A New Year
It's 2021- a new year! Emma is continuing to progress, little by little. In the first week of January, Emma FINALLY decided to swallow again! Her drooling let up and she asked to eat in sign language. Her drooling was getting out of hand and suddenly, it just stopped. She wanted to eat purees and for that first week she ate about 2 oz. of food. From then on, she has been eating around 5-9 oz. a day! She still freaks out when there is any sort of solid in her mouth. She cries and claws at her mouth to get it out, then all eating stops that day. But we are working on it. I am just so grateful she is eating again! We think she was in pain when she swallowed after her cleft palate & tongue tie clip surgery in July, but after that she was just afraid to swallow. I'm so glad she got over that fear.
On January 15th, Emma got her new AFO's (foot and ankle orthotic shoes). She has an interest in putting more weight on her legs, so we got re-casted for new foot orthotics that are more flat, have grips on the bottom, and have a hinge & stop on the back so she can flex more when she walks. It has helped so much being able to have her feet flat on the ground. We knew she was a little more flexible than what we were giving her credit for!
A couple of weeks later, Emma had a growth hormone injection test. She had an IV placed and meds pushed through periodically over a 6 hour period. It was a long and exhausting day- physically and emotionally. Her blood sugars dropped pretty low and she was lethargic so she had some rescue apple juice through her g-tube. A couple of days later we found that she didn't do well on that kind of growth hormone. So now we need to go to plan B later.
In the middle of February, we got a huge snow storm and got 15 inches of snow! It was a ton of fun. Emma thought it was funny when the little snowflakes started falling at first. Then it dumped overnight. She wasn't a fan then as it was snowing pretty hard. She loved watching us play with Luna in it though. We made a life-sized snowman too. Emma liked touching the snowball we placed on her tray and thought the cold snow was silly.
Later that month, Dustin and I both got echocardiograms. We were told we should get one as Emma has one floppy valve in her heart, and we wanted to see if we had one too. Our hearts ended up being just fine. But it's always good to know if it was hereditary. Emma has just another one-of-a-kind medical diagnosis.
At the end of February, we went to Kalaloch beach. We had always wanted to visit the Tree of Life- a tree that its roots are suspended between a small waterfall on a beach in Washington. It won't stay up much longer with the water and wind eroding away the dirt around it, so we wanted to see it sooner than later. It was so beautiful! We also wanted to see the tidal pools, as the reef was at low tide, but we weren't able to find it. It was still a nice and relaxing walk together as a family on the beach. It was neat finding unique colored rocks and stones polished by the ocean. Emma was just snoozing in the hiking backpack the whole time, so she was happy.
Emma is making great strides! She has asked to drink water this week. So we let her drink a little water from a medicine cup. She is trying so hard to drink, but ends up getting drenched along with a couple of drops down her throat. She also is definitely a toddler. She will have those temper tantrums and very emotional moments. It's partly because she's a toddler, and part because of frustration with communication. Or because she doesn't get what she wants. Her cries and yells (more like grunt/ exclaiming) get pretty loud, even though they come through her trach only. I still don't know how she makes those noises.
On March 12th, we did something that I thought I wouldn't be able to do again- go skiing! Carly's family was going to White Pass to ski and invited us, Kevin & Sophie to go too. Dustin and Emma stayed back at the cars with Carly and Alayna. Kevin brought his motor home so they can keep warm. While most of us were skiing, Dustin and Emma also went sledding. They found a little hill and path to go on. Dustin was able to secure her high chair top to a sled. He also took her in his lap and sled with her too. They had a ton of fun! We were all very sore and tired when we got home.
April 4th was Easter! Emma had fun dying eggs by dunking them in a whisk in the colored cups. We then put the eggs around the living room and had her walk while we were holding her hands to get them. They were within reach and she had fun putting them in her basket. That night, we met at Kevin's with the family to have a nice Easter dinner. She had fun doing a family egg hunt in his back yard. She had a blast walking around and putting the plastic eggs in her basket.
On April 7th, Emma had her first growth hormone injection. She had to do a one week trial of it to see if would help. That evening, a nurse from the medicine company taught us how to use the injection pen and to administer the medicine. At the end of the demonstration, I had to show the nurse that we could do it and give Emma her first official shot. It was terrifying! I didn't want to stab her with a needle, but we had to do it. I was sweating bullets. Afterwards, Emma only cried for about 15 seconds. She is so tough. Ugh, that was rough. Dustin and I took turns injecting her every night for a week. At the end of the week she got her blood drawn. We found out that her body didn't respond to it. So now we will talk to the doctor to get a plan C.
