Still at home and doing OK

Since coming home from her last stay in hospital around a month ago Abigail hasn’t been quite so settled as she was before and is still having periods of what looks to be fitting.

We had a useful meeting with her consultant neurologist at the beginning of July who studied some video we took of Abby’s fits. She felt that they may not actually be epileptic in origin but instead may still be caused by some level of reflux, or at least an overproduction of acid in the stomach. She suggested another EEG to be done and another pH study. The EEG monitors brain activity during a ‘fit’ so that the location and nature of any seizures can be identified and the pH study will determine whether Abby is still suffering from reflux, where stomach acid overflows into the oesophagus and causes heartburn. As Abby is currently quite unsettled Guy’s Hospital arranged for an urgent EEG to be carried out yesterday and she will have a pH study done next Monday. Hopefully by the end of next week we may have a clearer picture of exactly what is happening.

As far as Abigail’s development is concerned she still hasn’t made any significant progress although she is getting a lot of input from us and various health professionals. She has had some good physio sessions recently, has been less resistant to being handled and has shown more effort to explore her surroundings. Abby has been loaned a BeActive box by the vision impairment service. This is like a posh baby gym; a three-sided box with a perspex lid from which you hang interesting objects. Once inside the box all outside background noise is shut out and any noise Abby makes is amplified. She seems very content ‘playing’ in there and has consistently reached for some objects.

We are hoping that Abby will soon be placed at an early intervention nursery where all of these services will be combined and they’ll deliver a complete programme of stimulation for her. She will probably go for two days a week. The waiting list is long but Abby was referred at just one month old so hopefully she won’t have to wait too long. We’re really enjoying having her at home and although it’s hard work at times we feel we’re coping very well with her care and trying to have a normal family life. Rebekah and Joshua adore her and always have lots of cuddles for her. In fact when we commented to the physiotherapist that Abby wasn’t as jumpy as she had been, she extolled the virtues of “Josh therapy”!