A Day in the Life- Coronavirus

I have done a few "Day in the Life" posts over the years and I figured that this crazy time in life might be a good time to do another one.

7:30

I am the first one out of bed in the mornings. Sometimes Kaylee is awake in bed reading, but she likes lazy mornings so she usually lounges in until late. Thanks to Trikafta(!!!) I don't need to beeline to my nebulizer. Instead I go to the kitchen and brew some coffee. I then sit in the garden and catch up on the news. I have never been much of a news person, but there is so much going on in life right now I spend a few minutes each mornings scrolling though the news online.

8:00

Kaylee is usually out of bed at this time. We make breakfast and she does a bit of school (we are doing a  bit over the summer because the school years was so insane given that the schools shut down before everything was in place for online learning. If she isn't doing school she is usually lounging and reading. We also slowly get dressed, make beds and have a lazy morning getting ready for the day. 

9:00 I do my treatments an hour and a half after waking up. Can you believe it!?!? I feel 100% fine all morning and never feel like I NEED to do treatments, but I still do them without fail. 

10:00

I start tutoring online. I haven't updated in a while, but I actually did start my tutoring business and then had to transition to online tutoring as coronavirus started to spread. I do intervention for dyslexia and I absolutely love it! It used my teaching background, I get one on one time with students and I absolutely love my job! Depending on the day of the week I work between 1-4 hours on any given day.

2:00

On my longest days I am off work at this time and can rejoin my family for the rest of the day. We try to spend time in the hammocks or the garden and when the weather was nice we would do walks and bike rides. It has gotten a lot hotter and some days we end up staying in until evening. We have started doing yoga as a family. I have also been using resistance bands. My exercise routine got sidetracked by coronavirus and the heat.

5:00

My husband and I cook dinner every night and Kaylee helps sometimes. My husband and I both love cooking and we have had so much fun trying new recipes. It reminds me of life before kids when we would drink a cocktail and cook together in the evenings. 

7:00

The weather has usually cooled down by this time and we go to the garden to weed, pick produce, run around a bit (Kaylee) and deal with any garden pests. 

8:30

We spend the last 30 minutes of the day doing movie night. We watch part of a movie and eat popsicles before getting ready for bed.

9:00

Kaylee gets ready for bed and I do my evening treatments. I then lay in bed and read to her. When Coronavirus started I wanted to spend some time reading classic stories to her. We started with The Secret Garden and then moved on to the Little House on The Prairie series. We are currently on the third book. I don't think I ever read LHOTP as a child, but I adored the show. Reading the series I am kinda shocked at how horrible Native Americans are portrayed in the book. Yikes! There are lots of teaching moments in that series. 

After I read, Kaylee gets 10 minutes to read her own book before lights out. My husband and I either watch TV or sit and talk until 11:30 when I go to bed. 

Our lives aren't overly exciting at the moment, but it is such a crazy time in history I wanted to give a sample of daily life that I can look back on when all of this has faded into memories.

A Day In The Life- Kindergarten

I wrote a few blog posts about our daily routine when Kaylee was a newborn, about one year, and again in preschool. I love looking back at the old posts and seeing how much (or little) my day to day life changes as Kaylee gets older. Our life is definitely not very entertaining on paper, but keeping with tradition here is a rough idea of what our day is like this school year:

5:20

• My alarm goes off and I quickly get my bathing suit on, pull on sweats, drink a glass of milk and drive to the gym.
• I swim for about 30 minutes, shower at the gym and come home.

6:30

•  I arrive home from the gym . Sometimes Kay is in bed waiting for me when I get home. Sometimes she crawls in bed with my husband as she waits for me and when I am super lucky she is still asleep!! Regardless, I start my treatments once I get home.

7:00-7:30

• I usually brew a cup of coffee for me and then start breakfast for everyone.
• I also do morning chores like empty the dishwasher, clean the breakfast dishes, and sometimes throw a load of laundry in the wash.
• Kaylee usually likes to draw, color, or read before school. The kid loves lazy mornings,

8:20

• By this point I have usually convinced Kaylee to get dressed, we brush her teeth and I do her hair.

8:40

• Kaylee has to double check her "school list" which is a chart Kaylee made (by drawing rather than writing) in the beginning of the year. It has all the essentials she needs for school including her school folder, water bottle, snack, etc.

