My girl’s last week as an eleven month old:
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.