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 form of SMA. This timeline will be kept updated to show how her neuromuscular disease progresses, the milestones that she reaches, and anything that is important.

Timeline of SMA

{Last Updated // February 2, 2015}

December 3, 2013: Khloë is born at 7:22 pm, delivered by midwife and obstetrician. She is two weeks early, weighs 7 lb 4 oz, and is 19 inches long. Khloë is perfectly healthy!

January 3, 2014: Khloë turns 1 month old!

January 16, 2014: Check-up with family doctor.

February 3, 2014: Khloë turns 2 months old!

February 4, 2014: Check-up with family doctor. Dr K is concerned that Khloë is “floppy” but suggests we give her more time to develop. She receives her two-month vaccinations and weighs 11 lb 13 oz.

March 3, 2014: Khloë turns 3 months old!

March 12, 2014: Check-up with family doctor. Khloë shows improvement in head control, which satisfies Dr K, but she is still “floppy”. Hydrocortisone cream is prescribed for eczema. Khloë weighs 13 lb 12 oz and is 24.5 inches long.

March 30, 2014: Khloë is sick with her first cold.

April 2, 2014: Khloë has a chest x-ray which shows her cold has progressed to bronchiolitis. She is given an oral steroid to help with breathing. Her illness lasts approximately 10 days.

April 3, 2014: Khloë turns 4 months old!

April 15, 2014: Check-up with family doctor. Khloë has not progressed any further with head control and we are getting worried. Dr K sends a referral to a pediatrician in Ottawa. Khloë receives her four-month vaccinations and weighs 14 lb 4 oz.

May 3, 2013: Khloë turns 5 months old!

May 14, 2014: Mary (Infant & Child Development) visits with Khloë and expresses great concern about her hypotonia (low muscle tone) and lack of reaching milestones. She will continue to work with Khloë.

May 15, 2014: We meet Khloë’s pediatrician, Dr I, for the first time. She sends a referral to a neurologist at CHEO. She also prescribes clotrimaderm/hyderm cream to treat the yeast rash under Khloë’s chin and on her left wrist.

May 21, 2014: Khloë sees Dr M, pediatric neurologist, at CHEO. After running a few tests, including an EMG, he tells us he suspects a neuromuscular disease called Spinal Muscular Atrophy. Khloë has blood work done to confirm.

June 3, 2014: Khloë turns 6 months old!

June 9, 2014: Check-up with family doctor. She receives her six-month vaccinations and weighs 15 lb 7 oz. Length is 27 inches.

June 10, 2014: Khloë is officially diagnosed with Spinal Muscular Atrophy (Type 1).

June 23, 2014: We meet with Debbie (Occupational Therapist) at CHEO. Khloë eats pureed baby food for the first time! We also tour Rogers House, the palliative care facility located behind the children’s hospital.

July 3, 2014: Khloë turns 7 months old!

July 5, 2014: We celebrate Khloë’s 7 month “birthday” with a friends and family BBQ at the cottage!

July 7, 2014: A care package from CureSMA (Canada) arrives for Khloë. It’s filled with fun toys, a Radio Flyer wagon, sheepskin, and much more!

July 8, 2014: We discuss gastrostomy surgery with Dr B at CHEO. Nothing is scheduled yet.

July 9, 2014: Khloë meets her team of neuromuscular specialists.

July 12, 2014: Khloë’s first trip to the beach.

July 19 – August 5, 2014: Khloë travels to Bar Harbor, Maine and visits family in New Brunswick.

August 3, 2014: Khloë turns 8 months old!

August 7, 2014: We meet with our Care Coordinator from CCAC to discuss Khloë’s current and future needs for nursing, etc.

August 9, 2014: Candles are lit for SMA Awareness Month.

August 11, 2014: A CoughAssist machine and pulse oximeter is ordered for Khloë after a visit to CHEO. She weighs 16 lb 4 oz and is 28 inches in length. Khloë visits the Aviation & Space Museum!

