We have so much medical equipment in our house, a hi-lo chair, medicines, syringes, sleep system, bath lift, feeding tubes, as well as many other bit and bobs. The older Freddie gets the more and more equipment we seem to get and it begins to take over the house a bit. Every room you walk in you see some kind of equipment. Just a little reminder that a small boy lives in the house with big needs.
As much as we dislike seeing the equipment and it constantly reminds us of the huge care needs Freddie has, we know without it we would massively struggle so we have come to accept that it’s just part of our lives. The only part that ever got me down was the state of his bedroom. It had become so clinical. A hospital bed, a hoist, a feeding pump, a standing frame, a sleep system. His bedroom wasn’t at all a child friendly room fit for a cheeky 4 year old boy. It was just a depressing reminder of Freddie’s disabilities.
So we decided we needed to do something to give him the room he deserved. We knew we needed the equipment, It was all essential to care for Freddie, but one thing I knew we could change was his bed.
From the moment his bed was delivered I hated it. We were incredibly grateful that the NHS had supplied Freddie with a suitable bed but it really wasn’t at all attractive. I wanted to cry once it had been delivered and it took up most of his bedroom.
So after a bit of research and saving some pennies, Freddie now has a bedroom that’s more fit for a little boy. It still has a hoist and other equipment in there but the new bed has transformed his room. I no longer walk in and feel sad, It’s now a happy, fun place.
It has 2 big doors that open up to allow us to hoist Freddie in and out of bed. It can be locked everynight to keep Freddie safe. And the best part is underneath the bed there is a den that we have turned into a sensory area for Freddie to enjoy looking at his colourful lights & enjoy relaxing.
A bedroom fit for an incredibly awesome little boy.
Freddie’s bed was built by a company called Andersons Themes and Dreams and can be found on facebook.
It’s been such a long time since I got time to properly update Freddie’s blog, life has been very busy lately. Particularly since the arrival of Freddie’s baby brother and Freddie’s dad being out of the country for a few months.
It’s been a fairly hectic week for us with 4 days full of appoinments. Freddie’s had an appointment with the paediatrician, been to see a specialist dentist, had an eeg scan as well as several other appointments and discussions about possible upcoming surgeries, feeding regimes and epilepsy care plans .
Today we had a meeting at Freddie’s school to review his EHC plan. An EHC plan is a legal document that describes a child or young person’s special educational, health and social care needs. It explains the extra help that will be given to meet those needs and how that help will support the child or young person to achieve what they want to in their life.
The EHC plan was first done in July 2014 where we set Freddie a list of short term goals and 3 bigger long term goals we would like him to achieve –
- For Freddie to become independently mobile
- For Freddie to develop some independence skills
- To develop a functional communication system in order for him to signal his choices, preferences and needs.
Today we met with Freddie’s teachers, his nurse and social worker to discuss these goals & make any changes to Freddie’s EHC plan. We kept the above long term goals as they were and will we all continue to work with Freddie to help him achieve these. Some new short term goals have been added to make small changes to his school life mainly focusing around his new epilepsy plan and keeping him hydrated.
It seems that Freddie has settled in well at his new school and is happy in his new environment. He seems to be making new friends with the children in his little class and has used his charm to make all the staff fond of him.
The main feeling from the meeting is that Freddie is doing amazingly well. So well in one particular area that even I was surprised and almost reduced to tears during the meeting. We got to watch a video clip of Freddie in action at school, it had various photos of him playing and one video at the end that makes my heart swell with pride. My boy moving his feet in his walker!!. I’ve watched it several times now and every time my eyes fill with tears at what an incredible little chap my Freddie is. Watch it for yourself!