An Uphill Climb
Emma's journey is definitely an uphill climb. There are a lot of learning experiences that's for sure. On January 6th, Emma had a throat surgery. Last minute, us and the ENT doctor decided to move forward with the surgery to remove the flap of cartilage covering her upper airway. It was a quick day surgery. He scoped her airway with a camera, then used a little laser to remove the extra flap. The surgery itself went well and she was okay. The next 2 months were filled with anticipation and hope of her talking. Instead, it was gradual disappointment. There were no sounds from her at all. Plus, she needed more frequent suctioning and had more drainage out of her trach stoma (and still does). The surgery was a gamble, and it didn't work. The best we can do is just move on.
A couple of weeks after the surgery, Carly's family took us to the Hand's on Children Museum in Olympia. Emma has been before, but it was a while ago when she was in her halo. She had a blast this time! She LOVED all the cars- the life-sized police car, fire truck, and farming car. She did her "grunt/yell" with excitement many times. She had some "big-eyed" excitements and loved the portion of the ball and water jet upwards. She really enjoyed the walking tricycle, even though she got pretty tired at the end of the course. Her other favorite part was the light table with the letters. She had a blast standing at the table and recognizing all the letters she knew. We will definitely have to go back!
At the end of January, we went bowling with the Olympia Area Latter-Day Saint homeschooling group. Emma had so much fun. She loved us walking her up to the lane putting her ball on the ramp, pushing it down, watching the pins fall, and seeing the numbers on the screen. We only played one game, but had fun! The older homeschoolers were so excited to see Emma and talk to her. It was a really good experience.
It's time for an Emma update! Right now, she thinks it's hilarious when I make her food for her g-tube at the end of the day. She likes the pouring and scooping aspect and will copy me with her own bottle, spatula, and measuring cup. She also loves it when I play piano for her or when she looks through the piano lesson books (that I teach my nephew with) and exclaims and points. She doesn't like playing the piano herself though. She also loves Packers football a ton, so Dustin got her an early birthday present- a kid's fan pack. It was a "membership" that gives you a fun intro pack (playing cards, lunch box, signed pictures, etc.) and other things throughout the year. She loves it and asks for the "G" things. She loves watching Dustin shoot basketball hoops. He will do that when I have Young Women leadership meetings. Emma loves the balls of any shape and any cars. Lots of exclaiming, yelling, smiling, and pointing. Another thing she loves right now are letters. So much in fact, that she has taught herself to spell words! I haven't really taught her too much of it, but she picked up on it quickly. Probably from her Baby Einstein or Bubble Guppies shows. She can spell dog, cow, go, and car. She gets so excited when she can rearrange the magnet letters and she will finger spell them too. I'm so proud of her!
In February, Emma had a routine trach change for the month. It didn't go well and we almost lost her. She immediately scrunched up her neck when we took her trach out. She immediately panicked, clawing at our hands by her neck, her airway collapsed, and she started to turn blue. I tried 3 times to get the trach it but it wouldn't budge. Dustin then tried while I held her arms down and neck back. He told me to pray, as she was really struggling at that point. I was practically yelling the prayer. Finally, after 2 tries, Dustin got it in. We were shaking. It's been years since we've had a real emergency. It really brings you back into the reality of having a medically fragile child. It brought me back to the many times that we could've lost her. We have a couple of ideas to make it go smoother next month, but wow. Hopefully it won't happen again.
In March, it was the busiest week in history! On March 19th, was our ward Pinewood Derby. We were so excited to make our cars. Mine was a Harry Potter themed car and Dustin made an American patriotic car. It was a lot of fun racing! At the last minute we decided to submit one of Dustin's old Pinewood Derby car from when he was in Scouting under Emma's name in the last set of races. Emma got 2nd place! So she got a small wooden trophy with a Hotwheel car on top. She wanted it off to play with it immediately. She loved seeing all of the cars racing down the tracks.