August 22, 2014: We meet with an anesthesiologist at CHEO to talk about her special needs during surgery.

August 27, 2014: Khloë has gastrostomy surgery. We spend Labor Day weekend in the hospital and at Rogers House for recovery.

August 28, 2014: Khloë has her first tooth!

September 3, 2014: Khloë turns 9 months old!

September 16, 2014: Check-up with family doctor. Dr K prescribes mupirocin for the infection on Khloë’s wrist. She weighs 17 lb 3 oz and is 29 inches in length.

September 18, 2014: Khloë is fitted for AFOs.

September 20, 2014: Illness strikes again! Khloë is sick with a cold. Her illness lasts a few weeks.

September 24, 2014: Khloë has a chest x-ray which shows her cold has progressed to pneumonia. Dr K prescribes amoxicillin.

October 3, 2014: Khloë turns 9 months old! We meet with Khloë’s neuromuscular team for clinic at CHEO and receive the CoughAssist and pulse oximeter.

October 9, 2014: Khloë starts receiving 5 ml of sambucus (black elderberry extract) through G-tube daily.

October 13, 2014: Khloë’s first Thanksgiving!

October 15, 2014: We meet with Khloë’s neuromuscular team for clinic at CHEO. Dr K (respirologist) is very concerned with the fact that she is still sick and her low o2 sats; he orders a chest x-ray which shows pneumonia has not cleared. He insists she needs to be admitted for BiPap trial ASAP. Khloë is admitted to the hospital the following day but cannot trial BiPap until an ICU room becomes available. She is prescribed amoxicillin-clavulin to treat pneumonia.

October 17, 2014: Khloë begins BiPap trial in the ICU at CHEO. We are there for 6 days until finally she is discharged into the care of Rogers House. After two more days there, we go home! Pneumonia has cleared and o2 is back to normal. Final BiPap settings are 18/8.

October 22, 2014: Khloë’s temporary G-tube is replaced with a Mic-Key button.

October 28, 2014: Khloë receives the flu vaccine.

October 31, 2014: Khloë’s first Hallowe’en!

November 3, 2014: Khloë turns 11 months old!

November 5, 2014: We receive the Hope car bed, donated by CureSMA (Canada).

November 7, 2014: We start giving Khloë breathing treatments every morning and evening (suction, chest PT, CoughAssist).

November 21, 2014: Khloë receives RSV shot #1 (Synagis). She weighs 19 lbs.

November 27, 2014: We begin the lengthy process of purchasing a medical stroller for Khloë.

December 3, 2014: Khloë turns 1 year old!

December 6, 2014: Friends and family celebrate Khloë’s first birthday with a Frozen-themed party.

December 9, 2014: Check-up with family doctor. Khloë receives her twelve-month vaccinations and second flu shot. She weighs 19 lb 8 oz.

December 12, 2014: Khloë receives RSV shot #2 (Synagis). She weighs 20 lbs.

January 3, 2015: Khloë turns 13 months old!

January 7, 2015: Khloë receives RSV shot #3 (Synagis). She weighs 20 lb 4 oz.

January 12, 2015: After a 9-1-1 call, Khloë is rushed to our local hospital for a chest X-ray and observation. She is then sent by ambulance to CHEO and is admitted for aspiration pneumonia. She also struggles with mucous plugs.

January 15, 2015: Just after midnight at CHEO, Khloë’s airway is blocked by a mucous plug during a CoughAssist treatment. Her oxygen level and heart rate plummets dramatically and she goes into cardiac arrest. Twenty-five minutes later she is stabilized and intubated.

January 16, 2015: Khloë receives a CT scan which reveals significant swelling in her brain. She no longer has any responses. At 9:25 pm, surrounded by Mommy and Daddy and close friends/family, our baby girl takes her last breath.

January 21, 2015: We celebrate the beautiful life of our sweet Khloë during the funeral service at Real Hope Christian Assembly.

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