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.

SMA: Neuromuscular clinic (September 3)

A few days after Khloë was discharged from the hospital, we went to our second Neuromuscular Clinic appointment. We met Dr L, an orthopedic surgeon, who was very friendly and great with Khloë. He liked that her feet aren’t terribly formed yet and he wrote up a prescription for Ankle-Foot Orthotics (AFOs). There’s an ADP form that goes with the prescription as well, which means we will only pay 25% of the cost.

In case I haven’t explained what ADP is, it’s short for Assistive Devices Program, and it’s for residents of Ontario. Once approved, ADP pays 75% of the cost of the device. In this case, the AFOs. We are awaiting ADP approval for the suction machine and feeding pump. Khloë’s equipment is very expensive! Another program we are hoping to be approved for is ACSD (Assistance for Children with Severe Disabilities). If we get approved for that, then ADP will actually cover 100% of the cost of the devices I listed! ACSD is based on our income.

We also saw the physiotherapist (not much to remark) and Kellie, the dietician. Kellie is looking into Pediatric Vivonex, an elemental formula, for when Khloë turns 1 in December.

Dawn, our nurse coordinator, gave us the CoughAssist machine to take home. She suggested we have Khloë play with the tubing and mask to get used to it first. Not sure what happened to the pulse oximeter we were supposed to be given… Both of these pieces of equipment are loaned to us from the Ventilator Equipment Pool at no cost.

Next we saw Dr MacL, a different respirologist. He doesn’t think Khloë needs BiPap just yet, but he wants to do an overnight pulse oximetry at home to get an idea of her sleeping O2 sats. We professed interest in the BiPap because we know Khloë will most likely need the extra breathing support when she gets sick.

And lastly, Khloë was assessed in her car seat with the pulse oximeter attached to her toe. We were trying to see if her blood oxygen level was different while upright. The OT still doesn’t want to help us with getting the car bed from FSMA Canada.

Later that afternoon Jordan and I met with a genetic counsellor. We found out that we are indeed carriers of the SMA gene. No surprize there! In order for Khloë to have Spinal Muscular Atrophy, both of us had to be carriers. The counsellor drew our family tree, explained a few things about autosomal recessive genes that we already knew, and said that she would be mailing a letter to us that we could give to family members. The letter would explain our family history of SMA and would encourage family members to get tested to see if they are carriers of the gene that has changed our lives!

Khloë: 8 months old (35 weeks)

Here she is in all her 8 month old glory! 🙂


35 weeks (August 5)

35 weeks (August 5)


Oh, I remember when that headband was a little big on her…

A representative from Community Care Access Centre (CCAC) came to see us this week. Tim introduced us to the program and explained what CCAC can offer Khloë: a nurse to come and make sure we are using the equipment correctly (suction, pulse ox, CoughAssist, etc); shift nursing if needed (we aren’t at this point in her care yet); respite care; an OT, PT, and dietician to also come to our home; and when she’s old enough a speech therapist. Tim said he would write the paperwork that will qualify Khloë for Enhanced Respite Funding, which is a huge relief to us.

On Wednesday Khloë and I finally made it back to Prenatal Nutrition. I think it had been almost a month since we were there. It was so nice to see the girls again and I couldn’t believe how big all the babies were! And we found out that Chantel is 6 weeks pregnant!


8 month collage

8 month collage


A nurse, Betty, came on Friday to review suctioning with us and she evaluated Khloë’s chest. Her lungs sounded clear at the time and it turned out we are using the suction machine correctly.

Khloë’s little friend Raylyn turned 1 year old on Saturday! We made sure no one was sick before agreeing to go, and am I ever glad we did. There was a ton of amazing food and the kids did great with Khloë–she didn’t get mauled too much! Daddy even snuck her a cupcake and she enjoyed licking all the pink icing. 😉


Blue headband

Beautiful grin

Oh those eyes

On Sunday we packed up the car again, drove to Ottawa, and checked into Rogers House where we would be staying the night. What I love about Rogers House, the palliative care building, is that it’s located directly behind CHEO, the staff are friendly and adore Khloë, it’s free, and parking is included! That definitely helps us out since we make so many trips to Ottawa. So far we haven’t had any issues getting a room when we need one, but they are limited.

