The Second Time

   At 7am this morning, I got out of bed because I heard Emma coughing over the baby monitor, and by 7:05 I was already on the phone with Michael. A lot happened in those few minutes. It is kind of a blur, or maybe my brain is already trying to erase it from my memory, although Michael says it will haunt me for a long time. I turned her milk off (Kate Farms formula feed via G-tube), which I do every morning when she wakes up, especially when she is coughing or gagging from a full tummy. Her foot probe monitor alarm didn't go off until I walked in, but it was still a high-ish number (87). It doesn't start beeping until it hits 88.

   I don't remember exactly how she looked when I walked in, but she was laying down and didn't look good, because I immediately fumbled to switch her oxygen tubing from the regular one liter, which is connected to the air concentrator, to the tubing connected to the oxygen tank, so I could quickly crank it up to eight liters. That's as high as it can go and she needed all of it!!

   I looked over and the foot probe monitor that tell us her saturations and heart rate was off! How could that have happened!? We often mention our worries of her turning purple, but her skin was more of a gray coloring. I sat her up against the back of the crib, with her big, blue bunny next to her to lean against. I patted her cheeks a bunch and yelled at her, "Emma! Wake up!" Her eyes kept closing. I grabbed the suction machine and each time I pulled the catheter back she twitched, but didn't wake up. "Not today," I whispered. "Not right before Christmas!"

   I hated that everything we had practiced in the past seemed to slip my mind. I pulled Emma's limp, gray body into my arms, with her head over my shoulder, and hit her on the back a bunch of times (as if I was burping a baby), then rubbed her back really aggressively several times. I held her up in front of me and the color started coming back into her face and her eyes were open again. I quickly patted and rubbed her back some more until she was even more aware, yet still kind of out of it. But our baby girl was alive. Then I broke down crying -loudly- while holding her so tight. 

   After things had settled down, I noticed that her milk was still running. I guess I had accidentally turned her probe off instead of the milk. I have turned the wrong device off before when I'm in a tired panic. Once I was composed, by 7:05am, I called Michael and told him everything. By this time, Emma was really red, breathing heavy, her heart was beating fast, she looked very tired, making crying faces without actually crying.. All normal reactions for this instance. Michael was on his way to work, but turned around and came home. He arrived at 7:24 and grabbed Emma from me so he could hold her. 

   Her combo nebulizer was already going (Iprotropium Bromide and Albuterol liquid medicines), which attaches to her ventilator tubing. We changed her diaper, and Michael tightened her trach ties just in case. He stayed for almost an hour before leaving again for work. I'm sending him hourly updates and pictures now. Emma is sleeping again and probably will for a lot of the day, although she was already asking to sprint (breathe without the ventilator) an hour after her incident! No ma'am. I think it's an "ice cream for breakfast" kind of morning!

   We usually assume that she got water down her trach, but the tubing was hanging outside of the crib slats, and that is where the water usually settles. But an hour later Michael realized that the humidifier wasn't turned back on last night after our walk (when we took the ventilator off the stand to take it outside/ on the stroller), which means there was almost no condensation in the tubing all night. So what caused her to pass out? He says it can be a really small amount of water to make her "drown". I thought maybe she coughed up a big phlegm chunk and then choked on it, because she seemed like she was trying to cough it out when I was holding her. Maybe she had a clog in her trach, and somehow me hitting her on the back moved it? We aren't sure, but we are just so glad and grateful that she is okay now. Michael gave me a really nice hug before he left and said, "Thank you for saving her."

   This post is called "the second time" because the first time it happened, in February 2020, Michael found Emma unconscious since he was at home that day and I was at work. His story is a bit more scary and she was taken to the hospital via ambulance. ^^ Click the link to read about that incident. ^^

Gait Trainer

   Along with the wheelchair evaluation that we took Emma to on May 9th, which she was doing trials for in therapy in July, that evaluation was also for her to get a customized gait trainer. I describe it to people as "a walker for toddlers". It's so cute! Emma got the Rifton Pacer Mini. We asked for hers to be hot pink! The one she tried at the evaluation was the small size, but everyone agreed that the mini would be better for her. She did cry at first when she was put in it. I'm not sure if she didn't like it, or she was just tired, because we had to wake her up at 6am for the appointment, but once Michael helped move her legs and feet she seemed to become okay with it. She grabbed the handles all on her own!