A couple of days later, the Krall side of the family wanted to do a bike ride. We rode from Yelm to Rainier on the bike trail and were going to all get cookies at the small cookie shop off the bike path. As I was getting Emma's suction machine out of the bike trailer, it fell out and hit the ground, breaking off 2 pieces. It wasn't usable at all. As our adrenaline spiked, we immediately got back on our bikes and booked it. We have never pedaled that fast before and were really hurting. We had to get back to our car and then we still had a 15 minute drive home. We had no way to suction her and it was terrifying. During the ride, she needed a suction. Dustin had a brilliant idea. He rinsed out the suction tubing with our water bottle. He then went to suction, and instead of using the machine, I put the tube up to my mouth and sucked. Her secretions didn't even get close to my mouth, and it worked! Not very effective, but I am so grateful we found a way to suction manually! Everything ended up being okay, but wow, that was a scare.
On April 10th and 11th, Emma's grandparents (Rachael's parents) name to visit us! That Saturday we went to the Olympic Nation Forest to a short waterfall hike- Spoon Creek Falls. It was a fun hike, even though we have been there before. That evening, we took it easy at home. Emma had fun showing them all her signs she knew, showed off her standing, and counting. She had fun!
On April 15th, Emma had her sleep study. We drove to Overlake Hospital in Bellevue at the Seattle Children's clinic and arrived at 7 pm. Once the paperwork was complete, the sleep technician told us we could turn on the TV to distract her while he puts all the wires on her. They happened to have her favorite show- Baby Einstein! The process took about 45 minutes. She had on EKG leads, different sensors on her body, two elastic belt sensors, many leads/ wires all over her head with a net, and a super special HME (attachment on the end of trach) that detects multiple things with her breathing. She was crying a ton and Dustin had to hold her hands from ripping everything off. By the end, she was exhausted and ready for bed. There was one bed in the middle of the small room, no windows, and one bench. For most of the night, Dustin slept on the bench and I sept next to Emma. For the first two hours, she was on the HME only (no vent), so she would wake up, gasp, get angry, and started pulling on her wires. It happened about every 15 minutes. Two hours later, the tech came in and put a vent on her, but on a CPAP setting. He said he would tweak the settings periodically too. She slept better after that, but would still wake up needing to be suctioned or rolling over. She also was awake for an hour and a half randomly and wasn't sleepy. We think she was just uncomfortable in a new place and very unsure about sleeping. At 5:30 am, the tech woke us up to end the sleep study. Emma was relieved to get all the wires off. We were free to go home! We slept for a couple of hours when we got home, then we gave Emma a bath. It took forever to get the sticky goop out of her hair. A couple of weeks later we found out the results- she has sleep apnea, like we were thinking. She was approved to go down on her vent settings and change to more of a CPAP instead of a pressure support setting on her vent, so that's great news! She can't go off the vent while sleeping yet, but she's making progress.
About a week later, we went to the Tacoma Zoo again with Carly's family. As usual, Emma LOVED the aquarium portion of the zoo. The seals were also fun for her, as they kept swimming up to the glass then quickly turning and swimming away. She giggled at the silly seals.
Later that month, we were able to pick up a used gait trainer (a medical walker) for Emma. Over a Facebook group, I was able to find someone giving away a gait trainer that they weren't using anymore. We took it to her physical therapy appointment to have her fitted in it. Now she can walk with it! We are excited to use it while her insurance-supplied one gets here (in about 3 months). That's why we couldn't pass up on this opportunity!
Starting May 2nd, Emma began to have seasonal allergies. She didn't sleep at all for 2 nights because she was up coughing and sneezing. It was very watery suctioning her and wiping her nose. Her oxygen and breathing were fine. Her pulmonologist also suggested seasonal allergies as well. Once we put her on Allegra during the day (and Benadryl at night when she needs it) she felt much better. I am so grateful for medications like this!
On the 3rd, Emma had her orthopedics appointment at Seattle Children's. We made this appointment because we noticed one leg was longer than the other when she stood, and anticipated the doctor to put a small lift in one of her AFO's. We got x-rays of her feet and legs, then met with the doctor. We are actually going to do a surgery instead. Dr. White saw that her ankle bones needed to be brought down and re-structured and her Achilles tendons to be lengthened. We thought this was coming sometime in the future, but not this soon! It was actually good timing as she loves to stand and starting to walk now. She will need to be in casts for 6 weeks then get new AFO's. We scheduled the surgery in August, so we still have some time.
Two days later, we went up to Seattle Children's again. This time it was for her routine behavioral hearing test. She looked at the designated toys when they made noise, with her BAHA (hearing device) off, even though the noises were loud. We found out that the minimum she can hear on her own went down from an average of 80 decibels to 75. She's hearing a little more! The audiologist suspected it was because her ear canals are opening up more as she is growing. Her ear drums are still underdeveloped, but I am glad she's improving!
A couple of weeks later, Emma demonstrated a new sign that made me a little emotional (she makes me a softy!). She was playing with a stacking toy and one of the pieces fell off and went out of her reach. She got frustrated, then signed "please". So far, pretty common for her. When I handed the toy back to her, she said "thank you" in sign language! She's never said it before, and she said it in the right context too! I am so proud of her! The next day, Dustin took Emma out by himself. We have never driven alone with her; there is always someone in the back seat with her. He drove 15 minutes to her cousin's baseball game. They did great! She also enjoyed watching the game too.
