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.

Home again, home again!

Once again I am playing catch-up!

Khloë was hospitalized at CHEO for about a week and a half due to low o2 sats and persistent pneumonia. We arrived home last night. Now we have a new piece of equipment: a Trilogy BiPap machine that Khloë uses for naps and overnight.

It was quite the trying week and I’ll write a post about it and update the Hello Kitty photo weekly updates as I can.

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.

Khloë: 4 months old (17 – 18 weeks)

I’m a little behind on updates due to our illness and travelling so here are two weeks combined:


17 weeks (April 1)

17 weeks (April 1)

18 weeks (April 8)

18 weeks (April 8)


Khloë was sick with bronchiolitis from March 31 – April 9. I talked about her illness here and posted an update here. Her phlegmy cough and clogged nose are gone. She is definitely sleeping and nursing better, and her disposition is back to normal. I missed my happy, smiley girl!

We spent April 6 – 9th in Kingston visiting family. Khloë and I made the rounds, visiting those who didn’t mind seeing a sick baby (and a sick mama). We spent a lot of time hanging out and shopping with my sister Crystal. My mom, Crystal, Keesje, and Aunt Margaret and cousin Brittini sent us home with tons of gifts (ie. clothes and princess stuff) for Khloë. She is so spoiled!


Gorgeous girl

Bright eyes

I’ve noticed Khloë’s skin has broken out again. The steroid medicine for her illness had cleared up the eczema on her forehead and temple but now it’s back full-force. She also has a rash around her chin from constantly drooling.

She is still in size 2 diapers and wearing a combination of 3-6 month, 6-9 month, and 6-12 month sizes, depending on the items. She’s approximately 14 lbs.

Khloë’s four-month needles are coming up next week!