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!

Oliver: 1 month old

November 23 – December 22
My baby boy turned one month old on November 23rd. It really is incredible how fast he’s growing! Oliver’s first neuromuscular clinic visit was scheduled for December 9th. He also had IONIS-SMNrx (previously labelled ISIS-SMNrx) injections scheduled for December 3rd and December 17th. What a busy month for my baby!


1 month old

Nov 23 – We received the Hope car bed and a box full of goodies from CureSMA! Oliver’s grandparent arrived from New Brunswick and Charlene and I set up the Christmas tree.

Nov 25 – Oliver had a hearing test done. He passed with flying colours.

Nov 26 – Home visit from Suki. Oliver weighed 10 lb 4 oz.

Nov 27 – Oliver had a hard time napping during the day. He was so over-tired that he fussed til 2:15 am. I think it was from all the noise in the house with his grandparents visiting. They stayed with us from November 23 – 30th and loved interacting with their grandbaby.

Nov 28 – We went to the Christkindlmarkt at the “Germania Club” in Pembroke. I bought various kinds of cookies and a bottle of dark maple syrup. Afterward, Jordan’s parents treated us to Thai food for lunch!


Snuggles

Dec 2 – We arrived in Boston, Massachusetts after a twelve hour day of driving and frequent stops. The day before we had driven to Kingston and stayed overnight at my mom’s to save us some driving time. There was a mix-up with our room at the hotel; it was 10 pm by the time we got a room. Poor Oliver was miserable and just wanted to be asleep in his bed.

Dec 3 – A double whammy of a day: Khloë’s second birthday and Oliver’s injection #2 day! His big sister was watching over him that day. At the hospital, Oliver was weighed at 10 lb 9 oz and 22.6 inches long. His head and chest circumference were both 38 cm. At 12:30 pm we moved to the PICU where Oliver was given a dose of IONIS-SMNrx by intrathecal injection (into his spine). I stayed with him this time. He cried during the injection but tried to calm himself by sucking on his bottle. The rest of the afternoon he slept and ate normally. Around 7 pm, after Dr Swoboda finished her neuro exam and left for the night, Oliver began to fuss and needed to be either held, rocked, or nursed. At 9 pm, when Jordan went back to the hotel to sleep, Oliver became inconsolable. I asked for the nurse to give him Tylenol but the medication wasn’t written in the orders for the night and the nurse couldn’t reach the doctor. Finally at 3 am Dr Swoboda called and gave the go-ahead for Tylenol. She returned to the hospital at 4:30 am and held Oliver for two hours while I slept. She got him to take a 2 oz bottle of Similac and he calmed down after that.

Dec 4 – Dr Swoboda did Oliver’s last neuro exam in the morning and we headed out! We stopped overnight in Lyons Falls, New York; by Saturday night we were home.


Boston

Beautiful boy

Dec 9 – Neuromuscular clinic at CHEO. The morning prior, we drove up and registered Oliver at the palliative care building (Rogers House) and stayed overnight. We met Oliver’s team. I asked for a pulse oximeter and CoughAssist for Oliver’s use. Carlie (RT) loaned us her CoughAssist machine and said that she would have the pulse ox and new CA machine couriered to our home. We filled out some paperwork with our social worker: applied to ACSD, Muscular Dystrophy, Easter Seals, Disability Tax Credit Supplement, to name a few.

Dec 10 – Oliver received his first Synagis shot (RSV antibodies).

Dec 11 – Brought Oliver to see Dr K for his skin issues. His face was covered in crusts, through his eyebrows and getting close to his eyes. My boy was covered in seborrheic dermatitis! Dr K told me to use 1% hydrocortisone, and after two days of applying that, along with Glaxol cream, the crusts flaked off.

Dec 12 – Suki did her last home visit and weighed Oliver at 11 lb 3 oz. His length was 23 inches. Around this time I moved Oliver into size 2 Pampers and 3 month or 3-6 month clothing.

My mom visited with us until December 14th. My little Love Bug was full of smiles and laughter; a sound of pure joy. He was moving his legs more, turning his head from side to side, pulling his head back when held upright, and lifting his arms again. I loved witnessing these small miracles! His newfound strength is proof that IONIS-SMNrx is working!

