Emma has learned so much already! We had a special moment in mid-October, where Emma had her first babble! She had been “air leaking” around her trach, with her mouth open, or though her nose. Now, she learned how to leak along with moving her mouth and tongue! It sounded like a “wa-wa”. It was so exciting! This is so huge for her! Another exciting thing is that she is actually trying to roll over now! She slams her arm down on the ground to get momentum and reaches over. She just can’t do it herself yet because of her weak leg muscles, so we have to move her leg over. But she actually likes playing on her side now and has that desire- which is HUGE for her. We will keep working on that. Another neat thing is that she is eating up to 1 oz of purees by mouth now! When we left the hospital, it was 1 ml- a HUGE difference. One day, I decided just to see how far I could go with her and now that is our standard. Pretty neat! Every now and then, we have decided to mix things up with her bath and I get to take a bath with her (instead of the baby tub on the counter). It is such a neat bonding experience. She loves it too! She can float and play a little better. It was a little scary at first, because I didn’t want to drop her or get water on her neck, and into her lungs. But it’s not too bad. Also, we had finally switched to Nourish too- a blended natural food other than milk formula. She is no longer constipated, but now really gassy. That we can help!

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Emma’s first Halloween at home was exciting too! We had fun carving pumpkins and Emma watching in her high chair. She didn’t like feeling the squishy pumpkin guts. I carved an “Emma pumpkin”- a cute face with one of her old trachs and ties on the bottom. We also went to a “trunk-or-treat” at our church building- similar to trick-or-treating, but instead of houses, it’s trunks of cars lined up in a parking lot. Easier, safer, and fun to decorate! Everyone loved our costumes- Emma had on an astronaut outfit and her vent was decorated with a painted cardboard spaceship. She looked like she was really floating and hooked up to the spaceship! I was dressed up as an alien, complete with a green wig and weird make-up. Dustin was space- black clothes with stars. Pretty fun family costume! It’s awesome having a child when trick or treating, especially when she can’t eat, us parents gets all the candy. Emma was so tired afterwards though. My arms were aching too- she’s heavy now- 18 points already!

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November 1st was a BIG day for Emma. She was able to get her hearing device- 3 months earlier than planned! Thankfully, Dustin was able to come to the appointment, and it was just us two with Emma. The Audiologist first explained details about her bone conduction hearing device, then it was time for her first time hearing sound. I sat her up on my lap and the doctor put the headband with the device on. It took her a second to notice, and then when she did, she paused. I said her name and she looked up and me and gave me a huge grin. Then, her shoulder or my arm was too close to the device, and it squealed. Oh, she did not like that. It was a slow transition to a sad face, then she cried for 5 minutes straight. Since then, she has been trying to make it squeal, as now she thinks it’s funny! The first week with it on was neat to discover what she likes to hear. She loves her noise making toys- especially the sensory bottle we made with beads. She loved playing the piano, hitting things together, and clapping. She actually gets startled now. Having the bone conduction hearing device on a headband is nice, as we take it off when she sleeps or even when things are loud or overwhelming. Hopefully she will start to learn her name soon too!

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Another special day was November 10th. It marked the day where she has been home longer than the 8 ½ month hospital stay. I am so grateful that she is healthy and happy- she is just thriving at home. That day also was a neat one as we got to take Emma to the Portland Temple LDS grounds. Dustin and I finally got to go since she’s been in the NICU. All the missionaries at the visitor’s center loved her. There was a pretty good size Christus (a life-size statue of Christ, after his resurrection), so I took Emma up to him. It tugged at my heart as she looked up high into his face for a while, then reached out for his out-stretched hands. She definitely knows Jesus Christ. He has done so much to help her. I hugged her so tight. We also were able to take her inside the temple to the indoor garden. It was beautiful and peaceful. After meeting my grandparents and aunt afterwards for lunch, we left for home, Emma sleeping the entire way home.

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The week of Thanksgiving, we were given tickets to go to the Seattle Aquarium. It was a fun trip for Emma and lots to see. There were many fish, an octopus, and some seals and otters. She loved watching all the fish. Santa and an elf were there in a huge tank, scuba diving! Emma’s favorite part was a huge column of bubbles. She stared at that with her mouth wide open in amazement. On the day after Thanksgiving, we took Emma to Jensen’s Christmas Tree Farm. Emma was not amused wtih walking around to get the tree, but we took a couple of pictures anyway, then went inside the barn to pay. Another customer in the barn paid for our tree! She said that she had a special needs baby once, so she wanted to pay it forward. There are still good and amazing people in this world. We were touched by her willingness to give. Over the next couple of days, the tree was dried, then decorated along with the rest of the house. It was a happy evening decorating, as it was Emma’s first Christmas at home. Emma sat in her high chair, watching us put the lights on the tree. She loves watching them twinkle. It was a wonderful cozy evening, lighting to Christmas music, decorating the tree, sitting by the fire, and playing with Emma. This is pure happiness! On Christmas Eve, we went to two places to see Christmas lights- the Maytown church nativity, and the Cottage Treehouse. Emma LOVED the lights! They were both places to walk around and carry her. She kept her mouth open, clapping, happy hands, and kept contorting her body to look at everything (leaning way back and elbowing me to look at everything). Christmas morning, we made my “special French toast” for breakfast, then opened presents. By the end she started getting the idea of ripping the wrapping paper. She was so exhausted she fell asleep the entire morning afterwards. I am so happy we are together for Christmas!

