On the first day of Christmas we ate Christmas dinner Ethan included. I blend my little man’s food so he can join in the festivities and my Christmas wish is for more than a few hours sleep a night!
On the second day of Christmas I tidied up! I do not get a lot of time to get things done with Ethan around you washing up pretty much is always backed up. Once Ethan goes to bed I can’t make a noise so I have to move around like a ninja as my flat is so small and Ethan has super sensitive hearing so if jobs aren’t done before he goes to bed nothing gets done! So Ethan went to his dad’s today for a few days so I caught up on some jobs so I could relax for the rest of the day (a rarity). #notanurse_but I am constantly caring for Ethan.
On the third day of Christmas I renewed Ethan’s blue badge. Ethan is unable to walk or do anything unaided so getting him out of the car is really difficult if you can’t open the door wide enough. We struggled when he was younger to get a blue badge and we kept getting refused. Eventually we got one but only because of a loop hole in their system! Now a few years later he is entitled to the mobility element on his DLA so this application should be successful! #notanurse_but I am my sons PA.
On the fourth day of Christmas I am getting a much needed earlyish night before Ethan comes back home tomorrow for a few Days. I am mostly constantly on the go so when I do get time to sleep and relax my body isn’t great at coping with it. I get complete exhaustion and it takes a while for my body to recover. It’s hard to switch off when I don’t have ethan as I am his main carer so my mind is on constant overdrive. Looking forward to getting back to the madness tomorrow!! #notanurse_but work incredibly long hours
On the fifth day of Christmas. #notanurse_but I keep my son alive with his medicine.
On the 6th day of Christmas…While a lot of our Christmas is different to everyone else’s it’s all similar in lots of ways. Ethan is still a five year old child who loves things a five year old child loves like toy story. Ethan absolutely loves toy story his favourite film. His auntie Esther bought him a woody costume for Christmas and here he is today enjoying wearing it (all be it a bit sleepy!) just like he should be at the age of five! #notanurse_but helping my son live a normal life.
On the 7th day of Christmas….. I’m #notanurse_but as this year comes to a close its always nice to look back on the year you’ve had. As always one of highs and lows, excitement and sadness. Read more on my blog here: http://ethanmylittlehero.blogspot.co.uk/2015/12/woodys-roundup.html
On the 8th day of Christmas I updated my new diary with some of the appointments we have for Ethan. By the end of the year my diary is very full. We have lots of appointments for Ethan so I have to stay on top of all of the appointments and change my work shifts if needed. Appointments start up again next week starting with the dentist! I have schedules to fill in this week to keep me on top of chores, appointments and food shopping with these I would t be anywhere I need to be!! #notanurse_but highly organised with lots of paperwork!
On the 10th day of Christmas… So I forgot yesterday’s so a big epic one today! Ethan has a lot equipment that he uses at home to sit in, stand in or use for physio. It is used everyday so we need it in top condition! Tonight just as Steve was about to leave to go away for work Ethan had a nappy explosion! (Not a rare occurrence in our house due to constipation then effective meds!!) Unfortunately the chair was covered so as a dedicated step dad, while I finished cleaning Ethan and the bed he cleaned Ethan’s chair ready for tomorrow! #notanurse_but maintaining high medical cleanliness!
On the 11th day of Christmas Ethan went back to school. He leaves very early in the morning to go on the bus at 7.50 and arrives home at around 4.20. He attends a special school which provides him with lots of therapy and fun throughout the day! Mornings are hectic as Ethan cannot dress or feed himself so it’s like getting a newborn ready in the morning so it takes longer to get him sorted. He loves school and was awake at 4.30 ready to start his day! Mornings have to be pretty regimented to ensure he doesn’t miss the bus and on an early start it’s hard to not be sleepy! #notanurse_but like a ward sister ensure schedules are met.
On the 12th and final day of Christmas I look back on our Christmas. Although Ethan needs more care than most 5 year olds and he had to be fed his Christmas dinner and needed a specialist chair to be able to sit up to the table, (which we took over in our non adapted car), we still had a lovely day. Ethan still loved being with his family and enjoyed all his presents that Father Christmas bought. He may have been fairly sleepy all day due to a seizure on Christmas Eve but he was happy in between and made my Christmas by sitting up all on his own! #notanurse_but I am incredibly proud of how well my little man handled everything and makes me proud every day of his life!