Dec 16 – Arrived in Boston late at night. During the drive Oliver vomited while in his car bed and started choking on it. I had to unbuckle and pull him out quickly and turn him on his side. After a little crying, he was fine. Jordan pulled into a Dunkin’ Donuts and we cleaned him up in there.


Happy Oliver

Oliver's Christmas tree

Dec 17 – At the hospital, Dr Swoboda was impressed with Oliver’s improvements in strength since the last time she’d seen him–two weeks ago. He had blood drawn and a urine sample taken. He weighed 11 lb 3 oz. Injection #3 of IONIS-SMNrx was attempted in the PICU with no sedation; however Oliver was more wiggly than usual and the doctor wasn’t able to successfully give the injection. He got very upset this time and his o2 kept dropping. Luckily she was able to book an OR with an anesthesiologist for early evening. We met the anesthesiologist at 5:30 pm, signed the consent form, and handed Oliver over to the team at 6 pm. Dr Swoboda was able to do the injection successfully and I breastfed him in Recovery an hour later. We made sure Oliver was given Tylenol to prevent any pain or discomfort and he ended up having a very good night! Sedation seems to be the trick in giving him a much better recovery after the traumatic IV attempts and lumbar puncture. During our hospital stay Jordan was sick with a bad cold so he remained at the hotel for most of the time. When he did come over to see us, he made sure to wear a mask.

We had planned to head to my mom’s on Christmas Eve but with Jordan still being ill we had to stay home. That turned out to be for the best because then we were able to spent time at home after our return from Boston.

SMA: Neuromuscular clinic (September 3)

A few days after Khloë was discharged from the hospital, we went to our second Neuromuscular Clinic appointment. We met Dr L, an orthopedic surgeon, who was very friendly and great with Khloë. He liked that her feet aren’t terribly formed yet and he wrote up a prescription for Ankle-Foot Orthotics (AFOs). There’s an ADP form that goes with the prescription as well, which means we will only pay 25% of the cost.

In case I haven’t explained what ADP is, it’s short for Assistive Devices Program, and it’s for residents of Ontario. Once approved, ADP pays 75% of the cost of the device. In this case, the AFOs. We are awaiting ADP approval for the suction machine and feeding pump. Khloë’s equipment is very expensive! Another program we are hoping to be approved for is ACSD (Assistance for Children with Severe Disabilities). If we get approved for that, then ADP will actually cover 100% of the cost of the devices I listed! ACSD is based on our income.

We also saw the physiotherapist (not much to remark) and Kellie, the dietician. Kellie is looking into Pediatric Vivonex, an elemental formula, for when Khloë turns 1 in December.

Dawn, our nurse coordinator, gave us the CoughAssist machine to take home. She suggested we have Khloë play with the tubing and mask to get used to it first. Not sure what happened to the pulse oximeter we were supposed to be given… Both of these pieces of equipment are loaned to us from the Ventilator Equipment Pool at no cost.

Next we saw Dr MacL, a different respirologist. He doesn’t think Khloë needs BiPap just yet, but he wants to do an overnight pulse oximetry at home to get an idea of her sleeping O2 sats. We professed interest in the BiPap because we know Khloë will most likely need the extra breathing support when she gets sick.

And lastly, Khloë was assessed in her car seat with the pulse oximeter attached to her toe. We were trying to see if her blood oxygen level was different while upright. The OT still doesn’t want to help us with getting the car bed from FSMA Canada.

Later that afternoon Jordan and I met with a genetic counsellor. We found out that we are indeed carriers of the SMA gene. No surprize there! In order for Khloë to have Spinal Muscular Atrophy, both of us had to be carriers. The counsellor drew our family tree, explained a few things about autosomal recessive genes that we already knew, and said that she would be mailing a letter to us that we could give to family members. The letter would explain our family history of SMA and would encourage family members to get tested to see if they are carriers of the gene that has changed our lives!

SMA: Neuromuscular clinic (July 9)

Khloë’s first Neuromuscular Clinic appointment was July 9th. Clinic only runs on Wednesdays, every other week. Unfortunately, our visit was not as successful as we had hoped it would be. Most of the specialists were great, but one doctor kind of ruined the day for us.

On Tuesday, July 8th we met with Khloë’s pediatrician, Dr I. That appointment went fine as it was just a follow-up on how we were dealing with our daughter’s diagnosis. Dr I asked if she can continue to follow Khloë’s progress; we agreed to this request.

