Had Owens hospital follow up yesterday
So it's been 3 weeks since we got discharged from the brompton & we had our follow up appointment yesterday. They did sats (100%), weight & height (height 50th centile, weight dropped from 50th to somewhere between 25th & 50th), ECG (fine) and echo which showed no improvement, possibly slightly worsened, possibly about the same. From all the blood tests done, they haven't found any cause. They're doing one more test for Pompe disease but having googled it I don't think he has that as the key symptoms are a weak floppy baby who can't hold his head up and fails to meet physical milestones but Owen is very strong, everyone comments on it & he's even rolled / flipped himself right over a few times. Which is kind of a shame as there is a treatment for that which wouldn't make it go away but might prevent it worsening. Asked lots of questions. Basically as he is ok in himself and feeding, putting on weight etc, they're going to just keep watching, weigh every week, upped his beta blocker and await the Pompe disease result. If that comes back negative might see a geneticist and metabolic specialist to see if they can suggest any other causes. Otherwise continue as normal. Back up there on 11 august and they'll do another echo to see if there's any change. On one hand it's frustrating that we still don't have a prognosis although I was prepared for that, the good news is he hasn't an arrythmia yet which would put him at higher risk of sudden death. Overall I feel ok about it. I watched Baby Hospital the other day which I'd recorded and there was this incredible mum who was only 18. She was so strong and she said something which has become my mantra if I feel down - while he's still here there's still hope.
Next is his hearing test on Wednesday - keep your fingers crossed for us girls xx
Next is his hearing test on Wednesday - keep your fingers crossed for us girls xx
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Your attitude is amazing. Your a very strong lady x