Not parenting, but nursing care

Life at home caring for Abby has remained difficult these two weeks since our last update. There’s been no improvement in Abigail’s condition at all and we are feeling very low and inadequate in our ability to cope with the current situation or any that may face us in the future. Last week Rebekah finished nursery and will move up to primary school in January which leaves a five week gap for Nix at home with three children all day. This, coupled with Abby’s condition and the level of care required plus the fact the Becky and Josh seem to be quite a handful at the moment makes for an exhausting home life. Matt's work at ITN, though still incredibly satisfying, seems to pale when compared with the eighteen-hour days Nix is putting in to her ‘work’ at home. And it seems unrelenting.

Abby is continuing to vomit many of her feeds up and has lost weight again. She’s now back down to 10lb from 10lb 9oz three weeks ago. Although her medication is staggered so that it’s administered between milk feeds, it remains difficult to know how much of these drugs she is actually getting. She has recently been put on to three anti-sickness drugs (bringing her total drug count up to seven) but these seem to have little effect so far. Just yesterday, Nix spoke on the phone to Abby’s consultant who instructed us to double the dose of one of her anti-sickness medicines.

There is also the distinct possibility that Abby’s Phenytoin medication may be stopped altogether. This is the drug that is proving very difficult to get up to the right levels in her body and could well be the cause of much of the sickness. We don’t yet know if this will definitely happen, or whether it will be replaced by another anti-convulsant drug.

The results of Abigail’s recent VEP eye test at King’s are still to come through but her second EEG scan results have. They seem to indicate that many of the smaller abnormal movements and limb-stiffening that had been assumed to be minor seizures do not in fact appear to be so. This is good news in that Abby may well be fitting somewhat less than we’d previously though, but bad news in that it raises concerns about what the abnormal movements might now be. They could be very early signs of one form of cerebral palsy. What is worrying is that Abigail often gets distressed during these periods – she simply doesn’t like what’s happening to her, so it’s not as though she is unaware of her problems.

One of our prime concerns at the moment is that we are not really parenting Abigail at all – we are merely providing a necessary level of 24 hour nursing care, and this obviously has implications for the other two children. Having said that, they both seem to be coping OK with Abby at the moment. It’s just the day-to-day challenge of home life with two very energetic toddlers and one very dependent and very sick baby.