At the end of May, we all went to watch Clark play in his baseball game. It was a really good experience for Emma. There were siblings of players next to us and Carly's family and they were interacting with Emma. They had fun mimicking signs and telling her she was cute. Emma doesn't get to be around other kids often, so I'm glad she could! She also loved watching the game. She sat on a blanket in front of the chain link fence watching for a good 45 minutes. Sitting by herself, no assistance! When she is captivated and wants to sit, she can do it.
Oh the week of June 7th, it was our Idaho trip! We started off the trip going up to Seattle for Emma's Endocrinology appointment. We decided to try one more growth hormone type. Since she is IGF-1 deficient, this hormone will help her with that. IGF-1 takes the actual growth hormone in her pituitary gland and applies it to the rest of her body. That is why she is so small. But with this hormone, it's a 2x a day injection (similar to insulin). It's really expensive and pretty rare, so it's taken a while for insurance to get it. So far, we haven't started it, but soon.
After that appointment, we started our trip! Our first stop was my parents house for that night. It was good to see them. That next morning, we spent the day driving to Burley, Idaho to my grandma Kloepfer's home. We took our time and Emma did great! After an hour at my grandmas and Emma cruising around her ottoman a dozen times, we went out to eat at a nice restaurant. We met a couple of my uncles and aunts there. It was so good to catch up with them.
The next day we left for Rigby to visit Dustin's grandparents. We took our time getting there again and had a nice meal with them. They have a huge grandfather clock that Frank built that Emma loved. She liked the numbers on it, and especially when it chimed. She scooted towards it many times.
We stayed the night at their house and the next day was filled with fun touristy things. First, we went to the Idaho Falls Zoo. Emma had fun listening to the kookaburras and looking at the penguins at her height through the glass. It's always a neat little zoo. We then went to BYU-Idaho, drove around, and walked on campus, went to the bookstore, and the greenhouses. We then stopped by the fun cookie shop there. The last stop was the Rexburg carousel. It was Emma's first time riding one! I held her on while we went around a couple of times. She liked how she knew it was a horse and that she was moving.
After spending another night at Franks & Veeann's, we woke up the next morning to go gold panning. We took grandpa Frank with us and he showed us around Kilgore, Idaho. It is an area known for gold. We tried two spots on the river and didn't find anything. Oh well, we still had fun! Frank liked napping in a lawn chair by the river, Emma was happy playing with toys, and we got to relax with panning. Even though I fell in the mud, it was still pretty fun. On the way back, we drove past the Anthony Sand Dunes. I forget how neat that looks. Since it was after lunch, we stopped at a place to get burgers and ate our meal at the park. It was such a nice day. Emma also had fun on the swings too.
The next day we visited the Perry gravesite in Rigby- one of Dustin's relatives. He was an original immigrant from Ellis Island. We then stopped at the Idaho Potato museum in Blackfoot. It was actually pretty neat. We weren't expecting much, but they had a ton of stuff! Lot's of equipment, trivia, antiques, fun games, singing video potato sacks, and even the word's largest potato crisp. They even had a potato café where we tried huckleberry flavored potato ice cream. It was actually very yummy! Surprising, I know! We then got back to Burley and ate dinner with my grandma. I am so glad I got to spend a lot of time with her on this trip. Later that evening, I met up with my cousins for the first time in about 6 years! It was so good to see them. We talked a ton and took lots of pictures.
The next morning, we woke up early and drove home. It was tough on all of us. It was hot and the air conditioning wasn't getting to Emma in her rear-facing car seat, so Dustin had the brilliant idea of putting flexible ducting to the air vent and dropping the other end over Emma. It was great! She's such a sweaty kid so that helped a ton. Our Idaho trip was fun and tiring, but worth it!
A week later was Emma's 4th birthday! I can't believe we have a 4 year old. We had a party for the family and the Idaho family was on video call. It was a Minnie Mouse themed party. We made a number 4 cake decorated like Minnie Mouse. It was a fun party, even though Emma was grumpy at the end of it. She wasn't interested in opening presents but she did enjoy everyone singing "Happy Birthday" to her. That day was also Father's day! So we had a good day for Dustin as well.
Now to Independence Day! That evening we went to see the fireworks. We parked at the same medical clinic in Centralia to see the Borst Park Fireworks. We got there way too early, but got to watch private fireworks all around us. The park fireworks didn't start on time and Emma was starting to get sleepy. The show was good, but very short this year. It was a great way to celebrate!