On the 21st, we drove up to Seattle Children's for Emma's pre-op for her leg rod removal surgery. We just scheduled this a couple of days ago since there was a cancelation. I'm glad we get to get it done. Two days later was her surgery. We had to wake up at 4 am to get there by 7. The surgery itself took a little over an hour- it started at 8:30 am and I went back into the recovery area around 9:45. When she woke up she was so angry. She wanted the IV out so bad. Her surgery went well and the rods came out great! The doctor (Dr. White again) said that her right rod had shifted a little over her kneecap, and that is why she didn't want to straighten out her right leg. We were able to leave around 11:45! It was the fastest day surgery she's ever had. That was also the last planned surgery. Now Emma just needs to heal and get stronger. Just a couple of hours after we got home she said she wanted to stand, then proceeded to roll on her stomach to do so. I had to stop her as she would be getting on her knees, but I did let her stand with a little pressure. She didn't like it, but wanted to so bad. Nothing stops this little girl.
That Friday morning we got up at 4 am again, then left for Idaho. We were headed for Dustin's grandpa's funeral on Saturday. We drove all the way to Idaho on Friday and back home on Sunday night. Emma did amazing despite having surgery 2 days prior. We had to make sure that she wasn't too warm with all her bandages and wraps on her legs. She only complained and was cranky for the last 2 hours of the trip. We were so exhausted physically and mentally. This week was so rough, but we got through it!
On April 6th, Emma got to take a bath since her surgery 2 weeks ago! We have been giving her wipes baths, but that didn't really get her clean. Plus she hates washing her hair in the sink. She really enjoyed herself in the tub again. She also is starting to put more weight on her legs and knees. Her strength is why down, plus she doesn't want to stand because I'm sure it still hurts. It feels like we took 2 steps back and 1 step forward, but I know she will get it back and surpass it soon. This is the last surgery so she should progress now. Nothing but up now on her journey!
The next day we had a fun family bike ride with Carly's family, Kevin, & Sophie. We went from the Monarch Sculpture Park to the city of Rainier. We got cookies at the shop and had dinner at the park .Emma had fun on the swings. We were approached by this little girl that asked what was wrong with Emma, her name, what her trach was, and what the suction machine was. She was super curious about everything. Her mom apologized to us, but we told her that we loved when kids asked questions. It's so much better than staring, whispering, pointing, or intentionally ignoring her. I can't stress that enough to others when they encounter Emma or anyone else with a disability. We rode our bikes all the way back and made it home. That day was 76 degrees! It was the nicest, warmest day of the season so far.
The following day we left early to go to Portland. We were headed for my VanGorkum grandparent's 60th wedding anniversary party tomorrow. We got to their house and spent the rest of the day talking and visiting with them. After staying the night there, we spend more time in the morning watching a movie with my grandma. Emma wasn't in the mood for this trip at all. She was just cranky and defiant. Plus, she had just got her seasonal allergies up and going again. She threw up a little Saturday morning in bed due to the coughing from allergies. Also, I think she was just done with the trips and just wanted her at-home routine back. I don't blame her- life has been really busy and crazy lately. We were able to go to the park as my grandma wanted to rest up for the party that evening. We left to help set up at the stake center for the last hour. It was a wonderful party with food, a slideshow, and an open mike. During the slideshow, I loved seeing my grandparents with Emma over the last couple of years. We had to keep Emma awake on the drive home. Even though we got home at 9:30 pm, Emma suddenly became hyper and happy again. What a turd. So many of my grandparent's friends came and said hi to her, but Emma didn't even want to wave back. Ugh, 4 year old's. She finally got to bed at 10:30 by the time we got everything set back up. It was a long but fun weekend.
April 17th was Easter! I got everything set up to dye eggs with Emma. We only had 4 eggs to dye, because our egg-producing chickens are few in number right now. I was excited to dye eggs with Emma because she had fun dunking the whisk in the cups last year. This year was a big "no" for her. She kept saying "all done" and being difficult. On the third egg, she pushed the food coloring vinegar cup off the table. I had to keep my cool. She made up to me later that day because we did a mini 4-egg hunt and she was very happy then. She loved walking around to find them and knew exactly what to do to put them in her basket. Good thing they were hard boiled as she liked to drop them hard in the basket. That night we had a nice Easter dinner with Kevin and Carly's family. Then looked for eggs in Kevin's front yard. Emma enjoyed that too. Afterwards, we ate candy while Emma played with the small toy trinkets from some of the Emma-specific eggs that Carly made. It was a good Easter.
