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.
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.
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”:
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!
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.
I changed the location of her weekly photo as it was getting too difficult for Baby Girl to sit in the big chair:
Starting to get pretty warm in the house. I think by next week we will be spending more time in the cool basement!
Not a lot went on this week. I have a growing pile of clothes set aside to pack away when I have a moment. Khloë is still in size 3 diapers and 9 month onesies. The 6 month onesies are snug in length. A few 12 month onesies fit her perfectly in length but are very wide at the shoulders so the shirt gapes.
I requested a special blanket from B4SMA: Blankets for Spinal Muscular Atrophy for Khloë and it arrived this week. A huge thank you to the ladies who send these blankets to our little fighters! Here are a couple pictures of Khloë with her blanket:
On Thursday my cousin Brandy stopped by for a visit. She brought us a huge Ziplock bag of freshly picked strawberries. I made strawberry popsicles and strawberry muffins; both delicious! Khloë enjoyed sucking on the popsicles.
At the start of the week we had an appointment with Dr K, Khloë’s family doctor, to discuss her recent diagnosis of Spinal Muscular Atrophy Type 1. She wanted to see how we were handling the news and had a nice discussion.
On Wednesday we had an enjoyable morning at Circle Time and Prenatal Nutrition. Khloë loved watching the other babies. She’s pretty content to lay on her wedge, slightly propped up, with a toy while we make lunch. The next day we hung out with Amanda and her boys at play group and then continued over to the marina playground for a picnic. Khloë fell asleep in the stroller on the walk over. A play date with a mom and little boy we met at the doctor’s office was supposed to be on Friday, but they cancelled due to a contagious skin condition.
And Sunday after church we drove to Ottawa. Monday was a pretty full day even though there were only two appointments. We met with Debbie at CHEO, the Occupational Therapist (OT) assigned to Khloë. She told us we are doing a great job in regards to the proper head and leg supports in the stroller and car seat. I brought some mashed banana and sweet potato for Khloë to eat and she did well, no choking. She liked the banana best, I think. The texture of the sweet potato might have been a bit much for her. Debbie gave us the go ahead to continue with purees and watch for symptoms like an abundance of drooling, choking, or coughing while she’s eating.
The second appointment of the day was at Roger’s House, the pediatric palliative care building. We met with Nancy and a couple of the doctors, and then toured the facility. We will be staying there in July when we have two days of appointments for Khloë. It seems like a great place for kids with life-limiting illnesses and their families. Nancy sent us home with some paperwork to fill out.
No changes in regard to weight, diapers, or clothing sizes.
You're just as sane as I am. — Luna Lovegood (H.P.)