9:00

• I drop Kaylee off at school. I always wait in line with her and then walk her to her class. She kisses me goodbye and I leave.

9:10-12:30

• I try to run errands, schedule appointments, and volunteer in her class during this time. When I am sick I try to SLEEP while she is gone which is a huge advantage to Kinder...I can get so much more sleep when sick. A few days a week my husband is home when Kay is at school so we get to spend time together which is really nice.

12:30

• I pick up Kaylee. There is a pretty big group of kids (and parents) that stick around after school to let the kids run around and play in front of the school. We almost always stay for about 30-60 minutes.

1:30-4:30

• We go home and eat lunch, go to the library, go to the park, read books, etc. We really do not have a whole lot of consistency to this part of our day.

4:30-5:30

• I make dinner and Kaylee helps on occasion. Often Kaylee does her homework while I cook so I can help her while she works at the kitchen table.

6:30

• If we eat early then I will do my treatments before Kaylee goes to bed. I much prefer this schedule because sometimes I am so desperate to fall asleep after putting Kay to bed and treatments feel like torture because I am so tired. And if I am not too tired, but my husband is home I prefer spending some alone time with him over spending our alone time doing treatments. However, depending on our afternoon plans I can't always pull this off.

7:30

• Kaylee gets ready for bed. We read every evening. Sometimes she wants to read to me and sometimes we take turns reading to one another.  I tell her a story (which is a tradition we have had for so long now I can't even remember when it started). Finally, I give her a counting challenge. One time when I was in the hospital my husband would count to Kaylee in Spanish until she fell asleep. When I finally got home she wanted me to count to her still so I counted to 20 in Spanish each night for her. Now that she is older I have her count to me (sometimes 1-100, sometimes by 5s or 10s, or I will tell her random numbers like count from 160-190).

8:30

• Kaylee is in bed and I do treatments if I haven't already. Depending on my husband's work schedule I either hang out with him or have a quiet evening to myself.

10:00

• Go to bed!

A Day In The Life- Preschool

I wrote a blog about our daily routine when  Kaylee was a newborn and again when she was about one. I loved looking back at it and was shocked at how long it took to do my treatments! I forgot that I had to break them up throughout the day because a baby's attention span is so short. I decided I would do "A Day In The Life Preschool" version since I know someday these moments will seem like such a distant memory. So like any "Day In The Life" series this is a rough idea of out day because as we all know children often have their own agenda.

5:20

• My alarm goes off and I quickly get my bathing suit on, pull on sweats drink a glass of milk and drive to the gym.
• I swim for about 30 minutes, shower at the gym and come home.

6:30

•  I arrive home from the gym and my family is still sleeping. I start my Vest and all my nebs.

7:00-7:30

• A very sleepy Kay comes to find me in the living room. (Why are kids so darn cute when they first wake up?) I am usually almost done with treatments, if not completely done. If she gets up before I am done I let her watch Daniel Tiger until I am done.
• I usually brew a cup of coffee for me and start breakfast. I always let her choose between eggs and oatmeal. I do not have CFRD, but I don't do well with sugar in the morning so breakfast is never something convenient like cereal. Even my (and Kaylee's by default) oatmeal has to be a mix of oats, chia, ground almonds and flax meal because straight oats cause issues in the morning too. The older I get the more complicated my body gets!  
• I also do morning chores like empty the dishwasher, clean the breakfast dishes, and sometimes throw a load of laundry in the wash. I am so bad at letting laundry pile up.

8:30

• Kaylee gets dressed, we brush teeth, and I always do her hair (having her hair off her face means she touches her face less often which is better for controlling germs even though she has no idea that is why I do it. I am trying to be germ cautious without making her realize it so that she doesn't become a germaphobe). Then we hop in the car and go to preschool.

8:45

• Kaylee likes to be the first person in line so we are usually the first people there and I let her play on the playground until school starts. There are a couple other early birds so I get to chat with some of the other parents before school.

9:00-11:30

• Preschool! Kay goes to a parent participation preschool so I am there working twice a month. I am also the class mom so I go to all holiday parties and any big events so I feel like I am there a lot, which I love!
• If I don't work at the school I usually try to make phone calls or other boring errands that aren't fun for Kaylee. On days my husband is home we sit around and drink coffee.

11:30-12:30

• Pick up and come home for lunch.

