It's been a busy last week. New trials and old issues resurfacing.
New formula trials that need to be adjusted to give Zayden a better chance of tolerating long-term. So far, his reaction to it has yielded a mixed bag of results and a lot of extra laundry. He was started on 170ml volume at 170ml rate 3 times a day with 535ml of water overnight. His little body was not happy with this arrangement - the results were vomiting and lots of gas.. After a few days with no improvement, I spoke with the nutritionist, and she gave me a few other alternative feeding schedules to try. We next tried 170 ml at an 85ml rate - again, not so good results. Then Friday night we tried the third schedule she suggested - 114ml 3 times a day at 39ml rate with a mix of 170ml feed and 170ml water overnight at a rate of 49ml. Finally, we are having pretty good results. Minimal to no vomiting and reduced gas buildup over the last 2 days.
Additionally, met with a new Pulmonologist for Zayden. His office is closer to home, doesn't require me to go over that dreaded Skyway bridge, and actually has a direct contact number. This is the kind of approach I like, rather than having to go through the scheduling department and then be sent to the message center, which requires leaving a message to wait for a response. After a few days, you may receive an answer to your original question or request. I was pleased with the answers this Pulmonologist gave me to my questions. He is knowledgeable of CDM1 as well as willing to collaborate with other doctors on Zayden's case.
We have also gotten approvals for evals for Zayden's new wheelchair, stander, medical stroller, and Peapod chair. The evals are scheduled for the 22nd with his PT, OT, and Unified's team. His Orca tub with Penguin seat, his new vest and cough assists, and the creepster crawler should be here any day.
Zayden also got his first haircut. This little boy's hair grows so fast. I chose a high and tight style hair cut for him.
Add comment
Comments