A couple days later we went to the Children's Museum with Carly and Alayna. Emma did a fantastic job standing and playing with things and walking along tables to play. She loved the table with the play plate, food, and cups. She also loved sitting at a table with plastic horses and a barn. When it was time to go, she quickly grabbed a horse and pointed to her stroller chair. I had to tell her that we needed to leave the horse there. We will be going back more often!
On April 21st, we decided to do another CPAP vent trial again. It's been 6 months since we tried Emma on it. Just 2 hours in, her pulse ox went off, meaning her oxygen was low (80's) for 5-7 seconds. So that was the end of it. We put her on her regular settings. The next day the Pulmonologist agreed that she just isn't ready yet. That's fine, she just needs more time.
On the evening of April 29th, Emma was cruising/ walking along the coffee table and kept turning around to the couch, and back again. A pretty typical Friday evening. Well, she lost her footing and fell. I was sitting right there, so I caught her head before she hit anything (she still fell on her bum). She cried as usual, but kept wincing when we touched her, even though she was happy and playing. We went to bed thinking she sprained something or just scared herself. The next morning, she cried whenever she moved, so we took her to the urgent care at the Federal Way Seattle Children's. They did an x-ray and sure enough, she broke her left leg! She had a clean break through her tibia, close to where her leg surgery was. It happened because of the twisting motion while falling. They gave her a splint because they wanted the swelling to go down before they casted her. She got her cast 4 days later. They had to cut into it and put a wedge in, then recast and re x-ray. She needed pressure on both front and left side to make sure it set straight. She was in a ton of pain for all of that! It took 2 hours to get it perfect. It was so exhausting for her. We kept saying that we can't believe she broke her leg! The hardest part was that she recently got back to walking and standing after her surgery and how we have to have another set back to her progress. 2 steps back. She will get it back, but it's just a frustrating bump in the road. She couldn't do much with her cast. Mostly laying on the floor and sitting in her chair and table. The back of her head lost a ton of hair during that time too. We also had to cancel all physical and occupational therapy while she had her broken leg. She just wasn't having it at all and we weren't making progress. She get's a good breaking from working though!
In mid-May we went to the Tacoma zoo! It was technically with the local homeschool LDS group, but they wanted to go at 10:30, but we like going at 9:30 when it opens (less people and more animal activity). We thought we would see them but we never did. Emma had fun though! She loved the jellyfish and seeing the trainer make the seal do some tricks. On our way out, we went on the carousel. She had a ton of fun with that too!
At the end of May, we had an unfortunate event. While Emma and I were in Primary at church, the chorister was wrangling up the visitors to the front of the room so that we can sing the welcome song to them (Emma and I sit in the front). During that time, one of the visitors, a little boy, whispered to the girl next to him and pointed to Emma. He wasn't as quiet as he thought and I heard the words "weird", "scary", and "gross". Emma wasn't listening, but it hurt. A ton. I don't usually care, but this one cut me to the core. I told Dustin and he posted something about it on the ward Facebook page. The grandma of the boy called me and apologized. Then a couple days later, Emma got a sorry note and a colored picture in the mail from the boy. He felt really bad. It helped me be all right with the situation now that I know that he realizes how words hurt others. And that people with differences are not weird. It will happen lots of times in the future, I'm sure. I need to keep growing thicker skin.
On June 3rd, we went back to the Orthopedics for her broken leg check. They look an x-ray then took her cast off! It was 5 weeks after her break/ splint and a little over 4 weeks with the cast. It didn't seem long enough, but the doctor said that kids her age heal much quicker than adults. Plus, she said that standing and walking will make the "bone-healing" cells work faster. The bone will grow in faster and better if she uses it more. Interesting. So we came home and had her stand immediatly. Since then, she's been to physical therapy and working hard every day. She's standing a ton and getting into walking more. Her endurance isn't as high and when she walks it's very slow and she still favors her left leg. But she will get there. She's happy to be getting up and standing again. She was getting pretty bored with laying around all the time.
