Hiccups

Just as I think the drive to Manchester is becoming routine, for the next 7 weeks they are shutting one of the roads so I’ll have to find another route through Manchester. Hoorah!

Otherwise things are settling in. After last time when Claire, another ERT nurse, got the line in first time they didn’t bother getting one of ‘experts’ to do it!

But I did have another wobble. The local ENT guy (that I didn’t like!) had said he wouldn’t recommend grommets as it may not help Pudding’s speech anyway. Yesterday we saw another consultant in Manchester. He actually explained the issues with grommets (potential infections, etc) and that it is unclear what sort of effect they would have, and agreed that hearing aids were not going to be tolerated by Pudding. He was very like our local pediatrician in that he gave me the information and then a little space for me to think about my opinion. I said that given we don’t know what CNS involvement there will be, and therefore how long before any decline in his abilities. The emphasis is therefore on Pudding learning as much as he can right now so if there is any chance at all of improvement in speech and understanding then we should go for it. He agreed! Then he pulled the sleep study results towards him and said ‘Now, these weren’t awful…’ Hmmm.

Upshot is that his oxygen levels are dipping at night. Mr Bateman has proposed taking out the tonsils and adenoids while he’s under having the rest of the stuff done. Fine. I think what upset me is that it’s just another issue that we didn’t really realise about. When he was diagnosed, although I was concerned about the future, I thought there wasn’t much in the way of physical problems yet. Now I can just picture Pudding on the operating table being pulled about and prodded. It makes me feel helpless yet again.

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