Proud girl!  "Did you see what I did, Mommy?"

   Emma actually had a little practice with a gait trainer before the evaluation, but it didn't look quite like that. It actually looked more like a baby walker, but the one in the evaluation- the one she has now- is more for first time learners. It has the "seat" piece between her legs for when she gets tired, but it's actually more to help keep her posture upright. There was the option for the Rifton Pacer Mini to come with a big curved handle on the front, for the parents to be able to push the kid, but we said we didn't want that. "It's all you, boo!"  (They did end up giving it to us anyway, but it is easily detachable, and does end up being very helpful when I'm pushing it from the apartment to the car, and into the building for therapy, while Michael is pushing Emma in the stroller.)

   So Emma's first time trying the cutest little walker was in physical therapy a few days earlier with Sara, on May 5th. (Sara was the physical therapist she had before Liliana.) She had Emma start by sitting on a stool with the walker behind her, and lift herself up by holding onto the sides. This one was different because it didn't "cage" her in, so she could easily fall forward and hurt herself if this was the one we got. For that therapy session Michael stayed in front of her and she walked towards him. 

  Emma was wearing a pretty dress at this session because afterwards we went out to eat for our 11 year wedding anniversary a couple days early. (<< click that link if you want to see some of our wedding photos!) I usually pick the place -we tend to lean towards Italian-, but as the time got closer, I wasn't feeling it. Michael decided that he would like to find a place for us and he picked such a good one! It was kind of upscale, but cute and comfortable. We shared the duck confit flatbread, Michael got a steak, and I quickly learned that I love butternut squash ravioli. The most perfect part was that there were not many people there and we got a cool corner area with a beautiful chandelier! Romantic!

  **For a wheelchair update though, Emma's trials in physical therapy with Liliana were with an E-Fix Power Assist motor. She is far too small, and even the TiLite Twist wheelchair is too heavy and too wide, for Emma to push on her own. She needs the motor to be able to move it around. However, we found out in July that all insurances deny the motor for about a year until you can prove with documentation that the child/person cannot move the wheelchair on their own. Then you have to apply for the motor after that. Michael was fuming when I told him and said, "That is such a waste because her wheelchair will just be sitting in our garage that whole time!" We aren't even sure if our insurance will cover it at all, even after a year, because it might be something that isn't "under our benefits" according to the person I spoke to when I called our insurance company about it in July. They told me that we can try to appeal it through Emma's pediatrician, but that doesn't guarantee anything. And the motor is a really expensive add on. That made Michael extra mad. 

  Anyway, Emma's gait trainer finally arrived at our apartment on Monday, August 15th at 11:30am! It was dropped off by Eric, the same consultant from NuMotion who we met in May. He helped me for about an hour, trying to figure out the best way to get all the straps and the "seat" situated so Emma would be in a good standing position for walking. She did not like standing that long and kept signing "all done" with tears in her eyes. I gave her lots of kisses and told her "just a minute, you're doing so great", but the minutes kept on coming! When she stands, she tends to stick her butt out, so Eric and I were trying to come up with ways to avoid that. How could we move the seat so it wouldn't let her stick her butt out?

   By the way, the reason I keep putting the word seat in quotes is because it's not really meant to be a chair for her unless she has been walking for a while and needs a break. She should be standing the whole time, with her legs straight, and a few inch gap between the seat and her crotch, especially since she doesn't usually use it for a long time at once. The whole point of getting approved for the gait trainer and the motorized wheelchair is that, say we are at Disney World for the whole day a few years from now: Emma would use the gait trainer as long as she could. Maybe she would take appropriate breaks in the long lines and use the "seat" to rest her legs, but eventually her small body and lungs would get worn out and need the motorized wheelchair to get around for the rest of the day. Or, at least, need it for a few hours before deciding to switch back to the gait trainer, and sitting in the "seat" during the firework show! :)

   That night Michael worked with her and the gait trainer, but she already had enough from the morning. However, next night Michael worked with her again and she had a completely different attitude! She did so well and made it all the way around the kitchen loop in our apartment! I did lure her with a big crinkly bag, and Michael kept helping move her feet (he said he didn't do much). Emma barely had any tears until the very end when we told her she had five more steps. 

