Monthly Archives: January 2020

Life and all that jazz.

Robyn prefers to be called Chloe and after 18 months of her being consistent
in this I have decided to try my hardest to call her her preferred name. She
hasn’t attended school for a long time now due to illness and we have been
offered a place in a Pupil Referral Unit for children with mental health needs
and medical needs. It would be great to get her back in full time education for
her social needs as well as her educational needs. It’s is over 4 miles away so
she would need local authority provided transport and that makes me nervous. I
don’t relish the idea of having 3 children in 3 different schools that’s for
sure.

Chloe had her dental surgery in December, she was brave considering she
ended up with a mouth full of stiches after they cut into her gums to remove
impacted teeth. She struggled with eating for a few days, but she muddled
through and was healed enough to enjoy her Christmas dinner. She has an
Endoscopy tomorrow to look for reasons for the huge increase in her reflux
symptoms she has had since birth, she vomits daily sometimes numerous times a
day and has burning pain in her chest all the time. They will look for any
internal issues and take biopsies from her stomach to see if they can find
anything. She has been attending Cognitive Behavioural Therapy for over a month
now and the therapist suspects she has Agoraphobia which causes her anxiety. This
is why she has struggled so much in a high school with over 900 students. We
hope with the CBT she can earn to manage her anxiety and get back into
mainstream school in the future.

Lewis turned 9 yesterday and the older he gets the more I see the person he
is becoming; he is funny, kind and cheerful which is amazing considering the
medical and educational problems he has encountered in his life. He is going on
his first school residential trip next month and I am nervous about it, but he
could not be more excited. Its only for 4 days but I will miss him and his
cheeky face. He has overcome so much, from the premature baby who wasn’t expected
to survive the first night, who was diagnosed with brain damage at a few days
old and couldn’t eat or drink without tubes fully until was 2 years old to a 9
year old who works hard at school and makes me laugh every day. He had a great day on his birthday dressed up as Woody from Toy Story and playing with his friends.

Elliot is a fairly typical teenager; he is at times grumpy and shuts himself
in is room on his PlayStation and at other times he watched films with us
eating sweets and can be an excellent big brother. He works hard at school and
his reports always show he is well behaved. I am constantly grateful he is healthy,
and I don’t have to worry about hospital appointments and operations for him.
He gets and needs a lot less time and attention from me which makes things easier,
but I do feel guilty as I think he probably needs more from me than I give him.
He has tolerated a lot with the things that go on with his siblings and my
health, he never complains when I am busy with everything and always tried to
be kind and helpful when Chloe has an operation or appointments and is taking
up a lot of my time. He also has had to cope with big changes to his life with
Chloe and mine and his dads divorce, he makes me proud.

It’s been a busy few months and it’s not looking any less busy in the future;
we have an appointment in London at the Gender Identity Service for Chloe at
the end of this month then she will be getting her first removable brace not
long after that. There are a few hospital appointments for me and the process
of getting Chloe into her new school and then hopefully we will get a few months
of peace.