The day of Emma's cleft palate surgery has come- June 23rd. We got all packed up and out the door. Right before turning on the highway, I get a call from the hospital- they have to reschedule! They forgot the schedule the spinal cord monitoring team to be there, and the surgeon felt that it wasn't safe to move forward. I agreed with him, but it was devastating. A couple of days later we found out it was going to be July 8th now. Thank goodness it wasn't delayed too much. After getting that call, we returned home and relaxed. But not for long! Carly's family, Kevin, and Sophie wanted to take us and Luna out on Munn lake. It was a fun evening! We went out on the rowboat to the middle of the lake, then I swam back. It was more tiring than I thought! Then we had Emma "swim" for the first time on a floaty. She HATED it for a while, but as I stayed close and walked with her around on the shore, she relaxed. It was also a big deal for her as it was her first time in a swimming suite! And of course she peed on me multiple times that night while holding her. It was a fun day, and a good alternate to surgery! 

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Three days later, all of us went to Doseywallups to go clamming. As we were walking into the shore, we saw a herd of elk, not too far away. It didn't take too long for them (the family) to dig to find the clams. Emma was in the hiking backpack and wasn't super happy about it, but tolerated it- it was windy. Then we went to the nearby park and Kevin cooked the clams, and everyone had a picnic lunch. We had fun watching Luna swim in the nearby river. Love summers like these. 

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Now to Independence day! For breakfast, we had red, white, and blue waffles (strawberries, blueberries, and whipped cream). We also made colored rice krispy treats. Then we went to Centralia at 9:30 pm for Emma's first time fireworks! Since the Covid, the Centralia City fireworks was at the park, but the park was closed. They wanted everyone to park elsewhere in the city. We found a great spot in a doctor's office parking lot, across the river next to the park. Also because of Covid, everyone was buying Indian fireworks, as big shows were cancelled. So big fireworks were EVERYWHERE. In the country, in the city, as we were driving, and sitting in the back of the truck bed waiting for the official show to start. It was an amazing firework display everywhere. We were a little nervous on how Emma would react, but she loved it! She would smile when we said "oooh" in anticipation when it shot up but not yet exploded, then the big booms made her laugh. She kept looking all around her at all the booms everywhere. After the official show (and an hour later of total fireworks), she got very tired and done with them. We are so glad she had fun!

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In the last couple of weeks, she has learned some new things! She is starting to point at things every now and then when she wants something (instead of an open hand). She also surprised us by saying the "book" sign. She would be on the couch with us, sign "book" and reach for the books on the side table. She also had us amazed this week (twice) by scooting down the hall to the bedrooms (which she never does), reaching towards her bedroom door and pushing it open. She then scooted all the way to her bookshelf and grabbed books off it and gave it to us. We sometimes underestimate how smart she is. I am so happy she loves to read! She is really specific on the kinds of books too.

 