A couple of days later we were invited to dinner from a family in our ward that lives on a farm. They have a little boy, Mason, that is Emma's age and he LOVES her. He thinks she is the best thing ever. His mom says that he has never noticed or mentioned that Emma is different at all. We had a nice dinner then the rest of the evening we spent outside with their animals- baby ducks, bunnies, peacocks, pigs, dogs, chickens and lots of cows. We walked to their cow pasture and met Zipper- a super friendly cow. He loved being pet. He also loved nibbling on Emma's AFO shoe velcro and Emma thought that was hilarious. She even got to ride on Zipper for a bit too. She had fun saying "cow" in sign language.
A few days after, we weighed and measured Emma now that her cast is off. We were so excited as it's been about 3 months so we were hoping there was lots of growth, but there wasn't. He height was the exact same. She gained a little weight though. A little disappointing as it feels like we are doing the growth hormone shots for no reason. We do have a visit at the end of June with her Endocrinology doctor about this, so we will see what she says. It's hard not to be frustrated, but we just need to be patient.
June 20th was Emma's 5th birthday! I can't believe we have a 5 year old. We smoked a lot of meat for her party with the family. It was the regular Krall crew over that evening. I made Emma a cute girly car cake. She loved it! She kept pointing excitedly to her cake and saying "car". It was a fun summer evening.
A couple of days later we went on a beach trip with the Young Women of the ward. It was fun! The young women that came (only 6) were exhausted afterwards. Emma had fun playing with her cards in the sand, Dustin built a huge sandcastle, we flew kites, walked on the beach, and talked a lot. At the end of the evening, we had a bonfire and a fireside. We all got super sunburned too, Emma included! She heals so fast.
Now to Independence Day. We went to the annual ward flag raising and breakfast. Then later that night we went to a BBQ night at Carly's house. We didn't know anyone but Carly's family, but it was still fun. Then later on, we went to Centralia to watch fireworks. They started earlier than planned so we ended up just watching the last half, but it was still very fun! Emma stayed awake this time, so that was a bonus. The next day was Carly's birthday, so we all went to Fujiyama to celebrate before it closes. Emma loved watching the cook flip things around. She was very apprehensive and kept saying "all done" when there were flames at the grill. He was a very good and entertaining chef. It was a fun time together.
On the weekend of July 8th, we went to my parents house for a "just because" visit. We had a nice and easy drive there, then talked with the family for a bit. We went to Sterlings for dinner and had a great time. Except when Emma threw up right as we were walking into the restaurant. Still not sure why that happened, she was feeling just fine. The next morning we went to Leslie Grove park and Emma really enjoyed herself on the swings and going up and down the little slide. She loved walking up the stairs to the slide. She did fantastic walking with Dustin on the mound terrain in the playground. Then we fed the seagulls. After lunch, we went bowling. It took a while for Emma to warm up to the black light and flashing lights plus the noise, but she enjoyed it by the end. The next morning after church we left form home. A quick but pretty fun trip!
On July 14th, we drove up to Federal Way Seattle Children's to do her last x-ray from her broken leg. It's completely healed! You couldn't tell it was even broken. We also got sad news- Dr. White (the surgeon that operated on Emma's legs twice and her spinal fusion) is moving to Colorado to a hospital there in October. We are devastated. He is so good at what he does and knows these Campomelic Dysplasia kids very well. He has 2 other Campo kids (other than Emma) right now too. I'm not sure what to do. Campo kids have scoliosis and it can change for the worse VERY quickly. We were able to get a last minute visit with him in early October before he left so we can talk about how to transfer her care to someone else.
