I’m totally loving little baby skirts:
It has been two months since Khloë’s diagnosis of Spinal Muscular Atrophy (Type 1). I never thought that we would get through those months without some sort of emergency popping up, but I am happy to say that our baby girl is doing okay! She can still breastfeed, eat pureed foods, laugh, smile, and play with her toys. That is amazing!
On Thursday I spoke with Dawn, the neuromuscular nurse coordinator at CHEO. She gave us the news that Khloë was placed on the emergency elective surgery list. This means that Baby Girl will be getting a G-tube put in within the next few weeks. We don’t have a date yet, but the surgery requires a 3 days hospital stay. We are doing the surgery proactively, as Khloë will eventually lose the ability to swallow. She can still have the G-tube and eat orally.
We had another visit from the nurse this week to finish paperwork.
Khloë weighs 16 lb 4 oz, is 28 inches long, and is still wearing size 3 diapers.