In July, we used Emma's gift card she got from her birthday to go to Debby Doolittle's Exotic Petting Zoo. It was up in Tacoma and they bussed you to the edge of the city at a farm 10 minutes away. It was pretty fun! We got to feed lettuce and grapes to wallabies, kangaroos, capybaras, and other different animals. It was neat to be up close and personal to them. The wallabies were very soft. The kangaroos are nocturnal, so they were walking around with sleepy half-lidded eyes. They also had other animals to feed like camels, Asian miniature cows, otters, and other farm animals. Emma wasn't super interested in all of those, but she did like the pig. Mostly because she could identify it with her ASL.
A couple weeks later, we went to see the Tenino Oregon Trail days. We had a ton of fun! We toured the tents & booths of pioneer activities and watched (and kind of participated in) candle making, blacksmithing, log cutting, sandstone carving, and more. We then went to the parade last. It was an hour long and really good! Emma enjoyed the T90 Motorcycle group doing circles and drills the most.
On July 19th, it was Emma's Pre-Op for her feet surgery. We came in thinking we were just going to clip her Achilles and move her heels down. But Dr. White said he thought about it more and wanted to fix her bowed tibias. He would cut through her leg bones in a triangle shape and put steel rods next to it to keep them straight. She would still be in casts for 6 weeks. But the hard part was that he needed to make the casts mid-thigh, bend her knees, and not bear any weight on them. It will be so rough. We agreed, as we knew this was the right thing to do We weren't sure if we were going to fix her bones in the future, but I guess here we are! Might as well get it over with. Then she has no surgeries planned or future possibilities at all! The next day Emma FINALLY got her insurance-supplied gait trainer. Very ironic timing as she can't walk soon. It took them a couple of months and it was a little too late. Well, at least she has a perfectly fitted one for when she gets her casts off.
I wanted to describe all of Emma's favorite things at the moment, well, because she is a character! Favorite colors- yellow and orange, then green third. Favorite numbers- 10 and 5 (she likes 1 too). Favorite animals- horse and dog. Favorite shape- circle all the way! She LOVES anything circle shaped. Favorite toys- car, balls, sign language ABC's flashcards, anything numbers or letters. Favorite activity- spinning around! Favorite letter- Z (with enthusiasm!) then C and A. Favorite foods- yogurt and ice cream (after it melts and she realizes it's not a solid). Favorite signs- "daddy" and "all done". Favorite TV shows- Baby Einstein and Blippi. I can't think of anymore at the moment. But I love how her personality is shaping- she's pretty silly!
August 4th came up fast. It was Emma's big leg surgery! Our check in time was at 7 am, so we had to wake up at 4 am to get there in time. I'm glad she was the first case of the day- no delays! As expected, she freaked out every time someone even touched her. We savored playing with her feet and her standing up. When it was time to take her back to the OR, Dustin was able to do that still. It was about a 4 hour surgery from when they put her to sleep until the doctor talked with us. He said all went well! In fact, he was pretty proud of how well he did. It felt like eternity until we could see her again. I was able to go back to the recovery room/ hall. She looked comfy for about 15 minutes, then angry, pulling at her IV's, pulse/ox, and blood pressure cuff. She was pretty difficult to console, especially since I didn't want to pick her up just yet. They told me that once someone discharges on the floor, we can get a room. We waited and waited...for 4 hours! One of the longest a patient has ever spent in the recovery room. I felt bad for Dustin, he couldn't see her for a long time. Finally we got word that a room was ready! Only 20 minutes after we got into the room, Emma fell asleep. She wasn't comfortable and hardly slept at all in the last 4 hours. She was asleep from about 4:30 pm that day until 10 am the next day. She hardly moved when they did blood pressures and checks. She just laid on her stomach asleep. I still had her "ears" on because I wanted her to hear us if she woke up but I wanted her to get her much needed sleep. That was a mistake. When she woke up, she had 2 pressure sores! I felt terrible. That day, she went back and forth between sleeping and awake, gradually more alert and wanting to play with toys. We took her off her vent and took out one IV. She still pulled and got angry at the other IV. Slowly, we started Pedialyte and then a slow rate for her food. She didn't show ANY signs of pain! Around 5 pm, the doctors told us that if she seems okay, then we can take her home. We decided to wait about an hour, so we can eat and let the rush hour traffic die down. We got home at 9 pm that night, all exhausted. Now, she is doing amazing! She is scooting around and kicking as usual, even with the heavy casts. We are very careful with her casts, as her last ones slipped off. So far so good! The doctor put her in a squat position so they won't fall. That first full day home, Emma asked to stand. She then rolled on her belly and tried to get into crawling position herself to stand. She kept pointing to the coffee table and signing "stand", then crying. It broke my heart. I cried as she cried. It was so hard to tell her "no, not yet". After so many months on working to stand and walk, I hated to tell her no. She really loved standing. Thankfully, she only asked a couple of times that first week. She caught on fast. I don't think I could endure that more. But she really is doing fantastic. Back to her own spunky and happy self!
