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Wednesday, 18 January 2012

A Tiddler update 13.5 months old.

Hello Blog, it's been a very very long time.

Things have been tough, busy and stressful. At its most basic, the reason behind my lack of blogging is downright knackeredness!

Tiddler is doing really well physically, she is now very effectively commando crawling and last week finally learnt to sit up on her own from lying. She is managing to stand supported when wearing her bright pink Piedro boots. The Physio was really pleased and impressed with her progress so that's great and it's reassuring to finally see things moving in the right direction.

We have also seen the Geneticist recently, who is now testing Tiddler's DNA for a "few very common muscle problems"... I didn't ask what... I have googled (i know, I know) but not really much the wiser. We will find out the results in 3 weeks. They were originally focussing somewhat on Ehler's Danlos as we have that in our family but as I do not have EDS they have been head scratching a bit. A diagnosis would be good- good for us, good for family, good for Tiddler's dalliances with "the system". We have already encountered the negative "oh, well she doesn't have a diagnosis does she.... " to requests for more support. It may be though that the quest for a diagnosis is both fruitless and pointless. Tiddler is still Tiddler and a label doesn't change who she is. I have got my head round this now I think.

What my head is struggling with though is the isolation. We just don't fit in. Tiddler behaves differently. Mums look but rarely comment or ask about her. To those that do ask about how she's doing, well I struggle with what to say. Do they really want to hear my answer or are they looking for the polite, typically British "fine thanks".  Where do I start? What would I have said in their position? Probably nothing... I am no different to them then.

The main diffiiculties right now with Tiddler are her continued feeding issues, with associated arching and hitting her head when in her feeding chair, general head banging - which I am finding very upsetting- and her extreme under responsiveness to pain. To manage all three is proving draining and very very stressful. We are in the middle of a programme of Occupational Therapy so fingers crossed that this has a quick, positive impact.

In the meantime, I need to get out of the house every day. Tiddler's constant colds, Tonsilitis etc have made this hard and I have felt it! I also need to get myself out on my own. I rarely do this, largely due to feeling so tired, but really must try...

8 comments:

  1. Our children have different conditions but I totally understand how you feel..and reading what you said at the end about getting out of the house every day especially. I only seem to get out and about if it's an appointment or we really need something from the shop.
    I also understand about when people ask how your child is. What do you say? Am I supposed to go in the full spiel of his condition and problems, do I just say 'yeah fine' - but then it gets awkward when the say gosh 14mths now, must be into everything. Err, well no!

    Anyway, you must keep posting so we know how you guys are getting along. x

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    1. Zoe, thanks for your really kind comment... i look forward to reading more of your posts too xx

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  2. So glad to see your post pop up! I am really glad to hear of Tiddler's progress - that's great. I can totally sympathise with how knackered you must be. I felt exhausted when my boys were small and I had none of the problems you have to face daily.Your post has made me really think about how I might approach other mums and their children in the future. I would hate to think I put anyone in the situation you describe.Take care of yourself and keep writing! Sarah x

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    1. Hey Sarah- thanks so much for your comment. I am sure if I met you in the street you would be great to talk to and I don't think the situation I described above would apply to you at all!

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  3. It can be so difficult at this time of year with all the bugs and sniffles they pick up never mind other complications on top of that. getting up and out is definitely a wise course of action.

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    1. thanks for your comment, I know I can't wait for Spring!!

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  4. Hi, I popped over to see you from a recommendation on BritMums. I can only imagine how draining it must be to care for your daughter whilst at the same time continually experiencing barriers put up by the system because she doesn't yet have a diagnosis. I hope you are able to get one, if only because it may help when trying to navigate said system.

    With everything going on in your life, I hope you're able to find some time for yourself. It's important that you also look after you x

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  5. Hi thanks for stopping by! I now understand what you mean about the BritMums recommendation... thanks for reading, and your comment is really appreciated

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