Yet another big step in Emma's life- her cleft palate surgery. We are so grateful it will happen soon. We were also able to do a trach aspirate (secretion sample) instead of a nose swab. It was easy to get, and we just had to drop it off at the Hospital's Federal Way location two days prior. The big day was July 8th, and we got there at our check-in time at 11 am. Emma was super clingy and tired. Ever since her Covid nose swab she has been afraid of any medical personnel. Especially since everyone is wearing masks, gloves, gowns, caps, and face shields. It was supposed to start at 12:30 but the OR was finally ready for her by 1. I was able to gown up and take her back with them. After leaving the OR, it was a long wait. We went to the cafeteria and had lunch, went outside in the courtyard, went on a walk around the hospital, went to the sky bridge to see the construction progress, and eventually stayed in the family resource center TV and sitting room. We got 2 calls from the OR saying she is fine and the surgeon is continuing to work. The estimated time was 3-3.5 hours, so we were expecting her to be done by 4:30. We knew she would be okay, we weren't scared, just wanting to see her. Finally we got the call at 5:30 that she was finished- 4.5 hours later! It wan't until 7 pm that we knew her room number and were allowed in. While we waited, the surgeon, Dr. Bly, came to talk to us. He said that Emma did great! Her cleft palate repair took a while, as she has a tiny mouth. He was able to reconstruct the ligaments to cover the hole. The stitches went along her upper teeth and then back to her throat in a zig zag pattern. Because of the spinal cord monitoring, he didn't want to tilt her head back so he had to get in weird positions to see inside. He then clipped her tongue tie in a more permanent way with stitches. Then, he did a camera scope from her upper airway down to her trach. Her vocal cords looked good, trachea looked good, no granulation tissue. He observed that her tongue is sitting far back on her throat and that is why she isn't vocalizing. Once she figures out how to bring her tongue forward, she might be able to. He then did a "trach safe"- a routine check to see how emergency procedures are effective on her. Last he did an ear exam- he found out that her ear canals are narrow, but that her hearing loss was not because of it. He thinks that her inner ear, specifically her ear drum is under developed. There was no fluid in there either. He gave her a good cleaning in her ears as well. Along with the spinal cord monitoring before and after along with the anesthesia, no wonder it took so long! When we were allowed back, she was a sad sight. He tongue was so swollen that it was sticking way out and she couldn't close her mouth. Drool was everywhere. Every hour or so, blood would come pouring out of her nose. It shocked me how much there was, but we were told it might happen. Emma was frustrated, scared, and very sleepy. The nurses told us that she had low blood sugar and she would be connected to IV fluids for a while, along with blood sugar pokes every 2 hours. We concluded that it was probably due to not eating since 7:45 pm the day before- almost 24 hours without food and 12 hours since any liquid. Her poor toes and heels were so bruised from the glucose pokes along with finding an IV, plus the spinal cord monitoring pokes. Her first night in the ICU wasn't as bad as we thought it might be. She woke up every so often, needed mouth and nose suctions for blood, and the nurse stuff- vitals every 2 hours, blood sugar pokes, IV fluids and flushes, and medications. She was just on Tylenol and Ibuprofen around the clock. The thing she hated the most (after glucose pokes) was the blood pressure checks. She hated that cuff. The ICU wasn't as loud and intrusive this time. They let us pretty much do all her cares that we could do. Dustin had to drive back home to work in the morning, so he stayed up the whole night with Emma while I "tried" to sleep. I mainly laid there behind the curtain on the bench, listening until about 3:30 am. Emma had a slow drip of food starting at midnight. Dustin had to leave around 6 am so I took over. I was able to doze off for another hour before Emma woke up. That next day was slowly transitioning her to food again- raising the rate on the pump and shortening her bolus times. She was able to have the IV taken out around noon. Emma is slowly making progress! She is still sleeping tons off and on, but she mostly lays there with her eyes droopy, not wanting to be messed with. She was starting to roll on her belly to sleep now too- more her normal self. Emma has MRSA (colonized with it, not an active infection), so all the doctors and nurses had to wear full attire- gowns, gloves, masks, and face shields. It was very overwhelming to Emma and she rolled to hide her face and cry every time someone came into the room. We were able to be transferred to the medical floor around 2 pm- out of the ICU! Progress! That evening was a little scary. Starting around 5 pm, her heart rate went sky high to 160-180 bpm (usual is 120-130). She hit 185 when crying. A dangerously high number. She also steadily felt warmer to me. Sure enough, she had a 101.5 degree fever. She also had these really panicky moments where she sounded like she was chocking, panic, oxygen would drop, and she would scream and arch her back. We found she was choking on her saliva/ drainage that she couldn't swallow. We had to keep her on her sides so it wouldn't happen as much. The fever and high heart rate lasted until the nurse paged the doctor and we decided to give her oxycodone at 9 pm. At 11 pm, she finally fell asleep and her fever/ high heart rate went away! She was finally comfortable. She also got some more oxycodone at 1 am just in case. Later, the doctors said she was in pain, but didn't show it, her body showed us instead. I was afraid she had an infection already. I was actually able to sleep (with interruptions of course) from midnight to 6 am. That was nice. And Emma finally had a good rest too after her surgery. The next day, July 10th, was a great day for her. She started the morning out with a poop! We had to give her a laxative and she hadn't went in 2 days. She cried, but I'm glad she's getting on track. That morning was a constant flow of visits- nurses, RT's, interns, residents, different teams of doctors. All checking in with Emma. Around 11 am, we decided to see how she would do off her vent. She rocked it! She was off for about 3 hours and her oxygen was great. She was working hard at it though. Her body was working on healing and didn't want to focus on breathing too. But it was one of the prerequisites to coming home. She was still super sleepy that morning but trying to play with toys. She got cranky with them easily though. She had me read her favorite book "Barnyard Dance" 15 times in a row too. We finally got the green light to go, once her discharge paperwork and meds were done. Wow, it took some pushing of the nurse to get it done. I asked her 4 times and was ready to get the charge nurse. Finally she understood that we want to be out today and got it going. We picked up her meds and were able to go at 2:30! It was just as we were expecting- 3 days/ 2 nights. The traffic home was terrible and trying to keep Emma from being upset was tough. But we finally made it home at 5:30. When we walked through the door she gave us a huge grin and had her happy hands! The first smile we've seen in 3 days! She was pretty excited too when we put her on her blanket on the floor and gave her favorite toys. That night was pretty rough still. She was still bleeding out her nose (not as much though), drooling, crying, and not sleeping very well. At midnight she was screaming and inconsolable so she got some oxycodone. A half hour later she was asleep and slept pretty soundly. The next day she was doing much better. Still VERY drooly that we have absorbent pads on her floor blanket and in bed, bibs on her, and constantly wiping her and suctioning her mouth. She is still off and on cranky too. I don't blame her though! We took it very easy the next couple of days. A couple of days later, she was starting to show her spunky and happy sides again. Every once in a while cranky and unhappy but doing better. She is also able to be off her vent more too. She is getting into her therapy equipment again (chairs, standers, bouncers) slowly as she can't do it for long. But she is making some good progress. 