In mid-August, we went to the SW Washington Fair in Centralia. We had a blast! We walked a ton, ate good food, and saw lots of animals and booths. Emma LOVED seeing the horses. One horse was walking with its owner in a grassy area, so we stopped and watched it for a while. They then came up to Emma and asked if she wanted to meet the horse. Emma was so excited, saying "horse" in ASL, pointing and clapping. The horse was just as interested in Emma, especially her casts. As the horse leaned over to sniff her casts, Emma thought that was hilarious! Lots of belly laughs! She also loved when it tossed its mane. That was a special moment for her. In one of the booths, a man drawing cartoons for kids wanted to draw one for Emma- and it was a horse! Pretty fun visit.
On August 23rd, Emma had her Trach Safe. A yearly procedure with ENT that monitors her emergency airway responsiveness and they scope (put a camera) in her airway/ trach. Her trach area looked fantastic! The doctor found out that there is a narrowing or collapsing between her trach and vocal cords. This means that we shouldn't expect her to talk or vocalize anytime soon. This was tough to hear. We desperately want to hear her talk. The doctor told us that the safest and most effective option was to just wait for her to grow. We need to have more patience again. Also during the procedure, since she was under anesthesia already, he took out her ear pit. Emma had this little hole just above her right ear. It needed draining often and was painful for her. Essentially it was a pocket that could get infected. So, we had it removed! Now she just has a little scar instead.
That night was busy packing. The next day we got up at 4 am (again!) for our (second)! yearly Idaho trip! This one wasn't planned in advance like the first one was. The first day (August 24th) we drove to my parents first. My mom had a quick hour before her piano lessons that we could stop and say hi. The drive there was SO smoky. There was a big fire by Naches and the smoke enveloped all of eastern Washington. It was a good, but quick visit. We then went on to Burley. We stopped by Grandma Kloepfer's house. Emma laid down with her in her bed for a bit and we talked for about 45 minutes. At that point my grandma was tired so we said our goodbyes. After our visit with my grandma, we drove to my uncle Carl & aunt Nadine's house, where they let us stay the night. We stayed up late talking and eating ice cream.
That next morning, my aunt Nadine made us a wonderful breakfast and Emma loved sitting up at the table with us. Then we were headed south to Salt Lake City, to celebrate our 10th wedding anniversary, with Emma in tow! When we got there, we went straight to see the temple under construction. We also walked around the rest of Temple Square, the Church History Museum, the Pioneer Cemetery, the outdoor mall, and then for the Cheesecake Factory for our anniversary dinner. Emma had a blast out at the restaurant. playing with a straw in the drink.
After checking out of our hotel the next morning, we went to the Hogle Zoo. It was a fun trip for Emma! She absolutely LOVED riding the train around the zoo. She also liked the water feature play area and laughed at the otters flip-flopping around in the water. After the zoo, we went to visit my cousin and her family at her apartment. Emma liked playing with her boys and swinging in their backyard swing set. They also took us out for ice cream too. When they had to go, we left and finished the last leg of our trip to Rigby. We met Dustin's grandparents and spent the night there.
Then on the 27th, we went to the East Idaho Aquarium with Carly's family. That was awesome. Emma enjoyed sitting with her cousin Alayna in the shark cove. She warmed up to feeding the parakeets after a while. Her favorite part was feeding lettuce to the iguanas. They were slow (suspenseful maybe?) and it was pretty funny to her when they took the lettuce out of her hand with their tongue. She loved us getting her a toy 4-wheeler at the gift shop afterwards too. Then we went to Rexburg to see BYU-Idaho. It's always fun to go back. We then stopped at all the little shops in Rexburg that we had wanted to, plus the carousel. Emma really likes riding it too! The rest of the day was spent at a lake in Rigby with the entire Krall side of the family.
The next day was Grandpa Frank's 90th birthday party! (The main reason for doing a second Idaho trip this year). We had a wonderful meal, a tribute to grandpa, gifts, and socializing. Emma had fun playing on the blanket on the grass with all of the cousins. The next day was a LONG drive home. But we did it! Emma did fantastic, just with a lot of breaks!
At the beginning of September, we were invited to go see Clark and Alayna race 4-wheelers in a race tournament. It was a long day event at the race track. It was exciting to see them get high ranks! It got pretty loud, so we turned off Emma's "ears", then she fell asleep!
On September 9th, Emma was able to get her casts off! Exactly 5 weeks after her surgery, and the doctor said that was okay. We were very excited! She wasn't happy taking them off though. For about 3 weeks, her legs and feet were pretty sensitive to touch. Her legs were pretty dry and flakey. When we measured her, she gained 3/4" from her leg surgery! She is now at 29" long. But the biggest change was her knees. Since she was in one position for so long, it was very painful for her to bend her knees. We had to stretch her legs out and her feet as well. To this day (as I write this), she still screams in pain. Someone has to pin her arms down so she doesn't tear at her face. That first night of stretching her I cried. It was so rough putting her through this much pain, even though I know it's going to help her. About 5 days later, we gave her a Priesthood blessing. We also took her to an emergency clinic visit to the surgeon. He took x-rays and said that there isn't a problem, she just needs time to heal. It might take months, but keep going. Thankfully there is nothing wrong. We actually packed an overnight bag in case she had to get a sedated MRI. Another patience-learning trial.
