Oliver: 6 months old

Here is what’s been happening in the past few months!

2 MONTHS OLD
December 23 – January 22
– Daddy was very sick so we stayed home for Oliver’s first Christmas instead of going to family celebrations in Kingston
– We went to our church’s Candlelight Service on Christmas Eve
– On Christmas Day we Skyped with everyone at Oma’s
– On December 31st Oliver received his second RSV shot; that evening Uncle Luke & Aunt Katelyn arrived for a 4-day visit
– Oliver weighed 11 lb 14 oz on January 6th, length 23 inches, and head circumference 40 cm; this showed no weight gain since end of December
– Drove to Kingston on January 7th for the weekend; hung out with Oma, went shopping with Aunt Keesje, and Oliver met my Uncle Dale and Aunt Margaret
– Oliver weighed 12 lb 3 oz on January 13th
– January 16th marked one year that my baby girl Khloë has been in Heaven
– On January 21st Oliver received his fourth injection of Nusinersen (IONIS-SMNrx) in Boston with Dr Swoboda; he had the CHOP-INTEND physio test in the morning and injection was scheduled for late afternoon in the OR with sedation; he weighed 12 lb 5 oz, length 23.5 inches, head circumference 40 cm, chest circumference 40.5 cm
– Packed away Oliver’s 3 month onesies and pulled out size 6 month; he was still in size 2 diapers


2 months old

2 months old

3 MONTHS OLD
January 23 – February 22
– Kicking his legs, waving his arms and holding his head up are major milestones
– Oliver was becoming interested in toys dangling in front of him; he smiled and cooed a lot
– Jordan and I celebrated 10 years together on February 2nd
– Oliver weighed 12 lb 9 oz on January 28th; this showed very little weight gain in 18 days and a half inch gain in length; Dr Swoboda recommended a swallow study to rule out swallowing issues
– He started showing signs of silent reflux (twisting and arching while breastfeeding, crying, needing to be upright often); he was prescribed ranitidine
– On February 4th Mary from Infant Development met Oliver; later he received his third RSV shot
– Nanny & Papa visited from February 5 – 10th; Oliver enjoyed having “conversations” with them
– Oliver lifted his head up, for the first time, while propped on a nursing pillow
– Struggled with getting him to take a bottle; he gagged on everything I tried
– By the middle of the month I moved Oliver into size 6 month pants and size 9 month onesies; also switched to size 3 diapers
– On February 15th I woke up in extreme pain from mastitis; spent Family Day at the emergency room to get antibiotics
– On February 16th Oliver had a swallow study at CHEO; he was put in a high chair and fed liquid barium in a squeeze bottle; the x-ray showed no signs of aspirating while swallowing
– Oliver had neuromuscular clinic on February 17th; Dr M showed concern for Oliver’s lack of weight gain and suggested we have a consult with general surgery about getting a g-tube
– We met with Dr Bass (surgeon) on February 18th and talked about g-tube surgery for June


3 months

3 months

4 MONTHS OLD
February 23 – March 22
– Oliver weighed 13 lb 1.5 oz on February 23rd, length 25 inches, head circumference 41 cm
– Started feeding him Neocate Infant formula by syringe as a supplement
– On February 24th he had his fourth month vaccinations
– Tried carrying Oliver around in the Boba 4G to get him used to it
– My mom, sister, and nephew came on February 25th to spend the weekend; we did a lot of cooking and baking
– Oma discovered Oliver was teething by pointing out blisters on his gums
– On February 29th we celebrated Rare Disease Day by wearing out special shirts from Gwendolyn Strong Foundation
– On March 2nd he received another RSV shot
– Switched to CeraVe brand for Oliver’s cleanser and cream; his eczema is so severe that everything causes him to break out and the eczema oozes; after a trip to the doctor about oozing and infected-looking skin, he was prescribed 1% hydrocortisone; Dr K sent off a referral to dermatology at CHEO
– Oliver finally learned how to use a pacifier
– Ordered a seahorse pattern Lillebaby carrier and Oliver was more comfortable in it