12:30-2:30

• We either go to the park, ride bikes, take a walk or run some errands. I usually do some chores (aren't house chores endless?). Really, we have no consistency during this time. On my Cayston months I do my afternoon nebs.

2:30-3:30

• Quiet time! Kaylee plays independently and I get to rest as well. We both really need quiet time or we both get grumpy!

3:30-5:50

• Kaylee has a snack, plays and then we get dinner ready (Kaylee usually helps).
• My husband usually gets home right before we have dinner although his schedule can be all over the place so a few days a week he misses dinner.

6:00-7:30

• Kaylee and my husband play and I clean up dinner. I often do treatments during this time or if I join in I will do treatments after she goes to bed. If my husband works late I usually do treatments after Kaylee is asleep so then the two of us play together after I clean up.
• Kaylee picks out her clothes for the next day and I hang them on her doorknob so she can get herself dressed in the morning.
• We do a five minute clean to make sure all her toys are cleaned up before bedtime.
• Kaylee has a small snack before bed.

7:30

• Kaylee gets in her pajamas and brushes teeth.
• My husband and I read books (mine are in English and his are in Spanish) and then we each tell her a story (also in English and Spanish). Mine usually incorporate something we did that day, after telling stories every.single.night for years it is hard to be creative. Then Kaylee stalls as much as humanly possible.
• Finally, Kaylee goes to bed!

8:30

• I do treatments (if I hadn't already done them)
• I set out my gym bag and everything I need in the morning.
• I take all my pills
• I eat a snack so I can take Orkambi (my morning dose is with breakfast)
• I also do the evening chores like run the dishwasher.

10:00(ish!)

• Bed!!!

CF Awareness Month Blog - Home Life

I am not in school anymore and since I had a late diagnosis I never had to deal with CF and elementary school. During junior high and high school I was really healthy and CF did not play a role in school at all for me. We never told any of my schools that I needed enzymes and I just carried them in my pocket (naughty naughty!) so CF really wasn't part of my school life at all. I decided to alter this topic (Can I do that?!?) and do a day in the life of a CF mom since CF plays a big role in my life as a mommy.
The schedule of a CF mommy to an almost 11 month old:

6:00am

• Wake up to a squeezable little face inches from mine cheerfully chanting, "hi!" until I open my eyes. 
• I often lay around in bed for 20 minutes while Kaylee crawls all over me (I hate waking up).
• Get Kaylee and myself dressed and ready for the day. 
• I do Albuterol because I just feel so much better when my lungs are open. Kaylee plays on the floor in the living room with me while I neb.

7:00am

• Make breakfast for both of us and we sit together to eat. Kaylee takes forever to eat (we do Baby Led Weaning) so I often sit and chit chat with her while she finishes.
• Clean up breakfast
• We go back to the living room where I do the rest of my treatments (Vest, HTS, Cayston) while she plays.

8:30am

• Sterilize nebs
• Play time with Kaylee- usually we listen to music (she knows how to turn on the cd player and she is pretty obsessed with dancing), puzzles, blocks, or she practices walking.

9:00am

• I use my juicer around this time and Kaylee "helps" me get the veggies out of the fridge. (In other words I open the fridge and she pulls all the condiments out of the door and scatters them all over the floor. It's actually easier to clean and prep while she plays with the bottle of mustard so I don't mind).
• I let Kaylee take some sips of juice (her favorite is kale, spinach, carrot, apple juice) and then I drink the rest and clean up.

9:30am

• Kaylee and I play in the garden. I weed, water, and tend to my plants while she stomps around in the mud, pinching dry clumps of soil with her fingers (she LOVES this), pulling leaves off my precious veggie plants (eek!), and running her fingers through the soil. We both love spending time in the garden and I think she would spend all day out there is she could.

10:30am

• Around this time Kaylee goes down for a nap. Depending on how I am feeling I nap too or I do housework (laundry, hanging clothes on the line, washing floors, the usual). I also do my next set of treatments- Albuterol, Pulmozyme, Cayston. If I am lucky I have 30 minutes or so of down time which is usually when I blog.

1:00pm

• Lunch time for both of us.

1:40pm

• After lunch is a little less structured. We either have go to a playgroup get together, go to music time at the library, play in the blow up pool, take a walk, run errands, etc

4:30pm 

• I start making dinner.
• We all eat together (unless my hubby is at work)
• Clean up dinner

6:00pm

• I start treatments- Albuterol and HTS (if my hubby is home he hangs out with K while I do treatments, once a week my dad comes to hang out with her or she plays on the floor near me.
• Quiet play in Kaylee's room.

