Thanksgiving Friday

   This year I worked for 12 hours on Thursday, November 28th. It was a good shift, but I told Michael I wanted to celebrate Thanksgiving at home on Friday so we could enjoy the whole day together. After Michael got out of bed (at Noon!) I ran a few errands, including picking up Emma's inhaler meds, but then had to wait around while the pharmacists corrected the order since the doctor only prescribed it for one month instead of three. A) Our insurance will only cover 3-month supplies of certain meds. B) The less trips I have to make to the pharmacy the better. 

   Back at home, Emma allowed me to dress her up in last year's exact outfit so I can get some "now and then" photos to really see how much she has grown. (For stats: Her last height and weight, taken on Halloween, showed her at 17 pounds, 5 ounces and 25 3/4 inches.) I looked up some crafts that I could do "with Emma", such as coloring pages. She wasn't really into that and cried when I held her hand to draw since she just wanted to keep throwing the markers. The lines on the baby turkey photo were were her own hand/arm movements. At night I started another craft with a pinecone, popsicle sticks, washi tape, and a hot glue gun. It's not finished yet. Maybe it will be by next November! 

   Earlier in the week, I invited my friend Alex (we work together) over to our house since her husband is out of state for a few weeks and I wanted her to have a good Thanksgiving too, and Michael said it was fine for her to come over. I wanted her to be able to meet him and Emma as well, so I'm really glad it all worked out. She was at our house from 5pm-10:30pm and we all had a nice time together. She brought a Spam and cream cheese cracker dip, pumpkin flan, brownies, and drinks with her! I really liked that she watched us do trach care last night and she even moved closer to see how I hold the trach in while Michael cleans around her neck. Emma got a butt soak before her treatments since she unfortunately has a terrible raw spot and diaper rash right now. She cried when Michael put her in the water, but within a minute she was laughing and splashing so much that I had to hurry to get extra towels and he used the syringe to empty some of the bath water. 

   We ate at 5:30pm yesterday, but I wonder if we ate around 4pm last year since in that blog post it shows that we went for a family walk after dinner and it was still clearly light outside. This time the sky got dark as we started eating. 

   ^^ Turkey hand card we made last year. Don't mind all that drool!!
And, yes, in the next two pictures, she put her glasses at that weird angle by herself.

   ^^ Bend and Snap! AKA the Grab and Throw!

    Had to make sure Emma got a "full meal" too.
This year we decided that ordering from Honey Baked Ham would be the same amount of money, if not less, to get them to send us the food, so that is what we did this year. We ordered a ham, green bean casserole, sweet potato casserole, corn bread stuffing, and gravy. Michael also vacuumed the whole house while the food was cooking, and I cleaned the bathroom before Alex came over.

    Last year I was bragging that Emma could balance while sitting for a whole five seconds! Now she is able to sit for 20-30 minutes at a time!! I wonder if next November she'll be running around the house in the AFO's (ankle braces). Only time will tell and we're not rushing it.

    Since there were so many of us who had to work on Thanksgiving Day, we had a potluck, so I brought some extra stuff home to fill the table (and our tummies) such as meatballs, mac and cheese, turkey slices, salami/ham/cheese squares. I also bought a box of Publix chicken wings that morning for Alex because I wanted to be a good co-host and make sure she had enough food that she would enjoy eating while at our house.

  I hope everyone had an awesome Thanksgiving!! It was a really nice one for us. I already know that I am scheduled to work next Thanksgiving too, so we will have another Thanksgiving Friday then too. Michael really likes having holidays "just us", but to me (and with influence from all the recent commercials and Hulu ads) it shows that Thanksgiving and Christmas are all about families being together, so I told him that my parents will come down to celebrate with us next year! It was really nice when I got home, seeing all of the cars lined up along the street, spending time with their loved ones. 

