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!

I can’t wait to see you again *

My dad has been staying with me the last two weeks. It’s nice having another person around instead of just me, so that I don’t fall into the habit of talking to myself. Not that I would…um, anyway. lol Jordan and I finally had a voice chat on webcam this afternoon, which was great. We talked for almost two hours then I had to go make some food because I was starving. It’s much nicer using the webcam instead of the telephone because then I can actually see the expressions on his face.

We are slowly getting our vacation planned out. Thailand, it is! I’ve got my immunizations up-to-date, and I forked over $65 for a painful Hepatitis A shot. That one hurt a lot. I really dislike needles. The other two — MMR and tetanus — the nurse stuck in my left arm. That night I came down with a fever, headache, and wooziness. When I woke up in the morning, I was as good as new.

So now I’m trying to figure out cheap places to get plane tickets and reserve hotels. I can’t wait, I’m so excited!