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
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
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
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
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
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!
My girl’s last week as an eleven month old:
51 weeks (November 25)
She couldn’t manage to sit up without coughing, so we did our photo shoot laying down this week. I have been dying to have her wear those sparkly leopard print pants!
The biggest thing this week was the increase in the amount of times Khloë needed saliva/mucous suctioned out of her mouth. This is definitely a progression of her disease; she will slowly lose the ability to swallow. She also coughed quite a bit on her own, which in itself is pretty good as they were strong coughs, but they sounded phlegmy. However, she wasn’t sick.
I used the week to prepare decorations for her upcoming birthday party. I’m also working on decorating the backdrop for her birthday photo shoot. The blue lace romper I ordered from OnceUponATimeTuTus on Etsy arrived!
On Thursday the Occupational Therapist from CCAC came to take Khloë’s measurements. We have started the process to get her a medical stroller because she is quickly growing out of her current “baby” stroller. The one we use now allows her to lay flat, but her feet are touching the end so we need something different. Plus our stroller is not meant to hold heavy medical equipment. We will be working with a vendor in Ottawa who will bring us sample strollers to try out. ADP and ACSD should cover the cost of the stroller. The application, though, could take 4-5 months for approval. While we wait for that, I hope the vendor will let us borrow the stroller we eventually pick out until payment comes through.
Also, we received the grant money for enteral feeding supplies from ADP. Our application was submitted in August and was just approved–that’s how long this stuff takes! A large portion of the checque will go toward purchasing a Kangaroo Joey feeding pump and the rest is meant for supplies (syringes, Mic-key buttons, extension sets, feeding bags, etc). I totalled up our invoices and, since September, we have already spent $500 on enteral feeding stuff for Khloë.
My cousins Delia and Andra, and four of Andra’s kids, came to the house to visit on Friday. Little Eleanor played with Khloë the whole time!
After they left we packed up and drove to Pembroke to see Christkindlmarkt at the Germania Club. Inside there were many vendors selling European-style Christmas items. We pushed Khloë around in the stroller, even though it was pretty packed and hard to navigate. When we first arrived, we parked the stroller near the back in the quietest spot we could find and set up her feed. The lady whose stall we had stopped near came out to talk to Khloë while I got everything ready. She didn’t even bat an eye when I pulled up Khloë’s shirt to attach the extension set to her Mic-key button. She was very friendly and said we had found the perfect spot to get our baby’s milk ready! When we were leaving I saw there was no line to see Santa, so Khloë and I got our picture taken.
We don’t do the Santa Claus thing, but I thought we should at least get a picture. That was the best one Daddy could get.
The site has been down for a bit, or very slow, due to some issues that Surpass has now fixed and I’m finally able to login to my WordPress. I’m happy that they did their best to fix the issue and kept me updated during the whole process without my having to ask.
Since I have very little time to devote to fanlistings like I used to, I have closed them all and now Quicksylver.org and Figuristka.org both redirect to this blog until I figure out what I want to do with them. I may let Figuristka.org expire at the end of January.
Anyway, Christmas 2012 was spent at my mom’s.
Goodies to snack on!
My mom planned a sort of “drop-in” event, meaning that between 2-4 pm anyone was welcome to show up and have some Christmas treats. There were all sorts of baked goodies and drinks available. After everyone left, my mom had turkey dinner for Jordan and I, my two sisters and their significant others, and my nephew. The food was amazing! Later, we Skyped my brother in Newfoundland.
Crystal and Ashe
Pumpkin rolls with cream cheese filling
Ashe @ 17 months old
This was Ashe’s second Christmas and he was spoiled with gifts! He loved gift bags and tissue paper more than the gifts, I think.
Our move date is looming closer! Pack Day is January 30th. I only have a couple weeks left at work. This is crazy! I’ve contacted our phone company, cancelled our current internet provider, and booked another one for the new house. There is still plenty of things left for me to organize or worry about. I hope this move goes smoothly.
I’m currently working on a cute cross-stitch pattern for Michelle’s baby that is due in May. It’s coming along nicely and keeping my mind occupied. Sucks that I won’t be around when the baby is born.
On November 30th we started our House Hunting Trip (HHT). I drove up to Petawawa and checked into the Comfort Inn & Suites. Shortly after I arrived Jordan showed up. That was the longest drive I’ve done on my own–3.5 hours–and boy was I ever stiff after getting out of the car! At least I know I can do the drive.
That evening we met our realtor. Throughout the weekend we looked at many homes in the Petawawa, Pembroke, Chalk River, and Deep River areas. Only a couple really appealed to us. We offered on one home but, due to structural issues that were discovered during the inspection, we decided it would be in our best interest not to purchase that house. Luckily there was one other home that we liked and that was in our price range. After a second look through it, we decided to make an offer. The inspection went well and now we have a home to move to in February. 🙂
A few iPhone snapshots from our trip:
Deep-fried brownies with toffee dipping sauce
Deer on the base
Mochaccino from a cafe in Deep River
Shawarma from “Madameeks”
Yesterday I headed over to JYSK for the half-price drapery event and purchased 6 full rod kits, a pack of finials, 2 long rods on their own, 10 drapery panels, 2 picture frames, and this cool light-up tree for $200. I think I hit the jackpot! Now I’ve got all the rods and curtains I need for the new house.
Sakura tree that lights up
Christmas is just around the corner! I’m pretty sure I’m finished Ashe’s gift. I just need to pick something up for J.D. and something else for Jordan, and then I’m finished.
Where did December go? I am a terrible blogger. I feel like time is going by way too fast and that I never have time to write anything down. Maybe that should be my New Year’s resolution? Except that I never make New Year’s resolutions, so why should I start now? Let’s play catch-up.
This Christmas both Jordan and I were sick. He came down with the flu on Christmas Eve, so I went over to my mom’s on my own. My aunt and two cousins came over; Keesje, Luc, and Ashe were there; my brother Mark came from Kitchener-Waterloo area; and Crystal was home from Thunder Bay, with Lukas. A nice little gathering for celebrating the holidays. I left a little early due to headache. Christmas morning I woke up at 5 am with an upset stomach, and twenty minutes later the nasty flu started! I haven’t been that sick in ages and I never want to be again! It was horrible! I missed my nephew’s first Christmas and missed a turkey dinner that I know was delicious. And I missed my Boxing Day shift which would have brought in a lot of money. But by December 27th I was perfectly fine and hubby and I went over to Keesje’s to give Ashe his gifts. I also tested out my brand-new Canon 60D on that cute little guy!
Ashe @ 5.5 months old
Happy Christmas smiles!
Stacey from work had her baby girl, Hannah, on December 12th, which happened to be her due date. I’ve been to see her a couple times but I feel like I’m always at work or my shifts just don’t align with a good time to visit. We had to cancel on each other twice last week due to various things. Baby Hannah Marie is now 3 weeks old and I definitely need to make more of an effort to get over for a visit. I need more photos of the cuteness!
New Year’s weekend Jordan and I spent in Ottawa at his sister’s and brother-in-law’s house. Serena is due the first week of March and I’m getting pretty excited! They came back from spending Christmas in New Brunswick with garbage bags full of baby clothes and items; it was so much fun to go through them. They’re fairly certain they are having a girl; let’s hope that’s true because there was an awful lot of pink girly outfits in the bags.
Other friends of ours also had their baby girl, Sofia Elizabeth. She was born on December 27th. After returning from Ottawa, we went over to Ryan and Stacey’s and met 5-day-old Sofia. She’s a quiet little thing with chubby cheeks – so cute!
And I believe everything is now up-to-date!