Monday morning we walked over to the hospital and met with Carlie, the respiratory technician. She showed us the new model of CoughAssist (E70) and trialled it on Khloë. Baby Girl really did not like it! I don’t blame her, as I’m sure it feels weird, but it’s something she will have to get used to. The machine simulates a cough by using pressures on inhale and exhale, which will help to clear secretions (saliva, mucous, etc) from her lungs. Since Khloë can’t inhale or exhale upon command, we plan on using the machine in the beginning just on inhales to exercise her lungs and keep them healthy. Carlie put in the order and we should have CoughAssist and the pulse oximeter by our next appointment in September.

After that appointment, Jordan and I registered at the lab and had blood taken for genetic counselling.

SMA: Neuromuscular clinic (July 9)

Khloë’s first Neuromuscular Clinic appointment was July 9th. Clinic only runs on Wednesdays, every other week. Unfortunately, our visit was not as successful as we had hoped it would be. Most of the specialists were great, but one doctor kind of ruined the day for us.

On Tuesday, July 8th we met with Khloë’s pediatrician, Dr I. That appointment went fine as it was just a follow-up on how we were dealing with our daughter’s diagnosis. Dr I asked if she can continue to follow Khloë’s progress; we agreed to this request.

That same day we saw the surgeon who would be performing the G-tube surgery. Dr B was extremely hard to understand and I felt that there was a language barrier. I’m sure he’s a great doctor, but I didn’t feel comfortable with the consult. He doesn’t want to do the surgery while Khloë can still eat orally, but that contradicts what her neurologist said. Dr M originally told us that getting the G-tube proactively, before she is sick and has developed breathing problems, would be better for her, especially in regards to recovery. I think these two doctors need to have a discussion. Jordan and I want Khloë to have the surgery by the fall, at least.

On Wednesday, July 9th we walked back over to the hospital for our first visit to the Neuromuscular Clinic. It turned out to be a long, exhausting day. Khloë was very tired as she was up at 6:30 that morning; she refused to nap before the appointment and then as soon as we arrived I could tell she wanted to sleep. She needed a lot of attention to keep her from being really miserable, so it was hard for me to really concentrate on what the specialists were saying. I felt rushed and overwhelmed.

First we met Kellie, the dietician, who told us to start Khloë on one food at a time to check for allergies. I explained to her that we already give her mixed cereal and various fruits and veggies all within the same days and she hasn’t had any reactions. I’m not going to change the way we feed her because there are no food allergies in our families. I asked her to find out more information about dairy products, as I’ve read that SMA kids have a hard time digesting the fat molecules in dairy because it takes too much of their body’s energy.

The Occupational Therapist was still trying to find us a bath seat. She also found a neat portable pool (it’s tall and deep) which includes a flotation device that keeps the child’s head above water. She’s hoping to get funding to cover that item. The pool would be beneficial since it would give Khloë the ability to really move her arms and legs–aquatherapy!

The physiotherapist showed us how to do chest therapy with percussor cups. We are to do 3 minutes on each lung lobe when she gets a rattle in her chest or when she is ill.

Next up was the respirologist, Dr. K, a few students, and the respiratory technician. I’m not at all fond of the respirologist. He seemed to think us wanting to be proactive with getting Khloë specific equipment early on wasn’t a good idea–we requested a suction machine, CoughAssist, and pulse oximeter. We don’t want to wait until she’s in distress; we want these items as soon as possible so we can be trained on how to use them. He is giving us the suction machine, which the respiratory tech, Carlie, showed us how to use later on. However when I said I wanted the CoughAssist machine (as every single SMA parent has told us to get it ASAP) Dr K said that he only recommends it for children over 5 years old…to which I replied that Khloë may not reach that age. I was getting frustrated by this point. So after he left, Carlie compromised and said she would give us the loaner CoughAssist machine to try out in 2 months time when we go back. Jordan and I have come to the conclusion that we still want it NOW and not in 2 months. I sent an email to Carlie about our decision.

Finally we saw the social worker and explained all our concerns about Dr K. She assured us that if we don’t get what we want, we can always ask for a second opinion because it’s completely our decision about what equipment we want. With the neurologist not being there, we couldn’t go to him. The social worker and our nurse coordinator have been awesome, though!