Friday, 6 May 2011

counting

For some time now, we have been wondering whether Nenna is 'okay'. She has been slow to walk and slow to talk. Her balance is not good and she doesn't put her hands out to save herself when she falls. We are in the Paediatric referral system and she was thoroughly checked by a Paediatrician in January after our Health Visitor expressed concerns.

The assessment concluded that her physical development was on the bottom centile, but still just 'normal'. She was referred for Speech and Language therapy and a follow-up appointment was made for September, at which point if she is lagging any further behind, they will start doing blood tests for things like Muscular Dystrophy. There is no history of this is the family, so that's a long shot and therefore quite reassuring.

In addition, ENT examined her and tested her hearing again and concluded that she has glue ear, which goes to some way to explaining her speech difficulties and perhaps also her balance. She has a follow-up in June and if there is no change then apparently grommets are an option, to drain the inner ear of gloop.

So far so sort-of-okay.

However, after a couple of falls over Easter which caused a serious cut and a nose-bleed-and-black-eye , I took her to the GP on Tuesday. Our GP is a very down to earth Mid-European who doesn't beat around the bush or suffer emotional bullshit gladly. She is re-referring us back to Paediatrics for an earlier follow-up and for Occupation Therapy to help Nenna's walking and balance. She says that her opinion is that there is probably some (minor) brain damage somewhere that is affecting her motor skills and that OT and Speech Therapy will help map new pathways in the brain. The GP says that she doesn't think that any blood-tests etc will be necessary; it depends on how the next Paeds appointment goes I guess.

My baby has brain damage.

But.

It's MINOR brain damage. And is probably fine.

Some of you reading this will have already read my brief update on facebook on Tuesday when I got back from the GP. Since then, B and I have gone through a whole range of feeling. Panic. Fear. Disbelief and belief. Pain and numbness. Sadness. Reaction, over-reaction, under-reaction.

My beautiful, happy, smiling daughter is still the person that she was last week. She will still be the person she was going to be. Over the last week or two, I have begun a conscious practice of gratitude every day. Literally counting my blessings. She is always on my list of things to be thankful for and she is, very much, one of my blessings.



11 comments:

  1. Nenna is a beautiful little girl and I am sure that as your GP says, any damage is minor and with the correct help she will be everything you have always hoped her to be and more.

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  2. Whatever she has to overcome, she has you to love her and help her to do it. Happy is the main thing, darling - and what a blessing it is, that you have two beautiful children when you never thought you could have any. I think you're fantastic, what you've come through and if she has any learning or physical problems, she's the luckiest little girl to have you as parents.

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  3. I'm sorry. its a sort of grieving and accepting the new situation.. without really knowing what it is.

    Nenna has always been Nenna - now you are finding out some more, please dont assume it will be bad. With you two as parents, she really does have an ace start

    hugs

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  4. You will all come through this together. You are already doing all mthe right things.

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  5. Early identification, and ensuring the right support and provision is put into place, is the key factor in ensuring future success, so things are looking good so far.

    There is lots of support, both from health and education... but it is not always offered to parents early enough (and sometimes, not offered at all, as each professional thinks that another has done the necessary referral paperwork, or that they should 'wait and see' before referring on - which is never a good idea!).

    When you see the paediatrician next, do ask that Nenna is notified to the education department as a child with possible special educational needs.

    An educational psychologist will then be allocated to assess her and advise on/oversee progress/provision, and ensure that everything that should be done, is. They will only be involved for as long as it is necessary, but, if support carries on being necessary into school, they will ensure that it is all put in place.

    When I worked in your area, EPs were more than happy to chat to parents with concerns, and advise on what should/could be happening. There was an excellent Portage home visiting pre-school support service too. Contact details for the EP team here: http://www.six.somerset.gov.uk/eis/v.asp?level2id=6440&rootid=6440&depth=1 (info on Early Years is about half way down the page).

    Do drop me an email if you need any help in navigating or understanding the system, or getting the support Nenna needs from it.

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  6. This link (on the pre-school team is useful too:

    http://www.six.somerset.gov.uk/eis/view_folder.asp?folderid=6445&depth=3&rootid=6445&level2id=&level1=6445&level2=6452&level3=6477

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  7. Ahhhh... grrrr... my first long comment disappeared...

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  8. Well done. I know it's difficult but well done!

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  9. I know to a certain degree what you are going through, as my youngest son, my precious perfect boy who had the charming (if a little irritating) habit of forgetting things and getting easily side-tracked was pronounced to have a short term memory loss and had difficulty in retaining the immediacy of a situation, difficulty in remembering the simplest of tasks. I was devastated, here, my perfect, blonde, beautiful boy was 'damaged' he was 'imperfect' and I cried. It took a little while for me to realise that he was no different to what he was the day before his diagnosis, he was still the little imp, the little monkey, the cheeky son I had always had. HE was not different, it was MY perception of his 'damage' that was different.

    Now, with game based memory exercises, different style of reminder techniques - he is getting better, he will never have a full short term memory - but he is still my youngest son and still the precious monkey he has always been. Although the diagnosis is different to your dear Nenna, the outcome is the same, you still love them, for who they are, what they are and who they will become and your input and love is essential to them. She is very lucky to have you as her parents, it is hard, but it is worth it xx

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  10. Thank you all for your comments, I very much appreciate them and am taking them on board.

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  11. I have taken a while to comment because I wanted to say the right thing, by which I mean what I really mean. You know what the house of weevil has been through/is going through and so I will just say that the brain is a very amazing organ which can do what seems impossible. With love

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