Christmas in July

   That title is a definite joke in Orlando where we just had a heat index warning over the weekend! But I'm still using that title because I am posting pictures from last December that I had not posted before. We had so many fun activities going on that month that I guess I forgot to post some of our special pictures. I loved how cold it was for most of the month. Not really cold compared to spending Christmas in Michigan the year before, but cold for Florida. It was in the 50's and 60's some days. (Yes, I know some of you are laughing- especially Mia who has lived in Colorado for almost three years, where they have snow 75% of the time!) But I like the cool weather here when it's low enough to enjoy wearing a jacket and scarf. That's nice weather.
   Anyway, so on December 11th last year, exactly one year from us flying up to Michigan, we took Emma to Disney Springs (or Downtown Disney as I still call it) so we could check out the Christmas Tree trail during the day. I tried to do a DIY Bibbity Bobbity Boutique baby bun before we left and put a pinch of glitter in her hair, as well as in my own!

   I was never a big fan of Snow White and the Seven Dwarfs, but now having our own sweet little baby with dwarfism, these characters seem a bit more special. I thought their wooden Christmas tree pyramid was cute, but not cute enough to buy for $250! Just kidding, it probably didn't cost that much.
   One thing Michael said he did not like while we were there, was how crowded it was in the stores and how everyone is in their own world. Michael would politely say, "Excuse me" while trying to push Emma's stroller around inside and the people would either not hear him, ignore him, or barely move, not paying attention to all the medical equipment attached to the baby and the stroller. I would like to go back again this year, in the evening when it's dark and the lights are on- and hopefully the fans that blow snow (soap) are turned on this time. We'll just have to avoid the stores!
   I was sad that they didn't have a Moana tree since that movie seemed newer and pretty popular. Frozen seemed to be the most recent themed tree. I saw a huge tree Christmas in another section of the area and an employee offered to take a couple pictures for us. If we had not taken our own Christmas photos at home, I probably would have used one of these, although I'm glad Emma was smiling/ laughing in our 2018 Christmas cards.

    We had lunch at Blaze before going home. It was like Subway, but for pizza!!
   Below: Snuggling with Grinch and enjoying a physical therapy session with Grace. Lara has been Emma's physical therapist now since April because Grace moved back up North at the end of March. Oh, and last week Michael met with the therapy coordinator at our house for Emma's yearly evaluation and since Emma is pretty far behind on the developmental chart, she said we could start having someone come to the house for Emma to get Occupational therapy once a week too! She told me to expect a call, but I'm still waiting.

     My best friend, Mia, flew to Florida for two weeks around Christmas last year and I wanted to spend more time in Gainesville with her instead of just driving up one morning and coming back that night. However, Michael and I always need to do trach care together - I hold the trach in while it's unattached so he can clean well around her neck and stoma. We usually do this around 9pm after her treatments, but in order to get to Gainesville early, we did her bath and trach care in the afternoon. It doesn't really matter what time it is done, as long as it is done once a day. The bath has to be done before trach care or on another day, if I have to leave early. It can't be done after trach care because then her neck and ties (the thin, blue fabric that holds the trach in her neck) would get wet, causing her skin to get raw and break down overnight. In the 15 months that Emma has been home, we have only skipped trach care one night because Michael didn't get home until after midnight (but did it the next morning) and on two occasions he did trach care on his own, but said it was very difficult.

   Before Christmas Day a co-worker let me borrow a little Santa suit that she had from when her sons were little- they are both in college now! I guess I had mentioned wanting to do a photo shoot like that, but didn't have an outfit for Emma and didn't want to buy one. I had to pin the sleeves up, but other than that, it fit her really well! I took these pictures on Christmas Eve. The cookies were ones I had made with Mia at her parents' house a few days prior.  At this point Emma could not sit up on her own, but could balance herself as long as she was leaning against something, hence the present! ;)

   Here she fell back (gently) when I tried to get her to balance on her own for a few seconds, but then she stayed there, looking at the Christmas lights. Looking at lights are her favorite. Maybe one day she could be a model since Tyra Banks is always telling girls to "find the light". Today she was facing the kitchen and when I opened the blinds behind her, she immediately flipped from one side to the other, towards the light. When Michael got home on Christmas Eve we took pictures of each other with Emma -- I mean, Baby Santa! I'm not sure if the suit will fit her again this year, but it's worth a try! ;)

   I get extra pumped for winter now since Emma does much better in cooler weather than in the heat. Too bad is Florida is the opposite of Colorado and is at least 85 degrees 75% of the time. However, I am determined to take her to the beach one day, even if it's in November, and I'm the one wearing the ventilator backpack with a hoodie over it so it doesn't get sand blown up in it and Emma has a baby scarf on over her bathing suit to cover the trach stoma (the opening in the front of her neck). I even have a hand-me-down long sleeve swim shirt for her! But who knows. Maybe she'll be able to be off the ventilator for part of the day by November and taking her to the ocean for a little bit will be easy peasy. I'll definitely blog about that!!
   I think one reason why I am so adamant about taking her lots of places is ~ 1) it's fun! and 2) since she is not able to get social development with other kids until we know that her fistula is healed -and Michael is really adamant on not scheduling another bronchoscopy until later this year, which would roll into next March because of the whole RSV situation* and cold season- I want to give her lots of travel experiences. I want to let her see and touch and hear new things. I want her to feel sand in her hands and cold salt water on her toes and watch all the seagulls flying nearby as we listen to the waves crash onto the shore. If we can't always increase her development socially, we need to at least increase it environmentally!
   *When I say "the whole RSV situation", it is referring to the shot that she has to get five times between October and March. RSV stands for Respiratory Syncytial Virus and it is a Synagis shot (Google is also calling it Palivizumab) that she gets to prevent her and other young kids, or babies who have a higher risk of serious illness, from getting RSV. Especially kids with trachs and ventilators are suggested to not be around other kids during winter months during cold and flu season due to the higher possibility of passing along germs more easily. Some families take it as far as not even having any relative contact during Thanksgiving and Christmas! I'm glad we don't have to be that strict about it. But my point of mentioning it was because if it's cold and flu season, I wouldn't want to take Emma to the hospital in the winter, where there are sick germs lingering, in order to do the bronch. If she can't be around kids at that time anyway, we might as well wait until March 2020 to get it checked.
   Anyway, another reason why I am in Christmas mode already is because I am very excited to take Emma up to Birmingham mid December and I'm planning all of this stuff for us to do including going to the Zoo (and I did check that it will be open) and there is a Christmas parade the day after we get there. She will get to meet a bunch of adult relatives on Michael's side of the family who have only been able to watch her grow through social media. I also have not been to Birmingham in four years, since we were there before Christmas in 2015! So I am looking forward to going as well and seeing everyone again, plus it's never bad getting paid to have a fun week off from work. ;)