4 months old

4 months old

5 MONTHS OLD
March 23 – April 22
– Oliver weighed 13 lb 3 oz on March 23rd; his weight has stopped increasing
– He met all four month fine/gross motor skills
– Uncle Cheepow & Aunt Serena and the girls visited for Easter weekend
– On March 30th Oliver received his last RSV shot of the season
– We bought a used Outlander because we needed a larger vehicle; Jordan plans to sell my car
– Mary worked with Oliver on April 7th; she loaned him a Tumbleform chair
– I bought a used Baby Einstein activity jumper for Oliver
– On April 9th Oliver tried brown rice cereal and pureed sweet potato for the first time
– Oliver started rolling from his right side onto his belly but can’t get his arms out from under him yet
– On April 13th we had neuromuscular clinic at CHEO; Oliver’s occupational therapist supervised him eating pureed food; we also met with his other specialists; he showed off his new skills; had a long conversation with Dawn about Oliver’s lack of weight gain and agreed we needed to move his surgery up
– Oliver weighed 13 lb 4 oz on April 13th, length 25.4 inches
– Oliver was admitted to CHEO on April 14th for failure to thrive; an NG (nasogastric) feeding tube was inserted and he was placed on the waiting list for emergency gastrostomy surgery; the tube made him sound phlegmy and put him at a higher risk for aspirating; I continued to breastfeed before every tube feed
– Oliver weighed 13 lb 6 oz on April 16th
– On April 19th we met the pediatric dietician, Julie, who understood Oliver’s needs in regard to SMA; we moved his tube feeds to every 4 hours
– On the morning of April 20th Oliver had gastrostomy surgery performed by Dr Bass; a PEG tube was inserted; PPN (peripheral parenteral nutrition) was ordered to keep him from fasting after surgery
– Oliver’s tube feeding was scheduled at 75 ml breastmilk every 4 hours at 75 ml/hr and breastfeeding on demand


5 months old

5 months old

6 MONTHS OLD
April 23 – May 22
– On April 25th Oliver was discharged from the hospital and we moved over to Rogers House for the night; CCAC ordered us some enteral feeding supplies and then we headed home the next day
– Applied for Oliver’s first passport
– Oma stayed with us April 29 to May 2nd; she helped cook while we got used to a new routine with Oliver
– Oliver weighed 13 lb 13 oz on May 4th at the doctor’s office, length 26 inches, head circumference 42 cm; refilled ranitidine prescription and he had his 6 month vaccination
– Jordan’s parents arrived May 7 and stayed til May 10th
– Approved for ACSD (Assistance for Children with Severe Disability), but for the bare minimum
– Travel itinerary for Boston was booked; our first time flying for the NURTURE trial
– Oliver enjoyed being able to sit supported on the floor with toys in front of him
– His first tooth finally came through
– We registered for SMA Family Camp Ontario (July)
– I purchased a new stroller, Bugaboo Donkey Mono, for Oliver; insurance agreed to pay for 80%
– On May 16th we flew to Boston; Oliver did great on the plane, although the whole ordeal was stressful for myself; car service delivered us to our hotel
– In the morning of May 17th Oliver had the motor function test (CHOP-INTEND) and in the afternoon the CMAP; Dr Swoboda was very pleased with his progress
– On May 18th Oliver had his fifth injection of Nusinersen with sedation; he weighed 14 lb 2 oz, length 25.9 inches; he passed the neurological exams and that evening we left the hospital to go out for dinner; the next morning we returned to the hospital for one last neuro exam
– On May 19th we flew home
– I can’t keep Oliver from constantly rolling from his back to tummy, he’s seriously working on this skill


6 months old

6 months old

6 months old

I cannot believe my little boy is 6 months old! We are so happy with the progress he has made; he truly is a miracle!

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: 7 weeks old

Baby Girl is a growing machine! She nurses like a champ, spits up a lot, but still continues to gain weight. A few days ago she weighed just over 11 lbs. She’s still in size 1 diapers and 0-3 month clothing fits her well. A few onesies are getting snug in length and belly, but that’s probably just the brand. The onesie in the picture is one of the snug items!


7 weeks old

7 weeks old (January 21)


On the weekend I ended up having to go to the ER in Deep River for mastitis. My right breast had a swollen, hot, red patch that was incredibly painful. The night prior, I had suffered from headache, chills, fever, and sweats. I thought I was just getting sick but a friend tipped me off that it could be mastitis. The doctor took one look and said, “Yep, that’s an infection!” and wrote me a prescription for clindamycin. I have been taking the pills all week and only have another two days to go. Some of the antibiotic does enter the breastmilk, but I was assured not a significant amount. By Sunday night, poor Khloë had suffered from diarrhea all day. I only realized that’s what it was after changing the ninth dirty diaper and looked it up in a book. I quickly called TeleHealth and the nurse advised us to take her to see a doctor. So back to the ER at 9 o’ clock at night–but we were the only ones there so it was a fast trip. The doctor wasn’t worried as Khloë was still drinking and wasn’t getting dehydrated. She said just to keep an eye on the poop to make sure there’s no blood.


Pretty in pink

Pretty in pink

Dressed for church

Dressed for church


Khloë still sleeps a lot during the day. When she’s awake we play hand games or go on her play mat. She gets excited when we put her on the change table and she is definitely starting to smile at Mommy and Daddy. For such a happy girl, a few evenings a week she gets really fussy with gas pains and cries constantly. It’s hard to handle seeing her in pain and not being able to make it all better.

I don’t know how long baby acne lasts, but her face is always covered in little red splotches.