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Around July 18th, Emma was finally starting to feel back to normal again from her cleft palate surgery. She was on pain meds around the clock, then just Tylenol, then nothing! She started to get back to her smiley self. The drooling isn't as bad now. We don't have to have her wear bibs, but we wipe her mouth constantly. Sometimes we tip her head down above the sink and the drool comes out (gross, I know) but then we can pick her up without being slimed. We also tried to feed her yogurt (her favorite food) for the first time after her surgery. It was really rough, for both of us. She cried when the pea-sized bite was in her mouth, and kept her mouth open, refusing to swallow (or can't or scared to). We tried the "encouraging to swallow" techniques that we learned from our OT at the NICU forever ago, but it didn't help. The saliva built up and nothing helped. We eventually held her in our arms, cradle-style, and she managed to swallow it, 15 minutes later. I couldn't help but to feel defeated, to feel like we took 10 steps back, and all our hard work was gone. Honestly, it was really rough, and we both cried. I hope it gets better. 

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Also around this time, Emma went into her small kiddie pool for the first time. I sat in with her and had her sit up too. She cried and fought me tons. She would have moments where she calmed down. We went into the pool a couple of times this summer so far, and with each time is just slightly less crying. Hoping we can help her with her water aversion. We also were able to take her in an actual swimming pool. We went with Carly's family to an old Krall family friend's house and spent lots of time in the pool. She actually enjoyed herself! She was reclined in a floaty and liked floating around the pool. After a good 45 minutes, she was shivering, so we took her out. We are so proud of her! We was also super safe in the water with her trach (as long as the cousins didn't splash around her). It's so nice that she is off the vent, that we can do things like this. 

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At the end of July, we went to Ocean Shores with Carly's family. We went to the Wildlife Preserve beach and Luna went crazy running around and swimming. We had a ton of fun walking the beach, playing with Luna, and making sand castles. Emma actually had a good time too cause it wasn't windy at all. It was surprisingly hot there! We all got sunburned later, but hat was a ton of fun. 

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On July 22nd, we had a bit of a scare with Emma. The night before, she was sitting up and I didn't catch her fast enough when she fell backwards and hit her head on the floor. That following evening, we noticed her eyes were moving in complete different directions. It was too late to go to the urgent care, so we took her to the ER. And of course she wasn't doing it as much anymore. After a couple of hours of observation, and discussion about a CT scan, they sent us home. They told us it was a mild concussion. It terrified us because of her spine issues. It was also scary because she kept crying, holding her head and squinting her eyes like she had a headache. We got home at 2 am and she ended up sleeping till noon the next day. And no more issues after that. I feel awful that I didn't catch her. She's okay now though.

