Khloë: 11 months old (51 weeks)

My girl’s last week as an eleven month old:


51 weeks (November 25)
51 weeks (November 25)

She couldn’t manage to sit up without coughing, so we did our photo shoot laying down this week. I have been dying to have her wear those sparkly leopard print pants!

The biggest thing this week was the increase in the amount of times Khloë needed saliva/mucous suctioned out of her mouth. This is definitely a progression of her disease; she will slowly lose the ability to swallow. She also coughed quite a bit on her own, which in itself is pretty good as they were strong coughs, but they sounded phlegmy. However, she wasn’t sick.

I used the week to prepare decorations for her upcoming birthday party. I’m also working on decorating the backdrop for her birthday photo shoot. The blue lace romper I ordered from OnceUponATimeTuTus on Etsy arrived!


Monkey

On Thursday the Occupational Therapist from CCAC came to take Khloë’s measurements. We have started the process to get her a medical stroller because she is quickly growing out of her current “baby” stroller. The one we use now allows her to lay flat, but her feet are touching the end so we need something different. Plus our stroller is not meant to hold heavy medical equipment. We will be working with a vendor in Ottawa who will bring us sample strollers to try out. ADP and ACSD should cover the cost of the stroller. The application, though, could take 4-5 months for approval. While we wait for that, I hope the vendor will let us borrow the stroller we eventually pick out until payment comes through.

Also, we received the grant money for enteral feeding supplies from ADP. Our application was submitted in August and was just approved–that’s how long this stuff takes! A large portion of the checque will go toward purchasing a Kangaroo Joey feeding pump and the rest is meant for supplies (syringes, Mic-key buttons, extension sets, feeding bags, etc). I totalled up our invoices and, since September, we have already spent $500 on enteral feeding stuff for Khloë.

My cousins Delia and Andra, and four of Andra’s kids, came to the house to visit on Friday. Little Eleanor played with Khloë the whole time!


Strumming the guitar

Daddy showing her the harmonica

After they left we packed up and drove to Pembroke to see Christkindlmarkt at the Germania Club. Inside there were many vendors selling European-style Christmas items. We pushed Khloë around in the stroller, even though it was pretty packed and hard to navigate. When we first arrived, we parked the stroller near the back in the quietest spot we could find and set up her feed. The lady whose stall we had stopped near came out to talk to Khloë while I got everything ready. She didn’t even bat an eye when I pulled up Khloë’s shirt to attach the extension set to her Mic-key button. She was very friendly and said we had found the perfect spot to get our baby’s milk ready! When we were leaving I saw there was no line to see Santa, so Khloë and I got our picture taken.


Khloë and Santa Claus

We don’t do the Santa Claus thing, but I thought we should at least get a picture. That was the best one Daddy could get.

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!

Khloë: 11 months old (49 weeks)

My baby girl who is growing up too fast:


49 weeks (November 11)
49 weeks (November 11)

I love that teal tutu skirt! I think Khloë’s Aunt Keesje got it for her.

We have decided to purchase an iPad Air for Khloë (and Mommy ;) ) to use. She has arm and finger movement and likes to touch the screen of my iPhone. Her favourite apps are Fireworks Arcade and MusicSparkles. I think it will be a good Christmas gift for her and will allow her some independent play and learning time. While her grandparents were visiting, she enjoyed touching the piano keys to make music on Nanny’s iPad Mini.


Playing piano on iPad

Daddy and Papa built Khloë an activity gym out of PVC pipes. It slides right over her ottoman and she plays with the dangling toys. She gets really excited about it! Another SMA parent is making her anti-gravity cuffs to use with the gym that will allow her to have more arm movement for playing when she is laying on her side.


Activity gym

We were supposed to go to Ottawa on Friday for Khloë’s first RSV vaccination. She will receive the Synagis shot once a month from November to March. We got as far as Petawawa when I realized I couldn’t find her BiPap mask. Pulled over and searched all the bags looking for it. Finally we drove back home and I looked everywhere for the thing and wasn’t able to find it. I ended up calling CHEO to reschedule the appointment to next Friday. And guess where I found the Pixi mask? Tucked away in the travel BiPap carrying case. OMG.


Sweetie

11 months collage

I mentioned receiving the Hope car bed last week but I didn’t post a picture of Khloë in it. So here’s Baby Girl in her new car bed!


Hope car bed

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 // December 10, 2014}

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 vaccination #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.

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!

You're just as sane as I am. — Luna Lovegood (H.P.)