^^ check out that crazy bed head, she is looking at me in that photo!
^^ can you see her knees bent behind the tubing?
4/25/20: Emma learned how to initiate hugs!! I had been teaching for a while how to give hugs. I would sit her on the railing before putting her into the crib for the night. I would bend my legs so my shoulders were at the same height as hers, and hold her hands and arms around my neck and say, "Huuug!" That night she put her arms around my neck without me doing it for her. When I pulled away but then leaned towards her again, she did it a second- and third- time! I definitely made a video of it; these four pictures are a screen cap from that video.
5/09/20: Emma gave me twelve hugs in a row, each time holding onto my shirt fabric on my shoulders and pulling me towards her, then she would move her arms so her hands were behind my neck. Sometimes she would even give me back scratches, haha. The thirteenth hug was really long, like she didn't want to let go. I almost started crying! This also made me think of the poem I wrote for her while she was in the NICU called Twelve More Kisses. She unfortunately has not been giving us kisses like she used to for a handful of months. When we would make kissy noises, she would lean over so her mouth was by our mouth. Now she has no reaction, or puts her hand up to block the kiss. I guess the tight hugs are a nice trade though. Also she has not been doing the sign language for "more" and "all done" like she was at the beginning of the year, or last year. I didn't keep track of when she stopped doing it.
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Second topic: A couple weeks ago I was wondering what Emma's weight was since it hadn't been checked since the beginning of February (right around 18 pounds with the scale at the doctor's office). On our regular $10 Wal-Mart scale at home she weighed 15.8 pounds on 4/28/20, so I upped her formula amount from 30ml per hour to 32. After our video chat appointment (because of of the Corona Virus) with GI, we upped her milk again to 34ml per hour, and this morning I upped it again to 36ml. the GI doctor wants to get her up to 40ml/hour if she will tolerate that, so we will probably up her to 38ml this Saturday and 40ml the following Saturday. On 5/27/20, we will be going to an appointment in the office to see how how she weighs on the doctor's scale. I will also weigh her that morning on our scale to see what the difference is. Yesterday she weighed 16.6 at home. The GI doctor did say Emma still looked good and healthy when he saw her on the video chat, but since she is half of the size of an average toddler and almost 3 years old, she shouldn't be losing weight.
Part of the reason she lost weight was most likely because of Sprinting (which is what it's called when Emma is breathing using just her trach and not the ventilator). She scoots and crawls around a lot more now, so it is a lot easier to also unplug her milk at the same time. If not, then she scoots too far away from the formula bag, which is attached to the ventilator stand, and risks ripping her Mic-Key button and G-tube out of her stomach! I am surprised that hasn't happened recently (I think the last time that happened was at the beginning of December). However, unplugging her formula means her continuous feeding time gets decreased from 24 hours each day to around 20 hours. So overtime, all those extra hours of not getting any calories, plus burning calories from scooting around, made her lose those two pounds.
He told us that we no longer needed to use the BeneProtein, which we have been adding a 1/4 teaspoon scoop of into her formula since she came home from the hospital two years ago. Which is a shame because Michael just bought a bunch of new packs of the BeneProtein last month. Also, Emma has been having some poop issues for the past three months. Where she wouldn't poop for 5 days, starting in February, so we were having to give her a suppository every few days. We also tried prune juice and Miralax. Right now the best solution and consistency seems to be using 1/8 teaspoon of Miralax for every 6 ounces of formula that she gets. 1/4 scoop we found was too much and then it gave her a bad butt rash and we were having to give her bath salt soaks every night. GI did not seem to be concerned about that since the current solution is working for her. (I was stuttering/ losing my train of thought so bad during that part of the conversation on the video chat because my phone told me it was down to 10% even though it was at 100% just two hours prior! We were frantically trying to figure out how to plug it into my laptop so we could all stay on the couch instead of all three of us moving to the plug next to the kitchen sink! Who knew video chats would be so stressful!)
