105.2 pounds: we’re making progress

Noah got on the scale today, he’s a 105.2 pounds fully clothed (that’s his sneakers in the photo).

It’s a small victory, but it’s a victory…waking him up in the middle of the night to help him drink ensure is a headache, but I’m glad there’s some progress…

Noah’s weight issue is a full time job that I wish I had the money to hire him a nurse and a physical therapist and a nutritionist to handle,

but we can’t so I have to be all three rolled up into one…

I’ll be able to breathe a little when he’s at 120, then really relax when he gets to 150…

But 120 is the immediate goal….

I’m glad there’s a little progress…I’m really worried…this last expert (and then my sister afterwards) scared the shit out of me….I had no idea how dangerous the situation had become, I’ve been so stressed with everything else…

Helping Noah is a full time job right now, but I’m glad he’s making progress 🥰

(If his weight had been lower, I would have called Dr. Sherman immediately to talk about TPN, so it’s great news there is some progress — monitoring Noah around the clock might be the more time consuming option then TPN, but it’s better for him and less expensive too (though Ensure isn’t cheap), but hopefully we can make it to 120 by July….)

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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