6 months, 3 weeks, 3 days since diagnosis
My poor baby has been having Ativan withdrawals. After the suggestion of a friend, I did a little research on the internet last night about benzodiazepine weans. Typically, you don't want to reduce the dose by anymore than 10%. Riker's was reduction from .13 ccs to .1 ccs was closer to 25%. I am so glad that I was encouraged to read up on this - the list of side effects is long and painful. They are also nothing like what was casually described to me by the doctors. benzo withdrawals are nothing like narcotic withdrawals! I had no idea what I was looking for!
At clinic today, Riker was given an IV dose of Ativan and she was almost instantly back to her normal self. She's exhausted and moody but I am confident that she'll be happy after she can get some sleep. We've upped her dose significantly to confirm it is the issue. She'll be on .2 ccs 4 times a day and her original dose was .13 ccs 3 times a day. We're making one change at a time so that we can slowly troubleshoot her issues.
I have to say, I didn't realize how much I love Riker's primary oncologist here in Maine. Her team in Boston is fantastic and I love them, too. However, Stanley and Leslie are VERY different and I appreciate the careful, deliberate nature that Stanley has. They both make me feel heard and now that most of our appointments will be in Maine, I'm grateful that Stanley will be working hard to figure out what is going on with Riker so that we can come out of this as normal and whole as possible when it is all over.
Last week, we'd talked in Boston about getting early intervention in to help Riker with meeting her milestones. Today, Stanley mentioned he wanted to see her with physical therapy, occupational therapy, and speech therapy. He was more concerned about her eating and not relying on the g-tube. We've got a lot of work ahead of us.
Riker's weight continues to be great and he agreed to let me cut out one of her 5 feeds daily. If she starts losing, we can always add it back in. This way, at least she'll have the opportunity to get hungry. Really, the only "normal" thing that Riker does for her age is sit up. She's making no attempt at moving around and rarely even bares weight on her legs. She's not babbling much, either. She did so well through her chemo but the transplant has really set her back. She'll be a year old in less than 2 months!
It's nice to be worrying about these things, though. We're finally able to look to a future and try to plan for it. One day at a time, Riker will progress. Getting her to consistently feel better is the first step. When she spends less time crying, she can spend more time learning :)
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