a day in the life, x linked hydrocephalus, l1 syndrome, pray for this baby

A Frantic Day in the Life of: an L1 Family

Ever wonder why my house is cluttered? Strike that … its not cluttered. A nightmare is a better description of my home, 99.9% of the time. Ever wonder why there are always dishes in my sink? Bottles in baskets? Bottles in sinks? Bottles on couches? Toys on couches? Under couches? On shelves? On chairs? Ever wonder why I never accept additional hours at work, despite loving my job? Needing money? Wanting to do more to support my family? Wanna know why I always forget to text you despite promising you that I care about you? Knowing that I care about you? Wanna know why I’m tired and sleep so well despite having a newborn/infant? Wanna know why I’m never worried about being addicted to too much phone or internet time? Wanna know why I know I play outside with my kids enough?

A typical day at my house…..

6:00am: Milk Breakfast for Noah Man (the baby who has L1)!
6:30am: Mommy Pumps && Works on her Blog
7:30am: If no one is making a sound, mom works on her craft while pumping a second time. If Kara is up by now, she eats while mommy does laundry and then we either wash dishes together, sometimes start a movie together, or begin our day together (if mom isn’t working).
8:30am: Mommy leaves for work, if she doesnโ€™t workโ€ฆ we craft, play, and learn
11:30am: If Mommy makes it home from work, she pumps.
12:00pm: Mommy comes home, Tummy Time and/or Milk Snack for Noah man while mommy & Kara’s lunch cooks.
12:30pm Therapy #1 with mommy & Kara. If today’s messy craft idea is something she can do independently, she works on this while I do Noah’s therapy on the floor beside her. Otherwise, it just happens after she wakes up from nap.
1:00pm: Lunch && Mommy pumps 3rd time in a day
1:30pm: Therapy with a therapist
2:30pm: Kara’s nap time, && Noah too if he cooperates. If they both nap, mommy gets quiet time/devotionals, sometimes a shower and either washes dishes or works on Kara’s quiet time book (I’ve got 9 more pages until I’m DONE!)
3:30pm: Kara Wakes Up, Snacks, & Noah Eats
4:00pm: Mommy Pumps 4th time in a day
4:30pm: Therapy #3 with mommy & Kara
5:00pm: We go outside and play! Sometimes Noah naps, sometimes Noah joins us.
5:45pm: We come inside and hope daddy is off work. Mommy starts dinner and lets Kara either work on her sink art or containable craft
6:00pm: Dinner and Mommy Pumps 5th time in a day; I try to eat dinner with Kara so we can talk about what we did for the day. Sometime it happens and sometimes it doesn’t with Noah also cooing for food and daddy coming in and out. She usually starts asking to watch a movie this time a day as well.
7:00pm: Therapy #4 with mommy; Kara watches a movie or plays with a puzzle/books independently during Noah’s 4th therapy.
7:30pm: Picks up Kara’s bedroom, Baths and Bedtime for Kara
8:00pm: Mommy Pumps 6 times in a day
8:30pm: Therapy #5 with Mommy, sometimes Daddy
9:00pm: Dinner and Bed for Noah
9:20/30-10:15: Mommy Blogs/works until bedtime.
10:15pm: Mommy Pumps Pumps 7 times in a day
11:00pm: Mommy Shower and Bed

A Photo Journey

(photo intensive)

l1, l1 syndrome, l1 syndrome awareness

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Noah’s Story
What is Wrong with Our Baby Boy?
Baby Boy Eagle Has A Name! He’s Born!
My Two Day Old Warrior
Totally In Love, Noah’s Improving at 5 days old
Noah’s Moving On Up
There’s Hope In Progressive
The First of the Setbacks
Back on the Road to Recovery
Slow and Steady Wins the Race
Steps Toward Home
Noah’s First Week Home
The Therapy Journey has Begun
7 Weeks Alive
Noah is Enabled; never DISabled
Noah’s Brain Development
My Little Family
L1 & The Pediatric Ophthalmologist
Really, What is L1?

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