It's now 2025! Another year down. Emma thought it was hilarious to actually change the year on her interactive magnetic calendar. The first two weeks of the year have been good- Emma is fairly happy, even in her halo. She is now LOVING Mickey Mouse Clubhouse. Watching it on TV, playing with her Clubhouse toy, hugging her Mickey stuffies and reading Mickey books. ​A few days ago, we met with the Bishop of our church to talk to him about Emma getting baptized. We told him how we know she is accountable, even though not at an 8-year old level. We told him our concerns about safety and her trach. He had the thought come to him about partial submersion. He told us he needed to go to the stake president and the area authorities to get permission first, but will come back to us soon. The next Sunday we approached the Bishop, and he told us that the area authority told us that baptism is by immersion only, no exceptions. It was so disappointing, so disheartening, and we were lost at what to do. Surely, that would cost her life. All that day, Dustin and I did a lot of talking through things and problem solving. All of this gave us a push, in a way, to figure out a solution. We can please the Lord with our work, and He can take it from there. We went though all the options we had with medical equipment, tapes, and dressings. We decided on using a few different options and layers around the trach and vent circuit. And we could do trach care right after and suction as soon as we can afterwards too. Dustin made a "trial" by cutting a hole in a bottle to represent her stoma, putting a spare trach in, and submersing it with all of our ideas. It worked! We plan on taking all of this to her Pulmonary visit in April. Now we just pray that her doctor is okay with it all.

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At the end of January, Emma had a routine x-ray with her halo. We found out that the x-ray showed some scoliosis getting worse low on her spine, below the fusion. This was because the weight of the halo/ vest was compressing her spine. It was devastating to hear that. It doesn't usually get straight again. Well, we planned to then remove the halo for sure on February 3rd. At least we can get it off sooner at the 3 month mark, even though we have no idea what the next 3 month process will look like. 

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On February 2nd and 5th, we got our only snow this winter. Emma was less than thrilled to be out in it, but was excited to see the snow falling out of the windows instead. It was so beautiful! Between the two snow storms, on the 3rd, Emma had her halo removal! The waiting at the new Seattle Children's surgery center took forever. Dustin stayed with her as long as he could, while I was in the waiting room with Hannah. The actual procedure took 20 minutes to take all the pins out of her skull. After she woke up from the anesthesia, the doctor came in to look at the fit of the neck brace. It needed some adjusting, so the nurse and Dustin had to hold her head still until they got back. It was a long 15 minutes! They originally told us that we needed to stay the night for various adjustments, so we were prepared with all our overnight things. But we got a good surprise that we could leave that day! As we took her home, we were so nervous with every little bump. She could move her head a little in the neck brace, but she still needs to heal for 3 more months. But she did so good. We made a paper chain to count down the days until we could remove it. It was SO nice to hold her close again! And for baths, we still have to do a wipes bath, but we can wash her hair in the sink now (with lots of towels protecting the neck brace). We take off the front piece to do trach care- that's terrifying. We have to make sure she stays still and not turn her head. The back piece doesn't move though. It will get very dirty, but that's okay. 

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The last week of February, Emma had 5-6 days of insomnia. She didn't sleep for more than 2-3 really broken up hours every night. We had no idea why, still to this day. We ended up getting melatonin for her. We couldn't take it anymore without any sleep. She responded well to it, but we will definitely be using it sparingly. Thankfully, we caught up on sleep and stopped being zombies after that. Our only guess is to what happened is the probably was really uncomfortable in her neck brace. And very angry with us too. I really hate this neck brace, and this whole process we are putting her through. I want happy and silly Emma back. We get glimpses of it, but she doesn't usually do her signs anymore, has more temper tantrums, and doesn't want to do anything other than lay down at home. She won't play with her toys or want to go places which she loved before. It's heartbreaking. I'm looking forward to May 1st (when we get it off) every single day! 

