In the days before Alana was due to start pre-school her dad Greg, Caroline (Alana’s care assitant) and I went to meet her new teachers to discuss EB. We also checked the toys, removed anything unsuitable, checked chairs, toilets, outdoor area, etc. I had her new school jumper made into a V-neck so it can be easily put on/off without causing blisters. I covered any seams that could potentially cause any friction. I also dyed t-shirts to match the uniform as she cannot wear the polo shirt and panicked there was lots of panicking.
Her first morning was like any other when you have a child with EB. Not knowing what to expect when you go to her bed to wake her up. You have to be prepared for all eventualities only this morning we are under time constraints as it’s her first day of pre-school.
Alana’s gloves are always changed before she goes to sleep, but a simple scratch of her lip during the night means that I will also have to change the bandages on her arms and hands when she wakes up. Normally both of us change bandages together but as Greg works the days Alana goes to school I had to do it alone.
Not an easy task on a toddler who has woken up with sore eyes and sore mouth. Getting Alana to take her four medicines this morning is a task in itself. Giving morphine to your baby so she can get through a couple hours of school is something I never thought I would ever have to do. Alana has all her meds before she goes to school, but in the event of an emergency i’m only a phone call away. Praying it’ll never happen but we made it on time and we were bursting with excitement. Weather depending we will walk to school. Luckily its only 3 minutes away. Alana will walk a bit but likes to get her big sister to carry her just because she can. On wet days we drive. We don’t have a special car seat but one that turns so we don’t have to drag Alana over the side and potentially blister her skin.
The school are great – they have lovely little padded chairs that are the perfect height, so Alana doesn’t have to drag herself up. Any sharp toys are removed on the days she is there. There are some things that Alana can’t always do with the others like painting for example. If she has an infection in her hand (which she often does) then we can’t take the risk of her gloves getting wet or dirty and having to sit in them for 3 hours until she comes home. We have spoken to her teachers and if she can paint then they will do it just before home time so I can change her gloves immediately, or we do it at home and her creations can still be hung up on the wall with the other budding artists.
When Alana gets home from school
Alana doesn’t sleep well at night, so she would be more tired than most when she comes home. She comes home, eats a little and sleeps. It is hard to vary Alana’s diet. First of all she is 3 and she only eats what she likes and second of all she cannot have any sharp edges. She loves my homemade soup so that’s handy to get loads of vegetables into her when she gets home.
The rest of the days are pretty normal (or at least our new normal) After her snooze its playtime and we collect Chloe from school – more food, more medicines, more playing. Cook dinner, eat dinner. Life just goes on. Before bedtime we change Alana’s gloves, she gets more medicines and we pray she will sleep.
She goes to school on Tuesday and Thursday which are her non-bandaging days so she can relax and have fun! We’re always busy, there is not a minute of the day we don’t have something to get done or be somewhere. No time to sit and relax.
Alana’s Care Assistant Caroline
It has been an adjustment sending Alana to school but knowing Caroline is minding her in school is a huge relief. (Caroline is Alana’s care assistant and she is part-funded by DEBRA Ireland) Without her there it simply wouldn’t be possible. Caroline is Alana’s shadow. It’s not so much Alana she has to watch as all the other kids – with 22 toddlers it can be crazy. If any child grabs a toy (as they do) from Alana her hands will blister. If she gets knocked over or bumps into something/someone she will blister. It is not safe for Alana to be in the outdoor area with all the kids so Caroline and 1 teacher will take a smaller group to play.
The good news is Alana loves school. No fear, no tears, just lots of fun with other kids her age and best of all, time to herself to do normal things.