The last few months have been very hectic (and stressful!) preparing to move house. We had hoped to be moving this week but unfortunately the chain collapsed on the day of exchange two weeks ago. This has been extremely frustrating for us as Rebekah left her school at the end of the summer term and will start a new school in September close to where we’re hoping to move. We have sold our house again to a first time buyer and it looks like we’ve also managed to persuade the sellers of our new house to stick with us. It’s all a nightmare!
Abigail is mostly keeping well. She has had a couple of infections which have gone to her chest and required specific antibiotics but she’s managed to stay out of hospital. That’s fourteen months since Abby was last an in-patient! At the last hospital check-up, Dr Lord (Abigail’s paediatric consultant) said that Abby was the best she’d seen her. All of Abigail’s medications continue to keep her epilepsy and limb spasms to a very manageable level without overly affecting her alertness (such as it is) and sleep patterns.
Abby has been getting on well at her nursery. She’s been spending a lot of time in a standing frame and this seems to have really improved her head control, although she still has a very strong head turn to the left. It seems that in the stander she likes the freedom of nothing touching her head as she’s still quite sensitive about having the back of her head touched. She often has a bowl of dried lentils or pasta in front of her to feel and she seems to enjoy this sensation.
The visual impairment specialist has observed that Abigail sometimes appears to track
fibre-optic lights at a distance of 10-15cm and that she is able to relocate a single light source if the light is turned off then on again. Vision is something which can be worked on until the age of six or seven so it is important that this sense is stimulated.
We’ve been very fortunate to have been offered a place for Abby at the Phoenix Centre in Bromley – once we are finally resident in the borough! This means that when we move she will continue to get the same type of input she gets now. In Greenwich the service is run by the health trust but in Bromley it is run by education. Abby will be the youngest child they have ever taken as children are usually at least two-and-a-half before they start there. But because Abby was receiving similar services in that format in Greenwich, Bromley have agreed to match it and she has jumped 22 places on the waiting list!
We received the
wheelchair for Abby a couple of months ago and it has made an enormous difference to her posture. She looks much more comfortable and seems to use her hands more. This seat should suit her up to the age of six and we were very grateful to the charity who funded its £3500 cost!
We saw the dietician this week and Abby has been put on a diet! Unfortunately one of the drawbacks of her inactivity and the fact that she is tube fed is that she has piled on weight. She has chubby wrists that a six month old would be proud of! Hopefully we’ve caught the problem early so that she doesn’t become too big as this will obviously make lifting difficult and also won’t help her to fight any chest infections she may get in the winter.
Talking of getting bigger, it seems odd to think that
Abigail will be two on September 16th. On the one hand the time has flown by, as it always does with children. On the other hand, those very dark days of scans, intensive care, continued hospitalization and not knowing whether Abby would live or die from day to day do seem like a very long time ago indeed. Much of that uncertainty remains and always will. But we are grateful that Abby has been home for so long now: that she really is one of the family and that we’ve had the privilege of nurturing and caring for her. Through the intense heartache of the last two years, Abigail Erin has brought us much joy and happiness.
Here we all are visiting an imposing castle on our recent holiday in France. The weather was fantastic for the whole ten days and Abby stayed very well right up to the second to last day, when she developed a bad cough. We were also able to make full use of the very good disabled concessions and facilities at Disneyland Paris too. Abigail seemed to enjoy the gentler boat and train rides, whilst Becky and Josh (to our surprise) were eager to try out the faster roller-coaster rides. All in all, it was great to be away together as a family - we'd missed out on France last year as Abby's health was so unpredictable.
