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Monday, 20 February 2012

The results

Today I had the Anomaly Scan. I was very nervous, although the tears only came as soon as I lay on the bed in the Sonographer's room. Tiddler had had me running around all day prior to this so I had no time to worry-probably a good thing.

All was fine. All is fine. Very relieved. Another very wriggly baby by the looks of it!

Sunday, 19 February 2012

Anomaly Scan and Fears

Tomorrow, I have my anomaly scan.

When pregnant with Tiddler, no problems were discovered. With her, it was a totally different pregnancy to this one. With Tiddler I had bleeds, a very large cyst and was measuring small the whole way along.

I have been thinking that this pregnancy is different and so the baby will not be born with any of the problems that beset Tiddler from birth. Is this naive? Premature? Stupid?

I am now wondering if I spoke too soon. People are commenting that my bump is small. This is making me panic. I am concerned that this baby will be born with health problems too.

With my anomaly or 20 week scan when pregnant with Tiddler, I honestly can't remember worrying that the sonographer would find any problems. In fact they didn't. Not a sausage. Well they never do find anything do they? Of course everything is fine...

This time around, our world is very different. Babies with health problems don't just happen to someone else, you don't just see them on Children in Need. This is real life, it affects real Mums and Dads and real children. Although Tiddler is a lot better now, she is not as my OH says "out of the woods" yet and I feel very much as though we have "touched" that life of a family with a very poorly child. I fear that this time we may not touch it but live it. We already have a life with- at the time of writing: 4 Consultants, Physiotherapy, Occupational Therapy, Speech and Language therapy and the support is fantastic but to do it again with the new baby as well as Tiddler? Someone somewhere would have to inject me with oodles of energy and optimism that I don't think could be naturally achieved. How on earth would we cope? I suppose it would be less scary if it happened a second time as we would understand more of what was going on and be able to tell the signs of potentially much more serious problems.

As no-one yet knows exactly what the genetic issue is with Tiddler, they cannot tell us it won't happen again, although they have explained that they don't expect our baby to be any more severely affected than Tiddler. So by this time tomorrow we will know whether there are any major problems with the baby. Or will we? As nothing was picked up with Tiddler, I suppose you never know but at least we will know all we possibly can at this stage. One thing - we will hopefully know if baby number 2 will be a boy or a girl!

Monday, 6 February 2012

Pain and OT

Tiddler had an OT appointment today. The therapist attended her playgroup that is run by the local family centre for children with additional needs.

She was really pleased as I explained how someone seems to have "flicked a switch" and so in recent days Tiddler has been responding to pain almost without fail. The OT observed it herself as Tiddler rolled off a mat and hit her head off the floor and burst into tears. A few weeks ago she wouldn't have flickered a response. Amazing.

I also reported how her head banging seems to have improved, I almost didn't want to say this out loud as I am worried now I have cursed it and she will return to headbanging with a vengeance! I explained that there seems to be a direct link between Tiddler not wearing her Piedro boots and her refraining from head banging. Weird I know. I don't get it myself, apart from perhaps that having boot-less feet is just not giving her the feedback that my sensory seeking daughter needs so she is giving up quickly.

So why, why all of a sudden are things clicking for Tiddler? The OT didn't know... she said it could be a combination of the OT therapy and exercises I have been doing as well as perhaps her development now being appropriately advanced (although still delayed by approx 6 mths).

There are still outstanding issues- she still arches a lot and bangs toys on her head. Feeding is a massive area of concern for me. More of this another time.

Other good news very recently has been the DNA results from the Geneticist. Tiddler does not have either of the (quite nasty sounding) muscular disorders that were tested for. Relief, obviously- but it still means we are without a diagnosis and still wondering what exactly the future will hold for Tiddler. As I sit here typing now though, the signs are all very positive and I make no apology for enjoying this moment.