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.

Upcoming

Next weekend we will be heading to Kingston to finalize a burial plot for Khloë. We decided to purchase a family plot. Then the burial will be April 11th.

At the end of this month Jordan and I will be flying to Orlando, Florida! I’m super excited about this trip. His parents wanted to take us on a much-deserved vacation and of course we said yes. Everything is now booked and the countdown is on! We have a surprize for them while we’re there, too!

Khloë: 11 months old (48 weeks)

Here she is, my 11 month old:


48 weeks (November 4)

48 weeks (November 4)


The Hope car bed, generously donated by CureSMA (Families of SMA Canada), arrived on Wednesday! We had been waiting for Khloë’s car bed for what seemed like ages and now we finally have it. Unfortunately, she’s already at the maximum length for it. We can use it as long as she is comfortable with her legs bent at the knees. The thing takes up almost the whole backseat, which doesn’t leave a lot of room for me to ride beside her plus all the equipment I need within arms’ reach. But we will make do. Since CHEO wasn’t being cooperative, the Montreal Children’s Hospital ordered the bed for us. 🙂


Sucking her lip

Khloë sounded congested in the mornings near the end of the week. Her breathing treatment consists of suction, chest PT, CoughAssist, suction, repeat. This helps clear the junk out of her lungs and usually gets rid of the rattly sound when she breathes. Daytime spot checks with the pulse oximeter have her o2 around 97-99, which is great. Overnight she sits around 96-97, which is a little lower than usual. I won’t worry about it until she consistently drops below 96. And even then, it could just be we need to use a new pulse ox probe or adjust her Pixi mask to reduce leak.

We resumed giving her 5 ml of Nature’s Answer sambucus (black elderberry extract) for immune system boosting.


Happy girl!

New headband and toy

On Friday, when I removed her mask in the morning, there was a red mark with a tiny blister on her cheek where the Pixi mask rests. I’m pretty sure it’s a sign of skin breakdown. In the above photo (flowered dress) you can see the marks on her face from the mask. A friend suggested we purchase Duoderm; it’s supposed to help heal the breakdown while protecting her skin from further damage from pressure. Our medical vendor said they could order some for us. A 4×4″ square of it costs $13 from them, but I found it on Amazon for much cheaper per square.

Khloë’s grandparents arrived Saturday night. She was very spoiled during their stay, with both gifts and attention. They had a way of making her laugh and laugh, it was way too cute!

Khloë: 7 months old (34 weeks)

Baby Girl turned 8 months at the very end of the “week” but I considered her 7 months for the majority of the week. This one was taken at Nan & Papa’s home in New Brunswick with Travel Hello Kitty!


34 weeks (July 29)

34 weeks (July 29)


Her Nan & Papa brought that onesie back from San Fransisco!

Still in New Brunswick visiting with family. There are so many family members who need to meet our little girl. Khloë saw her Uncle Luke again and met Jordan’s oldest sister and her two kids. Her Great-Nan & Great-Papa gave her so much attention! They pray for her every morning and night. She also met Great-Grammy, Jordan’s godparents, two of Jordan’s friends, my co-worker Lori who was posted to Gagetown, and various aunts and uncles.

We had to use the suction machine on July 30th and 31st to clear out Khloë’s junky-sounding lungs. We aren’t sure if we’re doing it right. I was afraid she was getting sick, but so far that’s not the case. She still wakes every two to three hours at night rather than the four to six she would do at home in her crib. Most of the time I think it’s gas pain and wanting comfort, rather than hunger. Due to SMA, she needs to be fed every four to six hours anyway.

Our lucky little girl was spoiled with two 8 month birthday parties, too.

August is Spinal Muscular Atrophy Awareness Month!

Khloë: 7 months old (32 weeks)

We have recently returned from a week spent in Bar Harbor, Maine and a week in New Brunswick at my husband’s parents’ house. I have quite a few entries to post; I hate being this behind but I had no way of updating.

My darling girl’s latest:


32 weeks (July 15)

32 weeks (July 15)


Nothing significant happened this week. We prepared for our 2.5 week trip out east to visit family by looking up travel routes, hotels, and packing. Khloë and I visited Amanda and her boys. Stacey and the girls came over and gave Khloë a box full of costume jewellery for photo shoots. And we bought a new stroller! The old Peg Perego we were given bit the dust. The new Harmony Odyssey we got is perfect for Khloë’s needs.


Cutie pie

All blinged out

Roses & pearls

On Saturday, we loaded up the car with an insane amount of stuff and drove the five and a half hours to Sherbrooke, Quebec. Baby Girl did great in the car the first day, but by day two she was not impressed with long travel days. We reached Bar Harbor Campground on Sunday evening!