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Right now, Hannah is walking full time now! We decided to take down the huge playset pen, much to our hesitancy. But we found if we close all the doors in the hallway, put a baby fence to the kitchen and a long baby fence through the living room, Hannah has access to her room with all the toys and books, can walk freely in half the house (while being safe) and has some toys in the portion of the living room too. It makes our house a mess, but that's okay for now. I'm learning and trying to let it go a bit. It works out too, as the girls can both be interacting with each other, but the gate keeps Emma safe from Hannah. She still tries to pull on her trach, g-tube, hearing aid, and loves to tackle her and land on her stomach. When Hannah is a little older, then she can have these gates down. Right now, Emma loves doing activities together. What that looks like is lots of coloring, sticker books and crafts. She loves to complete things. So a big sticker/ activity/ coloring book is perfect for her right now. She gets so excited to finish and will keep them afterwards to continue to look through them. She reads them with all her books on the living room floor, where we cycle through lots of books too. That is her happy place right now. Another thing she loves right now is reading the church's Friend magazine. We will read a few pages each night before bed and tear out pages for coloring or crafts for the next day. Once we finish the magazine, she will read through it herself for a few hours, then tear it up. She excitedly asks for the shreds of paper to be burned in the fireplace. Silly girl. On April 5th and 6th was our church's General Conference. It went fairly well with a toddler running around. Emma had a blast. I had some various activities for her to do- coloring pages, mazes, bingo with pictures (she HAD to get a black out) and an apostle page to check off all the speakers. She was so excited to check off and color things to complete her pages. She could identify which speaker was on the page to the TV. She did great! 

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Rachael's youngest brother was getting married in April, but because of Emma's neck brace, we were nervous for her to go on the long car ride, as it was being held in Utah. Dustin suggested I take Hannah and travel with my family. So on April 10th, I left with Hannah a little after 5 am. I drove 4 hours to my parents house. She did pretty well on the drive alone! After I got to my families house in the Tri-Cities, we left for Burley, Idaho for the night. It was touch to be away from Dustin and Emma. That night, I talked to Dustin quite a bit, and he felt confident that Emma would be fine, we really HAD to be together. If anything were to happen to Emma, and I'm not there... So, he left the next morning with Emma, while Kevin drove to my parents house, picked up the car, and drove the rest of the way to Burley alone with Emma. I still can't believe he drove 7 hours alone with Emma- crazy! She did so well! He gave her frequent breaks and she didn't seem to be in any pain at all. They met up with us later that evening in Burley. We all went to a nice restaurant with my aunt and uncle that we were staying with and then had a good night's sleep. That next morning, we left at 6:15 am for Draper, Utah. It was a quick 3 hour drive. Dustin met up with a family friend of his parents and she helped watch Emma and Hannah while I went into the temple for the wedding ceremony. It was a beautiful wedding. After pictures, a quick nap in the car, and a luncheon, we went to Salt Lake City before the reception. We walked around the temple square. It was very small right now, as the temple grounds were under construction, but neat to see it all. Then we went to the Church History Museum, played with the kids toys and coloring in the children's center. Then we drove to the reception in a large barn venue. The reception was really nice. Emma had enough socializing at that point, so she hid in the stroller with the cover over her head and didn't want to come out. She was very tired. Hannah was a nut, walking around and poking the other toddlers. We left that evening for Burley. It was a nice and peaceful drive while the girls slept the entire way back to my aunt and uncle's house. The next day, we woke up early to drive for home. The trip went fairly well, except that last 2 hours. Hannah was just done with the driving. She was cranky and super inconsolable. But overall a good trip! 

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April 20th, was Easter! And of course, we made the holiday memorable. Emma made an Easter diorama with cutouts in a box (from the Friend magazine). Both girls colored Easter eggs and some Bluey Easter cookies. They both had a quick egg hunt indoors. Emma had fun as always. Hannah was confused at first, but then had fun. We also had them find their Easter baskets. Hannah had a book and a stuffed animal, and Emma got a book and a sticker/ activity Bluey Easter book. I'm glad they had fun! A few days later, we celebrated Easter with the Krall family. we had a nice big dinner together. I then had a little Easter presentation with eggs and objects for a resurrection lesson. All the kids enjoyed it. Then we had the egg hunt! Emma completely enjoyed herself and was so excited. Hannah walked around and finally got the hang of it. Carly did a fantastic job of having fun little toys in each egg for both the girls instead of candy. Such a fun evening with family! 

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Four days later was Emma's Pulmonary appointment at Seattle Children's. We were pretty nervous, as we were presenting our plan to have her be baptized. We showed them the trach in the bottle with all of the tapes and dressings. They were on board! They also had a few ideas too. They set us up with a dual circuit and settings. It is such a relief that they are willing to work with us. They know how it is important to Emma and to us. It also helped that they knew that Dustin was doing the actual baptizing. We are still extremely nervous, but more confident now. 

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On May 1st, we had a monumental day! We went quickly to the Seattle Zoo. It was on our way to our evening Seattle Children's visit. We wanted to get a membership for the year with our pass, so we went in and saw a few animals before going to the hospital. We then went to Emma's Orthopedic appointment. Her x-rays showed that her spine healed wonderfully. So it was time to take off the neck brace! She didn't like it off at first in the doctor's office. She wanted it back on for the drive home. When we got home, we took it off while she was in her comfy place- laying down in the living room. She slowly moved her head back and forth to stretch. Then she said "all done" with the brace. Yea! It's gone! It was so nice to give her an actual bath after 7 months and to do trach care without having to hold her neck still. So glad that this part of her healing is over! Now for the long road of rehab and therapies. Let's do this! 

