Tomorrow Martha is going to get a new GJ Mic.Key button. The procedure is scheduled in the morning at the St. Paul Children's hospital.
This works out well for us because later that day Martha has a second appointment with a pediatric ENT to hopefully diagnose a possible mouth birth defect and/or cyst-like tissue in her mouth.
In the meantime, Martha's J-port of her tube is completely blocked, and we are running her pump through her gastric port at a much lower rate to keep her nourished and hydrated at a less than optimal level. When liquid is put directly into her stomach, it causes added secretions/mucus, which especially on top of a respiratory infection, are difficult for her to manage. She's doing very well with it thus far, but it will be very nice to get her new button and her pump running full speed again.
Martha has another appointment on Wednesday (a bit more local--only 30 minutes away), that has a tendency to take HOURS. But, this specialty is incredible, and really, REALLY understands Martha and the way she moves, her tone, her strengths and weaknesses. I have a feeling that as soon as Martha loses her Cranio-Cap that this specialty will be bracing her arms and legs. More on that later.
Add all of that to occupational therapy, physical therapy, a Cranio-cap adjustment, an order to medical supplies for bags, syringes, and extension sets, plus a cortical vision assessment, and hearing test to schedule, and there you have our week in a nutshell.
I'm on my second cup of coffee and have a meal plan for the week ready to go.
Welp, that was interesting
3 weeks ago