*** This post is brought to you by
Go Fund Me. We are not sponsored by them, but we did start a page for Emma today. It is something that Michael and I have debated doing since Emma was born, but for whatever reasons, it wasn't until today - when a friend suggested it - that we signed up! Your generous donation will help pay for her ongoing medical bills, as well as other supplies required which insurance does not cover. You can click on the Go Fund Me link above or --->>
right HERE!! ***
Now for the blog post ~
Depending on the day, it either feels like winter or summer, and everyone is getting colds and having bad allergies because of it. This is a week's forcast lately: 88, 82, 55, 63, 90, 84, 77. When I say "everyone is getting colds" I'm talking about people that I work with. Emma hasn't been sick, but Michael and I have been sneezing and blowing our noses a lot this weekend. But here are some various updates that I have since mid January.
Edit: I just realized that I had not posted Emma's one 2020 New Year Day photo at the end of the recent
"Christmas at Home, 2019" post, so I added it in, but we never did the "ball drop" for her like last year. Still it's so great to see how she has grown, and how much taller she is now, compared to
one year ago. I also added another picture of our friend, Dawson, meeting Emma. I also added two Behind the Scenes living room photos from the last post,
Emma's First Interview!!
At the end of January, I went on a three-night cruise with my family and a few days after getting back, ended up getting the flu!! Of course, this put Michael and I in a panic because we definitely did not want Emma catching it from me. And I didn't want Michael getting it either. I got Tamiflu prescribed at a doctor appointment, and also picked up Tylenol and Motrin. We took strong precautions- if I came out of the bedroom (to get food), I had to wear gloves and a face mask. If Michael came into the bedroom (to take his showers and change clothes), he did the same and I also put my face mask on. I did not go into Emma's room and actually spent some time sitting outside in the yard so I could watch her play on the floor through her window.
Luckily, we have a split floor plan, so Emma's room is as far away from our bedroom as she can get. Michael slept on the couch and did all of Emma's trach care and treatments by himself each day. Trach care is supposed to be a two person job. Obviously he was exhausted by the end of it, feeling like a single dad. Around that time I had seen a commercial for Lysol laundry detergent to use specifically after being sick, so Michael picked up some of that and Lysol spray (usually we just have the wipes). So I did a heavy duty wipe down of everything in the room, and washed all of the bed sheets and even some clean clothes in a laundry basket since they had probably been coughed on several times during the week. Michael and Emma never got the flu, thank goodness!! I don't have any pictures from this week (January 29-February 4th), but wanted it mentioned.
Because Emma has been doing so well scooting around the room, even when she is sprinting with her trach, and not connected to her ventilator, she still gets to the point where her G-tube is threatening to pop out. So Michael started using the baby backpack, which can simply lay on the floor and move around with her. The backpack came with the feeding equipment. She doesn't normally wear the backpack, but it looked cute for the picture. Kids who can walk around and don't need the ventilator, but who are still G-tube dependent, wear the backpack all the time for continuous feedings. Some kids
can eat regular foods like crackers and sandwiches, but don't eat enough calories to keep their weight up, so they need the G-tube with them at all time for extra nutrients. Emma only gets about 1% of her food from baby food since she is still getting speech therapy and learning how to eat and swallow. If Emma was in school (which we don't plan on starting until probably August 2022 at the earliest when she is 5 years old), she would need to wear the backpack all the time and we would probably have extra things/ tape holding her G-tube to her stomach so it wouldn't get ripped out if the tubing got caught on something, or pulled on by a curious classmate.
In all of our prep for our annual Spring cabin trip in the mountains, Michael wanted to switch things up and get an actual hiking backpack to carry babies/ kids (it holds up to 49 pounds! Emma weighs 18 right now) instead of using the ventilator backpack he made and wore last year, carrying Emma in the "baby bjorn" thing in the front.
This trip is mostly annual, and we do already have a plan in mind for April 2021. We started in April 2017 for
our Babymoon when
I was still pregnant with Emma, before we found out she was going to be different
aka extra special!!, and of course we didn't go in Spring 2018 because she was
still in the hospital, but her very first vacation was to the North Georgia
mountains last March.
Here is Michael's new Osprey Poco AG Plus child carrier. I was very glad that it didn't cost nearly as much as I thought it would, plus it was on sale when he got it! He's good about waiting for a sale.