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Since Emma is gaining more strength with her neck brace off, we needed to get a little more frequent with her therapies. We stopped the formal therapies when we went into the hospital in September, and haven't been in since. We found out that her current therapy provider is booked out 3-4 months for just an evaluation appointment. And they only have one physical therapist, not occupational or speech therapy yet, so this PT would be all new to her anyway. We decided to switch to the Seattle Children's therapies even though it will be a longer drive instead of local. All 3 therapies are available and they will be specifically chosen and assigned to her needs. But they too, are 3 plus months out. SO we have some time at home to get her up to speed. Every day, my goals for her are: stand at the coffee table for 30 minutes during her favorite TV show (Mickey Mouse Clubhouse), sitting up unassisted on the floor doing an activity (usually a sticker book), activities in her chair (coloring, sensory, learning & homeschooling), and walking in her walker (every lap across the house is one sticker in her Disney collectable sticker book- we end up doing 8-9 laps). That's the minimum, so I try to get these done at least. So far, it's working great and she is making some good improvements. 

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On June 6th, we used our zoo membership and went to the Woodland Park Seattle Zoo. Emma LOVED looking at the map and telling us where to go, then crossing off the animal after we've seen it. We had fun watching the bear toss a fish up in the air and play with his food. We even got to see the elusive and hard-to-find red panda. Emma thought it was funny when we picked up and handed her a flamingo feather. 

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Now to Emma's birthday party! We celebrated on June 13th, as all the Krall family was available then. She had a Mickey Mouse Clubhouse themed party with themed balloons, banners, tablecloth, and I made the Clubhouse cake! She loved her cake and was so excited to tell me how to make it. We had the party outside under our covered patio and had ribs, baked beans, and all the BBQ sides. Emma was so hyper and exclaiming the entire dinner and was so excited. She had so much fun opening her presents and all the silly faces she makes. She was so excited to blow out her "8" candle with an extra circuit to her trach and was excited to open her toys and look at her new books. I'm glad she had a wonderful 8th birthday!

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A few days later we all had a casual Krall family dinner at Carly's house. They had a water table there, and Hannah loved playing in it. Emma wanted to join in, even though she hates getting wet. But she took a cup, and intentionally dumped water on her chest for the attention. She was laughing so hard. She had to borrow one of Alayna's shirts for the rest of the night, but at least she had fun. Both girls also enjoyed playing with their cousin's toys, trampoline, and laying in the hammock. 

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On June 19th, we went to the beach! We love going to the wildlife preserve at Ocean Shores as it's very close and usually pretty empty up until we usually leave. It was Hannah's first time at the beach! She had so much fun walking around in her bare feet in the sand. Emma was having a blast creating sandcastles with Dustin and adding shells and dead crabs, then destroying them. We brought her Bluey beach set and she had fun with that too. We tried to fly the kite, but we didn't have enough wind to keep it up. Hannah also had fun using the shovel in the sand and got buried up to her waist. I took Emma on a walk on the beach, and she laughed when she got to poke a dead jelly fish with a stick and was actually enjoying her feet in the waves. Hannah had her feet in the water for a while too, until a big wave got her soaking wet! After a wet and sandy lunch, we packed up. We then went and got ice cream! Emma's favorite. I love beach days.

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The following day was Emma's actual 8th birthday. We did a small party with just the 4 of us. Emma loved her learning and sticker books that we gave her. And all the crafts I get to do with her now! The following week was the first day of Emma's summer camp! It's the Thurston County Inclusion Camp for kids with disabilities. She loved it last year, so we enrolled her again. She had fun with playing keepy-uppy with foam noodles and balloons, playing on the playground, and tie-dying her camp shirt this week.

