Emma's halo removal day came up fast! We had to be at Seattle Children's Hospital at 6 am, so we woke up at 3:15, and left at 4 am. I was so nervous that I didn't really get tired until later in the day. Emma was not happy to wake up that early, and she fought sleep the whole way there. As usual, it took a while in the pre-op room with questions and then more waiting. At 7:30 am, they let me take her back to the OR. And just like before, I stroked her cheek while she fell asleep, then left to be with Dustin again. After eating breakfast in the cafeteria, we were paged to talk to the doctor- all went well! A little while later, we got to see her. She always has a hard time getting out of anesthesia- super angry and sleepy. It was a huge learning curve, as they had to teach us about the forehead and chin straps. They went over her pin sites. The sites in front had to be stitched up, as they were having lots of discharge when the screws were removed. The vest was the same, but it looked like it fit differently. She also had this metal bar on her back, connecting the helmet to the vest, and it had this weird "kickstand" curve on the end. We are able to pick her up now though! It was so nice to hold her close- I missed this so much! We had her for a while, then after she could safety digest food, we went home. It was tough to pick her up, as we can't pick her up by her armpits anymore- only her head and bum like a newborn, or the vest will slide up more. It was nice being able to put her in her own car seat and not have to take all the straps out again (and thread them through the halo bars). She slept the entire way home. 

 

The next couple of days after her procedure were very rough, on all of us. We didn't have night nursing until Tuesday, and Emma was not sleeping well at all. She kept waking up screaming in pain with the sutures, the open wounds, the new apparatus she is wearing, and she was drenched in sweat. She was scared too, as she didn't have that rigid halo keeping her in one spot. She is starting to roll to the sides when we set her down, so she gets very scared. We also noticed things didn't fit her just right- her vest didn't have the halo holding it down, so it slid up her body, causing discomfort and pulling at her g-tube, making it bleed. She kept pulling at her forehead and chin straps too. Plus, she had swelling on her pin sites, and the helmet pushed the fluid into her eyelid and under her eye. She couldn't open it. Her sutures and wounds were oozing and painful. It was a very rough week on all of us. She was not herself (with pain and still getting over the anesthesia), not wanting to play wither. I wanted her halo back- I started to hate this helmet/ vest, as it was causing so many problems, Yes, I could hold her close, but she didn't want to be touched.

 

The following Monday was my birthday, but it didn't go as planned. Emma's swelling in her eye got worse, and the doctor wanted her to come in into the clinic in Seattle as soon as we could that day. Dustin left work immediately and we drove up there. They were going to do an MRI and contact the neurosurgeon, but after some consideration, decided that she was okay. That was very scary, as we thought the swelling was damaging her brain. Later that day her eye miraculously went back to normal. A HUGE relief. 

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A week after her halo removal, we went up to Seattle Children's to adjust her helmet/ vest and see the orthopedic surgeon. It was a very good visit! Her vest was altered, the bar in the back was cut down, the helmet got ventilation holes drilled, and other little adjustments. In order to do that, everything had to come off. We removed it all together, and it was terrifying. We can't let her move her head. Once she got out, she was a huge wiggle worm! She got excited and hyper, moving her legs and hips from side to side and trying to move her head too. It was SO good to see her whole body finally without any vest, helmet, halo, pins, and straps. The doctor told me that we need to take everything off at least every other day. She needs breaks from it. He helped me give her a head a towel bath for the first time in a week. It was really gross and painful for her, but it needs to get clean to heal. We found out that she has some pretty bad pressure sores on the back of her head. All the more reason to get her out, even though it's terrifying. She got cooled off, then fell asleep for a bit until the orthotics team were finished with the adjustments. She wasn't happy to put in back on, but it was clean! The doctor also told me that her x-rays showed that her spine compressed a little, but that it was almost expected. The team also took plaster casts of her feet to make new AFO's. Her feet angle went from 125 degrees (pointed downwards) to a 95 degrees (almost flat)! All my physical therapy and stretching is paying off! From that point on, she flipped a switch- she was happier, playing with toys again, not as sweaty & in pain. She also is remembering how to roll again! We can put her on her back, and she will roll her sides, with lots of assistance still. It is a little difficult with the bar in the back, as she has to balance to stay perfectly on her back, but not near as bad with it cut down. She is loving being able to roll again! Super big grins and she is using tons of abs and leg muscles to move more. It scared her a couple of days ago, but now she got that taste of freedom, she realized that she has more independence now. It's exciting to see her go from miserable to thriving so quickly. 

