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.

Khloë: 10 months old (46 weeks)

I took this photo at the end of the week when we were home from CHEO:


46 weeks (October 21)

46 weeks (October 21)


Khloë’s Oma bought that adorable ballerina skirt for her before she was born. Loved seeing her finally get to wear it!


Meeting baby Mia (iPhone)

Holding my new niece (iPhone)

All the girls with Khloë

Like the previous post, there isn’t much I can write here since I’ll be talking about the majority of the week’s craziness in a separate post. We were discharged from the hospital late Wednesday afternoon and then spent Wednesday to Friday chilling at Rogers House, getting Khloë used to her new Trilogy BiPap ventilator. We were allowed to leave anytime on Friday. The great news is that my sister-in-law, Serena, had baby #2 around 4 am Friday morning! So after we packed up our load of stuff we drove over to see her at the hospital. Khloë got to meet her brand-new cousin, Mia! The above pictures were taken on my iPhone as I hadn’t packed my Canon 60D. New rule: always pack camera even if we assume we will only be away for one day because that can change in an instant!


Pretty girl

White dress for church

Rock n' roll sista

Of course on the weekend I had to do some fun photo shoots with Baby Girl! After almost a week and a half away from home, I went a little camera-crazy. But that’s okay! Nothing eventful happened during our first weekend home with the BiPap ventilator. Khloë seemed to have adjusted to it alright.

Khloë: 10 months old (45 weeks)

Hey there, darling:


45 weeks (October 14)

45 weeks (October 14)


This week’s photo was taken at Rogers House in Ottawa since I had forgotten to do it before we left for Khloë’s appointment at CHEO. She loved the bean bag chair; we need to get one of her very own! Since I’m going to write a completely separate post about Khloë’s Neuromuscular Clinic appointment that turned into a 10 day stay at the hospital, there isn’t much else I need to write here. 🙂

Khloë: 10 months old (44 weeks)

Note: I am wayyyy behind but a lot has happened in the past month that has not allowed me to update regularly!

My baby gets a little older every week:


44 weeks (October 7)

44 weeks (October 7)


Khloë came with Jordan and I to our young adults group at church on Wednesday evening. I was hesitant to go because I wasn’t sure how cranky she would get near bedtime. I can’t leave her in the nursery with the other kids anymore–can’t risk another kid touching her toys and then her putting them in her mouth–so she stayed with Mommy and Daddy during the group. She was happy and chatty and made everyone smile!

Thursday morning we went to Pembroke Hospital to pick up Khloë’s AFOs. They are molded hard plastic braces (with cute butterflies!) that she will wear for 1-2 hours a day for two weeks, as a breaking in period, and then we are to slowly increase that time. The braces are meant to correct the slight curve to her feet.


Minnie Mouse

Sweetness

I ordered two bottles of sambucus (black elderberry extract) from Swanson Vitamins and started giving Khloë 5 ml once a day to boost her immune system. Many SMA kids are given this extract and I decided we should try it out.

At 3 am Saturday morning I woke to the sound of Khloë crying. I checked on her and felt wetness on her shirt. Turning on the mini flashlight we keep by her crib, I saw she was covered in vomit. I called to Jordan that she’d been sick, and as he came into Khloë’s room she started to vomit again (through her nose and mouth). I quickly turned her on her side so she wouldn’t choke and Jordan quickly suctioned out her mouth. Her breathing looked normal, but there was a lot of thick mucous in her vomit. I stripped off her pyjamas and moved her to the change table while Jordan pulled the sheet and mattress cover off the crib and tossed it in the laundry basket. Then I attached the pulse oximeter probe to one of her toes to check her o2 levels. They hovered around 94-96, with heart rate high 140-150s. She ended up puking a few more times. We were concerned enough that we decided to bring her to the ER in town. Once we got there, though, she seemed better. The doctor ordered an x-ray which showed pneumonia was clearing up but wasn’t gone. He was unsure as to what was causing her to vomit because she had no fever or other symptoms. He suggested we stop giving her sambucus for a couple days to see if that was the culprit, and then re-introduce it in smaller amounts. By the time we got home, it was after 7:30 am. We all went back to sleep for two hours. When Khloë woke again, I let her nurse and then did some chest PT. She threw up one more time a little while after that. I kept a close eye on her for the rest of the day, and after a great nap in the afternoon, she seemed back to normal again.


New hooded towel

And then Sunday morning she vomited at the end of her feed! This time it was very yellow and looked like bile. I vaguely remembered reading something about bile in the enteral feeding booklet we were given at CHEO but I couldn’t find the information I was looking for. For the rest of the day she was fine. A couple times, when I vented her G-tube, it looked like bile in the syringe. We ended up going to our friends for turkey dinner and once again Khloë was perfectly fine through her feeds and was in good spirits. We got home around 8:30 pm and I realized I hadn’t yet changed her G-tube dressing. When I unwrapped it, I saw that the tube measured at 6 cm (instead of 10 cm). I slowly pulled it out to 8.5 cm but there was quite a bit of resistance so I left it. I started to think that maybe the vomiting and bile had something to do with tube migration. Jordan called General Surgery at CHEO and spoke with a doctor and the doctor told us to bring Khloë to the Pembroke Hospital to have it checked out. That’s a 30 minute drive and neither of us wanted to bring her back to the ER. We figured we would try once more to pull the tube out to 10 cm, and luckily this time it worked! No more vomiting and no more bile!


Playing the xylophone

Daddy also taught Khloë to “play” her toy xylophone. She loves tapping at the keys!

We received the brand-new suction machine this week, along with a few enteral feeding and suction supplies I had ordered. Our nurse coordinator from CHEO called to check on Khloë and remind us about next Wednesday’s appointment. And we decided to cancel our upcoming weekend trip to Kingston because my mom was still sick.