The first full day being at home from her surgery, we took it easy. She was doing so well, that we decided to go to Costco for some groceries. We wanted her to resume life as normal, regardless of her halo/ vest. We got many stares, smiles, and comments on how cute she is, and one older man stopped to talk to her. It was very sweet.

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Since our nursing situation wasn’t going anywhere, I decided to create a Facebook ad like I did last time. I posted the ad to 5 different buy/ sell area groups. It was outstanding- it got over 2,000 shares, tons of comments, and likes, and people tagging others. Sometimes our community comes together to helps others in an amazing way. It helps when the person in need is a cute little girl!

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Emma is now adjusting to her life with the halo. She can’t move her head, neck, back, or abs and I think it’s been a little frustrating for her. She has learned to really look with her eyes and reach out with her hands to get what she is wanting. She will even push her hands into you to turn her around, and you better be ready for it, as she is super top heavy and will go where she wants to. She has this drive, this determination to do what she wants, even with everything in the way. She’s learned that the bars are in the way of her peripheral vision and it’s hard for her to get her hands to her face, but somehow has figured out how to get her hands inside. She has now a fascination with holding certain items, mainly comfort items- q-tips, syringes, pens, and most importantly her HME (an extra piece to her vent). It has holes on either end, and she loves putting her pointer finger inside and holding it up like a finger puppet. She has gotten really good at telling us “all done” in sign language and regaining her “more” sign again (she lost that for a while). We have also started re-introducing purees again, for the first time in 3 months. She did amazing! She ate about 15-20 ml’s and was actually swallowing it, not spitting it out! About ¾ of it came out of her nose though. We really need to get her cleft palate fixed. But wow, am I proud of her! Her VanGorkum grandparents came for the weekend after she came home, and she had fun playing with them. She loved grandma’s Minnie Mouse watch and had fun eating on a fry when we went out for dinner.

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On May 6th, Emma was able to get rid of her casts and get AFO’s (removable orthotics or feet braces). They had cute flowery patterns on them with pick straps. They are so nice to be able to take them on and off and to re-adjust them. They are only to be worn during her waking hours, and I’m not sure for how long. Once we got home, I really cleaned Emma’s feet and legs. A month and a half of dead skin was really gross. Afterwards, she had so much fun moving her feet and legs on the clean towel. It was wonderful to see her moving them so much.

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A couple of days later, we had a very touching act of service done to us. Through our “nursing wanted” ad, a man named Norm contacted me. He said that God had touched him about our little girl. That weekend, he had a garage sale and donated the money to Emma. We met up at a park and he got to meet her, then he gave us the money. I couldn’t say thank you enough, and all he could say was that it wasn’t him, it was God. I am so touched that a random stranger will do something so kind to us. It really makes you think that the world isn’t all that bad. What a wonderful guy.

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About a week and a half at home, we decided (rather last minute), to take Emma to the beach for the first time! Even with her halo/ vest, we can do it. It was going to be a really nice, warm, and calm day at the beach (which is rare for Washington), so we decided to go for it. We went to Copalis beach, as the website said that it was easily accessible. We put her in a foldable wagon with foam and padding, and wheeled her and carried her stuff. When we got to the ocean’s edge, I kneeled down with her in my arms while she touched her toes in the water. She thought that was so funny! Even though it made her toes freezing, she loved it. We gave her a sand dollar and she held on to that the entire time, even on the ride home. As we walked on the beach, we saw 2 bald eagles most our time there, eating crabs. A very beautiful scene. Emma eventually took a nap in the wagon while we were waking. When she woke up, we sat down on a towel, and had her play with her feet in the sand. We took care that her vent or vest didn’t get any sand in it. She wasn’t too impressed with the sand, even though I thought she would be loving it. Although, at that point, the wind started picking up. She started to get a little panicky, it was getting a little colder, and she was still a little tired. We made our trek back to the car. Pulling that wagon (with Emma and her supplies in it) was a HUGE workout! It’s not meant to wheel in the sand. Even though it was a short trip, it was a fun, first time beach experience!

