I’m still here!
I’ve been trying to cobble together enough contiguous blocks of time to actually write a post. Nearly everything going on has been good; Nik is now on Day 23 of NO FORMULA, he’s sleeping well and he’s making phenomenal progress in so many areas. It really feels like we’ve turned a very big corner —kind of out of a dark alley and into a sunlit park.
Nik has an ambulatory (twenty-four hour) EEG beginning tomorrow morning. His MRI is scheduled for next Tuesday. Since my last post, we’ve had photo shoots for Easter Seals, a meeting with a rep from Prentke Romich to evaluate different communication devices and Niksdad graduated from nursing school. Oh, and Nik has learned how to sign and say “Papa” (he can’t say the letter D but can say P) and just started drinking juice. The latter is a vital step toward losing the feeding tube altogether. The doctor told me today that Nik needs to be able to drink a total of 1300 ml daily. For anyone trying to do the quick conversion, that’s just over forty-three ounces. Just under a quart and a half of liquid. We still have a ways to go.
Um, on that topic, Nik has also pulled his feeding tube directly out of his stomach no fewer than four times in the past forty-eight hours. Did I mention it was still fully inflated —about the size of a large cherry? Yeah, imagine pulling that through your stomach wall without cringeing.
We don’t do anything in half measures around here, do we?
In case I can’t find the words —or the time, I’ll leave you with a few glimpses of what we’ve been up to…minus the tube-pulling. I’ll leave that to your imagination.