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)
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!
She’s getting close to hitting the 8 month mark! This week’s photo was taken in Bar Harbor, Maine with Travel Hello Kitty. 😉
33 weeks (July 22)
We arrived in Bar Harbor on Sunday, July 20th. The weather was perfect except for one cold, rainy day. Khloë loved her new stroller and fell asleep in it every time we would go out. I’m so glad we purchased it! Unfortunately, Baby Girl didn’t sleep very well. We spent the week in Jordan’s parents’ new trailer, which meant Khloë had to sleep in her pack and play in the living area. This arrangement made it difficult for her to catch much-needed zzzzz’s. Other than the sleep issue, she adjusted well to sight-seeing during the day.
Jordan’s parents absolutely adore their granddaughter! His mom, Charlene, spent the first 3 weeks of Khloë’s life with us, but his dad hadn’t met her yet. She was a little hesitant at first, but she warmed right up to Nan & Papa!
She continues to breastfeed very well and eats a few bites of pureed food with meals.
On July 27th we left the campground and drove into New Brunswick!
Sorry for the late updates! We were away for a week and then had company over my birthday weekend. Trying to play catch-up before we head away for 2 and a half weeks!
My girl turned 7 months old in the middle of the “week”:
30 weeks (July 1)
Canada Day was not eventful; we did nothing other than a mini photo shoot. Khloë was in bed early and wouldn’t really understand the concept of celebrating Canada at her age.
On Thursday we packed up the car and drove the 3 and a half hours to my mom’s cottage. We got settled in the guest cabin, set up Khloë’s bed and the camera for the monitor, and then enjoyed the fresh air and beautiful view over the lake. It was so nice to get some relaxation time in and it was just as wonderful to see my mom! Even though most mornings she was awake at 6:30 am, I was pleased with how well Khloë adjusted to being away from home for a longer period of time.
Friday we took Baby Girl to visit my tante and cousins. Khloë had her first ferry ride!
First ferry ride
And Saturday was the Great Summer Spectacular BBQ for Ashe’s 3rd birthday and Khloë’s 7 month “half” birthday. The cottage was a happenin’ place that day! So many people came out to celebrate with us. I plan on writing a separate post about the birthday bash. We spent the following day winding down from the crazy party and enjoyed hanging out with my brothers and sisters. My brother Mark, who lives in Newfoundland, flew down for a few days with his girlfriend. Khloë has finally met all her uncles!
To end a great week, on Monday we drove to Ottawa and checked in at Roger’s House (CHEO) for our 3 day stay.
This picture was taken at night so the lighting is a little weird:
27 weeks (June 10)
This was a tough week. First Khloë had her six month needle. She did really well because I was able to distract her. She weighed in at 15 lb 7 oz and was 27 inches long! That evening we traveled to Ottawa and stayed over at my sister-in-law’s house.
On June 10th we met with the neurologist at CHEO and learned that our beautiful girl tested positive for Spinal Muscular Atrophy (Type 1). SMA is a very scary genetic disease that I would like to devote an entire post to at a later date, but I will describe it quickly here:
SMA is a motor neuron disease that affects the voluntary muscles that are used for sitting, crawling, walking, neck control, and swallowing. 1 in 6000 babies are born with this disease and 1 in 40 people are carriers of the gene. SMA does not affect intellect or sensation. There are four types of the disease, with Type 1 being the most severe. Children with SMA are more susceptible to respiratory illnesses that can cause severe breathing problems. At some point, they require special equipment for breathing and a feeding tube to eat.
Currently Khloë is still able to breastfeed. She doesn’t have any problems nursing, breathing, or swallowing. She looks like any other six month old, except for her low muscle tone and poor neck control. We aren’t sure when more serious problems will arise, but we will do everything we can to keep her healthy and happy. In July we will travel back to CHEO to meet her neuromuscular team.
We spent this past weekend in Kingston informing friends and family about Khloë’s diagnosis. While it was definitely an upsetting reason to visit, we still managed to enjoy ourselves. Khloë loved watching her cousin Ashe play and she was all smiles!
Ashe & Khloë
My growing girl and her Hello Kitty doll:
26 weeks (June 3)
Each week it’s a little more difficult to get a perfect photo with her doll. Khloë’s neck control hasn’t improved and she is constantly falling over during photo shoots. Poor girl. It helps having Daddy there to act silly for her, which causes her to look up and try to hold her head steady.
Jordan started parental leave this week. He will be off until the end of November. Perfect timing because we will have many trips to CHEO and also to the pediatrician in Ottawa. In between all these appointments, we are planning to take two weeks this summer to go back home to New Brunswick so that Khloë can meet her great-grandparents and other family members.
I’m six months old!
We went to Circle Time for the first time this week. It starts right before the Prenatal Nutrition group. Basically we sit with our babies on a large round mat and sing songs and play with them. Afterward, those of us registered with Prenatal Nutrition stayed and made a ground beef and pasta dish for lunch. Khloë did really well missing her morning nap, but that meant by the time we got home she didn’t want any naps! I find if she misses one nap, then the rest of the day gets messed up for nap time. But that’s okay because we need to get out of the house once in awhile!
Finally, we had a visit from Baby Welcome Wagon. We were given a few coupons for free gifts around town, including vouchers for free flowers, a teddy bear, $5 at Giant Tiger, etc.