1st week of Maintenance

What I've heard about the maintenance phase was that there will be more structure in our lives than it has been in the past 9 months. The paranoia will still be there at least in the beginning, afraid that our child will get easily exposed to viruses and could cause problems in her current condition. Although Olivia can resume doing a lot of her normal activities, I could see that it might not be as quick of a transition one would like to think. I think it's perfectly normal though and I think Olivia will get back at it in her own time.

Olivia taking short naps in the car while we're out

1st week into maintenance and I can visualize more now what it would be like for the next year and a half. Every month, Olivia will be taking dexamethasone for 5 days, the steroid that causes mood swings and increased appetite. She just finished her 5 day meds and the mood swings have started, as well as her appetite! She has been having issues with her legs and stomach again but massages make her feel better. She still gets tired very quickly and we find it a little bit hard to take her out to family events because she would most of the time ask to go back to the car and sleep. We understand her limitations and so we definitely select events that she goes to.

Part of her daily meds require her to fast and that's been challenging too because of the increased appetite. Somehow I like the increased appetite because it gives her a little boost, which is helpful when she goes through periods of not wanting to eat. I just don't like the fasting part. We have had this regimen before but it only lasted for a few days/weeks at a time. This time in maintenance,  she would need to follow this schedule everyday.

I feel bad not giving her food when she asks but I just try to explain to her that the medicine won't work if she eats right away. I try to think about how to handle giving her meds when we're not at home as it requires a lot of prepping. I'm sure we'll get used to it at some point, and get better at the routine as we go along.

Other than that, Olivia is doing well and has been spending quick trips to the beach which she enjoys very much.