At the end of July, we decided to get away from our constant yardwork and do something fun. We went to Rialto beach to see the tide pools at the hole-in-the-wall hike. It was a long drive- over 3 hours! But wow, it's beautiful. It's a 1.5 mile walk on the beach to get to the tide pools. We planned it all around the low tide at 1 pm. The walk was a little difficult through sand and small pebbles, especially with Emma and all her things, but it was nice. A ton of people were there too, even though it was a Thursday! The rock formations and tidal pools with anemones and starfish were awesome. The iconic hole-in-the-wall rock was interesting, but a little overrated. Emma fell asleep for a lot of the hike, as usual in the hiking backpack.
The next weekend after that we went to Westport beach! Kevin has been fishing here a lot and Dustin has finally been able to come along. We decided on this trip only 2 days prior. We really debated on all 3 of us coming on the boat, but I'm glad we just decided to have Dustin go. The boat really jolts around in the ocean and they were out for around 6.5 hours. Emma and I had a fun time around Westport! We went on a couple of viewpoint walks, walked up and down the main street shops, had lunch at a fun restaurant, went to a tiny aquarium, then spent time at the beach. We drove to Half-moon Bay, and it was pretty empty. It was a nice warm day too. We laid in the shade tent for a while, then went on a walk on the waves. It was just very relaxing and fun to have a day just to Emma and I. She enjoyed herself too. We then met Dustin and Kevin pulling the boat into the dock. They only took home one fish. They caught a lot, but they all got away or were the wrong kind. Dustin was exhausted, but had fun with his dad. When Emma gets older, then we will all go.
On August 1st, we got a second dog! We decided to name him Baron. It sounded like a strong royal name for a bullmastiff/ English mastiff mix. Emma doesn't care about him too much, except she laughs when he gets disciplined. He really likes her though! Doesn't pass up a chance to give her a good lick.
In mid-August, we had our annual Krall family garage sale on Friday and Saturday. On the second day, Emma and I had to leave early because she got invited to her first non-family birthday party! It was for a girl in her primary class. The birthday party was fun. At first they had the kids decorate brown paper bags to hold their pinata candy. Emma did well with that. Then it was tag outside, then the pinata. Emma sat with me and watched for both. Opening presents and pizza she sat and watched too. This family has always been really thoughtful to try to include her, so they gave her a toy car and an apple sauce pouch instead of candy. She really loved the car. We left early as they were going to have cake. Taking her to this party was more difficult that I thought it would be on me. I cried on the drive back to the garage sale. I wish she could participate with the other kids. It's not fair that she can't run and play tag, hit a pinata, eat pizza and candy, and joke around with the other kids her age. She's 5 now, and I have to treat her body like a 2-year old. I think she had fun at the party, just mostly happy to get the car. I do know she was bored and uninterested a lot of the time. I got over it fast after Dustin comforted me, but things like this sting sometimes.
A couple days later, Emma had a hearing test, ear exam, and CT scan under anesthesia. Another routine procedure of handing her to the anesthesiologist, waiting in the surgery center, and meeting up with a cranky and tired Emma in the recovery room. Her ears looked good, just a ton of earwax. Her hearing test didn't show anything new- at least it's not getting worse. But we found out later more in the CT scan. Her hearing loss is 25% due to brain mis-firings (can't be fixed) and 75% due to her inner ear bones fused to the side wall of her ear, preventing it from vibrating. There is a simple surgery to fix that, and have only 25% of the hearing loss she has now. We agreed we want to do the surgery, but wait a couple of years. The bigger she is, the more successful it will be. In the mean time, she is still happy with her BAHA on the headband.
On Labor day weekend, we went camping with my family. After meeting up with my family, we caravanned to the spot we chose. It was where we got our Christmas tree last year. We took a while to set up camp and talked a lot while relaxing afterwards. Baron went from being a crazy dog to sleepy instantly and back again. Luna wanted to just play fetch the entire time. Emma just wanted to lay down and play with her toys. On Saturday morning, we had a good breakfast then went to the river to go gold panning. I taught my family how to pan and they loved it! After panning, we went on the small laser cave hike. Dustin and Emma stayed back at the campsite (we didn't bring the hiking backpack). It was a short hike and since I've been there before, not too different than last time. It was fun for my family too. After having a big lunch, we packed up and drove home. It was a good camping trip!
