Books & Balance

   Happy New Year!! I joked that we celebrated the beginning of 2019 with Portugal at 8pm Florida time on the 31st since I had worked that day and also worked the next day. I dressed Emma up for a few pictures and Michael used her spinning light up toy as the ball dropping and we did a ten second count down on video. I believe this is the same toy they use at the eye doctor. She loves it!!

   The second I said, "Photoshoot over" and took her festive headband off, she began making silly faces (not yawning), or what I call her mouth exercises. This includes being able to curl her tongue to the side. She started doing those on her own on December 21st. This year I tried to make realistic resolutions, which included reading more books to Emma. For my baby shower I asked everyone for books instead of cards because it is a much better use. Some of her books she has heard many times because at the hospital they recorded me reading them to play for Emma on CD when we couldn't be there. I was so excited with this resolution that I went to the library and got 19 books for her! I usually read two or three a day during her treatments at night, or just one if it's longer.

   Today I returned the favorite ones I had read to her several times and the ones that only needed to be read once, then checked out 8 more from the library. My very favorite so far was "Mousie, I Will Read to You" by Rachael Cole & Melissa Crowton, and I also thought "Snail Mail" by Samantha Berger was really cute. I might be a bit biased on that one though because I love mailing letters! :)
 
  We did Emma's two therapy interviews the first week of the month. The first one was done by her physical therapist, and the second was a phone interview with the therapy coordinator. Those have to be done every six months to check her progress and approve her continuation. This was a big day (January 2nd) because the physical therapist had a few minutes to work with Emma after she asked us all of the questions about Emma's growth since August. She had Emma sitting up and she was able to balance for a full minute!! That is a huge deal considering before that she had only been able to sit up for about 3 seconds at most, before falling back/ we catch her. That night I brought her out on the porch because the weather was nice and we needed fresh air. (Although I had to have Michael help me get the ventilator stand back up into the house after). We were only out there for about 20 minutes, until I saw that she was falling asleep, but she sat up the whole time, holding on to the table.

 
   Michael was gone most of the day last Tuesday (January 8th), so we had a girls day! We made smoothies, played music while she sat in her high chair, we took naps together, and most importantly, practiced sitting up. In the second collage below, where she is holding her lip- that is her balancing on her own for a few seconds! She let go of my leg on her own and was holding her toes with the other hand.

  More pictures from over the weekend ~ Wearing this orange onezie for the last time. I'm crying that it's too small on her now! The arms are perfect, but the body part is not long enough anymore. It was one of my favorites on her. I was able to get her to color another beautiful picture with markers! (She also got cute little marks on her cheek, hand, and forehead.)

   Grammy (my mom) came down to spend the night on Friday. She got to witness Emma balancing- this time for 3 minutes!! We were able to distract her with her musical turtle and as long as the instruments kept playing and the lights were going, Emma held on to her toes. My mom was able to get most of it on video! Eventually she yawned, leaning her head back slightly, which threw off her balance and I caught her. In the picture of her leaning against the pillows, we were watching The Incredibles.

    I don't normally put pants on Emma (seems like a hassle to take them off each time we need to change her diaper), but she looks so cute in them!! The size 3 month pants fit her perfectly right now, while 6-9 month shirts or onezies are best on her. Oh, last stats from December 26th ~ she weighed 15 pounds, 2 ounces and was 23 1/2 inches long, and the Pressure Control on her ventilator was turned down two more points, to 20!! Hoping she will continue the pattern of greatness and be at 18 at the end of this month. :) Yesterday my mom and I came back with a free Disney (Epcot) souvenir from a fun day with our neighbor/friends.

   Emma seems to be learning new things every week. When she is on her trach table at night (before we put the legs up) she learned that she can move her body to make the table "see saw". And today she did the same thing in this rocking chair in the photo above. She leaned forward a little bit and then leaned back to make it rock! I try to get a video of all of this when it happens so I can remember the milestone dates. Also last week I noticed that when she grabs our fingers for us to pull her up, she starts pulling herself up and can get the second half of the way on her own by tucking her chin down and squeezing her abs! We are sooo proud of our girl!!
   Here are two of Michael's latest projects: Re-sculpting his Edrio/ Two Tubes helmet (Star Wars "Rogue One" character) for MegaCon in May, and putting together a "ventilator backpack" for Emma's first vacation in March. The vacation is more for him, as he has not gone anywhere since Emma came home. However, he has let me spend the night in Gainesville a couple times and Daytona Beach once in September. But it will be very fun to take Emma hiking! We sure can't push a stroller up and over all those roots and rocks! More on that later. ;)