We turn off Isla’s feeding pump and give her her morning meds at about 7:30am and then wake her as late as possible (8:15am) on non-bandage days! She gets up, we remove yucky, smelly bandages and we check her over for blisters etc (this generally takes about 15-20 minutes). The bandages are replaced / stuck down and we get her dressed for school, brush teeth and hair and pile into the car for a 9.15 start. On bandage days she is medicated at 6.30am, gets up at 7 and it takes 2 hours to change all her bandages and give her a bath before going to school.
Isla’s bedtime should be 8pm but despite being tired during the day, she struggles to get to sleep before 10pm or later. She gets undressed, does teeth and listens to an audio book or sometimes is allowed to watch something on her iPad. She’s always hungry and needs snacks. She gets her meds and we turn on her pump at about 9.30 / 10pm.
Isla gets throat stretches at GOSH every 2-3 months, which is always a 48 hour trip- if we’re lucky! She has EB reviews at GOSH every 6 months, and local hospital visits generally involve paediatric consultant, dentist, dietician and OT every 6 months and eye check ups every 3-6 months.
Isla’s food intake is extremely poor and she won’t eat at all at school if she needs a throat stretch (she is given a bolus feed at lunchtime). This makes her really tired and she tries to play catch up after school but it’s not enough. Isla is good at eating most things – she loves cheese, noodles, mash potato, lasagne, pasta etc, as well as chocolate, crisps and cake! At morning snack time at school the children have a healthy snack; Isla needs more calories but due to peer pressure won’t have a chocolate biscuit. Generally she eats what we eat with ‘naughty’ things for pudding!
Her hands are not great, despite two operations on her right hand. The fingers just curl over and are gradually fusing again. This affects her ability to write quickly at school so her work is below the expected standard at her age. Missing a lot of school due to illness and appointments doesn’t help either!
Tiredness is Isla’s biggest problem – she copes with the essentials but by the weekend/ holidays she’s shattered and doesn’t want to do anything.
Pain and itch are also a big worry – we just don’t seem to have the right balance despite expert opinions!
If Isla doesn’t go to school it’s mainly due to sore eyes, in which case she just stays in her bed and snoozes, listening to audiobooks. This is sporadic – sometimes once a week, sometimes every 2 months for 1-3 days. Sometimes she just can’t cope with the pain and needs 2 days off school to sleep it off. This happens once in a blue moon!
Lots of people stare at Isla when we’re out and about in new places or at the supermarket.
Some ask questions, others whisper in the background! I often find myself explaining EB to new people that we meet. Isla and her sister Emily just tell people that she has sore skin that blisters and it’s called EB. Occasionally we do interviews for local press so that helps to spread the message! Every year I speak to Isla’s whole school at assembly so the new kids know what EB is.
Isla hates group activities outside of school and prefers one to one tuition. The friends in her class are great with Isla and so are some close friends out of school, but many other kids choose not to make any effort to engage or include her in their activities. Kids can be very cruel sometimes! The gap between her and her peers in terms of independence has widened and Isla struggles at times to keep up and doesn’t always feel safe.
Isla loves going horse riding, to the hydrotherapy pool, learning music and watching TV! She also loves drama but has just given up her class after 4 years as it’s too much of a struggle for her on a Monday evening. She also likes cycling – either her balance bike, the adapted tricycle, or on the tag along behind one of us!