Poor Leeds suffered the indignity of having 30-odd swan parents descend on it a few weeks ago. That's not that we are odd. You know what I mean. Cocktails, dancing, plasters, PJs, a dodgy nights sleep followed by the worst breakfast ever sum it up really. Lovely to see so many fabulous people :) all in the same boat so to speak. We do this every 6 months or so- meet up and have some fun. A break from our "undiagnosed" lives.
Then back to our "normal"
The mixed messages I mentioned last post have continued and tbh my head is battered by it all. "Yes Nate is having gelastic seizures, yes you've told me they can't damage him, but no I don't think its acceptable for him to have to just live with them when they take such a chunk out of his life" All very ARGHH really. Have to take him in when it happens next for another EEG.
This weekend we have a sleep study sans ventilator. I think it's brilliant that they want to see how he is doing, and what his sats and co2 are like without it, but I can see it all going horribly wrong. A night of BEEEEEEEEEEEPs probably but you never know it might be extremely positive ( I'd settle for slightly positive to be fair).
We have a run of appointments coming up - genetics, ENT, feeding clinic, and another MRI. The MRI is primarily to look at nates myelination, but also to see if there is an incredibly rare brain tumour in there. There will also be a skin biopsy for a mosaic genetic syndrome done at the same time. Oh and endocrinology! I nearly forgot about that one!
With all of these appointments approaching I'm bound to need a moan so I will be undoubtably back blogging in my regular pattern! Yeah consider that your warning!
On a positive note Nate has settled well at school and I actually feel happy leaving him there. He becomes animated and noisy when we get there, and greets staff with a huge grin. Nate had a fabulous day today but can be very tired much of the time. Add that to colds and now a urine infection and this can make it difficult for staff to get him to engage with activities ( always tricky which you have a reluctant often sleeping student) and each day can be totally different. When Nate is in the right mood he does well. Hopefully as time goes on he's in " the right mood" more often at school and less tired. I am happy so far though. He is getting all the therapies and attention he needs. The staff care about him and it's a nurturing environment.
After a good run of form I'll have a think about what progress he has made and update you.
Speaking of which we are thrilled to hear about the progress some of Nate's pals are making!
http://littlemammasaid.blogspot.co.uk/2013/10/celebrating-progress.html?m=1
http://babyavasmiraclejourney.blogspot.co.uk/2013/10/proudest-moments.html?m=1
It's up to Nate and his pesky genes now what he can achieve.
i love that last line "it's up to nate and his pesky genes now what he can achieve" how true, how true for all of our little genetic wonders! glad that nate is settling in to school and that you are more at peace at leaving him.
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