On September 21st, Emma started her IGF-1 growth hormone. It is a twice-a-day shot meant to boost her IGF-1 levels. We did her bloodwork and found out that that her levels are normal now! Now it is a waiting game to see if it will help her grow faster or not. She already knows what is happening when we wipe her with the alcohol wipe. We alternate who gives the shot and who holds her down. She has very little fat to inject it into and she wiggles a ton. We hate it and she cries until it's done. I'm hoping this helps!
That weekend we went to our first homeschool Co-op with the LDS Olympia group. It was a huge turnout at the Lacey stake center gazebo where we had a neat presentation by The Reptile Man from Monroe, WA. He showed us snakes, lizards, turtles, and an alligator. It was pretty awesome! After we had the year kick-off potluck. Emma was pretty tired and overwhelmed near the end. But I'm glad we have a homeschool group to do things with!
On the 30th, Emma had an orthotic appointment to get her AFO's! We were very excited because we are hoping it will give her the confidence to stand again. Since then, she hasn't wanted to stand, but we are having her stand a little each day for therapy. It is really tough on her, as she lost a ton of strength, plus she doesn't want to stretch out her right leg. We need her to put pressure on that knee. In time, it will come.
A day later, Emma had a Pulmonary follow-up at Seattle Children's. We found out that the vent weans we did a couple of months ago to CPAP with Apria wasn't actually a vent change. Apria misunderstood the orders. The RT at SCH corrected the vent and ordered Apria to actually come to our home this time (since they just called me and told me to make the changes). Since them Emma has been on the "weaning" setting (not yet the full CPAP mode yet) and has done great! It makes me a little nervous, because it's when we are all asleep. So I have her wear her pulse/ox for a couple of hours at the beginning of the night. I have to put it on her foot when she is asleep so she doesn't yank at it.
On October 9th, we went to the end of Waddell Creek where we usually go gold panning. We brought Carly's family with us so we could both get family pictures with the beautiful fall leaves. We actually got good smiley pictures of Emma on this amazing picturesque bridge. I messed up though.... On the long hike back there, Emma needed a suction. It was then that I realized I never grabbed the suction machine from the truck! Dustin ran all the way back to get it.. Emma's suction had gotten really bad, so Michael put her in the hiking backpack and we both jogged to meet Dustin on the trail. Thankfully, Emma was okay. After our pictures, we hiked to our panning spot through the woods where I showed Michael and Clark how to pan. We found fools gold, but we still had fun!
On October 15th, we had a fun weekend planned. We drove down the Oregon coast and spent the weekend with my Vangorkum grandparents. We first stopped at Seaside and walked along the beach. It wasn't as cold as we thought it might be. We then went to the small aquarium there. It was full of ocean fish and sea life from the area. The best part was the seal area. You could throw them little fish! Emma thought it was funny when the seals slapped at the water and bellowed to get the most attention for the fish. We then drove down to Rockaway beach where we walked along the beach and ate at Grumpy's café. After driving through the beautiful autumn-filled coast line, we went to see Munson Creek Falls. It was a short 1/2 mile hike to the tallest waterfall in Oregon (taller than Multnomah Falls!) It wasn't the full hike as it was blocked off due to storm damage, but it was sure beautiful! Especially with all the fall colors surrounding it. Then we made our way to Salem/ Keizer. It was so good to see my grandparents again! When my grandpa laid down next to Emma on the floor, Emma did this little dance with her legs. She loved having some one-on-one time with her great-grandpa. For dinner, we propped Emma up in her recliner in one of the dining room chairs. That worked for about 10 minutes until she leaned too far to the side and fell off. Her head hit the tile floor pretty hard. For the rest of the trip she was a little more tired and clingy, and scared at times. She was just a little off. We were worried about her head (with her past small brain damage from being a preemie) but at least her eyes didn't do the crazy direction thing it did previously when she hit her head. The next day we had a nice and relaxing morning with my grandparents. We then went to the playground and Emma loved the swings! She even held onto the monkey bars all by herself for a few seconds. After a long walk around the park trails, we all went to Applebee's. It was funny seeing how many people my grandparents knew and how they knew all about Emma. They all wanted to meet her! The same thing happened the next morning when we went to church with them. Emma's journey has touched more lives than we will ever know.