The following Monday after camping, we were invited to go on a boating trip with Kevin and Sophie, with Carly's family following in a motorized rowboat. Emma's never been on a boat like that before. She wasn't thrilled about the lifejacket or all the wind, but really liked being there. We drove from the Port of Olympia up the Puget Sound and stopped on an island by Tacoma to have lunch. It was a ton of fun! We saw a river or ocean otter playing with something while laying on its back, lots of herons, and some pacific porpoises- a type of dolphin. It was so much fun and we didn't even get sea sick! Well, that night I did get sick. That Monday I had a sore throat, chills, cough, and congestion. The next morning I did an at-home Covid test and sure enough I was positive. We had managed to avoid it for 2 years! I think I got it at primary on Sunday when I was there with Emma. The day after, Dustin and Emma were sick. Emma had a fever, lethargic, and needing LOTS of suctioning for about 4 days. We were able to get a steroid from Seattle Children's immediately that helped with her secretions. That helped her recover so much faster. It wasn't bad as we were expecting.
On September 16th, we went to the Washington state fair. As usual, it was a good fun time. Emma's favorite part was to see the fire truck and to get a coloring page. She carried it along with her the rest of our visit, pointing to the firetruck on the page and getting excited. She's such a goof. That night, Emma hit a small but significant milestone. She was able to walk with her gait trainer/ medical walker alone! We were pushing her with the attached push bar up until today. But she has learned not only to walk forward, but to propel herself and push the walker forward too. So proud of her!
On October 11th, Emma had a visit with Dr. White. He was leaving to another children's hospital in Colorado and this was his last day. Emma had a follow-up spine x-ray with him. As we drove up to the hospital parking lot, we saw Emma's picture on a banner on a lamp post! They told us they were going to do that, but we didn't know when. It was so exciting to see her up there! They told us the banners would be displayed for 1-2 years! Pretty neat. Her x-rays went well and looked good. We also said our good byes and gave him a picture frame with a cute doctor quote on it. What a sad departure.
A couple of days later we went to Lattin's Cider mill and picked pumpkins. Emma did a good job sitting among the pumpkins and taking pictures. She even wanted to keep one of the tiny decorative pumpkins too. That night we carved them. I carved Emma's pumpkin with a princess and unicorn. Emma's carving fell apart, so it went straight to the chickens. It was still fun!
On the 29th, was our ward's trunk-or-treat/ chili cook-off dinner party. We had fun dressing up- Emma as Snow White, Dustin as the Huntsman, and me as the Old Hag Queen. Dustin had a fun hat and feather while I had a fake nose and cloak, plus a basket of apples. The chili cookoff dinner was great! Lots of good food. Emma had fun with the trunk-or-treating too, by saying "thank you" over and over. She also loved holding the basket of candy, even though it was getting full and heavy. She didn't want me to hold her though, as I looked creepy to her. I don't blame her. It was a fun Halloween!