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We have now had to start disciplining Emma. I hate HATE it She pulls on her hearing device, suction catheter, trach balloon, circuit, g-tube, and even tries to get her fingers in her stoma. So, in order to discipline her, we hold her hands up by her head and squeeze them, holding them until after she gets mad. Then we tell her no, shake our head, looking stern, and saying no with sign language. All of those parts have to be there. I hate making her cry, but we have to do it, as she is definitely pulling things on purpose. She looks at us slyly and does it mostly when she is getting tired. Hopefully this phase ends soon.

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Emma has started to learn how to “draw”. Loosely defining drawing because she has a hard time accurately holding the crayon, marker, pencil, and putting it on the paper on the right direction, and pushing with enough pressure to make a mark. She is getting there! She has also had many firsts in the month of January- she has really understood how to clap her hands, and have fun with it! She has learned how to pull part toys with a little assistance. She is also eating and feeding herself with a spoon! She gets mad now when I try to feed her- she wants to hold the poon and put it in her mouth. I have to get it in the jar and get it in her mouth, and sometimes help her close her lips around the spoon. But she is loving it! Well, at least the peach puree, mango, squash. She doesn’t like bananas anymore, along with green beans and peas. I love how she is getting more independent. She will get frustrated when she can’t do things by herself now. She has also learned two signs of sign language! She does “all done” really well, even just to tell us she doesn’t want something. She can also do “more”- she doesn’t do that one as often. She can recognize more signs, but doesn’t imitate them yet.

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In mid-January, Emma had an MRI under anesthesia. We were told that the orthopedic doctor wanted more images of her spine. When we were in the waiting room at Seattle Children’s it was really sweet as two twin girls, around the age of 4, came up to Emma and wanted to know more about the trach/ vent/ hearing device (we call it her ears). They kept saying how cute she was. After going back to their mom for a couple of minutes, they came back with drawings they’ve colored for Emma. It was so sweet. I love how other kids treat Emma. They stare, but most ask questions and fall in love with her. Adults are interesting in that they stare when we aren’t looking and usually avoid us. Anyway, in preparation for the MRI, I was able to go back to a little room and watch the doctors give her anesthesia through her trach. It was calming actually, and I got to stroke her hair as she fell asleep. The MRI was fast and she did great. She never does well coming out of the sleep though- she gets very angry. But hopefully, we will hear the results soon.

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A couple days after our doctor appointment, we had an amazing experience. I had heard through Facebook that there was going to be this organization called Go Baby Go, at the Tacoma Car Museum. They donate and modify ride on kids toy cars for children who have disabilities. Mainly those with impairments. Late evening on Friday I applied for Emma, thinking she wouldn’t get in on time. But we did! The next morning we drove up to the car museum and checked in. There were 8 tables, each with a car, and about 6 people working at each table. The supervisor lead us to our team of people working for Emma. They all knew Emma’s likes, dislikes, activities, her limitations, and other thinks from her application and had it memorized! They team worked on the electrical part first- rigging it so that to make it go was just a big push button where the horn would be on the steering wheel. They also re-wired other things like the steering is relocated to a remote. We then got her fitted into the car. This was a very complicated fit as they had to have cushion, enough support for her sides, front, and back. They used pads, and a PVC pipe with Styrofoam to help her be supported. They also created a PVC holder for her vent and a hook for her food and pulse/ox. At first, Emma was scared and cried in the car, as we were fitting her in it. Unfamiliar faces and place, and it was loud around her. We had to keep taking her ears on and off. We then got to help decorate it too! They even added lights on the underside. Now it was time for Emma to ride it. She loved it! She knew exactly how to push the button to make it go, while we steered with the remote. She had so much fun. At the end of the event, all 8 kids with their cars drove through an assembly line of all the people in the teams & parents with checkered flags. We left exhausted, and so very grateful. We are excited to be able to ride the car around the house and that Emma can have a little freedom of movement. All at no cost to us! It was an amazing experience.

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At the end of January, Emma’s pulmonary team wanted to see how she would do weaning back down on her PEEP (the vent pressure). We went from 13 to 12. She did fabulously. In the coming months, they have approved us to wean her down slowly, as she tolerates it. Another thing that Emma has been doing recently is having night terrors. She will randomly wake up (especially after 30 minutes of sleep) super angry and hard to calm down. The only two things that help is to pick her up and rock her, and to put our hands on her cheek. She loves that.

In the first week of February, we had what the people of Seattle are calling a “Snowmaggeden”. We got dumped with snow on Friday, Saturday, Sunday, and then the following Wednesday. We had about a foot! (Which is a lot for here). The best part was that it was Emma’s first snow experience. We put her into a poofy snowsuit, then took her outside. She was mad at first, because it was bright. Plus, she didn’t like the light snow falling on her. When we took her to the back yard, she started to enjoy herself. We made a snow chair for her to sit in while she watched Dustin have a snowball fight at Luna as she ran around. Emma thought that was pretty funny. She was interested in touching the snow a little with her gloves on, but not so much with her bare hands. Wasn’t a fan of doing snow angels either. We even built a “snow Emma” with a circuit attached and wearing one of her hats. Overall, she loved the snow! It was rough in our driveway though, work and school were cancelled, and our nurses couldn’t get here. But we had fun. I always love one good snowfall each winter.

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On February 27th, marked one year of Emma being home from the hospital! A lot has happened since then, and at least almost all good things! We were also able to get Emma a really nice medical stroller- one that Emma can sit upright in. Someone on Facebook found me somehow and asked if we wanted this stroller that they didn’t use any more. It was only used twice! And they just gave it to us. People can be amazing. It’s really big, but I’m glad, so she can grow into it.