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Home Search results for "#1"

Khloë turns one

On December 3, 2014 my baby girl turned one year old! I decorated a pink backdrop with Frozen-themed snowflakes and tissue paper poms, dressed Khloë in a turquoise lace romper, and too...

Posted by Kendra / January 8, 2015 / 0 Comments / Tagged with baby girl, birthday, photo / Posted in Family, Friends, General, Khloë

Timeline of Spinal Muscular Atrophy

Every child diagnosed with Spinal Muscular Atrophy, regardless of type, shows symptoms differently. Khloë was diagnosed with Type 1 at six months of age. Type 1 is considered the most severe fo...

Posted by Kendra / November 14, 2014 / 0 Comments / Tagged with baby girl, hospital, Khloë grows up, Spinal Muscular Atrophy (SMA) / Posted in General, Khloë, SMA

Khloë: 8 months old (37 weeks)

Here we go:

37 weeks (August 19)

At the beginning of the week CCAC sent an Occupational Therapist and Physiotherapist to our home to meet with Khloë. The ladies were very...

Posted by Kendra / August 24, 2014 / 0 Comments / Tagged with baby girl, breastfeeding, CCAC, CHEO, doctor, G-tube, infant massage, Khloë grows up, occupational therapist, photo, physio, prenatal nutrition group, surgery, the Hello Kitty project / Posted in General, Khloë, SMA

What is Spinal Muscular Atrophy?

We knew it was coming; we knew something was wrong. But we did not think it would be quite this devastating.

On June 10th, at 6 months old, our beautiful, happy, silly baby girl...

Posted by Kendra / June 24, 2014 / 0 Comments / Tagged with baby girl, breastfeeding, CHEO, doctor, G-tube, neurologist, Spinal Muscular Atrophy (SMA) / Posted in General, Khloë, SMA

Germany – Part II

***Continued from previous post.

{November 7 – 10:00 am – Berlin} Another dreary day. It’s cold outside; I’m thankful for my mittens and warm winter coat. Having breakfast at...

Posted by Kendra / January 11, 2013 / 0 Comments / Tagged with Berlin, darling husband, dinner, Europe, Germany, Nuremberg, photo, shopping, souvenir, vacation / Posted in General, Holidays, shopping, Travel
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the girl

behind the scenes

I am a 33 year old wife who loves to write, bake goodies, travel, scrapbook, take photos with my Canon 60D, and read books. I play The Sims 4 and text on my iPhone 5.

My husband and I welcomed our first baby into the world on December 3rd, 2013. On June 10, 2014 Khloë was diagnosed with a terminal genetic neuromuscular disorder called Spinal Muscular Atrophy (Type 1). On January 16th, 2015, at only 13 months old, our sweet girl passed away due to complications from aspiration pneumonia. Click the "KHLOë" and "SMA" tabs for more entries about her life journey.

Our son, Oliver, was born October 23rd, 2015. At 19 days old he was diagnosed by blood test with SMA. The following week we drove to Boston, Massachusetts to enroll him in the "Nurture" clinical study for the drug IONIS-SMNrx. Read about his life with SMA by clicking the "Oliver" and "SMA" tabs.

++ What is Spinal Muscular Atrophy?
++ Timeline of SMA

oh baby #1

  • Birth Announcement
  • Birth Story
  • Maternity: 23 weeks
  • Maternity: 33 weeks
  • The Baby Shower
  • Ultrasound: 20 weeks
  • Weeks 04 – 13
  • Weeks 14 – 17
  • Weeks 18 – 21
  • Weeks 22 – 25
  • Weeks 26 – 27
  • Weeks 28 – 29
  • Weeks 30 – 33
  • Weeks 34 – 35
  • Weeks 36 – 37
  • Weeks 38 – The End

oh baby #2

  • NEW: Birth Announcement
  • NEW: Birth Story
  • NEW: Weeks 04 – 05
  • NEW: Weeks 06 – 07
  • NEW: Weeks 08 – 11
  • NEW: Weeks 12 – 13
  • NEW: Weeks 14 – 17
  • NEW: Weeks 18 – 19
  • NEW: Weeks 20 – 23
  • NEW: Weeks 24 – 25
  • NEW: Weeks 26 – 27
  • NEW: Weeks 28 – 31
  • NEW: Weeks 32 – 33
  • NEW: Weeks 34 – 35
  • NEW: Weeks 36 – 37
  • NEW: Weeks 38 – The End
  • The Nursery Reveal
  • Ultrasound: 19 weeks

read me

  • Amanda {Nicholson's Creative}
  • Ashley {Our Happily Ever Afters}
  • Casey {True Colours}
  • Casey {We Took the Road Less Traveled}
  • Erica {To the Sea}
  • Kristal {Mama at Home}
  • Sarah {Great Umbrella Heist}

categories

archived entries

Cloud

airplane babies baby boy baby girl baking BBQ birthday breastfeeding CHEO Christmas cross-stitching darling husband deployment dinner doctor Europe film hanging out Harry Potter hospital house guests illness in-laws Khloë grows up let it snow literature midwife moving nephew online Ottawa palliative care photo pregnancy prenatal nutrition group shopping souvenir Spinal Muscular Atrophy (SMA) swimming the Hello Kitty project The Sims 2 tv shows vacation wedding work

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