Clinic today was just fine. Gianni was a bit apprehensive this morning when I put the numbing cream on her "owie spot" -
G: "Is there going to be a poke today mommy?"
M: "Look me in the eye Gianni; Yes, there will be one poke today, only one and it will be a quick one - and then we can visit with Auntie Trish (our NP). No sleepy time today, just one poke."
G: "Okay, but can I bring my brand new spitty?"
We usually all put the numbing cream on - today she asked me to be sure to cover my very own owie spot (a small mole on my chest)... very sweet.
The access went as well as could be expected, the nurse we got was a 'regular' and she is pregnant, only after not seeing her for a whole month, she is really pregnant. Gianni asked her if she ate too much ice cream.
It was oddly good to see the regular clinic folks again (it has been 1 whole month!). The visit with Trish was great. Gianni's numbers all look good (17.8 kg!!!). We will be cutting her meds to 1x per day (Q day for those of us initiated) AND we will be stopping all her feeds effective tonight. We will go back next Monday for a weight check and a quick blood chemistry to see where she stands, if all goes well - we will remove the NG then. This is a milestone: We have been feeding Gianni every night since Feb 14th of this year using the NG and the pump. The clicking of the pump has become some sort of metronome for my sleep... and the beeping of the "I'm stuck" alarm an immediate wake-up call (sometime 2-3 times a night). I am really hopeful that her appetite will keep up and she can maintain her mass (keep your parts crossed!). She has some weakness and splaying in her ankles from the Vincristine - this is an expected side effect and with physical therapy and the right shoes (potentially braces for a short time - we'll see) should resolve itself.
After clinic we made a brief visit to our friend Emily who has been in 1N lock-down for F&N for the past week or so. It was great seeing her, Gianni reads her blog every night and was excited to be able to bring her a little "get well" gift. She was in one of the rooms where we have spent many a week with Gianni's F&N, weird, but good to see Emily doing so well.
Gianni and I went shopping after clinic to get the "right shoes" - and no shopping trip is complete without a rootbeer stop... big fun.
We had a great family night, wonderful dinner and the kids and I salvaged some old bananas by making banana bread - always good kitchen time.
More later, thank you for checking in.
