Toddling Again! or Three Thursdays Third

Thursday 24 January

Another echo and some more blood tests and a chance to have a think about whether the new drug was working and, if so, whether to increase the dosage.

During the previous week, Little S has been doing rather well - a bit of optimism and progress amidst all of the doom and darkness - on a few occasions she was actually toddling around our house (or someone else's house) - not climbing stairs (or anything really), but then she never did, but certainly back to how she was around the beginning of December, before the worrying symptoms began that led to her being admitted to hospital.

And Dr D seemed to think she was making further progress as well - maybe this new drug is having an effect?!

He has told us to increase the dose a little bit - and hopefully over the next few weeks we'll be able to increase it again, as the more we can give her without side effects the better the effect should be on her heart function.

However, we need to temper all of this hope and happiness with a little bit of realism - we are still in a situation where Little S's heart is failing and no one knows why; it is currently stable but potentially could get worse again, either because of the unknown underlying condition or if she picks up a virus or a bug.

Having said that, we're still waiting for Birmingham and Stamford to get back to us and Dr D mentioned today that he and Dr B (remember him - he's the one from Israel) were both at the same conference this week (in Miami!) where they heard a talk by a Dr S from Japan describing an experimental technique that, although involving major surgery and perhaps not directly applicable to Little S's condition, could significantly increase the heart function of a child with heart failure. I'll know more when we get sent some of the details from Dr B.

So for now we have to get on with trying to be normal - living with Little S on a knife edge, managing a heart poised at DEFCON 2, sidestepping the 'how are you?' question from work mates that don't know, and seizing the day but only as long as we've got our oxygen with us.

Most importantly, enjoying the smiles and laughter of Little S and those around her.

Na'aseh Nes l'Shoshanim

Shabbat Shalom.