The first night! Ha- those eyebrows (in the left picture)!

   The following day, Wednesday, August 17th, during physical therapy with Liliana, it was an adjustment trying to figure out the best way to work with Emma in the gait trainer. Liliana likes to hold Emma by her hips, which is really good, so Emma has to do all of the leg work herself, but there are so many straps, and bars, and cushions in the way. So we put the gait trainer to the side and continued to work on the basics. Liliana was definitely correct in saying that Emma has to learn to walk (and really learn to shift her weight from one leg/ one side of her body to the other, in order to take each step- isn't it crazy how we don't even think about that when we walk!?) before she can fully use the gait trainer. 

   We bring the gait trainer to every session, but last week Emma was doing well with taking steps and the time went by quickly that we didn't use the gait trainer. However, on Wednesday, August 31st, Liliana made it a priority, and took the "seat" out that way she could hold Emma's hips while Emma walked towards her and still had the support of the side handles. She wrapped the Benik short straps around her hips and the top of her KAFOs, low enough for stability, yet still high enough that Emma was able to take her usual "kick steps". 

   A few minutes before the end of the session, Liliana was so impressed to see that Emma now (over the past three or four weeks) has been putting objects together, including her suction tubing when she needs to be suctioned. In July, Michael started putting lip balm on Emma's lips after brushing her teeth at the end of trach care, and she can -eventually- put the cap long back on the lip balm.

  Emma's purple TiLite Twist wheelchair should arrive later this month, but Michael might take it directly to the storage unit because it would take up too much space in our small apartment, especially since Emma can't use it without the power assist attachment.

Pre-Halloween (2021)

    More fun pictures from last year! Hooray! Or should I say.. Boo-ray! ;)

   There is a post I have in mind for next month, but if I don't post several mini-posts before then, I will have about 500 pictures to talk about and show off. That is far too many, and quite an overwhelming task, which ends up not happening. So breaking it up is a lot more fun. I thought tonight would be a great time to post this one since Target just put out their Halloween decorations! 

   Last year we didn't get to really celebrate Halloween, because on October 31st we were driving back from Delaware after Emma's leg surgery with her sporting a fancy new hip spica cast. One fun thing from that day was that she did try a small amount of vanilla ice cream for the first time (from Dairy Queen)! Although it's a little bit confusing that she didn't get sick from that since she got sick very quickly when we recently tried giving her vanilla milk-based Pediasure through her G-tube.. 

   In late September 2021, I did a couple quick photo shoots with Emma and some Halloween decorations as they became available in stores, along with a few favorite items that I brought with us. Luckily, she was in a happier/ more smiley mood the second time I tried. Some days she just isn't "feeling it". 

   A couple weeks later, my best friend, Mia thankfully urged me to tap into my creative side and do actual Halloween dress up photo shoots of Emma with whatever I could find, so I used Target decorations, makeup I already had, and some non-expensive costume pieces from Dollar Tree and Walgreens, along with Emma's own clothes, to create the deer and witch attire. Later, I turned some mini Polaroids that I took of her in those costumes into scrapbook cards!

   I really don't think I will be getting any Halloween photo shoot pictures of Emma this year. I cannot buy any decorations this month (meaning September). We really need to save all of our money right now for house furnishings. And all of the decorations in the pictures I just showed are back in storage because we were told we would be moved into the house at the end of July.. (The contractor recently told Michael that the consultant never should have said that since the house was never going to be ready that soon.) But Emma has been really into her two singing camera toys lately, so maybe she's trying to tell me something? ;) We did already reserve our spot for the zoo's Halloween event! I don't think Emma will have a costume for that though- we'll all wear Halloween themed shirts.