 

The next day we went up to Seattle again for a Pulmonary appointment. Emma's bloodwork, work of breathing, vent numbers, and CO2 levels were looking really good. They decreased her vent setting again by one on each of the main settings (PEEP now at 9 and Pressure Support at 13). This is a huge step. We monitored her closely for a couple of days and she is doing great! What a roller coaster of a week. I am so happy she is progressing. She is also getting more interactive with Luna. She loves throwing her ball for her (with us holding her arm and throwing the ball). We get the biggest laughs with that! She also loves stacking blocks and putting objects inside other objects too.

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On July 20th, we went to the Lakefair parade! We first set up our folding seats, then Dustin, Emma and I walked by the Capitol in downtown Olympia to the fair portion. Emma loved watching the fair rides, but was a little overwhelmed with all the crowds, noise, and loud band music. Her circuit popped off the vent once, and we didn't hear the alarm! We knew something was up when we saw her get mad and then we quickly fixed the problem. We got Elephant Ears, then walked back up the hill to our chairs, to wait for the parade to start. Immediately, it was too loud for her as she started crying. She was better once we took off her ears. She even cried during a marching band- it was so loud, she heard that without her hearing device! She didn't like it, but nice to know sometimes when she can hear on her own. She did enjoy the parade for the most part though! She got excited and had her "happy hands" going when the band's flag twirlers went by, and any float with shiny banners. She liked the cheerleader's pom-poms too. The transit bus came by in the parade and blew a TON of bubbles- she thought that was fun too!

 

A couple of days later, we were looking at the back of Emma's head and discovered that the pressure sores got really bad overnight. We had to drive up to Seattle three times in that same week! They were quick scheduled-the-night-before appointments to adjust her body cast, to treat her sores, and to trim down the back of the helmet. Unfortunately, the sores were in her deep tissue and they opened up so it will take a while to heal. A lot of driving, but finally things are starting to calm down and we can enjoy life now that she is comfortable. 

 

Emma is doing so many new things! She is now able to roll around on the floor again- she really missed that. She rolls from side to side and is able to plant her feet on the floor and scoot backwards. Since her helmet doesn't easily move, she rotates herself like hands on a clock. It's pretty funny to watch her spin herself and then get tangled up in her circuit. She also loves playing with her feet. She will put cups on her toes and try to get them off and then put them back on. She has fun dangling toys and keychains on the tips of her fingers. When we let her have her daily vest/ helmet break, she gets so excited. She tries all she can to move her head. We have to hold her head still, but she will try so turn when we aren't ready. Sneaky girl! It's so hard not to let her, because she is just itching to move around, but we have to be safe! Not until her fusion is completely healed. 

