This picture was taken at night so the lighting is a little weird:
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!