Four months at home and doing well

It was the end of June that Abigail was last an in-patient in hospital, so we’ve had a really good summer with her and a long period of relative stability. Abby’s day to day nursing care at home continues to be reasonably straightforward. Her feeding and medications have very much become routine and she generally sleeps well at night. Even if she does wake, she doesn’t make any fuss and we rarely get up to her.

We do think that Abby has progressed a little in her development. Because she is cortically blind, her hearing seems to be very acute and she certainly responds and reacts to voices, sound and music. It’s difficult to know if she recognises specific voices but we do spend a lot of time playing and talking to her. Abigail has an audio cassette of music and simple exercises which is part of her bedtime routine, and she clearly recognises some of the music and appears to ‘enjoy’ some of the actions. Occasionally during exercises like helping her to clap hands to music she will gently open the fingers on her hands, or when we help rub her hands together she will seem to clasp her hands at the right points. We also believe that Abby is trying to smile sometimes. It’s very likely that neuro pathways for certain reactions are either damaged or crossed, so when she begins to turn up the corners of her mouth slightly but then goes on to yawn it seems probable that this is an attempt to smile, particularly as it often occurs as an appropriate response to what we’re dong with her. We’re also gradually adding to our own collection of flashing lights and tactile toys to aid Abby in her ‘sensory’ experience.

Nix recently took Abigail up to Guy’s for a regular out-patient appointment with Dr Hughes, the neurological consultant in charge of Abby’s epilepsy and cerebral care. She was very pleased with her progress in terms of the fitting. At the moment, although there is some occasional background twitching and 'clonus' movement, her ‘fitting’ seems to be limited to very short self-resolving episodes when she is coming in or out of sleep. Once again, Dr Hughes explained that it’s still difficult to say whether this fitting is actually epileptic in nature or just part of her limb disorder and the nature of her brain damage. Overall, she felt that increasing Abigail’s anti-convulsant drugs was not worth the increase in possible side effects and so all of Abby’s medications have remained unchanged. It was again explained to us that the winter months could prove difficult and risky for Abby, with the increased chance of infections and pneumonia.

With regards to our long-term concerns over Abby’s changing (and abnormal) head shape, we are continuing to push for a scan of her head despite the reluctance of some medical staff to explore this. Thankfully, both of Abby’s two consultants are sympathetic to our concerns. We’re expecting an appointment with a neurosurgeon to come through soon.

Another great development which we mentioned briefly in our last update is that we’ve been accepted onto the books of Demelza House children’s hospice in Kent. This is a completely charitable and self-funded centre which cares for children with life-limiting illnesses or conditions. We have been allotted a maximum of 21 days stay a year at Demelza House, which can take up to eight children at a time in its extensive facilities. We can use the centre as respite care for Abigail where we leave her there, or as a mini break where the whole family can stay. We were incredibly impressed with the centre which has amazing facilities and resources. It is not at all how you’d think of a hospice. All the rooms are beautifully decorated and homely, there is a large communal dining room and kitchen with meals laid on free for all visitors, there are extensive en-suite family rooms, an art room, a brilliant multi-sensory room, a soft-play area, a quiet chapel, extensive grounds and sheep and goats. The dedicated staff provide many days out and themed activity weeks and are able to cope with all the day to day nursing requirements of each child. We came away so impressed by the ethos and care on offer at Demelza House and have already submitted a selection of dates around Christmas time when we will stay there as a family for our first visit.

We’ve also had a number of meetings with the local Postural Management team, who work closely with Occupational Therapy to oversee Abby’s seating and pram requirements. We’ve just got a new special needs car seat but the team are looking into options for a pushchair that’s both compact and manageable and yet offers her the postural support she needs. The best option at the moment looks like costing around £2000 but the local authority wheelchair service do not have the funds for this so Occupational Therapy are investigating getting funding from local charities. Even this will be means-tested so we may well have to meet a proportion of these costs.

All in all, Abby is very well at the moment. We are really enjoying having her at home and those months with her almost permanently in hospital seem like a long time ago now. It won’t always be this good but we’re making the most of it while we can. And whilst we’ve all long since bonded incredibly close to Abigail, we’re now beginning to think we might be making inroads into the type of relationship we’ve always longed for with Abby – one where we know that the life we offer her and the input we give makes a difference and makes her happy. That’s all we ever really wanted for her.

With that in mind, we’ve been thinking once again about the possibility of moving house within the next year or so. Matt still needs to be able to commute into London, but we’ve been considering moving further out into Kent. We’d like the children to grow up away from the smog of the city if we can and we’ll need to move for Abigail soon anyway. We’ll probably need a four-bedroomed house with a ground floor room for Abby, and with prices continuing to rise beyond our means it won’t be easy to find somewhere. In the meantime we’re relatively happy where we are.

The photos are of Abigail (1) sleeping peacefully this evening (top), Rebekah (5) on an official ‘Bad Hair Day’ for her school, and Joshua (3) with his hair spiked on the same day.