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The week of May 14th spurred an amazing thing for Emma. Fox news aired Emma’s princess party story. We all stayed up late and watched it live. It then came out online and on Facebook. Then the day after about 6 different news sites picked the story up. A couple of days later, dozens more news companies! All local at first, then nationwide. Insider Edition created another good video about it. Then someone from Good Morning America/ ABC news called me for more questions. Then LDS Living emailed me. Lots of comments of love and encouragement on the articles. Soon people from around the world were commenting, sharing, and trying to add me on Facebook. The comments I loved the most were the ones that people said that they needed to see that today. Or that it put a smile on their face. Or that they realize now that they can’t complain, if she is happy. It was remarkable at the influence Emma has on others. Right now, the FOX news story on Facebook as 27,000 likes and over a million views. Pretty amazing.

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At the beginning of June, Emma had two local doctor appointments, so my sister-in-law graciously offered to drive us there. Apparently, my niece (who came with us), was sick, but we had no choice. Emma needed to go. The day after Emma got sick too with the cold. This is only her 3rd one, which is pretty good considering she can catch things easily. She was pretty miserable though- elevated heart rate, breathing faster, lowered oxygen, not sleeping, coughing tons, lots of secretions and suctioning, cranky, and is having fevers. It took her about a week and a half to get over it. She continued to play throughout it all though!

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Emma has become such a cute toddler. She is learning so much and is soaking everything up like a sponge. She loves to play with anything new, and loves sticks and twigs when we are outside. She will hold the stick in one hand and poke it with the other. She can wave goodbye or hello, and can tell when people are about to leave, as she will then wave. It’s funny, as she will wave with her hand slow and close one eye, concentrating on the hand movement. We call it her pirate face. Her expressions are becoming more and more animated too. She’s got the kissy face down, the eyebrows raising, she can pull her mouth from one side to the other, sometimes everything at the same time! She has also learned how to say “goodnight”. She will sign “night” to us when putting her to bed or for a nap. She even knows our routine and will do it one cue even before we say it! She’s so smart.

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In mid-June, we got the green light to start weaning her Omeprazole. We have to wean slowly, with a 4-step process, so we need to be very observant is she starts gagging or vomiting again. So far, so good! We also have a date set for her halo removal- July 9th- it’s coming up! I decided to make Emma a “halo removal paper chain” so we can visualize the days counting down. It’s got alternating paper hearts and the halos. 3 more weeks!

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The next day, we had some Seattle Children’s appointments. Emma had to get some blood drawn to get her blood gas numbers, to see how well her body is adjusting to the vent settings being weaned. She is now at a PEEP (or air pressure) of 10. We’ve gone down from 13 already! And her bloodwork says she’s doing great! The pulmonary team even said her CO2 is just a bit low, which means she could be weaned further from her vent. We will wait to do that until after her halo removal. That day we also went to see orthotics about the next step. We had originally been told that on the 9th the halo/ bars/ vest will come off, and she would get a neck brace or collar. Today, however, they told us that it is not possible. Her anatomy and small neck can’t fit a neck brace, especially one that can accommodate her trach. So, the plan now is to have the halo/ bars off, but keep the vest on. Then to attach a bar to the back of the best, then attach a helmet to the bar with a forehead strap. The strap will incorporate her “ears” somehow. It was pretty disappointing, as I wanted to have that vest off. They wanted her in more support. This will last for at least 3 more months. At least I might be able to cuddle her more easily. In order to make the helmet, the orthotics team had to get a plaster mold of her head, while Emma was sitting up in a bumbo chair. I guess it was relaxing and warm as Emma fell asleep, sitting up, while they were making the mold. We will see exactly what it will look like on the 9th!

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June 20th is now here- her 2nd birthday! She’s had a long and crazy journey in two years. She is definitely starting to get in her “terrible twos” and throw tantrums. But her birthday party went well. We had just our family here this year and we had a BBQ, opened presents, and had cake. I wanted to test myself to see if I could learn how to make a multi-tier Rapunzel cake with “the works”. I don’t really know how to bake, so it was a good challenge. It took days of planning, and making the cakes and fondant beforehand. But about 2 hours before her party, I finished! I’m pretty proud of how it turned out. It tasted delicious too! Her party was Rapunzel themed, of course! I had the Tangled royalty suns on banners and made faux paper lanterns up the driveway. We had princess balloons and a tablecloth. Emma even got to taste some of her frosting. She wasn’t too thrilled. Then she opened her presents. We were all exhausted afterwards, but we had a lot of fun!