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Now for June 28th, Emma's baptism! That was a crazy day. My family got her that day from the Tri-Cities, then we left for the church about an hour and a half before it starts. It took us a while to set up the chairs, fill up the font, and all our medical stuff. We had a card table in the dressing area with the tapes and dressings needed for her baptism, a second suction machine, her vent, her undies and white jumper, and a nose plug. We had to order a 2T size white jumper on Amazon for christening babies as the church didn't have anything smaller than a size 8, of course! Then for afterwards, we had her white dress that my mom got for her, hairbrush, and her trach care supplies. We also had her emergency bag filled with other medical supplies on hand. All of this had to be set up, including Dustin's white clothes and a change of clothes for him too. Emma had these cute braids- we joked that they looked like dreads because her hair is so thin and short. Before it started, Dustin took Emma to the font steps and had her feel the water. They practiced the baptism motions one more time. The room was full of people when we started. I'm guessing around 60 people were there. After an opening song, prayer, and a talk about baptism from my dad, Dustin went up to the front and gave a little intro as to why Emma's baptism was so physically difficult and that we need everyone's prayers. Then Dustin, Emma, and I went into the changing room. As we put the many sticky dressings on, she started to get scared. She scrunched up her shoulders to not let us put the tape on as easily. We asked her if she still wanted to be baptized, and she said yes. Then she relaxed a bit. It was a lot more difficult to put the dressing on under her chin than on a bottle! My stress and anxiety was through the roof, but I knew this was the Lord's will. I was nervous but was content. It took a while, but we finally finished getting her ready. We put her dual limb circuit from her vent on her and her nose plug. We walked out into the font. I held the vent, suction machine, and a towel. Dustin said the baptismal prayer, then after he said amen, I took Emma's hearing aid off. Emma looked excited. I counted down from 3, and Dustin did the quickest baptism ever, and Emma was fully submersed! The moment she came out of the water, she looked so scared. She didn't think it would be so scary to under the water. It took me a second to grab her with the towel, and then we went back into the changing room. Dustin held her a bit to get her to relax. We also wanted to make sure her scared panic face was from the water and not that she was drowning. But she calmed down pretty quick. We did it! I can't believe she is now baptized. We laid her on the table and took off her wet jumpsuit. Then we did trach care. Her ties were soaking wet, but the 3 layers of tape/ dressing came off and the inside by her trach stoma was COMPLETELY dry! What an absolute miracle. We didn't even need to suction her. After we replaced the trach ties and pad to her regular ones, we put on her white dress. Before we went out to the congregation, I gave Emma a big hug too. We are so proud of her to want to be baptized like Jesus. When we came out, my grandpa said that my smile was so big! I was so relieved and happy! Then Carly did a cute presentation on the Holy Ghost with a bag of fun object lessons. Emma thought that was silly. Then Emma had her wheelchair up front, white the direct line men with the Priesthood gave her a blessing for the gift of the Holy Ghost (we wanted to limit it as much as we could due to the fragility of the weight of the hands on her spine). Emma did so good sitting still and praying during the blessing. Dustin did a good job on the prayer too. I'm so happy that Emma can now have the Holy Ghost to help and comfort her. This is wonderful. Then the bishop told a touching story of how he knew Emma should be baptized. After a closing song and prayer, we had a nice sister from the ward volunteer to have treats ready. Then all of the family came to our house for an open house dinner (especially for the out of town family). Emma was so excited on the drive home. Dustin made hamburgers for the family and we had a wonderful refreshing meal. It was crazy, but fun. Then Emma opened her birthday/ baptism gifts from my parents. Those were fun too! It was a crazy rollercoaster of a day, but so thankful that everything went smoothly. 

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This Independence Day was a fun one. We went to the ward flag raising and breakfast. It was a pretty cold morning, so Emma was wrapped up in a blanket. Breakfast was so good, every breakfast food out there was served! It was a great start to the holiday. Then we took a break for a few hours at home, then went to downtown Centralia. They had activities at the park until 3:30. We showed up at 3 and most booths were packing up. Emma got to do a few though- she made a red, white, and blue necklace and bracelet. Then we stopped by Insert Coin, an arcade, until the parade started. Emma had a ton of fun watching Clark play some games, and she got to play some too! I followed Hannah around. She was so wired! She ran around with her arms up, exclaiming, going from one machine to another, pointing at all the flashing lights and stuffed animals. Then it was time for the parade to start, we took our seats on the street bump out by Carly and Kevin. Emma had SO much fun! Every parade car or person walking by gave her all the candy. She was so excited! She counted all the police cars- she got up to 9. Hannah had fun until the last 10 minutes. I think she was just over-stimulated with the parade and the arcade right before. She cried and held on to me towards the end. That evening we did the pop-its in our driveway. Emma loved throwing them and hearing the snap. Then if they didn't pop, both girls had fun stomping on them. We wanted to watch the fireworks, but didn't. Hannah had her over-stimulation today and she was just getting over a cold and didn't sleep well the last few nights. 

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The following week, Emma had another summer camp day. It was not as exciting with the science day with Legos and robots, but she did have fun coloring and doing Simon Says. 

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We look forward to what the rest of the year brings!

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