18 Nov 2008

SPZ neonatal follow up appointment

It is only in the last few weeks when we've had medical appointments that the doctors/therapists have mentioned how concerned they had been about our girls. Up to now they have avoided the issue and when pressed we got the "wait and see" response.

I hasten to add the general vibe has always been positive and at no time, not even after Enya's grade 3+ IVH (brain bleed), was there ever a mention of NOT doing everything medically possible for the girls. I say this as I've heard of cases when after the diagnosis of a major bleed, the parents have been advised to stop all treatment due to the extremely high risk of disability.

Anyway this appointment at the SPZ we again heard how lucky our girls are and how worried B had been (the doc, B, is an acquaintance from pre baby days when Z and I used to do ballroom dancing). She said Ciara shows no abnormal reflexes anymore and is on schedule for her adjusted age. Enya still shows some shoulder retraction in some of the positional reflex tests, so we have to continue Vojta probably until she is walking :0(. However on the plus side she also could see no abnormal tone in the legs so that is just a further confirmation the neurologist was full of s%$t! We are also finally at the top of the list for Fruhforderung (early intervention) which is as I understand it play therapy to encourage normal development. We were put on this list after our appointment in April. B says she actually sees no need for this but because I said I'd noticed a deficit in Enya's fine coordination we will be assessed for services when they bother to call to arrange it.

In physio Mrs W also said the asymmetry that was the big deal last time was not at all obvious so it must have just been a blip. I find it once again underlines how inaccurate an impression the doctors/therapists can get if they only have a single visit to assess a child in an unfamiliar environment. Six months ago the docs were very concerned about Ciara, where Z and I were much more relaxed (until they made me paranoid), because the child we saw at home was not the child they (and we) saw during the examinations/treatment.

1 comment:

iamza said...

Your girls are little miracles. Even the doctors think so. :-)

I'm sorry that Enya is having to continue with PT for a little while longer, but glad to hear that the abnormal leg tone was a spurious observation.

And Ciara -- yay!