Tuesday, May 7, 2013

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:

  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • Lunch time for both of us.
  • 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
  • I start making dinner.
  • We all eat together (unless my hubby is at work)
  • Clean up dinner
  • 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.
  • Start bedtime routine for Kaylee
  • Put Kaylee to bed
  • 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.


  1. I'm exhausted just reading your schedule. I'll be there soon enough though! Thanks for laying your schedule out. It's nice to see how you do time management with CF and a baby. :)

    1. It is busy, but SO much fun. I often wonder what the heck I used to do with 2 days off every week. Seriously, what did I do with all that time? haha

  2. I loved the part about putting pills in your pocket!! You are not the only who did this in high school :) That makes two of us rebel CFers. As you know I was a later CF diagnosis.

    1. Haha when the school told my mom I would need to go to the office every lunch period (and if I ever needed a snack) for my enzymes she was like, Oh just put them in your pocket!! She didn't have to tell me twice and the school never questioned why we never showed up with our bottle of enzymes.

      Glad to hear I am not the only one. ;)