take care of the fish, dogs, chickens, and the house every evening. It was exhausting.

 

The next day I woke up when Hannah did, and we were out the door by 9 am and got to the hospital by 11. Emma was doing much better. She had some quick smiles with her Mickey Mouse Clubhouse book and her Bluey tablet game. We went on lots of walks around the hospital. We discovered the playroom with toys and crafts and even a padded play area for Hannah! Then Emma was fitted in her walker/ stander. She looked very unsteady and was leaning way forward. Also found out that she was resisting that too, but also a little weak as well. She got over that within a day and walked normally after that. On Wednesday, the 2nd, it was Hannah and my first day not going to the hospital. It was difficult at Carly's house, even though she cried for most of the time there. It was a busy day of doing laundry, dishes, work, and taking care of Hannah. That day for Emma was rough. She was still very angry and pushed nurses away, refused to do activities, and was overall grumpy. 

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On the 3rd, Hannah and I went back up there. Emma was a lot better today. Her personality was more back to her normal self. I think she is finally accepting her situation. Plus, she is realizing we can go on walks, see fun things, and do lots of fun activities together. She's getting a lot of attention and is kept busy. She loves getting craft kits from the Childlife play area and playing in the toy kitchen area. She also got really excited to see another little girl walking around in her halo/ traction too! That helped her spirits a ton. We also found out that only siblings under the age of 1 can stay overnight. So Dustin and I decided to switch. Dustin can drive home and get a good night's sleep, while I stay at the hospital with Emma and Hannah. When it was time to put Hannah to bed, she screamed and cried for 1.5 hours straight. She was in a pack-in-play in the bathroom. My nerves were shot, and I felt terrible for Emma (whom I wasn't spending time with at all), and the patients and nurses listening to Hannah's screams. It was really rough. When she finally slept, it was a good night at least. For them both. We have instructed all nurses and respiratory therapists to leave Emma alone at night. That has really helped her mood- to actually sleep! I told myself that I will never again spend the night with Hannah up here, but things can change!

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The next day, Day 5, Dustin came up from home. We went on long walks around the hospital perimeter sidewalk. It was so nice and warm, even for October! We also listened to Emma's Song for the first time. A non-profile organization called Songs of Love made a personalized song for Emma with all the things she loves. I listened to it when I was home and I bawled. It was so sweet. The chorus repeats "Emma, the world is better with you!" Love it and Emma loved it too! She liked all the words it mentioned in the song. Carly, Alayna, and Clark were there when I played it for Emma and they loved it too, as they were mentioned! They came by to bring a "We love Emma" banner with Bluey pictures and string lights with Mickey characters to decorate her room. Carly is so thoughtful. That evening, Emma participated in a superhero bingo night in the playroom. And Spiderman was there! She thought that was so fun to play bingo sitting next to Spiderman, and crossing his logo off too. 

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Day 6 was my at-home day. I did some work while listening to our church's General Conference. That day had a lot of emotion tied up in it. Some of the talks mentioned trials, health problems, death, surgeries, perseverance. It was piercing at this time. Plus, emotions about our situation was tough. It was hard not to get frustrated, especially with Hannah right now, as she gets fussy or needs me to be home, when Emma needs me too. We got through the day, but we needed to have some growing pains, as we are feeling fired and reality is setting in. That evening, a kind woman from the ward stopped by the house to talk for a minute and drop off some cookie dough. That was really sweet of her. On Sunday, I drove up while listening to more of General Conference, then we finished up listening at the hospital. We didn't get too much out of it, as there is so much going on at the hospital- nurses in and out, doctors, RT's, therapists, and so much more including meds and feeds. We then went on a long walk outside on the Burke Gillman trail, much to my persistence not to. I don't feel comfortable leaving the hospital grounds, but... as I walk with them more, I realize that the nurses don't mind at all, as long as we let them know, we are being safe and slow, and always come back. That night was my second night with both kids at Seattle Children's. The start of the night went very well. But as the night went on, Hannah woke up and cried every 1- 1 1/2 hours. Plus Emma needed more help re-positioning. No sleep that night, but that's okay. At least I was able to give Dustin a break. We are almost one week done! We've got this. 