   ..Aaand then I put green eye shadow all over her face, because if you're going to be a witch, why not be Elphaba, AKA the Wicked Witch of the West! Emma didn't mind me putting the makeup on, but she doesn't like having her face wiped, so it took a while to slowly get it off later. I kept giving breaks.

   On Saturday, October 16th, the weekend before we drove up the Delaware, we went to the Fruitville Farms Festival. There were a few places around Sarasota to choose from, but we went to that one because that is where my friend, Tonia, and her sister, Kendall, who was visiting from studying abroad in England, were going to! Before that, Kendall had been studying in Australia! What a cool life, mate! Michael liked that place so much that he said he would like to take Emma back there again this year. I just looked up the October dates, but we're not sure when we'll be able to go. That's going to be a busy month for us, with moving and such! How will we ever fit in all this fun? :)

   I read a really nice affirmation this morning about that: I feel relaxed and centered. I have plenty of time for everything. *yoga girl emoji* I feel calm even typing that out!

   Here are our pictures from last year (2021) at the Fruitville Farms Festival:

   There were a bunch of things that we didn't get to do because it was hot, and Emma and Michael were getting heated fairly quickly. I think we were there a total of one hour. However, I am not going to list all the things we didn't get to do because those will probably be the first things we do this year! We did go down the area where people were selling homemade crafts and items. I saw a pretty dress for Emma, but the price they were asking for was a lot higher than I was wanting to pay, and we really don't put her in dresses very often. By the time we got to the festival, Tonia and her family had already been there for a while, so we didn't get to see them long, but it was great seeing them nonetheless. 

   Before we left, while Michael and Emma were still fine hanging out in the shade, I waited in line to hold a couple of skunks! Once I sat down though the woman said I actually wasn't allowed to hold them though, (bummer) because they too get overheated easily and can quickly reach a body temperature of 102. It's hard to tell, but in between the chairs, behind the mesh parts are tubes blowing air. That's why the black and white skunk is facing that way- his face is against the mesh and the tube. I guess they are a different type of skunk because the last time I held a skunk- yeah, I said that!- they didn't have any body heat issues, and that was in the middle of the summer. (I'll post that picture in a minute.)

   Skunk story ~ so in July 2015, two summers before Emma was born, after spending a fun week at the beach with Michael's parents.. On our way home, Michael wanted to stop at the Seacrest Wolf Preserve in Chipley, FL. I don't have a link for a blog post because on their website it said you had to bring a disposable camera and you were not allowed to take digital pictures, so we followed those rules. I quickly became annoyed when I saw that we were one of the few people who brought disposable cameras and the employees did not enforce that rule at all. Anyway, after we saw the wolves and took lots of pictures of/with them, we got to see some smaller animals, which included holding skunks (of course, the stink bags had been removed) and feeding grapes to raccoons!! By that point we began using our phones to take pictures.

   And while scrolling through Instagram to find these old pictures, since I was just talking about looking for our new Sarasota house in the last posts.. Here are two pictures from Spring 2016 when our realtor, Anita Wise, was helping us look for houses around Orlando.

   Lastly, for Pre-Halloween 2021 events, here are a few more pictures of Emma in that cute, but tighter-than-I-thought-it-would-be, pumpkin sweater. She only got to wear it those two months, and then I had to donate it. I did buy it in a smaller size than she normally wears (probably a 12 month instead of an 18 month), but when I held it up, it looked like it would fit her just fine. Technically, yes, -the sleeves were perfect!- but it was a tight squeeze around the tummy. Little pumpkin rarely complains though. :)

For more cutesy Trach Life Family Fun ~

Here you can see Emma's first "real" >> Halloween Day << when we celebrated in 2020!!
As well as when we took her to >> Boo at the Zoo << near Cocoa Beach shortly before that.
I was so excited to dress up 4 month old Emma >> in the NICU << October 2017!! :)