A week later, Emma had an Orthopedics appointment at Seattle Children's. This wasn't an ordinary visit. We had been contacted by the Hospital's PR media person to do an article follow-up on Emma. We thought that would be fun and agreed! When we arrived to the waiting room, a photographer was waiting for us. He took a ton of pictures of Emma. Then when we went into the room, more pictures. We talked about her past surgery and how well Emma is doing. Then the PR staff brought Emma and the doctor a princess bag of stuff. Dr. White gave a princess gift to Emma too! Dr. White was the surgeon who did Emma's halo and spinal fusion. He also participated in the princess party at the hospital with Rapunzel. So it was a tender moment when Dr. White put on a tiara with Emma again after another big surgery. And again, lots of pictures. We even got pictures taken as we were walking out of the hospital. The PR person also called me and interviewed me for the article too. The article was amazing! Here is a link: (click here). We were pretty humbled that they would do so much for us and especially Emma!
A couple of days later we went on a walk around Tumwater Falls. It was the peak of the autumn colors and it was absolutely breathtaking! Combined with the waterfall, river, and the bright sun, it was an enjoyable evening. A huge leaf blew on top of Emma's face, and she just left it there and laughed. What a goof!
On October 28th, I had a presentation for the BYU Genetic Club online. One of the students was a relative of someone in my parents ward and she knew of Emma. So she called me and asked if I could present about Emma, everything genetic related to her condition, and how we utilized the genetic counselor. I was very nervous! The presentation went well! It was actually pretty easy to talk all about Emma! Even though there wasn't too many students on the video call, it was pretty neat.
Two days later, we got all dressed in our Halloween costumes! Emma was the Statue of Liberty, I was Rosie the Riveter, and Dustin was Uncle Sam. It was a neat patriotic-themed family costume. First we went to the Chehalis Trunk-or-Treat at the Veteran's Memorial Museum. It was huge! Lots of antique cars handing out candy, as well as booths and decorated cars. So many people and so much candy (still all for us- sorry Emma!). We actually quit about 3/4 the way through as we had lots of candy already and Emma was just done with it all. She loved this little bouncy ball she got! We then drove to Kevin's Ward trunk-or-treat. It was a combined ward one, plus many people have moved out since we went there so we just visited a couple of families. They loved seeing our costumes and Emma of course! The next day was actually Halloween. We did dress up and drove to visit 3 families of people that we haven't seen in a while. That night we measured Emma since she started her IGF-1 growth hormone shots. She grew 1" in one month! She is now 30" tall! I hope the good growth continues. We will just have to wait and see.
On November 2nd, we got the doctor's orders for the updated CPAP vent settings. Turns out the ones we got from Apria (our equipment supplier) was completely wrong and wasn't really a change from the previous after all. These next settings had 3 presets- one: the setting that she is used to, two: is a step lower (the lowest on her usual pressure support setting), and three: a true CPAP setting. We spent a couple of days on preset 2 and Emma did fantastic. We had to sneak the pulse/ ox on her foot when she was sleeping so she wouldn't constantly be tearing it off. We then went to the true CPAP setting. It was so strange, as it sounded completely different to us when she was breathing. Instead of hearing her individual breaths, all we heard was one continual flow of air. I didn't like it at all, because I listen to her breathing on the vent at night, and my brain wakes me up when her breathing changes (moving around, needed suctioning, etc.). This new setting lasted for 3 days. Emma kept waking up and the "sleep apnea" alarm kept going off, along with the "no breath for 15 seconds" alarm. Once or twice a night her pulse/ ox would jump from 98% to 85% for a second or two, alarm, and jump back up. Plus, we got NO sleep for 3 days. We were done with it. We let the doctor know, and she said that Emma just isn't ready yet. At least she graduated to the 2nd preset! I'm pretty proud of her for that. We can work on CPAP later.
The next week we went into Emma's primary care doctor to get her last set of MRSA swabs. For some background, a couple of years also Emma tested positive for MRSA and now she is flagged for it still, even though she has never had an infection. Her body is just colonized with it. Seattle Children's had to do a full gown, gloves (sometimes double), and face shield on top of the now regular mask. It was ridiculous. They required Emma to be negative on 3 sets of tests, each 2 weeks apart. Each test had 3 swabs- trach, nose, and armpit. But finally, on November 8th, Emma's third set came back negative! Yea! It was a ton of work and appointments, but we finally can get rid of that annoying flag on her chart at the hospital.
Two days later, Emma woke up and got her spark to stand again!! She asked to stand (multiple times that day) for the first time since her surgery and getting her casts off 2 months ago. Her fire came back! Since then, we have been able to do therapy with standing, plus she has mastered rolling to get up to standing from laying down. She is cruising along furniture again and using her gait trainer. She still can't extend her right leg all the way out but we haven't stretched her legs fully in a while. We are thinking it hurts her knees and we will just need to wait. She is also not as strong; her endurance with standing and walking is less, but we were expecting that. I am so happy she got her desire to stand and walk again! And overnight too! Very typical for Emma with her own timeline.
