Khloë: 10 months old (43 weeks)

Here she is in all her 10 month glory:


43 weeks (September 30)

43 weeks (September 30)


A week of antibiotics seems to have cleared up Khloë’s pneumonia. After two and a half days on amoxicillin I began to notice a difference: hardly any suctioning had to be done and the junky sound in her chest was just about gone. Hurray! Jordan and I were pretty worried for Baby Girl but she pulled through. Fingers crossed this will be her only illness this winter!


Hello, Autumn!

Mid-week we bundled Khloë up and attempted an autumn leaves photo shoot. She was afraid of the leaves… Luckily a few pictures still turned out!


Sweet eyes

Mama & Baby in the leaves

Bawk bawk!

Fall theme

We took Khloë, with friends of ours and their two children, to a pancake breakfast at a community centre in town. Even though Khloë can’t really play with the toys–I always bring toys for her that are easy to clean if dropped or touched by another child or adult–I like for her to be able to socialize with other people. She loves watching other kids play.

The same friends came with us to a church dinner on Sunday. Their 4 year old hit it off with another little boy and they were inseparable all night. And then Monday evening we enjoyed a delicious turkey dinner at their house. Khloë and Carly (a year and a half) smiled a lot at each other and Khloë kept her eyes on her to see what mischief she was getting into.


Sparkle princess Khloë

Little princess collage

Lastly, the CCAC dietician popped in to see how Baby Girl was doing. She weighed in at 18 lbs!

Khloë: 9 months old (42 weeks)

She’s getting close to the 10 month mark!


42 weeks (September 23)

42 weeks (September 23)


Khloë was sick all week with a cold. Anytime she was upright in a sitting position she would cough and choke, so this week’s picture was taken laying down. My mom was here for the week and did the cooking and dishes, etc, while we took care of our sick daughter.

Every day Jordan and I spent a lot of time suctioning and coughing her. By “coughing”, I mean using the CoughAssist to simulate a strong cough (Khloë’s is weak and she can’t bring up mucous like a normal child or adult can). She absolutely hates being suctioned; she would clamp her mouth shut as soon as the machine was turned on! Unfortunately, it was something that had to be done because if we didn’t suction out the mucous, she would choke. In between these treatments I would do chest therapy by tapping percussor cups over the lobes of her lungs and then propping her bum higher than her head (postural drainage). This is meant to loosen mucous and drain it out of the lungs into the throat, to be suctioned out.

As you can see, an illness as simple as the common cold is a scary thing for a child with Spinal Muscular Atrophy.

To help her sleep, I gave her 1 ml of Advil. If she was still feeling awful after a few hours, I administered the same dosage of Tylenol. The great thing about her G-tube is that the medications can go right in the tube!


Stripey

WILD collage

On the morning of Wednesday, September 24th, she gave us a scare. We noticed her breathing was different; she was working a lot harder to get air and kept coughing. Her colour looked fine. I spent 20 minutes suctioning before deciding we needed to take her to the local emergency room. I held her in my arms for the drive, suctioning the whole way, while Jordan drove. Upon arrival at the hospital, I explained my daughter has a neuromuscular disease that affects her breathing and that she needed to be seen ASAP. We were called right in to see the triage nurse. By the time we saw the doctor, Khloë was all smiles and breathing normally. The doctor explained that she most likely had a mucous plug that I was luckily able to dislodge on the drive over. To be on the safe side, he sent her for a chest x-ray. The Pigg-O-Stat is an evil contraption that scares the crap out of me. I hate seeing her in that thing for x-rays. At one point the technician asked me to put on the lead vest and support Khloë’s chest while he took a picture of the side profile. We were told that her lungs and trachea looked clear and were sent home.

Before we left the doctor told us these wise words: “Khloë has SMA, she will die before she’s two. You will just go through this over and over.” Seriously? We are her parents, I’m pretty sure we understand her diagnosis.

We made our exit and headed home. Mary from Infant & Child Development popped in to make sure Khloë was doing okay. She was supposed to stay and teach more infant massage, but Khloë needed a nap pretty badly. Then Dawn from CHEO called and asked us to come on Friday to see Dr K, one of the respirologists. And so off we went on Friday, all the way to Ottawa, after saying goodbye to my mom. I wasn’t comfortable with having Khloë in the car seat and she did have some coughing episodes. I sat in the backseat and suctioned her when she needed it.


Flower power

Mommy and her girl

Khloë

The appointment was sort of pointless. Dr K asked us the same questions as the other doctor. Listened to her lungs. Explained how to count her respiratory rate. After he left, Carlie (respiratory tech) gave us our Masimo Rad8 pulse oximeter and showed us how to use it. Finally! She also demonstrated deep-suctioning through her nose, which Khloë absolutely hated!

What a lonnnnnnng week. And I was sick too.


Pink collage

But that’s not all. On the 29th Dr K called and said that the x-rays showed pneumonia. She called in a prescription for amoxicillin for Khloë and we started the antibiotics right away.

Khloë: 9 months old (41 weeks)

The latest photo:


41 weeks (September 16)

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

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)

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.