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In mid-August, Dustin was able to take a week off from work and we had a "Staycation"! We planned so many fun things with each other, with Dustin's immediate family, and Dustin's grandpa came up from Idaho for two weeks so he was able to spend time with us too. We spent one afternoon boating- yes, boating with Emma! It was incredibly nerve-wracking, but I soon realized that it was actually pretty safe. Dustin, Emma, and I were in a metal rowboat, complete with her vent, emergency bag, suction machine, her food bag, and a lunch box for us. She loved the rocking of the water and looking around at everything. A couple of days later, we had a family bike ride! Dustin's sister and her two kids came riding with us, while we rode on the Yelm-Tenino bike trail. We had gotten a bike trailer and hooked it up to Dustin's bike. Emma fit in it perfectly, and was super secure in the straps. Inside the compartment, she was able to have her vent sit with her, and outside in a basket her other equipment. It was super fun! Emma got loads of dirt kicked up from the bike wheel all over her. We were picking up specks of dirt from in her vest and helmet for days. But we all loved it and am grateful we can do these things as a family! The following Tuesday we went to Cape Disappointment- a beach on the edge of Washington and Oregon. We were able to take Dustin's grandpa with us too! We started out going to the old Fort Canby- a creepy old concrete coast guard fort. We then were able to see two lighthouses in the area. They were so beautiful! We couldn't get close due to construction on one and the trail to the other was too much for Emma's wagon. After a small paved walk to a lookout over the peninsula, we drove down to the nearest public beach. It ended up being a very hot day for the Pacific Coast- 76 degrees! The sand was actually hot to the touch! Emma loved being able to watch the waves. We had to be picky about where we sat and ate our lunch, as a washed-up sea lion was stinking up the beach. It was interesting to see how big those animals are though! We all were able to spend lots of time outside, and got nice tans! Cape Disappointment wasn't disappointing at all. The following Thursday we took Emma to the zoo- her second zoo trip. She loved looking at the huge bear sleeping, and watching the tiger walk back and forth. We had two funny experiences with the animals though. One of the first animals we saw, the giraffe, was eating his lunch when all of a sudden stopped, and stared straight at Emma for a minute, even in a large crowd of people! He then went back to eating. Later, we were watching the rhino, and he did the same thing. Except moments after he stared her down, he quickly charged the opposite direction. We are thinking they were listening to her circuit- it's a loud rushing sound of air when she breathes. It was a new experience to these animals. Maybe Emma even scared the rhino. Imagine that! We had a fun time the rest of our "Staycation". We went to a local farm to feed the animals, had a family dinner, and had another bike ride with just us three. It was a fun but exhausting week, but I'm so happy that we can let her experience all these things, like any other family.

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At the end of August, we went to a Nutritionist appointment, and they gave us permission to start trialing blended foods. We had to buy a top-of-the-line blender, so we could liquify anything from carrots to beef to bread. Every day we would pick a small amount of food, blend it, and add it to her food bag of formula to see how she tolerated it. Plus, we could learn how well things blended. So far, she has had almost all our foods in the food groups! This month we also were able to get a nurse! After many months of missed work, rescheduled appointments, and other things, it was finally nice to be able to continue in a good pattern again.

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September was more of the waiting game. We had a follow-up with the Orthopedic doctor, and her spine is healing nicely. They told us at the beginning of October they want to start weaning her out of her body cast if all looks good still. In the mean time, we continued to spend time together doing fun things, regardless of what Emma was wearing (or not wearing, as she couldn't wear clothes!). We went apple picking one day with Dustin's family and were able to get two huge boxes of gala apples. Emma liked watching her cousins run around and drop the apples from the tree. By the end of the month, we were anxious to go on a hike again. We decided to take the hiking backpack out, and see if Emma fit still. We only used it once so far, but she was in her halo. We had to tighten the straps, but she fit great! We drove about 2 hours to the base of the Olympic National Forest, and our map on our phone told us a wrong location for the trailhead. We kept driving, finally found a worker at a tiny visitor's center, and he directed us to this unmarked, very hard to find trailhead. We wanted to see Spoon Creek Falls, by the Wynoochee dam. It was a very secluded, rarely visited hike, and because of that, it was absolutely beautiful. Covered in moss, the trail was short, but a little steep. We were grateful we brought our trekking poles for stability, especially Dustin, as he was carrying Emma and her vent. There were a bunch of off-shoot trails, but we guessed the correct ones and made it to the falls! It was very stunning, with a wade pool at the bottom. Emma loved to lean to the side to look around Dustin and to see where we were going. Minutes after we got back to the car, it started raining. What good timing!

 

Emma is learning so much. She LOVES to stack her wooden blocks, and she will purposefully line the letters up. She will still dangle or balance an item on her finger, even while stacking blocks! She learns so quick too- with each new toy OT brings her to try, she gets it within minutes and repeatedly tries until she succeeds. She has a very strong determination to do what she wants and will let you know if that's not happening. She tries to hard to turn her head when we get her out of her helmet/ vest for a wipes bath and trach care. We have to hold her still and be on constant alert when she is free. Hopefully soon, little one!

 

Little did we know Emma had a surprise coming soon...

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