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On August 3rd, we made our way up to Seattle Children's for 2 appointments. The first was her cleft palate post op. The surgeon said her stitches have completely dissolved and have healed beautifully. He told us her learning to swallow again will take time and just be up to her. We also asked about more details about her ears when he looked inside them while she was asleep. He said that he has diagnosed her with aural atresia-  a narrowing of her ear canals and an eardrum that didn't develop. He said that at the minimum of age 5, she would be eligible for her BAHA hearing device to be implanted semi-permanently behind her ears or a surgery to create eardrums, but she would still have to use hearing aids. They would be a lot less noticeable though. We shall see how she is in two more years. Maybe she will have an option of what she wants. But for now, this works for us. It was a little disappointing that she would need to wear some sort of hearing device all her life, but not surprising. We are used to it anyway. The second appointment that day was a pre-op for her gonad or ovary surgery. The procedure will be the next day! One month after her last surgery. A little fast, but they had an opening and I wasn't going to decline!

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Now time for her ovary removal surgery- August 4th. After a long wait in the pre-procedure room, it was time for her surgery to start. Within the last month, the hospital has changed their policy about allowing one parent to take their child back to the OR. I guess supplies (gowns, shoe covers, etc.) are in short supply because of Covid. It was really difficult handing Emma over to the OR nurses and watching them take her away, while she's crying. That was the first time I haven't been able to do that. Then we waited. And waited. It took forever to sedate her, then give her an IV. After a few tries, they finally got a good poke, then she needed antibiotics. After waiting a half hour for the drugs to work, they set up spinal cord monitoring. At that point they gave us a call from the OR saying they had just officially started the procedure. It was 2.5 hours in! About 45 minutes later, the doctor called us saying she was done already and that we could meet with her while they got her in the recovery room. The doctor staid the surgery went great! Her ovaries (or gonads they call them, since they don't work) and her Fallopian tubes were removed. The ovaries were the size of a bean. She has two 1/2" cuts on either side of her belly button where they used the Laparoscopic instruments and one cut on her belly button where they took out the organs. After about 20 minutes, I was able to see her in the recovery room. I was glad I could go back as she wasn't on her vent like we requested, on the wrong kind of HME, and needed suctioning pretty bad. Once I put her ears on her, she stopped crying and relaxed, and went in and out of sleep. It took us over an hour to get into a room due to having a new nurse, not knowing who to contact. After we got into a room on the patient floor (not the ICU- yea!) we just relaxed with Emma. She was in and out of sleep, but no crying. That continued throughout the night. We had started her on some Pedialtye then her food. I had remembered some of the schedule that we had made with the Nutritionist for the last surgery. It was a 24 hour plan to get her rate and amount of food back up slowly to where she was, while giving her the same calories. She also continued to get Tylenol and Ibuprofen around the clock through out the night and the next day. After she woke up the next morning, I took her off her vent and she did great! We were able to be discharged around 1 pm that day! As soon as we started driving away (and especially through the Seattle tunnels) she was so smiley! She hadn't showed real emotion at the hospital at all. She really hated the hospital. The next day we had her on just Tylenol, then the following day, no drugs- 3 days later! She was just fine. Never did she cry in pain for felt like she was hurting. She is one strong little girl. We have to put her in onesies now instead of shirts and pants because we don't want her rubbing her belly and incisions. She thinks it's funny to rub it. We were told not to submerge them in water for 2 weeks but can have water running over it, like how she has her baths. They look good and are healing well. I'm so proud of her!

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Life goes on- with some bad days, but mostly wonderful ones. On August 12th, Emma had an eye appointment in Bellvue. It was brought on because of her fall to her head, and her eyes were misaligned for a day. That problem was fine, all resolved by then. We did, however, find that she has some far sight problems we didn't know about. The Optometrist recommended another eye test and a sedated MRI just to make sure her eyes and brain were okay. It was a little disheartening that she might need glasses, but we will see on the other eye exam. 