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The day after her birthday, we decided to see if Emma could fit in one of those hiking backpacks/ carrier thing. She fit a little snuggly with her halo, but it can work! That afternoon, we went on a small hike. The hike was actually pretty difficult, as it gained elevation fast. But Emma could only handle being in that backpack for 30 minutes before getting really angry. Dustin was the one wearing her, along with her vent strapped to his stomach, and the emergency supplies inside the backpack. I carried the suction machine. She was really heavy, especially with her vest and halo! We had fun, and it was nice to get out of the house. Being able to do this opens so many possibilities! I never thought that hiking with Emma was possible.

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Later that evening, we had gotten a package in the mail for Emma. Someone who had saw her princess party news video wanted to give Emma a personalized pillowcase. Apparently, she owns a charity business doing this to those with medical needs. The pillowcase was so cute with princesses and her name in big letters. She also made a personalized card. What a generous and wonderful thing to do!

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A couple of days later, we had another doctor appointment up at Seattle Children’s. It was a pre-op and to review her halo removal procedure. I also asked the doctor about her AFO’s, as the angle of them is more of a 45-degree down, and now she can flex them to a 90-degree. He said that we will need to re-cast after her halo removal, but in the meantime, to leave her casts off! It is probably more detrimental with them on. She gets a good break! The only condition with not wearing the cast is that we agreed to do physical therapy with her feet and leg double the amount. When we got out of the appointment, in the waiting room there were about 20 young women wearing tiaras and sashes. They were all the “miss ___” counties of Washington state. They were going to compete for the title of Miss Washington soon. When they noticed Emma, they all circled around her and wanted to talk to her about HER crown. It was cute. They handed me all their postcards all addressed to Emma. She loved the attention and the sparkly crowns. When we got home that day, we wanted to see if Emma could fit in shoes now that her club feet are straighter. She could! Her first time wearing shoes! Her feet were a little small for them, and she kept pushing them off, but at last we can put her in shoes! 

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On July 2nd, Emma went with her cousins to the Olympia Children's Museum for the first time. We went early to avoid the crowds, but it was still super crazy. Emma had fun watching all the kids run around. Her cousins loved showing Emma all of the fun activities and bringing her things to play with .Emma had fun sitting with me inside the cars and playing with the steam machine. Her absolute favorite was a huge wall with a series of pipes and forced air. Kids would put colorful scarfs or balls in the lower portions, then it would snake up the wall and shoot out the top. The anticipation at the end is what really makes her laugh!

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We had a low-key but fun Independence Day. We went to our church activity- a flag raising ceremony (with patriotic hymns and a history lesson about how our founding fathers were inspired by God), then a lunch with hamburgers and desserts. Emma was getting overly tired at that point so we left early, but they had a watermelon eating contest and a horse/ carriage ride too that we saw on our way out. Since we have night nursing, and Emma would be asleep anyway, we decided not to watch fireworks this year. Maybe next year. It was a fun day anyway!

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Emma's halo removal was supposed to be July 9th, but we found out a day before that it was going to be Friday, the 12th, instead. Since Dustin already took that Tuesday off, we decided to do something fun as a family- we went to Rialto beach! It was a long 3 hour drive, but so worth it. It was such a beautiful beach- clean, only soft sand and some larger pebbles. We wanted to go at low tide to see the tide pools. We got there just before low tide, and was able to pull Emma's heavy wagon across the beach, through the rocks, to the tide pool area. We took her as far as we could go, then Dustin and I each took turns exploring, while the other was with Emma. She had fun being outside and it was super relaxing listening to the waves. The tide pools were so neat! There were tons of green anemones, purple and orange starfish, and barnacles stuck to the rocks and in little pools. It was amazing to see these in their native habitat and not just aquariums. We wanted to bring a starfish back for Emma to see, but they were not budging. After eating lunch, we had to go back as the tide was coming in, and we wouldn't be able to get back! Emma had a relaxing time and enjoyed herself. I'm glad we were able to do this before her halo removal. And that day came fast!