'Ordinary'

Cat Girl made an amazing recovery from the previous day, saying that she felt completely better! I now seem to have developed a sore throat and a bit of a cold but have Biker Gramps to thank for that! ;-)

Boy Wonder went off to his second adventure day after very little sleep but remained fairly well behaved and engaged. This was until the dreaded 3pm when the meds wore off and he reverted to Wild Child! They topped him up and sent him on the High wire course which he loves! A total adrenalin junky.

Cat Girl spent the day with Super Gran and Biker Gramps going to a toy museum which she loved.

After a busy day, Cat Girl and I picked Boy Wonder up and took him to his first Oliver rehearsal. Whilst waiting for him we went into a play centre and on coming out noticed that I had a flat tyre. We went to the garage across the road and pumped it up. It has stayed inflated so must be a very slow puncture that I have only just noticed!

Boy Wonder struggled to settle again in the evening which resulted in a very late night.

Today he went out with his 1:1 worker and they had a day of playing games - crazy golf, air hockey, bowling and pool. Boy Wonder appeared to have a great day. He seemed over stimulated / wide awake! After such little sleep I would expect him to be flagging by now.

His cousin came to play before tea time but as tea became ready Boy Wonder started to protest about eating so she had to leave. We don't like to make a fuss about his eating but when he puts the shutters down at the mere mention of food, it becomes concerning. He appears to be so skinny, more so than the average child of his age.

We are slowly approaching the end of the holidays and the tribunal date. This has become even more stressful because of the seizures and now we aren't sure if Boy Wonder can be supported safely at school until he has had more tests and seen his Consultant. Detailed observations are required and there is a concern over him causing himself an injury if he has a seizure that results in him dropping to the floor. He is also showing increased signs of agitation before a seizure and sleepiness afterwards. Therefore constant observation would be needed throughout the day.

Emails, appointments, reports and telephone consultations have again taken up the bulk of the 'holiday' which takes its toll on family time and even simple small talk opportunities have been sparse. Instead conversation is about worries, apprehension and simply exploring the possible outcomes and preparing for a longer battle than we initially thought.

However, it is what it is and we will give it our all to make sure Boy Wonder gets what he needs. The end result being a bit of normality and chill time to do ordinary stuff. Suddenly 'ordinary' seems very appealing!