Some quick photos from a belated Valentine's shoot, but I absolutely love the
super cute ones from last year even more. Especially those ones where she is holding her own cheek. Ahhh! I've learned that my lipstick kiss marks just look smashy, so I need to stop doing that. Some of the photos from this February make her look like the Joker!!
And then she proceeded to crinkle/ play with her Water Wipes bag for the next two hours!! :)
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It was a very sad day when Emma learned that she had ripped the blue cuff attachment off of her trach. The blue cuff usually goes where my hand is on the photo below. It was so sad to see her keep reaching for it and try to put it in her mouth (she uses it as a pacifier), but then nothing was at the end of the thin little tube. It is necessary to the trach since that is how we deflate the balloon inside her airway, so we can take the trach in and out each week, meaning we had to throw the trach away that night. Doctor Green in Michigan always told us to keep her balloon deflated, which is how she is able to make her silly squeak sounds that we love hearing so much. We believe it broke because she likes to put the thin little tube between her teeth, so after doing that a bunch of times a day for a year, it snapped off. About a week later another cuff broke off, so we had to order another trach! Luckily, this time the medical supply company told us we can get one new trach every 30 days, but a new order has to be filled out by Pulmonology, and since Emma's trachs are custom made, they can actually take 4 months to arrive at our house once the order is sent.
Another thing Emma has broken recently is the end of her suction catheter- two actually. I don't have a picture of it anymore, and it has been several months since she broke it. But if you look in the next two pictures, the suction catheter is between her legs, so between the smaller light blue piece and the bigger white piece, that is where is broke because she likes to slam is around on the ground. We got to the point where we had to take it off when she didn't need to be suctioned. Luckily we get four of the suction catheters in her medical supply boxes every month, so those are less of an issue when broken. And in case it is not self-explanatory, the suction catheter connects to the suction canister tubing so we can suction her trach when she coughs a lot and her breathing sounds "crunchy".
There was a Tuesday in February that Michael and I both had off since Emma had an eye appointment. She got her eyes dilated at the office before her eyes were checked. Can you see how big her pupils are in the close up photo? I can see "baby Rachel"/ a baby version of me in that face. Her prescription was lowered a little bit, so it's not as strong, which is good, and this time I ordered light pink glasses since we had the option to change the color. I'll talk more about that when she switches from the aqua glasses.
However, before the appointment, Michael drove us to a warehouse area where he sold some of our camping gear to a guy from Craigslist and then we ran over to the mall for lunch. After the eye appointment, we went on a family date to Seasons 52 using a gift card from Christmas. This was Emma's first time using a booster seat/ high chair at a restaurant. Usually she stays in her stroller or Michael holds her at the table. She had the ability and core strength to sit up in the chair, but really preferred laying back and looking up at the light bulbs.
The last main topic of this post is about the LPA: Little People of America foundation. As well as being part of the main group on Facebook, we are also part of the Florida region/ Jacksonville/ Orlando/ Tampa area page. They do have a lot of weekend trips to the beach (2 hours away), but Emma can't go to the beach (or at least Michael hasn't been comfortable with trying it yet, even with all of my urging and attempts at persuasion since October) and they usually fall on a weekend that I work. Plus, since those weekend trips required staying in a hotel, it would cost us at least $300 to go. $450 actually, since we would need to renew our LPA dues for the year. However, the second I saw that they were have a community picnic in Orlando on a weekend that I had off, I threw it on the calendar. I reminded Michael about it every so often, and we were able to attend! This was on Saturday, February 22nd. It also helped that we already knew three of the people who would be there.
^^ The three people we already knew, who we met from the LPA/ Potentials Foundation in July 2018, are on the far left in this picture directly above: Jim, Sherry, and their daughter, Allie, who is 22 years old- in the striped sweater. The other woman is Patty, one of Allie's friends who we met at the picnic, and behind Emma is another Michael- he and his wife, Aimee, are the admins of the group.
^^ Aimee is on the far left of this group photo. Although Michael and I did introduce ourselves to Aimee and Michael (there was actually a third guy there named Michael too!), we kept to our group and mainly talked to the people we already knew. Being at home all day has kept us introverts, I guess. But you think we would be the opposite? Human life!! I do get a lot of adult interaction at work though, where I spend half of my time anyway.
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The remainder of these photos are ones I love from my days off when Emma will snuggle in my lap or fall asleep on my chest, and of when we sit on the bench in our neighborhood by the retention pond and watch the ducks until the sun starts to set. Plus a new hairdo that I tried on her:
^^ on the park bench!
Honestly, these are my favorite times.
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