My baby girl who is growing up too fast:
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.
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.
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.
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!
Here she is, my 11 month old:
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. 🙂
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.
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!