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In mid-August, we decided to push  Emma a little more to talk. She grunts now a ton to communicate. Sometimes she gets frustrated and we aren't sure what she wants. We have days where we earnestly yearn to hear her voice, sometimes it hurts my heart that I have to do something distracting for a while. We have prayed multiple times and fasted twice this month so far to even get some squeaks from her. We have been using the PMV without a hole now, because the one with the hole wasn't doing a thing- she would just breathe all from the little hole. We do the regular PMV for maybe 7-10 seconds. She completely freaks out, as she can't really breathe out and turns a little red. At the very end she produces a tiny squeak as she is forcing all her air out. It is very traumatic for her, but it needs to be done. Since her tongue-tie clip, it just falls in the back of her throat, blocking her from swallowing well too. We haven't had a swallow study yet, but we are sure that is the problem. We desperately want to hear her voice, and hopefully soon.

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On the 20th, Emma finally had her first outpatient therapy appointment (physical therapy) since June. It was an evaluation appointment, and we will be going slow at first, but I'm thankful we can get going again. And in a couple of weeks she will get occupational and speech therapies soon too. 

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On August 21-22nd, we took Emma on her first camping trip! We had planned on camping at the spot my family went to a couple of years ago near Mt. Rainier National Park. We drove all the way there and the spots were all full. Because of the Coronavirus, everyone now is doing outdoor activities now that they are "allowed". Camping and hikes are packed. We then followed Kevin to his hunting spots near Mt. Adams in the Dark Wilderness Meadows area. It was a LONG drive, but there was no one there. We picked our spot (which was literally off the end of the Forest Service Road). Kevin then went back to get Carly's family to lead them to the spot. We got busy raking out spots for tents and a covering as well as a pit toilet. When Carly's family got there, we had fun sitting by the fire, walking by the creek, making food, and picking huckleberries. Emma was a little unsure about it, but didn't seem to mind camping. We had her vent charging in the car by day so she could use the battery up at night. We had also brought both suction machines and alternated charging them with the other car charger. It drizzled off and on that Friday, but we had lots of tent covers. That night was cold! We each had a foam pad to sleep on (Emma too!), but Emma kept rolling onto mine. Eventually, she slept with me on my pad, drooling everywhere. But she had a fantastic night. I am surprised Emma didn't freak out. She was comfortable in the tent. We heard wailing at the beginning of the night and thought it was coyotes, but found out later Alayna was waking up with bad dreams and crying. The next day was a sunny and warm day. We had fun exploring and picking a ton of huckleberries. Shortly after lunch, we packed up and went home. That was a fun camping trip! And I'm proud of Emma! She did great and we were okay with all her equipment. We brought the back-up small generator as well- thank goodness we didn't need it. 

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The weekend after, we took a trip to visit my VanGorkum grandparents. They (and we) have been really careful with Covid, so we felt comfortable going. We had a fun day socializing on their back porch until it got dark, then ate tamales (our first time eating them). They were very authentic and delicious! The next day we went on a walk and to a nearby park with them. Emma loved the large carseat swing. We will hopefully get to see them again soon!

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On September 21st Emma had a sedated MRI. She did just fine with the anesthesia and was back to her normal self that evening. The next day we got a call from the Neurologist, stating 2 findings along with what they didn't find- no eye problems, thank goodness. She did have some extra fluid in her brain because of some old scarring from head trauma- from an early birth we were told. They told us it is very minor and shouldn't make a difference. Just a very slight probability for seizures, but nothing to worry about. The other finding was that she has no olfactory or smelling nerves. Not sure what we can do about this, but she really isn't smelling anyway since she isn't breathing through her nose. They said it does affect taste, but she can still taste things, they just have to be strong to taste them. We will worry about these things at a later time I guess. 

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Two days later, she had an appointment at Seattle Children's- a post-op for her ovary removal. That morning, we found out that rioters were blocking the highway in Seattle, plus there was a big rain and wind storm coming. We were able to do the appointment by video chat, thank goodness. It was all of the DSD team of doctors (Differences in Sex Development)- all 5 doctors on the Zoom chat. They said Emma looked good and to follow up with them in a couple of years. They also gave us peace of mind- the ovaries/ gonads had glastogandomas. They are pre-cancerous cells. In other words, the cancer cells were there but hadn't replicated yet. Wow, I am so grateful we took them out when we did. So grateful for the good doctors too. It was pretty humbling. 

