Spring Update: May

Here is a little bit of everything that happened in May:
  Emma dressed up one morning, determined to be America's Next Top Model. Obviously, all of the other contestants were immediately disqualified! On May 3rd, Aunt Mia visited in Orlando for a day before attending a friend's wedding that Saturday. This was Emma's first day at the Florida Mall!

   Emma got new leg splints made at the beginning of the month that have even more of a bend in them. These might be her best splints so far because they cover more of her leg and have more straps, so she isn't able to kick them off easily like she used to. We only go to Occupational Therapy (where the splints are made or adjusted, she doesn't do any other type of therapy besides that) about every two months. Emma doesn't like going because she doesn't like someone else holding her legs down and bending her knees the proper way. She wants to relax and flop them around, so she cried a lot at this last appointment. Michael was so sweet and held her in his lap, which helped her emotionally, and was easier for the therapist to form the splints against her little legs. She doesn't cry at home while wearing the splints, but after a few hours we will take them off and massage her legs, which she likes.

 
   A few pictures from Mother's Day with a previous 2016 to 2018 pregnancy/baby collage ~

  At her most recently Pulmonology appointment (May 14th) the nurse practitioner turned Emma's Pressure Control down from 16 to 14, and she said 10 is the lowest setting they put it at (same as the Breath Rate). She said that once the Pressure Control also gets down to ten, and she does well on that for a month or two, then we can start trying to sprint her!! That means seeing how she does without the ventilator giving her puffs. I am in less of a rush to get her off the ventilator, as I was compared to wanting her home from the NICU so quickly, but her being home is the main point of happiness. However, I would estimate that maaaybe she can be off the vent (at least during the day) by the end of the year? But again, even if not, having her healthy at home is the best part!
   I love doing "year progress" pictures, so here are a couple recent ones compared to last year. This one was a little more difficult because she kept pulling the flower crown off and didn't want our kisses!

  Emma has been "talking" a lot this month, even without her Passy Muir Valve on. The other day she was making new consonant sounds, saying "nigh/nye" over and over, and a few times she has made noises while sticking her tongue in and out. That one is my favorite because it makes the most silly sound "Lodo lodo lodo", but all of it is really good for her oral learning.

  A couple nights in May we actually did our homework and put Emma in her highchair so we could all eat dinner together when I got home from work. Christine (the Speech Therapist who comes to our house twice a week) said it would make more sense for Emma to see that she is being fed the same time we are feeding ourselves. She did really well these nights and ate a good amount of applesauce compared to the little amount she would normally tolerate during therapy.

   ^^ Being silly!
On May 8th Mrs. Nina came over again for more Music Therapy! & Emma wearing such a "Mommy" outfit. I used to have a favorite striped shirt that I would pair with a floral skirt during Full Sail (college). This time I held Emma's arm out and she moved her fingers over the guitar strings.
   I was contacted by Passy Muir's Instagram page when they saw a picture of Emma wearing hers from the previous Music Therapy session, and they told me that they would send her a Toby Tracheasaurus toy for free! It's a small plush dinosaur with his own Passy-Muir valve attached to his neck.  I filled out the form on their website, so maybe she'll get that soon.

  Some artsy bedtime photos below (also from May 8th), listening to her light up owl for a change, after listening to the music of her Glowworm since October.

   On Monday, May 27th (Memorial Day) we went out to lunch at On the Border:
It's hard to see, but in the picture with Michael she is holding a small chip!

 Actually playing with her Chinese finger trap! It was an extra piece of her nebulizer treatment kit that we did not need and I loved that she played with it instead of just throwing it on the ground like she does a lot lately. I also got a video as she rubbed it against her teeth like corn on the cob!

  Working on supporting her body and head with her arms! And getting up on her "knees".
I had to post a crabby picture too since everyone thinks she never cries or gets upset. She didn't like that bow, but the picture next to it was from less than two minutes later. Obviously she was fine! :)

   Two other things she has been doing recently: She has been getting sneaky about ripping off her left diaper tab, so we have to make sure she has pajama pants or jean shorts on at all times now. And before I left for work at 5:45am last weekend, I was watching Emma's ventilator as she was sleeping with a heart rate of 60. The green Patient Effort light kept blinking each time she initiated a breath every five seconds. That was so great to see how her lungs were working properly even when she was technically unconscious. It just means her little body is growing and getting smarter and stronger every day! 

   Yesterday morning Emma sat on the couch with me for a little bit to watch Avengers: Infinity War on Netflix, but she soon fell asleep back on her mat. It was great nap timing (at Noon) and she woke up about 30 minutes before Speech Therapy. She didn't eat any ice cream- that was just for the photo.

   Emma did a good job reaching for objects during Speech Therapy yesterday, even if she was reaching for two items with both hands, Christine would give her the one she looked at. She also tried green beans for the first time, but there was a lot of drooling involved. I picked green beans over peas for her because they had an extra gram of sugar, so I figured she would like them better. She got a few big scoops and after Christine left she still had some green beans in her mouth, but she was still happy in her stander and 20 minutes later all the green beans were gone, and her face was clean! :)