Oh my love

Oma's visit

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.

An update on Khloë’s illness

As Khloë’s symptoms were not improving, and her cough and rattling breath was worrying me, I took her to see her doctor late Wednesday afternoon. On Monday she had seen a nurse practitioner, but this time it was her family physician. Dr K took a look at her and said that it looked like bronchiolitis.

She sent us down the hall to the ER (the health team is located in a hospital) and we checked Khloë in. They took us right away. She was examined by another doctor and given a steroid drug that would help with her breathing and breaking up the mucous. Khloë was getting upset by this time; she really wasn’t feeling well and didn’t like the constant poking and prodding. The doctor sent us to the X-ray department because she wanted to rule out pneumonia.

Jordan had to put her in the Pigg-O-Stat, a contraption that looks like a torture device to children (and to Mommy). She was closed in with her arms above her head, crying because she didn’t know what was happening; I felt so terrible for having her in there. The technician took the x-rays very quickly, though, and within minutes Khloë was out. She looked so pathetic and sad in that thing.

After that ordeal, we went back to see the ER doctor. She said she’d had a look at the scans, but without a radiologist there to examine them, she wasn’t 100% certain it was pneumonia. She said she could put Khloë on an antibiotic that it may turn out she didn’t need, or we could wait until the next morning for the radiologist to view the scans. We decided to wait for the results.

Because Khloë wasn’t nursing very well with her difficulty breathing, I woke up at 4 am Wednesday morning with a severe pain in my left breast. Mastitis struck again! By 10:30 am I had developed a fever, headache, and chills. Khloë and I slept most of the day until it was time to see Dr K. At Khloë’s appointment I mentioned that I was sure I had mastitis again. One quick peek, and Dr K wrote me a prescription for clindamycin.

So we went home with sick baby and antiobiotics for Mommy.

Thursday morning Khloë seemed in better spirits. The rash on her face and torso had disappeared. However as the day progressed she got fussy and began to cluster feed. She still isn’t feeling well but she was at least breathing better. I continued to give her Tylenol to help her sleep.

By today (Saturday), I could tell she’s feeling better, though she does have a lingering cough. We plan on heading to Kingston for a few days to visit family. Unfortunately, I came down with a cold Wednesday night and I feel pretty miserable right now.

Khloë visits a farm (and her first illness)

…The Agriculture & Food Museum in Ottawa to be exact!

We spent the weekend at Serena & Cheepow’s. Our two year old niece, Zoë, liked having baby Khloë to “play” with. Mostly she would sit beside her and watch me change the baby’s diaper, dress the baby, or nurse the baby.

On Saturday Jordan and I decided to use his sister’s free pass to the Agriculture Museum to take Khloë to see the animals. We bundled Khloë up against the chill and put her in the stroller for the first time. She seemed comfortable and didn’t fuss.


First stroller ride

First stroller ride


The museum is not all indoors. Basically you walk from building to building to see the animals. There were cows, pigs, goats, and sheep. We also listened to a talk about honey bees and saw the cows being milked. I think it would have been more enjoyable in better weather; it was muddy and a little cold when outside.


Look, it's a cow!

Look, it’s a cow!

Look, it's a tractor!

Look, it’s a tractor!

Watching the cows get milked

Watching the cows get milked


Before leaving I tried to nurse Khloë in a quiet corner in the Learning Centre but she got really fussy and wouldn’t drink. I figured she was getting tired and needed her nap. We took her back to the house and I put her down for a nap. She seemed a little stuffed up but I didn’t think much of it.

By 1:30 am on Sunday morning I had to suction the snot out of her nose because she was having a hard time breathing. I kept waking up to the sound of her choking on mucous. Later in the morning, after nursing her, she was really fussy and nothing would make her happy–definitely not the norm for our girl. We all headed to church and I kept thinking to myself that I should have stayed at the house with her. Mother’s intuition! She cried almost the whole time and I spent the whole service in the nursing mother’s room trying to console her. She didn’t want to nurse and finally slept about 30 minutes. Her nose was still pretty clogged.

Back at Serena’s she finally had a good breastfeeding session and fell asleep for two hours. When she woke she had developed a nasty cough. I gave her some infant’s Tylenol because I was afraid she was getting a fever. The medicine seemed to improve her spirits enough to do a little photo shoot with her cousin.


Photo shoot at Aunt Serena's

Photo shoot at Aunt Serena’s

Khloë & Zoë

Khloë & Zoë


We got all packed up and made the 2.5 hour drive home; Khloë slept almost the whole journey. I gave her more Tylenol to help her sleep, suctioned her nose again and fed her. In between doses she was able to sleep but her breathing and coughing sounded awful.

As soon as her doctor’s office opened Monday morning I called and made an appointment. The nurse practitioner confirmed Khloë most likely had a virus and that we were to continue to give her Tylenol, nurse her as much as she wants, and let her sleep. She checked Khloë’s ears and chest, which sounded clear, and said that the mucous was all in her sinus area. Hopefully this illness doesn’t last more than a couple days; my poor girl is miserable and I miss her beautiful smiles. And I think she might be passing her cold on to Mama…