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Emma is super giggly now and loves laughing at everything. She loves wearing (and getting us to wear) sunglasses. She knows what shoes are. She grabs our hand and grabs a shoe, showing us she wants them on. She really is a silly girl. She also loves riding in grocery cart front seats. She gets super hyper when we drive into a store parking lot, as she starts clapping and waving her hands around. 

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On the 29th, Emma had her vision test- it was a line test with cards. When she looked at the side with the black lines, the doctor can see her eyes move and can verify that she could see them. The lines got gradually thinner and closer together, therefore harder to see and she stopped looking at them. We found out she might have far sighted vision, but only a slight 20/60 vision. The optometrist recommended glasses, but we passed for now. When she starts wanting to read, we will look into it. But for now, she doesn't need them. It would be just one more thing for her. 

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Now to October 2020. Emma has been making great strides. She is actually sticking her tongue out now and playing with it in her mouth. We were hoping she would bring her tongue forward more so she can make noises and sure enough, we are hearing a little more squeaky cries with the PMV valve. They are short but wonderful to hear. She also LOVES reading. She signs "book" a couple of times a day and we go through so many books. I love it! She also has learned the sign "TV" but for her it means "show", meaning her favorite Baby Einstein show. She gets so excited to watch it, especially the puppets, and cries when we say "all done". We only let her watch it when she is doing therapy, which really helps. It's the only thing that she will do therapies for. I really want her to play with toys during therapy, but I guess we will get there. She is also loving to stand and walk (with a ton of assistance). She goes straight as a board when we try to have her sit because she wants to stand instead. And she has learned to put one foot in front of the other, so we will hold her by the armpits and help her walk where she wants to go. She's defiantly determined! 

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Halloween was so much fun this year. We, as usual, enjoyed dressing up in a family costume. Emma was the Little Red Riding Hood, I was the Big Bad Wolf in a granny costume, and Dustin was the Huntsman. I even incorporated my face mask (for Covid) to a wolf muzzle. We spent the first hour at our church building. Our ward decided to do a drive-by Trunk-or-Treat because of Covid. We helped pass out candy to cars of kids driving by in the parking lot. It was strange to see ward members (although socially distanced, with masks and costumes) after 5 months of no meetings. Everyone loved our costumes and commented how they missed seeing us and Emma. We then drove to the Veteran's Memorial Museum in Chehalis for their Trunk-or-Treat. It was huge! Tons of cars and people, but most everyone was spread out. At first the line was long, but once we got to the cars and candy, Emma got really tired about half-way through. She buried her face in our shoulders, so we had to call it a night. We had fun though!

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In November, Dustin made Emma a cute little wooden chair, table, and easel just her size. She loves sitting in it, and it is easier for us to do activities. Her high-chair is bulky and she doesn't like to sit in it because the tray is too high and can't go lower, so this is perfect. On November 11th, she started to eat! It was the first time since her cleft palate surgery 4 months ago! She asked to eat in ASL, so we quickly jumped on that. She had about 5 tiny pea-sized bites of yogurt, but swallowed it all! Oh, we are so happy! She has also learned some color signs for yellow, green, blue, red, and orange. She learned all of them in one day, suddenly, while playing with her colored bears. I guess when she is ready, she will soak it up!

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That month we also went to the Tacoma Zoo with Carly and her kids. We had to buy tickets beforehand and wear masks. During Covid, the zoo was amazing! We saw maybe 10 other people there and had the zoo to ourselves. It was neat! It was a little cold, but all the animals didn't mind and we were able to just sit and watch them without crowds. The park employees were excited we were there too, as they kept sharing facts with us as we moved from exhibit to exhibit. 

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This month she heat her head again during therapy. She just decided she didn't want to sit up anymore and just plopped face-forward. Her eyes went all crazy again. Her right eye kept drifting upwards, and we think she also had a headache as she kept holding her head and crying. After a doctor visit shortly after, we concluded that she was okay. The eye drifting comes out when she is tired or hits her head, but it is nothing to be concerned about (unless it happens at least half the time). We were also able to debunk the last diagnosis of her having far sight vision! After a couple more line tests, she could identify them all this time (we think she got bored of it last time and stopped looking at the cards). She has perfect vision! Oh I am so grateful she doesn't need to wear glasses! We knew she didn't have bad vision before, as she always picks out the smallest details in things, weather up close or far away. 

