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Its very quiet on here

Hi everyone, just thought I'd start a new post as its been very quiet on here lately.

Quick update from us, Paul's had a chest infection over Christmas and New year with a couple of choking episodes too all in the midst of horrible morning sickness for me (well all day and night sickness really haha) so we have both been worn out but luckily Hubby was off work for a couple of weeks so had loads of extra help which was a Godsend.

Got my new diary so just transferring dates for appointments and actually we've got about 6 weeks clear so far, apart from our usual physio and hydrotherapy so pleased with that, might give me some time to sort out our mobility forms which I have been putting off for ages as they just scare the life out of me.

Hope everyone is well, look forward to your updates


  • Hiya,

    Yes, I'd been thinking that there wasn't much going on at the mo!! We're all fine here, George continuing to do well - and luckily avoided all the nasty bugs around over Christmas! Hope the morning sickness starts to subside soon!

    S x
  • Hi Chriss, I havent been on for a while because when the site changed over I couldnt reply to any posts, sorry Paul has been ill and I totally sympathise with you and the morning/all day sickness, that is one bit of pregnancy I dont miss at all.

    Wow 6 weeks clear of appointments, what are you going to do with yourself?? we had an appointment Dec with the urologist about Isaacs hydrocele, he decided he wasnt a paediatric surgeon so has now referred Isaac back to the paediatric clinic (which is who referred him in the first place) to get their opinion, feel like I am going round in circles, he had an eye clinic appointment last week and finally after 2 years of patching and waiting and reviewing every 3 months he is ready for surgery, so at some point in the next 18 weeks he will be going in to have his eye sorted, they are going to try and do his ear at the same time, I am pleased that it will be done before he starts school but the though of him being put to sleep terrifies me.

    He has a visit from his OT on Wednesday for a review, actually quite looking forward to that appointment as his OT is absolutely fab and always really helpful, he has been referred to a geneticist and we have that appointment on 22 Feb and he is also due to see the paed at some point but we dont have that appointment yet and to be honest I am in no hurry for it so I'm not going to chase it up, I just want to have a clear calendar for a few weeks.

    How may weeks pregnant are you now, have you had any scans yet?

    Take care

    H xxx
  • lovely to hear from you both. Hayley1 glad you are able to reply again that would have done my head in.

    Well I jumped the gun a bit with the 6 weeks clear of appointments, I missed one I'd forgotten about which we went to yesterday, then got another one through from another rearranged appointment we couldn't make before Christmas and that was today haha so no rest for the wicked.

    Glad Issac is doing well, I hope the OT appointmes is a good one, we're at a bit of a go slow with ours at the monent, she's great but we're having trouble getting some adaptations organised might chase her up actually.

    We've just had a letter through today from the specialist hospital in Oxford and it looks like they want to see Paul there too, bit worried about that really as they want to re-do one of the tests that he has had a couple of times already, not sure whether they will put him to sleep for it and obviously I won't know any of the doctors or anything so unsure of what will happen that day or when it'll be as in 6 months I'll have a newborn too

    I'm 13 weeks and feeling much better just shattered, I'm having to be really careful as I've pulled my back and tummy a bit lately lugging our Paul around. I was in bed at half 6 last night I was so tired.

    We had eye tests yesterday, he wears glasses mostly for a stigmatism but he may need patching as his left eye is weaker but I'm hoping its not too bad they're happy to keep things as they are for now.

    ENT appointment was today, his grommetts have stayed in so I am really pleased with that.

    We've got his nursery review next month then neuro check up and sleep clinic review in March I've just got to get my act together and get his DLA renewal sorted and apply for mobility as he's been 3 for a few months now and I still haven't done it the forms just scare the hell out of me but its got to be done

    Anyway I better get my housework done hopefully catch up again soon
  • Good to hear form you Chriss, glad you are feeling better now, I remember the tiredness well, falling asleep at 6 or sometimes earlier, nothing can describe the tiredness you feel.

    Isaac still has patches and I must admit, when he first had to wear one I cried and cried because I thought everybody would be looking at him, purely me being vain about my little boy, I did get a grip though as lets face it, at the end of the day there are worse things that could be wrong than wearing a patch, and 2 months before he had to start wearing them, he was tested for muscular dystrophy.

    His OT is brilliant, she said she can see some improvement in his social skills, he still wouldnt speak to her but he did make eye contact, allbeit bvery fleeting, so that is a small step in the right direction, he has also started to come downstairs forwards instead of backwards, he still comes down on his bottom but he now uses the hand rail and comes forwards which is real progress, toileting is still hit and miss but I know he will get there, it will just be in his time not mine, I have learnt that over the last few years. His breezi chair finally arrived, the original one they sent had no footplate which was the whole point of having it, it is fab, he sits so nicely in it and he obviously feels secure in it because he sits in it to draw and watch tv as well as eat. His OT has said that as soon as he is offered his school place to get intouch with her so she can get full assessments and reports done so that they can start to put things in place at school and secure the funding for a TA and get him a statement. Guess its going to be a busy few months for me too.

    Take care xxxx
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