Terrific Tuesday, Documented

   Last year I did a very detailed documentation to show how Emma's day goes at home. It was actually split into two posts because I had so much to talk about. You can see those in these links:
   A Day at Home, Part I   (giving meds and going the daily medical tasks)
   A Day at Home, Part II  (breathing treatments and physical therapy with Grace)

I also did a couple more about documenting a doctor appointment day, which you can find by clicking these titles. --->  She Laughs Without Fear of the Future   That link is also specifically helpful to us because I listed everything that we need to bring when taking Emma on a vacation.
   Please also see  --->  Doctor Appointment Day

   But since Emma's daily schedule has become a lot busier in 2019 with more therapy, sprinting three times a day (breathing on her own without using the ventilator for 3-4 hours), and wearing her new fancy "shoes", I wanted to make an updated photo documentary! All of these pictures were taken on Tuesday, November 26th.
   I got up at 8:40 that morning and Emma slept until 8:55.

   Once Emma was awake, I suctioned her and started her treatments. Then gave her the Qvar puffs and her Augmentin medicine via G-tube. Augmentin is not usually a medicine that is to be taken long term, but Emma has been on it for almost two year, since we got to Michigan for her surgery in December 2017. She will continue to be on Augmentin until we do her next bronchoscopy (hopefully in March) and see if the fistula/hole in her trachea has healed all the way. Augmentin is a preventative medicine to help her not get sick from any bad cold and flu germs she may be exposed to. It has worked so far!!

   Before moving Emma into the living room at 9:40am, I filled up the caddy with a bunch of pink sodium chloride bullets. These are used to clear out the suction tubing after we suction her trach.

   I also cleaned out the suction canister. It's really gross, but when we suction her trach of phlegm (usually from coughing or gagging) it all goes into the canister. We wash it out about once a week.

  ^^ The white medicine next to the baby food is the Augmentin medicine. During this time, I changed Emma's diaper, brushed her hair and put it in two pony-buns (I like her hair out of the way for feedings), pulled the high chair into the living room for Speech therapy, put 9 Christmas cards and 1 bill in the mailbox, and set out the oxygen E-cart for pick up from the supply company.

    Speech therapy was from 10:15-10:45. That was the only therapy she had that day, and none for the rest of the week since she had her other three therapy sessions on Monday. (See previous post.) Her new Speech therapist Erica did feedings the second half of the time, but at first was playing with Emma since that is what she prefers. She does not like being fed, which is a shame, since she really needs to learn to eat and swallow her food. At this time, Michael and I believe Emma will keep using her G-tube for several more years.
   On Halloween we had a doctor appointment with GI (gastroenterology) and he wanted Emma to try switching from EleCare Jr formula to liquid Pediasure- without weaning her from one to the other. We started that experiment, with the eight (?) bottles given to us by the dietician, on Monday, November 18th and it lasted her until the night of Wednesday the 20th. She had no bad affects on it, which is great, so we know what type of regular (non-soy) formula she can go well on. When the bottles ran out we switched her back to the EleCare since we have a handful of cans left (which we have been able to get through WIC) and want to use those up before we start having to buy the Pediasure ourselves. The only thing we had to add to each 8oz Pediasure bottle was 10ml of Pectin, since we had also done a requested "experiment" to wean her off of Pectin and she did not do well with that.

   After therapy, I cleaned Emma up/ wiped her down, and changed her out of her kitty jammies and into a new winter outfit I got for her recently. The shirt has a penguin ice skating, which I got at Target recently for $4.50. I picked a size 18 month, even though she is still able to wear a lot of 12 month shirts, because I also want her to be able to wear it next year. I didn't think it looked too big on her.
   She completed her first sprint of the day from 11am-12:15 (I ate lunch and we watched the newest episode of the 9-1-1 show during that time). Then we did some reading and playing.

   Emma got her AFO's on November 20th (that stands for Ankle Foot Orthosis, aka ankle braces, but I will talk more about those in another post later on), so we did a little bit of practice standing. However, it is really difficult to get her to stand on her own by myself with her Genu-Recurvatum condition, which lets her legs bend every which way- even to the sides, which is weird to see! If her legs only bent forward like normal, it would be a lot easier.

