Rambo's Rampages...

Last time I wrote I said something to the effect of weaning Theodore off oxygen and hopefully being off completely within a month or so. HAHAHAHA. Pipe dreams. Here's the deal: he was doing really well, but then he got sick. A week of fever and low sats and high heart rate..... some kind of infection or virus, who knows. Anyway, we are going on 2 weeks now of no time off the oxygen at all. And that's okay. It shows us that he isn't ready to be free of it yet. Not fully anyway. Once he fully recovers we'll start weaning again, but he's showing that recovery takes some time. So we have just settled back into same ol' same ol' and aren't rushing anything.  Below I am listing a link to a bunch of signs that Theodore has learned and is using or is learning. Several people have asked so here is your reference :) Mama Dad School More Please Music No Time Change Home Thank you That's a good start for now. These are the ones that...

Big news on the blog today. (Drum roll please......) We have started weaning Theodore's oxygen! You can probably recall that many many months ago we took him off his vent. (Remember that terrible summer of 2012 that landed him on the vent in the first place?) His oxygen requirement since then has also come down. Way down.  We took him to the pulmonary doctor the other day, who apparently did not remember that he no longer uses the vent. She was quite pleased that he was doing so well. She also was the first person, aside from his primary doctor, who actually showed some concern about the bleeding from his trach issue. If you recall, last year he was flown to Hopkins because he had a lot of fresh blood and a clot come out of his trach. This has happened 3 times since then. Each time it's over within 30 minutes and he shows no signs of distress but we have no idea what is causing this. So the pulmonary doctor asked several questions and ordered an xray but I've heard no...