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On the 7th, I was up at the hospital that day. While Dustin had a work meeting at home, a music therapist came by. She sang fun songs and cute Disney songs on her guitar while Emma got to play a keyboard. Emma loved doing all of that. The therapist wanted to play a song for me, and she was able to sing and play an Allison Kraus song beautifully, all improvised! Then later that day, we all went on another walk outside. Dustin clipped a bunch of bamboo shoots off the many bamboo stalks around the hospital landscaping. They have a ton, and he wanted to start growing them too. Day number 9 was an at-home day for me, as I had a dentist appointment. I brought Hannah into the doctor while I had my teeth cleaned. Back at the hospital that day, Emma finally maxed out on her weights for traction. The bed is pulling on her spine at 6 pounds, the wheelchair at 12 pounds, and the walker at 14 pounds. They are all a percentage of her body weight. Uncle Keith also came up to visit, so that helped break up things a bit. On Wednesday, I came up to the hospital. She was having fun spinning and twirling around while standing, even if she was hardly touching the ground. She also loves dangling- leaning on her elbows on the handles and kicks her feet. The doctor didn't seem to concerned, as she said most kids will dangle their whole body weight. Emma was also pretty grumpy off and on that day. That's how this hospital has been- happy about 2/3 of the home, and really angry and defiant 1/3 of the time. She's still trying to accept her situation. She probably is hurting and uncomfortable too, even though we give her Tylenol pretty frequently. We feel obligated to keep her busy so she stays happy, but it's exhausting. We went on a walk that day and she loved watching an empty ambulance pulling back into the hospital. Over the intercom, the driver said over the speaker "Have a nice walk! Bye!" Emma thought that was hilarious! She also likes saying hi to her "friends"- the banners of kids on the telephone poles along the main drive, including her own banner. We also had a kid point to Emma in the hospital and ask his home if he could try that too, referring to the halo/ traction, as Emma made it look fun. That was pretty funny!

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On September 10th, it was my at-home day, getting things done around the house- cleaning, taking care of pets, laundry, making and packing food. I came up to the hospital the next day. Rachael's mom came to visit us that day. It was a good visit. Emma had lots of fun doing the games and books that she had brought. There was also a pre-Halloween party in the playroom that night. Emma had fun painting and decorating a pumpkin and playing at the play kitchen area. My mom had a good time being with Hannah crawling around the baby area so I could spend good one-on-one with Emma. Dustin had left earlier that morning so he could get to his infusion appointment. My mom left to drive home before dinner, so I had a long evening, night, and morning with both girls. It's so much more difficult doing it alone with both at the hospital. But that night went well! Actually the best overnight that I had there. The following day was a laid back Saturday with Dustin here. I spent the day making our Disney trip photo scrapbook with Emma. She LOVES doing that with me- looking at the pictures and helping organize and tape them on the pages. It was nice to review our trip while at the hospital, a good distraction. The following day was my first time attending church with Hannah alone. It was rare that I got to attend both hours with Hannah's breastfeeding and sleeping schedule. It was nice, but tough at the same time. I had lots of people ask how Emma was, which was kind, but it also made me feel so alone since Dustin and Emma weren't there. Overall, I'm glad I went. Hannah also got to be held and played with by an elderly widow during most of sacrament meeting. I think she really needed that. Also that day, Brett and Vicki Perry also came to visit Dustin and Emma. I'm glad they get visitors to pass the time.

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On the next day, on Day 15, when I came up to the hospital, Emma and I did a fun project from A Kid Again- an organization that provides medically needy kids with fun activities in the mail. The activity was to make a fort and create a story book. Our "fort" was a sheet over her traction wheelchair, turning the lights off, and the hanging fairy lights on. She liked that for only about 30 seconds. Then we made her book. We created "Princess Emma's Halloween" and I illustrated it for her. She decided what Halloween items to go in the book. She had a lot of fun with that project! That night was a typical one- Emma waking up every so often and Hannah crying for a while to get to sleep. It's something I'm getting used to. The next day, we walked to Shake Shak in the University District! We keep walking further and further with each walk, as Emma loves getting out of the hospital to pass the time. We got shakes and walked back to our room. She got visitors later that day- two sisters from the ward! They brought her a cute toy and it was really nice to talk to adults who aren't the nurses. That was sweet of them to drive all the way up to Seattle. Emma was a bit of a grump during the visit, but you take what you can get. Wednesday was my "at home" day with Hannah. I took her and went on a walk around Tumwater Falls. I needed to get some alone time with her out of the house and hospital, just time with her. I also wanted to see all the beautiful fall colors before the rain started! I was at home the next day too doing some garden and clean up. That day, Dustin met Brenda Eng, our Rehab main doctor on the Burke Gillman walking/ biking trail. She was walking her 2 small terrier dogs and had fun taking pictures with Emma. Dr. Brenda didn't care we were walking outside so far, as long as we were safe! She really loves Emma. She was the one who put together the princess party for her last traction surgery, and is absolutely amazing. 

