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Monday, 23 January 2012


I have some news. I am pregnant. 15 weeks or 16 weeks. Already losing count which is probably a bad sign!

We have been pretty shocked, but now am getting excited about expanding our little family. There are obviously fears and concerns that what happened to Tiddler will happen again, and no-one can tell me it won't.

You see, they don't know why Tiddler stopped breathing or has had the feeding, muscular etc etc issues that she has had. They don't know for sure it is genetic, although they think it is, and neither do they know what pattern any inheritance of this gene may take.

We have no reason to believe this baby will be worse affected and no-one has ever told us not to have another child. We are awaiting the results of some DNA testing on Tiddler but apart from that will muddle along as normal.

Everyone has been pleased to hear our news. A couple of people thought we were lying- yes that's right it's all an hilarious ruse??!!  I had one very odd encounter where it became obvious that the woman thought we were having another baby to get a healthy one this time... " I'm not being horrible but...." Errrr yes, quite. I genuinely believe that she wasn't being horrible but it says a lot to me about her ignorance. Not exactly embracing difference is it? Sadly I am sure she is not the only one that thinks like this...

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...