Abby better and home once again

It’s been a long time since we last updated you on the progress of our daughter Abigail – some three and a half weeks, in fact. You’ll be pleased to know that despite the lack of updates, no news has been good news. Abby was discharged from Guy’s on Saturday 8th May and has been at home with us since then. We’ve been making efforts to get out and about as much as possible in the last few weeks and Abby has enjoyed days out at the park, by a river, walking in the woods and with Becky and Josh in our garden. It’s been lovely to have her at home as part of our family. Rebekah and Joshua are incredibly fond of Abby and are always giving cuddles and ‘help’ with visual and aural stimulation. Becky is particularly proud of showing off her little sister to anyone who hasn’t met her, as well as to people who already have!

Abby has continued to put weight on well. The feeding and drug regime at home are relatively straightforward and we’re really only getting up to her once or twice a night. It’s a bit different right at the moment as everyone except Abigail seems to be struck with a particularly nasty cold and throat infection. There hasn't been any overt or serious fitting since she’s been home, although there has been some distonic stiffening in her limbs from time to time and the occasional jerky reaction. These seem to be well within our day to day expectation of how she behaves. We’ve had numerous home visits from physiotherapists, community care teams, visual impairment and speech and language therapists, all playing their part in providing assistance, support and practical instruction in Abigail’s care.

We did have a bit of a scare on Friday 14th May when we took Abby to A&E with another suspected aspiration and chest infection. Fortunately the x-ray came back clear and it’s simply proved to be a bit of a chesty cough. Of course, we constantly live with the very real possibility of another aspiration and infection of her lungs, especially with Abby’s continued excess secretion problem. At the moment, we’re regularly having to suction Abby’s mouth, nose and throat so that she doesn’t inhale any mucus.

All in all things are going very well. It seems a long time since Abby was in hospital and we hope it stays that way!