For this post I weeded through my phone and deleted 279 photos and 13 videos and of the ones left over, here are my favorites:
After remembering Emma's love of swings, including the one Michael set up for her in the backyard of our first house, we explored another neighborhood and were pleased to find a playground near the front. It was very cold that day and we only had one of her feet covered, so we didn't stay long. She had her foot probe on, with the sock covering and it was not so cold when we first left for the walk. Emma did not care for the slides.
There was a Preserve that Michael heard about, not too far from us that we checked out. I got a new mini Polaroid camera, using some Christmas money I still had. I do not get rid of/ pass off the other ones when I get a new one (I have been asked that before), but I had my eye on this one for a while because of it's distinct look, and it came in a "party pack" with film and magnetic photo frames! The party pack was surprisingly $10 cheaper than if I bought only the camera from another seller, both via Amazon. (First photo here- Emma is handing me a leaf.)
We went on a few different trails, but had to turn back on a couple because they were not stroller friendly. I went again the next day with Sasha so I could explore those areas we didn't get to see. And I know she is old ~she turned 16 in August 2023! ~and maybe it's because she was really focused on getting to the car for water, but she did not notice that tortoise that was right there at all! :)
At the beginning of the month, Emma had an Orthopedic appointment to get her legs looked at for a regular follow up, since they have been falling back into their "old habits" of bending backward at the knees.. where there are no kneecaps, part of her Meier Gorlin Syndrome. They usually get an Xray of her spine as well while we are at the Ortho appointment. The tech allowed me to take a photo, but Michael and I cared more about the condition of her lungs. Unfortunately the Xray showed that the left lung (which is shown on the right in the photo) is still closed. The left side shows her right lung, dark and filled with air. If you look closely, you can see that it looks like the right lung is expanding outward to make room for extra breathing. It is shown as a gray color near the top of the left lung and rib cage.
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| 19 pounds, 9oz this month (Feb 2023) |
We invited another couple over for dinner, Rachel and Nora, who Michael knows from work. They were both very nice, and even brought us a beautiful bouquet of flowers that I refused to throw away for weeks, even after they expired; because even then they looked pretty! We ordered two large pizzas from Mariana's, including one that was a veggie without mushrooms, and, oh my goodness, that one was so delicious!! Rachel (who has the red hair in the photos below) spent a good amount of time playing with Emma, and at one point before they left Emma got both of them to play the "suction catheter game" with her:
Step #1, Emma pushes her suction catheter down her trach (without the suction machine being in use). Step #2, the Player slowly pulls it back out. Step #3, Repeat Steps 1 and 2 for as long as the Player will allow. I don't think I've seen Emma be the one to stop the game and move on to something else!
For Valentines Day, Michael and I bought each other flowers, but he had also secretly bought all of the replacement towel rods and toilet paper holders that I had been wanting him to put up. He also ordered hand towel rings for two of the bathrooms. My main issue was that the towel rods that had been installed with the house were awkwardly high, preventing me from being able to decorate one wall in the downstairs guest bathroom. Michael didn't like the style of them (we did not pick them out; it was an inventory home) and had been looking at more of a sleek, rectangular style. I liked those more too.
Emma had her pretty little eyes on someone last Valentine's too. Wooo-weee! Doctor Conrad Hawkins, played by the ever so handsome actor, Matt Czuchry. I was watching The Resident on Hulu that month. The second photo must have been from a day when we were not watching the show, haha!
Other notes:
Michael tried a smoothie bowl for the first time in his life and liked it more than he thought he would. Our next door neighbors had the construction for their large screened in patio begin this month, even though they said it was supposed to have started a few months prior. Just like how we were "supposed to" have moved in to our house at the end of July 2022 and it was nowhere near completed at that point.
I hung out with Tonia and Ashlyn on February 11th, but Emma wasn't there for that so I'm not posting photos. We walked around Palma Sola Botanical Gardens followed by a more hike-type-walk at the Robinson Nature Preserve; both are free! Then we had a very yummy lunch at a spot we had never been to, but a place I would like to try again: Sweetberries Frozen Custard & Eatery.
Although I said I will make more of a "Full House" post later.. get it? ;) I am fine adding small notes about when we had to get things worked on after we were fully moved in. I did not mention for January that a few times a worker had to come paint over some spots, which had been damaged or scraped during the move in days, because the shades of "Agreeable Gray" on the walls kept being off once it dried. In February, they finally got in the center window joint for the double window for Emma's playroom, although it was nice that the silver part that had been showing through wasn't noticeable once Michael installed the blinds (all by himself!) in the second week of January. I probably helped a little. ;) You'll find out how much of a timely hassle this beautiful window ended up being for us during the build when I write about it later. The more I talk about it, the more I want "the build" to be my next post! We'll see.
The connection cord for the pulse oximeter monitor to Emma's foot probe (which was under the sock in the swing pictures at the beginning of this post) got a crack/ hole that slowly became larger within a couple weeks. Big enough that wrapping Coban around it didn't feel like a safe option. The probe sensitivity tends to seem faulty here and there to begin with, so I was able to get someone from her medical supply company to bring a new one to our house. Apparently Emma uses a lot of the older devices, so the woman on the phone made sure the driver brought the correct cord that would fit this specific monitor. Actually.. I think they mailed it first and a newer model was sent, so I had to call and tell her we couldn't use it because it didn't fit the one we use, then the correct one was dropped off in person. That sounds accurate!
One morning, on February 26th, Emma was having a hard time breathing. Her heart rate was really high (over 170 bpm) and she was really warm/sweaty, so I took off her pajama top and started her nebulized treatments early. Eventually she fell back asleep. I kept switching out her washcloth for a new, cooler one. This photo was from 8am and in another photo (not used) from the afternoon, she was laughing and playing again as usual. Sometimes for Emma, especially with only one working lung, she can easily get in a coughing (or gagging on saliva) fit and her body needs an extra boost to help her out for a little bit.
Michael and I continued with her therapy at home throughout the month, nothing official, using her gait trainer sometimes as well. And there were a couple days that I helped her write her name using the "hand over hand" method. She did not appreciate me making her write it six times in a row, but it got done! :)
February was when I started the process of getting her enrolled in "school", via the Hospital Homebound program. This was something that I wasn't able to do until we had moved (and I wanted to be settled) into the house, because the apartment we were living in before was not in the same county as our house, which was still being built, so they told me I could not enroll her until we were in our permanent home/county. I also had to enroll her in an actual elementary school, the one she was zoned for, even though she would not physically be going to that school. With all of Emma's medical and developmental needs, we have to use a program where the teacher can come to our house.