7:00pm

• Start bedtime routine for Kaylee
• Put Kaylee to bed

7:45pm

• Finish treatments 
• Relax and go to bed!

*Of course this is approximate cause anyone who has ever been around a baby knows they aren't that great at time management!

**I also swim several times a week so those days look slightly different too.

A Day In The Life of a CF Mom

Anyone who has ever been around a baby knows that 2 month olds can't tell time and don't really care what your plans are because they are too busy living their life the way they want to live it so this is a general idea of our day. I left off the feeding and changing diapers. Both happen every 2 hours or so.

7:00 My alarm goes off.
Despite being a stay at home mom I have to set an alarm which was something I thought I could kiss goodbye once I quit my job. Well, being a CFer it took me a few weeks of frustration to realize that the best way to get my treatments in is to get up before the baby! So I pass Kaylee over to my husband where they snuggle and sleep and I get up to shower and do treatments. My husband has to get ready a little after 8 so by that time he hands me Kaylee and we start out day.

8:00 Smiles
Kaylee loves the morning. I go to change her diaper and we smile and play as we pick out an outfit and get ready for the day. I am not a fashionista in any regard, but I LOVE dressing up Kaylee in all her fun outfits and socks, bows, the works! This is actually one of my favorite parts of the day.

8:45 Walk
It has been so hot (over 100) that if we want to play outside we have to get out there before it gets too warm. So as hubby leaves to work we get ready for our morning walk and nap. Kaylee usually falls alseep by 9. We get home from our walk around 9:20. I usually throw in a load of laundry at this time and try to fit in a few more chores.

10:00 Songs and "School"
I tease Kaylee that she has to go to school in the mornings. This is when we lay a blanket on the carpet and we do tummy time followed by language development (yeah I know she is only 2 months). We are raising her bilingual so we do everything in Spanish and English. I am not bilingual (hubby is though!), but lucky for me I have enough Spanish (college, a 6 week volunteer trip to Costa Rica, and a fluent hubby) to handle the basics. She loves the songs we sing and often coos along to the music. So very cute! We then read books. Three is usually her limit. I used to sit her on my lap to read, but she gets really distracted. I found if I lay on the floor next to her and hold the book over us she stares at the pictures.

10:30 Chores
She usually needs a change of scenery so I put her in my Maya sling and do chores while telling her everything I am doing. She gets bored relatively quickly with chores (I can't blame her) and she usually lasts only about 20 minutes which is enough time to clean the kitchen and start a few other little chores.

11:00 Nap
She naps and I eat then usually wash the diapers and hang them on the line outside.

1:00 Chat time
When she wakes from her nap we usually chit chat for a while. If I softly talk to her and pause a lot she will coo and squawk and make all sorts of adorable sounds and she loves to smile.

1:20-4:00 Random/Treatments
This varies day to day. Sometimes we play on the mat, or play with toys (she really doesn't care much for toys yet, but it keeps me entertained), more tummy time. It really varies, but there is usually another little nap in there. I try to squeeze my afternoon treatment in at this time.

4:00 Dinner Prep
I bring Kaylee's bouncer in the kitchen and set it in the eating area so she can see me prep dinner, but is away from the stove. I chop veggies next to her and just chat with her as I prep. Once her dad gets home he likes to have play time with her and I can finish dinner.

6:00 Dinner/Nap
Kaylee usually naps around the time we eat so the hubby and I get a nice dinner together. When she wakes hubby takes her so I can clean up. I then do my treatments and get ready for bed which includes getting diapers ready for night changes, a little towel for milk leakage (when you feed on one side the other side decides to let milk flow all over the bed so I need something to catch the milk or else we sleep in a little puddle every night), turn on the nightlight, the air purifier (for white noise), and get a snack and water for me for my night feedings.

8:00 Bath
Every other day we give Kaylee get a bath before bed which she loves. We then get her in a night diaper (since we use cloth we use a double stuffed pocket for night) and mommy and Kaylee go to bed around 9:00.

Nighttime is something like this:
Sleep 9-1 Feed and change
Sleep 1-3 Feed
Sleep 3-5 Feed and change
Sleep 5-6:50 Feed and give to daddy so I can get ready

So there you have it! The overly exciting day of a stay at home mom!