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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


  • Fingers and toes crossed x sounds like your keeping your head up and sounds like Owen is doing great image hope you get some good news will keep eyes peeled for the next update!! Hope they make a diagnosis asap x
  • Wow you are staying so strong through all of this hon! Its good that his echo hasn't got worse (or if it has only a tiny bit), and that everything else looks good. The waiting game is often the worst bit though; at least when you have a diagnosis you know what you're dealing with. I hope they can give you one soon hon xxxx
  • Hey hun, have been keeping my eye out for an update on Owen. It must be so difficult to still not know what your dealing with but you seem to be coping amazingly well. Owen sounds as though he's doing great - rolling already is fab and he's such a cutie too. I love the photo you posted! Will definitely keep all my fingers and toes crossed for your next appt. Take care.
  • Been looking out for an update on Owen too. Really hope you get a diagnosis soon. Great that things are ok at the moment and that Owen is doing well in spite of these problems. You are doing great too! Will keep all crossed for you all xxxx
  • Ah Moomin it's such a stressful time but I like that saying, it is true and they can do so much now days. I will of course be keeping my fingers crossed for you both and saying some more prayers for you and Owen including on his hearing - have you noticed any change in him on that front? Is he starting to pay attention to any noises? I don't go back with Holland for another 3+ weeks, I still think she can hear loud noises but am not sure.....
  • Thinking of you both.

    Your attitude is amazing. Your a very strong lady x
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