    I don't normally take a nap when I am home with Emma -maybe 25% of the time lately? But this day I needed a nap, and after the AFO standing practice, Emma was ready for some alone time. I think she enjoys it so much because of all the "alone time" she got during her 11 months in the NICU. She learned how to entertain herself and keep herself occupied without crying from boredom. She loves moving herself around on the hardwood floors and often laughs to herself.

    While I was napping, I was still awake enough at some times that I could hear her "talking"/ making her baby sounds. She seems to talk more when she is really happy. I do always hear her ventilator beeping, so I know if there is a problem that I need to get up and attend to. I got up from my nap at 2:15, changed her diaper again and suctioned her, then started her second sprint.

   I often like to make two batches of "milk" at a time so I don't have to do it two separate times during the day. As long as it is used within 24 hours of mixing, it stays good. While I was mixing up Emma's water, formula, protein powder and pectin, Emma was very quietly playing a game called, "Throw the Diapies Everywhere!" I don't mind her throwing soft things around and even kept handing more of them to her when I sat her little body in the basket.

  Shortly after I primed her milk through the bag tubing and cleaned out the G-tube, Emma fell asleep around 2:50pm. During this time I watched more of my current favorite show (Superstore) and the guy from the medical supply company came to pick up the oxygen E-cart. I like that he always calls when he is about 15 minutes away, but that is more for him to make sure someone will be home. A girl on the phone told me that they could not also take the IV pole that we wanted to give back (we only used it for the first few weeks Emma was home before Michael found another way to hang her feeding bag) since we had paid enough "rental fees" that we owned the IV pole. But when the guy was here he said they could take it too, as a donation. Yay, one less item junking up the garage!

  Emma woke up around 4:20 and I started getting everything switched over from the ventilator stand to the stroller so we could go for a walk outside. Emma had her usual "poop gags" when I sat her up after she had been awake for about ten minutes, which may have put too much pressure on her stomach. She doesn't always poop when she does the gagging, sometimes it's just gas. But all the gagging (which I sadly can't do anything about, you just have to let it pass- she gets more upset if you try to suction all of the saliva out of her mouth) soaked her shirt, so I put a new top on her before we left. I suctioned her again and changed her diaper and we were off!

 After more coughing and all the movement from the stroller caused Emma to need to be suctioned again. When she's in the stroller we keep the suction machine in the under carriage and the little container of sodium chloride bullets in the cup holder. She seemed kind of "meh" about the stroller ride that day- not unhappy, but not laughing when we went over the big bumps like she often will. However, she really seemed to enjoy sitting on the bench, watching the ducks in the pond.

   She sprinted during the whole stroller ride and we stayed in front of the pond until it got dark (5:45pm) and the mosquitos suddenly started swarming!!
   We did her second feeding of the day at 6pm and finished her sprint at 6:30pm. I took a close up photo for you to see how messy it gets, especially for a kid with a trach.

   See all the bananas around the trach area? I guess in that scenario it would have been a good idea to use a bib that was tighter around her neck. This is why I feed her while she is sprinting so there is less medical equipment for her to get her sticky hands on, but Michael thinks that any activity while sprinting is too hard for her.
   Michael arrived home at 7:30pm and then he played with Emma (using the pup up fruits, xylophone, and drums) while I was taking my shower since I had to work the next morning. She kept laughing when she figured out that she could get the drums to play if she kicked them hard enough.

 We moved Emma into her room earlier than usual since Michael was tired and wanted to go to bed. Normally he takes a nap when he gets home, but got home late this day. But him going to bed early means I also get to go to bed earlier since all of Emma's "night chores" are done sooner. I read her a couple books (didn't get to the Grandma Greenwood book that night) while her treatments were going and Michael did everything to get the ventilator switched over to fresh tubing and a clean humidifier. We did trach care, which needs to be done every single night, and a trach change, which is done once a week, and she was in bed by 9pm! Sometimes we don't start her treatments until then, and that way she sleeps on our time schedule.

^^ Trach change: taking the old one out and putting a clean one in!

The end! I have decided that after I post all of the Thanksgiving and Christmas tree photos over the weekend, I am not going to blog again for a while. Sometimes it feels like something I "have to" do and then becomes stressful and less fun. Although, I do really have the documentation for later.