We also had a video chat with Emma's pulmonologist the same day last week. We told her that Emma hasn't been doing as well with sprinting as she used to. She's still doing okay- sprinting for 2 to 4 hours per day, which is still really good compared to the 10 minutes a day she started at in July last year, but a couple months ago she was sprinting twice as long:
2/17/20 ~ Total of 6 hours
2/26/20 ~ Total of 8 hours
2/27/20 ~ Total of 9 hours!! (**Her Longest Ever!!**)
3/06/20 ~ Total of 7 1/2 hours
Usually the sprints are broken up into two sessions, one in the morning once she is moved into the living room, and another one about an hour after her nap, which is takes whenever she decides she is tired. She does not have a set nap time. I think her longest sprint stretch was maybe 5 hours at once for the 9 hour day. Sometimes lately it seems that Emma just really likes hearing the puffs and beeping of the ventilator, like it soothes her, so she will cry after being disconnected for only 10 minutes. I have been using her talking/music toys lately to distract her, or I will hold her and play with her, and that works for a while. The pulmonologist did also say we can try testing out only giving her treatments at night, and skipping the morning sessions, which I have been wondering about for a while. But since Emma is sprinting less, Michael doesn't think taking away one of Emma's lung-opening breathing treatments is a good idea, so we haven't started that yet. She also said we could try sprinting her when she takes naps *as long as her foot probe is on* to make sure her stats/ heart rate stay at good levels.
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Thirdly, Emma has three types of crawls (being able to scoot herself across the room on the hardwood floor and rug/ carpet). The first one, which I call the "creepy crawl" because her legs look really broken and exorcist-y, even though we are super proud of her for figuring out something that works for her body, started on 12/10/19. She has been able to do the "scoot back"since the middle or end of February. For the Scoot Back, Emma starts in a sitting position and uses her hands to push her body backwards along the floor. This is the quickest way for her to almost rip out her trach and G-tube while she is hooked up to everything and not sprinting. The third one is what I call "the Ursula crawl" because of a scene from The Little Mermaid. This is where Emma starts in a sitting position and pulls her body forward and her legs end up rotating from starting in front of her to the side or behind her. This one is done mostly when she is trying to go to a toy she wants to play with.
Technically she has a fourth scoot and that is to get her under the coffee table where she likes to take her naps. She does the scoot back and then rolls onto her back, then holds onto the lower level of the table and scoot her butt so she gets all the way under the table.
Speaking of toys, Emma has been learning more about how to push, pull and squeeze buttons on her toys so they will sing, dance, and light up for her. Her favorite toy for the past several months has been a little robot girl that we recently named Malinda. She got that from one of Michael's extended relatives for her birthday last June. It is easy for her because anywhere you touch the toy, her sensors activate and she starts singing and her tummy displays different colors. With everything new Emma has been learning, I finally pulled out a singing sloth toy that she got for Christmas from my mom's best friend. However, she immediately began trying to get the sloth to sing by using her usual tactics: touching the head and pulling the arms, but those didn't work. I showed Emma a few times that she needed to press the buttons on the foot for him to sing. She didn't seem to understand it, but a few minutes later, the sloth was singing because Emma had figured it out. It was easier for her to knock the sloth down (haha) so he was laying on his back, and then she would squeeze the foot, which worked! Now Emma often makes Malinda and Flash (the sloth, Michael named him that after the sloth on Zootopia) sing at the same time. Yesterday I also pulled out a big square piano type of toy and a "busy box", both also from Christmas. Emma is mostly interested now in toys with buttons that talk or play music.
^^ shaking her toy bin to get Malinda to sing to her.
^^ part of the Ursula crawl
Another thing that I was getting a lot of pictures of last month with how much of a "chewing phase" she was in for about a month- chewing on paper and plastic. We really needed to watch her when she did this (or not let her do it) because twice she chewed off a piece of paper and got it in her mouth! Both times it was noticed right away and then the item was taken away from her. She already seems to have passed that phase though, or at least slowed down to the regular amount of chewing, just on her tubing when we do treatments. I think she likes the vibrations of it.
^^ so many faces within one minute: 4/16/20
Below: she had to get a bath on 4/14/20 after a big diaper blow out. And the next night I thought it would be fun for her to get her first bubble bath. Michael said it was really hard leaning over the tub to wash her hair and body, so he is sticking with her filtering tub that we put over the kitchen sink.
^^ since one of my friends asked: those are not bruises down her back, it is hair/ thick peach fuzz.
^^ prune toes!!
That's all of the updates I feel like posting for now. I may not post more than once a month anymore because with our 2009 Macbook laptops and four year old cell phones getting slower each month and not being able to connect to each other, it is becoming increasingly more difficult to get pictures from my phone to my laptop to the blog, and I get easily frustrated with technology not working properly, and definitely do not want to have to shell out thousands of dollars to get a new one of either! :)
