A new milestone

The last two weeks – once we got past Day One and the first night’s rough reactions – were smooth sailing. Each night, the kids easily ate their dose (Ari licking the bowl clean, trying to get every bit of chocolate pudding, and Aviv, finding the apple sauce and cinnamon combination to be his favorite) with minimal to no reactions. Instead of the trauma of that first night, we’ve enjoyed the time together each evening… reading books, playing games and talking. This is truly amazing time together – mandated quiet, quality family time - that we feel blessed to have.

Tomorrow we go back to Stanford for their first updose, this time to 2350mg – almost double what they’ve had these past two weeks. I was rendered speechless on Friday when SAFAR staff contacted me to consult about this next updose, and told me that the amount of powder involved at 2350mg is so large (about half a cup), that it becomes unwieldy to mix into pudding or apple sauce, so they suggest we replace one or two of the nuts in the mixture with actual nuts. Actual nuts?! Ones that we see and hold, that we need to go to the store to buy, and keep in the house? After banning them from our house for so long, it was hard to imagine. So Ari and I went to the store this weekend to research nuts and buy some to bring with tomorrow, so that the staff could weigh them for the doses. Watching Ari interact with this new world was fascinating. He wanted to know about every nut… what were they called, what did they taste like… He wanted me to explain how the bulk food bins work, as he saw nuts in them and had always viewed them as taboo. My favorite moment was when he stood and stared in the candy aisle, and went through each brand that he knew by name as unsafe for him, confirming that he would be able to eat each of those over time. At one point he asked if he could eat the “Rick’s” candy, too. I looked confused, and he pointed to a package of Reece’s, which apparently – in the eyes of a 6 year old learning to read – is what it looks like it should sound like.

Depending on what the SAFAR team says tomorrow, we’ll likely have a combination of actual nuts and nut powder for this next round of doses. No “Rick’s” yet, Ari, but soon.