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Thanksgiving this year was a nice and simple one with Dustin's dad and sister's family. I am thankful we have family close by us, especially in these times. The day after, we set up Christmas! Emma loved it when we brought all the lights inside to try them out. She got tangled in them, and got frustrated when she couldn't get out. She loved the lights on the Christmas tree too!

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On December 2nd, Emma has her swallow study. It was where she had a barium/ yogurt mixture while an x-ray video recorded how she was swallowing. It was exhausting. The moment she entered the room she didn't stop screaming (well, her silent/ grunt kind). She refused to eat. She wouldn't calm down and was a the gasping/ crying stage. So I ended up having to squirt some food on her tongue with a syringe. She kept pushing the food out with her tongue. Finally, after over 45 minutes of this, she had 2 or 3 good swallows. The data showed that when she swallows, it goes down well. She doesn't have anything wrong with her swallow-anatomy. In fact, she has really amazing tongue control, especially since she can maneuver the food to the front of her tongue easily. She plays with her spit at home, and that is why she drools so much. She just doesn't want to swallow. She is being a huge stinker. Good news, I guess. I had a hunch that was what was happening. We need to be patient now, that's the hardest part!

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A couple of days later, Emma had an Endocrinology appointment over webcam. We talked about her lab results that we took regarding her liver. We found out that she does have low counts, meaning that her hormones are low in the growth aspect. We aren't sure if it is part of her Campomelic Dysplasia (not curable then) or if it is unrelated. If it is unrelated, then she can take a growth hormone. We will be having her take a growth hormone stimulation test soon to figure out what we can do. I'm glad that someone is finally addressing how small she is. As of now, as a 3 1/2 year old, she is 19.5 pounds and 27 3/4" high (the average is 33 pounds and 39" high). We shall see. 

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The next day, we had an appointment with the Orthopedics (yes, a ton of appointments this week!). The x-rays of her spine looked great! No changes. He agreed that we need to be more aggressive in correcting her feet, so he referred us to orthotics. We are looking forward to having new AFO's on her feet that are more a 90 degree, and that actually stretch her.  We have to wait until mid-January to get them, but I can't wait. 

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We had fun with more of our Christmas activities this year. We made a nice (and real) gingerbread house. We made cookies and took them to neighbors. We drove around and saw Christmas lights. Emma absolutely loved those. Christmas eve and day was nice too. Christmas morning started out with the tradition of French Bread Buttermilk French Toast and opening presents. Emma is starting to like opening them now by pulling on the pre-ripped wrapping paper. She liked playing with the toys too, instead of being automatically scared of new toys like last year. Then for dinner we went to Kevin's and opened presents. It was a great Christmas. 

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At the last of the year, Emma is really doing well! She went off the vent at night on the 26th for the first 2 hours (per her doctor). She was okay- keeping her oxygen up, but she kept waking up with a big breath/ gasp every 20 minutes or so. Later that week the doctor said Emma could potentially have a little trouble with her exhale during sleep and keeping her airway open during the exhale. She may need air pressure with the CPAP instead of the full Pressure Supported ventilator. We will do a sleep study in a couple of months to figure that out. Dustin also built her a stander/ walker PVC-type thing- a bar with supports so she can stand on her own. It is amazing! She can stand without us holding her, but just herself holding her up! She can last about a half hour before her legs get to wobbly and give out. We also finally got her a bath chair. It has arms that suctions to the back and sides of the tub and she can sit up in the tub. The first couple of times she cried, but she is okay with it now. It was also an adjustment for her as well with getting washed with the handheld showerhead vs a cup of water. More sensory imput, but she can "almost" tolerate that now too. 

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Now we are ending the year 2020. What a crazy year it has been. A lot of people hated it. Yes, it was tough, but lots of good things came of it. Emma's health has improved a ton. We were able to grow closer to each other and our Heavenly Father with the lockdowns. We realized we could live without Emma's nurses. I know next year will be hard too, but there are always good things to come as well!

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