On November 2nd, Emma's health was acting a bit strange. She started having fevers of 100-101 degrees and her stomach was very bloated. When we vented her g-tube in her stomach, we would get out tons of air, constantly! We stopped her food at 12:30 pm to give her a break. Hours later and through the night she was still very gassy and her stomach was huge. We kept taking food out of her stomach, so nothing was being digested. We ended up giving her some Pedialyte at a very slow rate, but she still was so bloated. That night was rough. We got no sleep and it was the worst night in history. Emma's oxygen kept dropping too. We finally gave her some when she got to 93%. She also kept tossing and turning and needed lots of suctions. At 3 am our power went out because of a wind storm. Thank goodness our standby generator kicked on... for a bit. Two hours later the power went out again, but we noticed that everyone's power was back on. Dustin did some investigating and found out that our generator broke and surged out our power. We had to wait for our power to get turned on by PSE until noon. It got pretty cold in the room, even with our fireplace blazing. Dustin had our portable generator going to power Emma's equipment that we desperately needed with her being sick. That morning, we also noticed that we had a water leak coming from the ceiling exhaust fan in our bathroom. Dustin did some investigating and found out that it's coming from the old layers of roofing. We need to replace all our roofing now. It was pouring rain that morning, so he had to temporarily fix it with a tarp. When the power turned on at noon, we were still in the bedroom. I heard a pop and the cadet wall heater burst into flames. Dustin quickly turned off the breaker for the cadets. The power surge broke that too. It took hours to get rid of the smoky smell. That was terrifying. All this was happening in the dark while Emma was trying to sleep and being sick. At 2 pm, we had to finally take her into the ER at Seattle Children's. She was really struggling to breathe, even being on her sick vent settings and on 2 liters of oxygen. On the drive there, we got in a car accident. It was a 5-car chain reaction due to a flash flood from all the rain near Seattle. Thankfully, we were okay, and both our car and the car in front of us was unharmed. When we got to the ER, we went right to a room, even in front of a full waiting room. She got blood work and other tests and found out that she has RSV/ Covid/ Tracheitis infection. We immediately got transferred to the trach/ vent floor because the ICU was full. Because of the Covid restrictions, she got put into a negative-pressure room. The doctors then put her on elevated sick vent settings, but the same 2 liters of oxygen, and IV for meds, antibiotics, and steroids. She slept through everything. We didn't see her awake for an extended period of time for the next couple of days.
The next day we found out she was dehydrated. She hadn't peed in at least 24 hours. They started her on 24 hour fluids in her IV. She was also super anemic so they gave her an iron supplement. She was very low on her hemoglobin and hematocrits, but not sure why. They debated for a while, but decided she didn't need a blood transfusion. On the 6th, she was super swollen everywhere. You could see it in her face the most. It was from all the fluids she was getting. They went down on her rate and that seemed to help. They also lowered her oxygen to 1 liter instead of 2 and she held her stats the same. They also started a slow rate of food as well. This was encouraging.
The next two days were really rough. She was struggling so much, it broke my heart. She had a tough time breathing and her oxygen kept dropping. They had to increase her oxygen to 3 liters. She also had fevers again. These were terrible days as we were sliding backwards. I also got RSV/ Covid from her too! It was miserable. Coughing constantly, lots of junk in my lungs, runny and stuffy nose. I hardly slept at all. Dustin came up during the day from about 11 am- 6 pm most days. We were super surprised he didn't get sick, even with his weak immune system. Food was tough for him to provide, as I couldn't leave the room to heat up food or buy any from the cafeteria due to the Covid protocols. Ordering in was expensive, but at least I had a mini fridge in the room so I could store cold food Dustin made. Emma needed constant suctioning. She sounded terrible and was so lethargic those two days. Honestly, the thought of her not making it through this crossed through our minds. I tried to push it out immediately, but it was terrifying.
Finally, she showed improvements on November 9th. We felt the many prayers. They lowered her oxygen to 2 liters and was able to take out her IV because they finished with the antibiotics. They also had her try this air-vibrating chest vest to get the junk out of her lungs. This replaced the manual clapper cup that we were using. She didn't like it, but it seemed to help. The next day she was able to go down to 1 liter of oxygen! She still sounded super course with her breathing, but improving. The day after that they took her off of oxygen and down on her vent settings. The numbers are now the sick vent setting we came here with.
The following day the doctors changed her vent settings slightly again. They also got her weight. She was at 21 pounds- she lost 10% of her body weight. You could really tell as she was really skinny- it was very apparent in her upper arms and legs. Her diapers and pants don't fit well anymore. She also was able to sit at a highchair they provided for her for about 20 minutes at a time. She really tried to play and be her normal self, but was not felling well still. She was also very sleepy even though she wanted to keep sitting in the highchair. On the 13th, she was able to go down to her normal sleeping vent settings! After a couple of hours, they decided she passed and she could go home! As soon as we told her we were going home, she got a little more of her spark back.