That same day we saw the surgeon who would be performing the G-tube surgery. Dr B was extremely hard to understand and I felt that there was a language barrier. I’m sure he’s a great doctor, but I didn’t feel comfortable with the consult. He doesn’t want to do the surgery while Khloë can still eat orally, but that contradicts what her neurologist said. Dr M originally told us that getting the G-tube proactively, before she is sick and has developed breathing problems, would be better for her, especially in regards to recovery. I think these two doctors need to have a discussion. Jordan and I want Khloë to have the surgery by the fall, at least.

On Wednesday, July 9th we walked back over to the hospital for our first visit to the Neuromuscular Clinic. It turned out to be a long, exhausting day. Khloë was very tired as she was up at 6:30 that morning; she refused to nap before the appointment and then as soon as we arrived I could tell she wanted to sleep. She needed a lot of attention to keep her from being really miserable, so it was hard for me to really concentrate on what the specialists were saying. I felt rushed and overwhelmed.

First we met Kellie, the dietician, who told us to start Khloë on one food at a time to check for allergies. I explained to her that we already give her mixed cereal and various fruits and veggies all within the same days and she hasn’t had any reactions. I’m not going to change the way we feed her because there are no food allergies in our families. I asked her to find out more information about dairy products, as I’ve read that SMA kids have a hard time digesting the fat molecules in dairy because it takes too much of their body’s energy.

The Occupational Therapist was still trying to find us a bath seat. She also found a neat portable pool (it’s tall and deep) which includes a flotation device that keeps the child’s head above water. She’s hoping to get funding to cover that item. The pool would be beneficial since it would give Khloë the ability to really move her arms and legs–aquatherapy!

The physiotherapist showed us how to do chest therapy with percussor cups. We are to do 3 minutes on each lung lobe when she gets a rattle in her chest or when she is ill.

Next up was the respirologist, Dr. K, a few students, and the respiratory technician. I’m not at all fond of the respirologist. He seemed to think us wanting to be proactive with getting Khloë specific equipment early on wasn’t a good idea–we requested a suction machine, CoughAssist, and pulse oximeter. We don’t want to wait until she’s in distress; we want these items as soon as possible so we can be trained on how to use them. He is giving us the suction machine, which the respiratory tech, Carlie, showed us how to use later on. However when I said I wanted the CoughAssist machine (as every single SMA parent has told us to get it ASAP) Dr K said that he only recommends it for children over 5 years old…to which I replied that Khloë may not reach that age. I was getting frustrated by this point. So after he left, Carlie compromised and said she would give us the loaner CoughAssist machine to try out in 2 months time when we go back. Jordan and I have come to the conclusion that we still want it NOW and not in 2 months. I sent an email to Carlie about our decision.

Finally we saw the social worker and explained all our concerns about Dr K. She assured us that if we don’t get what we want, we can always ask for a second opinion because it’s completely our decision about what equipment we want. With the neurologist not being there, we couldn’t go to him. The social worker and our nurse coordinator have been awesome, though!

Khloë: 7 months old (31 weeks)

A new week:


31 weeks (July 8)

31 weeks (July 8)


Khloë saw her pediatrician Tuesday afternoon. Dr I will keep her file partially open in case we need pediatrician care but we won’t be required to do follow-ups. We also saw Dr B at CHEO, the surgeon, about the G-tube surgery. And finally on Wednesday we had our first Neuromuscular clinic appointment (separate post coming). We had a good experience with some of the specialists, but not so much with the respirologist; he doesn’t seem to agree with our proactive approach to Khloë’s respiratory care. SMA is degenerative and she will never be more healthy than she is right now… She will need medical equipment to manage her disease, regardless, so we feel we should get it for her now so that she can be used to the machines before she’s in distress. The OT is still looking for a bath chair for her.


Photo shoot

Beach

We were home in time to unpack, do laundry, and clean up the house for the Harpers to arrive on the weekend. Two year old Hannah just loved meeting Khloë!

Khloë weighed in at 16 lbs but hadn’t grown in length.

We also received an amazing care package from Families of SMA Canada:


FSMA Canada care package

They also sent a Radio Flyer wagon! We are so thankful for this package; Khloë loves the little toys and enjoys being pulled around the house in her new wagon.