Khloë: Forever 13 months old

It is with a heavy heart that I make this post… On January 16th, our sweet girl lost her fight with Spinal Muscular Atrophy.

December 3, 2013 - January 16, 2015

December 3, 2013 – January 16, 2015

We are heartbroken.

Khloë was hospitalized on January 12th with aspiration pneumonia and a collapsed lung. She passed away from complications from these issues. Her body was too weak. Jordan and I, as well as close friends and family, were with her to the very end.

We love you, Sweet Pea.

I will add missing journal entries when I feel that I am able to.

Khloë: 11 months old (50 weeks)

Khloë is laying down for this week’s photo. She’s having difficulty being upright for any length of time.

50 weeks (November 18)

50 weeks (November 18)

Not a whole lot went on this week. We made the trip to CHEO for Khloë’s first RSV vaccination on Friday. As mentioned previously, she will receive the Synagis shot once a month until March to protect her against this nasty bug. Once we registered, she was weighed (19 lbs) and then given one injection. She did get upset, but it didn’t last long.

Such a gorgeous baby

Sweet baby hands

A week ago I ordered a petite size Wisp mask for Khloë. I really dislike how the Pixi fits her face. Unfortunately, the headgear is too big so we can’t use it yet. The mask itself is a good fit. We are trying to rig something up so we can use the mask on her with either the velcro hat or Pixi headgear (which sort of fits). Very frustrating. But for now we have to keep using the Pixi for BiPap.

Night time set-up

The above photo is Khloë’s nighttime set-up in her bedroom. On the far left is the Kangaroo Joey feeding pump and behind it on the stand is the Trilogy BiPap machine. Sitting by her head is the CoughAssist and at her feet is a Masimo Rad8 pulse oximeter. On the floor is her suction machine. Everything within easy reach in case of emergency. All of these pieces of equipment aid us in managing our daughter’s neuromuscular disease!

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.

Khloë: 11 months old (48 weeks)

Here she is, my 11 month old:

48 weeks (November 4)

48 weeks (November 4)

The Hope car bed, generously donated by CureSMA (Families of SMA Canada), arrived on Wednesday! We had been waiting for Khloë’s car bed for what seemed like ages and now we finally have it. Unfortunately, she’s already at the maximum length for it. We can use it as long as she is comfortable with her legs bent at the knees. The thing takes up almost the whole backseat, which doesn’t leave a lot of room for me to ride beside her plus all the equipment I need within arms’ reach. But we will make do. Since CHEO wasn’t being cooperative, the Montreal Children’s Hospital ordered the bed for us. 🙂

Sucking her lip

Khloë sounded congested in the mornings near the end of the week. Her breathing treatment consists of suction, chest PT, CoughAssist, suction, repeat. This helps clear the junk out of her lungs and usually gets rid of the rattly sound when she breathes. Daytime spot checks with the pulse oximeter have her o2 around 97-99, which is great. Overnight she sits around 96-97, which is a little lower than usual. I won’t worry about it until she consistently drops below 96. And even then, it could just be we need to use a new pulse ox probe or adjust her Pixi mask to reduce leak.

We resumed giving her 5 ml of Nature’s Answer sambucus (black elderberry extract) for immune system boosting.

Happy girl!

New headband and toy

On Friday, when I removed her mask in the morning, there was a red mark with a tiny blister on her cheek where the Pixi mask rests. I’m pretty sure it’s a sign of skin breakdown. In the above photo (flowered dress) you can see the marks on her face from the mask. A friend suggested we purchase Duoderm; it’s supposed to help heal the breakdown while protecting her skin from further damage from pressure. Our medical vendor said they could order some for us. A 4×4″ square of it costs $13 from them, but I found it on Amazon for much cheaper per square.

Khloë’s grandparents arrived Saturday night. She was very spoiled during their stay, with both gifts and attention. They had a way of making her laugh and laugh, it was way too cute!

Khloë: 10 months old (47 weeks)

Baby Girl’s last week as a ten month old:

47 weeks (October 28)

47 weeks (October 28)

It took me awhile to realize it, but my little baby is almost 11 months old… And that means she’s getting closer to the BIG ONE! How amazing is that? For a child with Spinal Muscular Atrophy (Type 1), reaching the age of one is a huge deal. We are fully prepared to celebrate when the time comes; I have a “Frozen”-themed party planned for December 6th, perfect for a winter birthday.

After the pneumonia issue Khloë had, Jordan and I are doing our best to keep her from getting sick again. However, I’m not prepared for us to hole ourselves away for the entire winter. Maybe that’s what we should be doing, but right now I don’t think that is best for our little one. I think it’s important she has contact with friends and family. I’ve said this many times–Khloë is a very happy little girl who loves to socialize. It would be wrong to take that away from her.

Oh sweet girl in a gorgeous dress

Anyway, Tuesday afternoon we headed in to see Dr K for our flu shots. I’ve never had a flu shot before, but since Khloë needed to get hers, I got mine too. Ouch! For the rest of the day, and even a bit of the next, my arm was useless! It was so sore that I could hardly lift a glass of water… That’s never happened to me before with a needle.

Mary came Wednesday morning. She’s making a point of doing Khloë’s therapy as the first appointment of the day so that she doesn’t bring yucky germs into our house. She even wore a mask to protect Khloë. She’s an awesome lady and we love how she gets Baby Girl excited about new toys and activities.

Happy Halloween!

Khloë celebrated her first Halloween on Friday! We didn’t take her Trick or Treating as it was much too cold out. Instead, Stacey and her two girls came over to play. Sofia dressed up as Sofia the First and little Raylyn wore a Tinkerbell costume. I had ordered a gorgeous tutu dress and matching headband from OnceUponATimeTuTus on Etsy and put that on Khloë so she could be a princess. I set up a back-drop, decorated it with free Halloween printables found on Pinterest, and did a photo shoot!

The nurse that visits once a month came on Saturday. I caught her up on everything that had happened over the past few weeks. She listened to Khloë’s lungs and said they sounded clear. I was getting worried that she might be getting sick again because since Friday she’s been sounding phlegmy. No matter how much I cough her (ie. use the CoughAssist machine to simulate a strong cough) and suction her throat/nose, I can’t get that yucky noise out of her. So even though the nurse said her lungs sound great, I’m still doing a full breathing treatment in the morning after she wakes and before bed, and any extras when I think she needs it.