The next few days we recovered at home. She was able to slowly wean off her vent during the day and breathe on her own. She also started clearing up her lungs better. We continued the CPT chest clapper and the albuterol inhaler every 4 hours (night and day) and that helped a ton. She slowly because more of herself every day. Playing and smiling, and more awake! She has no strength afterwards though. She lost a bunch of muscle mass and therapy was tough for a while. She will get through this.
On the 23rd, the Wednesday before Thanksgiving, my family came to visit. They got here in time for dinner and stayed the night. The next day was Thanksgiving. Emma had fun showing off what she knows, her toys, and playing with my mom. We spent a lot of time cooking and baking then had a wonderful Thanksgiving dinner. The next day we went to the Sunbirds store for Black Friday deals. We then we to Lewis & Clark State park and hiked 1.7 miles on the Trail of the Deer trail. It was raining the entire time, but we had fun! Emma was under the umbrella on the back of Dustin's hiking backpack. She just sat back and relaxed the entire time.
On December 3rd, we drove to Gifford Pinchot National Forest with Kevin and Sophie to cut down a Christmas tree. We went to our old tree spot from last year/ camping spot. It was really odd to see it full of snow this time. We walked around exploring for a while, but the four of us eventually found good, full trees. The next day we decorated it- we managed to string 7 light strings around it, so there were lights on each branch. It was beautiful! Emma thought it was funny when we were on the ladder and kept saying "lights". She also loved when we turned the lights on and off for the beginning and end of the day. We counted 3-2-1-Go! She loves her fun routines.
On December 6th, Emma had an Endocrine appointment to discuss her growth hormone shot. Her blood work showed that she needed a little more of a dose. She hasn't been growing the last couple of months and the doctor has noticed. We will continue the shot, but keep tabs on it every couple of months. One the way home, we went to the Giving Machine in the Belleview downtown park square (her appointment was in Belleview too). The Giving Machine is a part of the Light the World program the Church is doing. The machine is like a vending machine for different things under different charities. They released some a couple of years ago during each Christmastime, and this was the first time there was one in Washington. Just one! It was a nice park to walk around after her appointment too.
A couple of days later, we went to Coastal, a farm and garden store, to see reindeer in the parking lot and take a picture with Santa. It was a quick visit. Emma did well with Santa, but she said "mommy" after we took the picture for me to take her back. It was pretty funny. That weekend we did another fun Christmas activity- the Centralia Tractor parade! She loved it just as much as last time. So many smiles and "happy hands" with all of the Christmas lights. Our stake even had a tractor "float". They had a small choir singing Christmas hymns. It was a wonderful parade. The next day we baked and decorated a gingerbread house. Emma thought it was funny that it was a little house and kept signing "home" and laughing.
On Christmas even we spent all day watching Christmas movies, finishing a Charlie Brown Christmas puzzle (with Emma "helping" handing us pieces and laughing when we said "thank you"), and watching the "Joy to the World" movie. After we ate homemade pizza, we drove around to see Christmas lights. Emma LOVES the lights. The next morning was Christmas! After having a nice musical program at church, we had a bite to eat, then opened presents. Emma had such a fun time this year. She had huge grins and kept asking for more presents. Her favorite present was a bunch of books from the movie Cars. They had buttons of car sounds that she kept pressing over and over and giggling. They were from my VanGorkum grandparents and were so delighted that she loved them so much. Pretty cute to watch. It was a wonderful Christmas. Then we got to making food in the kitchen with Emma in her activity high chair. Our dinner at Kevin's was good, then Dustin put together this "presentation" with lots of scripture, songs and questions from the Book of Mormon about Christ's birth. It was really good and brought a good spirit into the home for Christmas. Then we opened presents as a family then desserts. It was a great time!
A couple of days later, we went bowling with Carly's family. I have never seen Emma so happy and hyper before. She absolutely loves bowling. She loves walking to the ramp, pushing the ball down, counting the pins left, the celebrating, and watching other bowl. It was so fun.
Well, that's a wrap for 2022! What a crazy year. Lots of set backs, big decisions, trials, but also a lot of fun and happiness with our ball of light- Emma!