On the 14th was the Primary Program at church. I got to play the piano accompaniment for it (like before the Pandemic) so it was fun for me. And Emma participated in her first program! We were able to choose what we wanted her to say. We learned a couple of new words, but she knew most of them. We practiced the part in sign language for 2 weeks until she was just about tired of it. We were pretty nervous for her to sign it in front of the church congregation as she has been shy about it recently. Dustin held her while I told her what to say and sign. She signed "Jesus loves everyone. I can show my love by helping Mommy and Daddy more." She did great! Many of the ward members told me afterwards that there wasn't a dry eye in the room. They are so proud of her too and how far she has come. I am very touched and grateful for the members of our ward and how much they love her. Emma has been going to primary for a couple of months now. I will sit with her in her class and Dustin will be with her in singing time while I play the piano. Everyone has been so kind and thoughtful of her the entire time. The kids stared at her for the first few weeks and now they consider her just to be part of their class. They think nothing of the loud suction machine now too. It's been a wonderful experience so far.
In mid-November, we went on a hike to Porter Creek Falls. The hike itself was really steep and difficult at first, while going through a dark forest. Then it flattened out and followed the river to a neat intersection of 2 rivers and a waterfall. It was beautiful and Emma enjoyed the ride in the hiking backpack. I hope she didn't get too cold! A couple of days later we had a wonderful Thanksgiving weekend with my family in the Tri-Cities.
On November 27th, we went to the Gifford Pinchot National Forest and got a Christmas tree! It was only a $5 permit to cut one down. We drove to a road off the entrance and trampled through the woods a bit and found the perfect Christmas tree. It was off from the others by itself and the sun rays were hitting it perfectly. It was full and the perfect height that we needed. Emma was little confused about why there was a tree in the truck.
A couple of days later we had a video visit for Emma's Otolaryngology appointment. We talked about how the doctor thinks we should do an airway surgery. We only took a day to decide, but we thought it was a good idea. Emma has a flap of random cartilage blocking her upper airway (between her trach tube and voice box). It is blocking the air from coming up and around her trach and letting her talk. He would take a laser and burn off the extra cartilage. There really is no downside to the surgery, just it may or may not help her talk. It's worth it to us to try! We will see when we can schedule it.
At the beginning of December, Emma had two falls in one day. Both when she was sitting and lost her balance. Later that night and half into the next day, Emma had her eye thing again, where her eyes go in slightly different directions and she has a mild headache. We think when this happens, she had a very small concussion. We really do our best to make sure that falls don't happen, but sometimes it does. I guess she needs to learn too, as hard as it is.
A couple of days later we did some fun Christmas activities. We all made sugar cookies together. Emma loved counting the amounts of cups and ingredients used, pressing in the shapes with a cookie cutter, and watched us frost and identified the colors. We then went to see Santa at Hillside Farms- a venue place in Tenino that had a free Santa and photography area. It was so beautiful. Emma was a good sport with Santa too. Around the same time, we had a couple of nights where we drove around to see the Christmas lights. We took the truck so Emma was higher up and could see better out the window. She loved it! I cherish these fun traditions.
In mid-December, Emma started a journey on her next milestone. I have felt for a little while that she is ready for toilet training. We bought her a little toilet and jumped right into the training. Emma tells me when she is or has pooped in her diaper, so when I tell it's about to happen I quickly put her on her toilet. And she did it! She's made it about half a dozen times now. We give her tons of praise and she's happy then, but gets really upset when we put her on her toilet. I think she just needs more time to get used to it. We are doing the signs for "poop", "toilet/ bathroom", and sometimes "pee" as well. We will continue to work on it, but for now I am proud of her for making it this far!
Now to Christmas Eve! We had a nice a quiet evening at home, then we did a video call with my family. It was Dustin's neat idea and to read Luke 2 together. It was a great experience and I hope it becomes a tradition if we aren't all together for Christmas. Christmas morning was a good one. Best Christmas with Emma yet! She was a good sport opening her presents and actually wanted to play with them! Usually she gets overwhelmed and scared of new things and the new toys, but this time she was exited! Emma's main gifts were a doll house and a basketball hoop. It was a fun morning. Plus, we woke up to snow! It was just a dusting, but amazing to have a white Christmas. That evening, we went over to Keven's along with Carly's family. A Packer's game was on- and they won! A nice gift to Dustin (and Emma, since she loves the Packers tons too). After a nice Christmas dinner we opened gifts. As we took our turns with the gifts, it started to snow very hard and thick. For the next 7 days, it came down hard. Church was canceled and not many people couple leave their houses. It would melt slightly during the day and freeze at night, then snow some more, making some slick layers. Even though we were home bound, we had fun! A couple of days of playing out in the snow, playing with Luna, snowball fights, and making snowmen. Emma liked it when it wasn't snowing on her. In total, we got about 10" of snow- pretty crazy winter!