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The following day, on the 18th, I went back up to the hospital. Emma had fun doing small fun Halloween themed activities in the playroom. Spirit Halloween was giving away free costumes to the patients and she got a Super Girl costume! I also stayed up there that night. The next day, Dustin came up and we went on a LONG walk to the University of Washington campus. It was so beautiful. The fall trees were everywhere and the buildings are so detailed. We were bummed that the buildings were closed on Saturdays, including the Suzallo Library (the one that looks like Hogwarts Great Hall). We had a good walk anyway. The next day I went to church with Hannah, but only went to one hour this time as her naps and feeding schedule didn't line up. She is 9 months old today! Emma got to meet Dr. Brenda's dog again, but this time in the hospital as she was also a therapy dog. Pretty neat! Emma also got an x-ray as she was due for one and it looks absolutely amazing! So straight (compared to before) and so much more room for her neck! It was very encouraging. Emma has been overall very happy in traction. She does get bored easily and at times a little entitled, but I can understand why. Right now, in the hospital, everything is about her and for her. And rightly so. We still want her to be a good person and not spoiled though, so it can be hard to draw the line.

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On Day 22, I was up at the hospital. It was Respiratory week at Seattle Children's and they had a little lobby for activities and info. The RT's there all remembered Emma! We got to color some coloring pages of little animals with trachs and helped give an Ambu bag to some pig lungs. That night, was my worst night there. Hannah cried and screamed for 2 hours straight that evening, trying to get to sleep. I felt so bad for Emma, as she was being ignored, and for everyone else here. I tried so hard, and it was so incredibly stressful and draining. At least I could look forward to the meals. Since I am a breastfeeding mom with a baby under one, I get 3 free meals a day with room service, up to $10 each. We alternated who got the meal too, and I ordered for Dustin when I was home. It was nice as I didn't have to make and bring so much food up to the hospital. The next day, the only fun thing for Emma was that there were two clown ladies that tried to entertain Emma with their silliness. She would have none of it, and pretty much ignored them. Not sure why she acted that way. That Wednesday was my at home day. It was filled with all sorts of chores. We also got a drop off basket from the ward. It was full of snacks, relaxation items, and activities for Emma. It was so sweet of the Relief Society and the Primary! It helps to have a steady flow of new things to do, to color, to make, and to read for Emma at the hospital. 

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On the 24th, Emma had a sedated CT scan, since she can't sit still enough to do one awake. The doctor wanted to see every detail before surgery day. Emma did well. Going under is never fun, and thank goodness it was quick for her. The scan went perfectly. That afternoon, we went on a walk to the University of Washington Stadium! It was another nice and sunny fall day. I'm so glad we can do these walks to get out of the room. On Friday, Emma met a therapy dog that she thought was hilarious. It was her first time seeing a pug and she kept poking his squished nose and imitating his big eyes. The dog took it well, even though it was his first day as a therapy dog and Emma was his first visitor! That day, my mom was supposed to visit. But as soon as she got to the hospital, she had to turn around! She wasn't feeling well and it was getting worse. Pretty crazy morning. Dustin had work appointments that day, so he had to leave early that morning. I was alone with both the girls the entire day- a little stressful, but I did it! I look Emma on a walk while Hannah was sleeping and Hannah actually did well playing in her pack-in-play and sleeping. I even had the nurse help me take them down to the playroom. Thankfully, a volunteer or two played with Hannah, as our nurse just dropped us off. I couldn't watch both at the same time! 

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The next day, Saturday, was a Halloween party at the Seattle Children's Autism Center building 1.75 miles away. We decided we would walk there! It was rainy on the walk there, but we were prepared with Emma's wheelchair umbrella. It took a lot of planning on the go and maneuvering, but we found a good path along the sidewalks with the least amount of bumps possible. Once we got to the building, Emma put on her Super Girl costume- it was so cute! She had so much fun and was so excited! She got to knock on all of the clinic room doors, they opened up the door, then she got to push a button that said "trick or treat" for her, and got some candy and toys/ trinkets. She was having a blast. There was also crafts and some activities too. Towards the end it got really packed and busy, but she was able to get a prize for filling out her stamp card (which in itself was a highlight to complete) and she got to pick out a toy! She was all smiles that day! The walk back was a little rainy still, but not too bad. I'm glad she had fun I had to leave by 2 or 3 pm, as I wanted to take Hannah to our ward's chili cook-off/ trunk-or-treat! It was Hannah's first Halloween and I wanted her to have fun too. I dressed her up in Emma's previous costume of a clown fish and was adorable. The dinner went well- I had a lot of ward members ask about Emma and dote on Hannah. Then Hannah liked the trunk-or-treating. She had some big stares the entire time, taking it all in. Overall, it was fun, but I wish Emma and Dustin were here. One little boy from the ward that lies Emma, loved that Emma's costume was a Super Girl, as his costume was Super Man! The following day was Sunday again. Church was tough. There was a talk about health problems, miracles, not being healed, but accepting God's will. That Sunday was awful for both of us- so much anxiety and dread. The big surgery was tomorrow. Yesterday, I had to say goodbye to Emma in the parking lot. It was the last time I will see her until after her surgery. The day was full of frustration that she has to go through all of this, worry and fear of her being paralyzed, and dread. I prayed for peace, but I mostly felt anticipation. 

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