Baby Girl’s last week as a ten month old:
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.
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.
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.
The latest photo:
41 weeks (September 16)
Khloë had her 9 month well-baby check-up with Dr K. She weighed 17 lb 3 oz and measured 29 inches long. What?! Wasn’t she 28 inches only a few weeks ago? I swear, this child grows overnight! I noticed her pyjamas, which she hasn’t been wearing that long, were getting tight but I thought I was just imagining the growth spurt.
I pointed out that Khloë’s yeast problem on her wrist is still an issue and now looks infected. I have to pick up a prescription for mupirocin, an antibiotic ointment, to clear up the infection. After seven days I should be able to go back to using the clotrimaderm cream on her wrist.
We also discussed Baby Girl’s upcoming vaccines. She’s eligible to receive the RSV (Respiratory Syncytial Virus) shot. RSV is a virus that spreads by coughing or sneezing and is like the common cold but can cause bronchiolitis or pneumonia, both which could be fatal for Khloë. She also needs the flu shot and then the regular 12 month vaccines. However all these shots need to be spaced out. We still aren’t certain when Khloë will be given the RSV vaccine. I’d rather not have to go to Ottawa every month to get it.
A bath in her new chair
On Wednesday we had a demonstration of infant CPR at Prenatal Nutrition. I’m not sure I’ll remember what to do in an emergency, though! The demonstration was to give us a taste of what the official St John Ambulance CPR course is like.
Later in the week we drove to the Pembroke Hospital for our appointment with Ralph. He made fiberglass casts of Khloë’s feet so that he can make the plastic AFOs for her. These contraptions are worth $1800. No, they are not made of solid gold, but of plastic. Funny, eh? Luckily ADP will cover a good chunk of that. I really hope ACSD approves us for 100% coverage.
Being fitted for AFOs (iPhone)
On Friday a respiratory tech from Kingston drove up to see us. He came all that way to fill out paperwork about the CoughAssist. The bonus was he showed us how to unlock it and change the settings.
Around 1 am Friday morning Khloë woke up crying. I discovered she had a stuffy nose and felt warm to the touch. By 5 am she wanted to be out of bed but clearly didn’t feel well. I couldn’t believe she already had her first cold of the fall season! I cuddled with her on the sofa and she ended up falling asleep for a half hour. The day before I had assumed she was teething since her cheeks were red and warm, but she didn’t register a fever on the thermometer. Turned out to be a nasty cold instead.
My mom arrived Monday afternoon. She planned to stay the week, even with Khloë sick; she was a huge help! And of course Khloë was happy to see her Oma. Oma was the lucky one who discovered the second tooth that had popped through! Teething AND a cold, brutal. In 9 months, this is her second illness and I hope she pulls through it. I’ve had to suction mucous out of her nose and mouth quite a lot and now she hates the machine. After talking with another SMA mom, I decided to use the CoughAssist as well to help bring the mucous up so it could be suctioned out. Khloë’s cough is weak and this machine helps push air in and pull air out, simulating a strong cough.
My growing girl’s latest photo:
19 weeks (April 15)
Khloë had her four month needles on April 15th. Just like last time, she got upset after the second jab and was difficult to calm down, but she didn’t choke while nursing this time. A friend suggested breastfeeding her during the needles but that doesn’t seem to help her discomfort. Dr K also put in a consult for Khloë to see a pediatrician in Ottawa because she’s still concerned about her neck muscles not being strong enough for her age.
Due to the time of her doctor’s appointment, we missed another session of “Make the Connection”. But we did get out to Prenatal Nutrition this week. All the girls have had their babies!
This weekend was Khloë’s first Easter! We didn’t do much as she really has no idea what it means right now. We spent the Saturday at Ryan & Stacey’s. Jordan helped his friend build a play structure in their backyard while Khloë and I hung out with Stacey and the girls. On Easter Sunday we got Baby Girl dressed up and took some photos, then went to church. Sunday evening we had potluck dinner with a group of friends from church. It was an enjoyable weekend.
This week Khloë also had her first real giggle! I kept blowing raspberries on her stomach and she thought it was hilarious. 😀
Eek my baby will be five months old in couple weeks!
Khloë is growing so fast! This week, during her two month check-up, she weighed in at 11 lb 13 oz and 23 1/4 inches long. Wow! I swear she has outgrown the majority of her 0-3 month sleepers overnight! There’s still a few in that range that fit, but we will be moving on to the next size pretty soon, I think. Our almost 12-pounder is in size 2 diapers now. Her 0-3 month shirts, onesies, and most pants still fit.
9 weeks (February 4)
I’m loving her weekly photo with her Hello Kitty doll. It’s going to be amazing to look back at them when she’s a year old and see how fast she changed.
Eyes on Daddy
Play mat time
At her appointment this week, Dr K was concerned that Khloë wasn’t holding her head up well enough. Now, she’s only two months old and hates tummy time, but I agreed to increase her time on her belly so that she can develop more strength in her neck muscles. Personally, I’m not concerned as Khloë can hold her head up when I’m holding her against my chest. Our doctor isn’t a pediatrician, the closest would be in Ottawa, and she said that if there’s no improvement by mid-March she would refer us to CHEO. Later in the appointment she asked if I would allow another doctor to quickly examine the baby. I said yes. The other doctor thought Khloë was fine but that we should continue to help her develop her muscle strength.
The big item for the two month check-up was Khloë’s first needles. She was given the oral rotavirus vaccine, and while I nursed her she was given two other needles. The first needle only caused a whimper, but the second must have really hurt because she started wailing! And then got choking on her milk, which upset her even more. My poor girl! I felt awful and did my best to comfort her. She was upset for quite awhile, too. For the rest of the day she would cry randomly. She slept quite a bit, but didn’t develop a fever.