Wow, she’s getting so big!
So that shirt she’s wearing? It’s size 2T! Must be made small though; her other T-shirts are 12 or 18 month.
Lots of appointments and meetings this week. Here’s what went on:
Tuesday: We met Leona, a dietician with CCAC, for the first time. We talked about Khloë’s current diet and I explained that we would be switching to an elemental formula when she’s a year old. Jordan and I have discovered that any dieticians we deal with are trying to get us to feed our daughter as if she was a child with normal muscle mass. She needs less fats and proteins than a “normal” kid. There aren’t any documented studies on SMA and nutrition. I have spoken with other parents who have been feeding their SMA kids special amino acid formulas, baby foods, and breastmilk and we plan to do the same; but to get the dieticians on the same page is a hard task! These parents are not considered “professionals” to them. She had a portable scale with her and weighed Khloë at 16 lb 13 oz and she measured 28″ long.
Wednesday: Mary demonstrated some infant massage techniques to use on Khloë’s legs. She loved it! Mary lent us a Tumble Form chair to use for Baby Girl, as well. We also discussed the latest car bed issue–that CHEO doesn’t want to deal directly with FSMA Canada, but Khloë’s neurologist is willing to write a prescription for the Hope car bed and EZ-on Vest.
Thursday: A military chaplain came to our house and spoke with us about Khloë’s condition and how it will relate to Jordan’s work. He assured us he’s there to advocate for us and will do his best to make sure we don’t fall through the cracks, so to speak.
Sunday: After church, we had a delicious lunch at Ken & Sandra’s. They let us bring Khloë’s stroller inside and park it in the kitchen. It’s too awkward to hold her on our laps while eating since she needs extra support, and the stroller in the carriage position is perfect for her to lay flat and play in.
Monday: Taunia (Occupational Therapist) and Christine (Physiotherapist) from CCAC stopped by. Taunia gave us a larger Tumble Form chair. I attempted to feed Khloë while sitting in that chair but she started choking. The recline position is just not right. Taunia also gave us a few ideas for messy and sensory play. Christine just observed Khloë and made sure we were still comfortable doing chest therapy. Later in the afternoon, Kathy (Case Coordinator from Infant & Child Development) met with us for the first time. Her role is to help us with applications, find relief workers, and to offer any other kind of help we need. We had a great conversation with her. She walked us through the application for Special Services At Home, yet another program of funding we would like to be approved for.