It had been just over three months since the builders started Harriet`s new room and the building was now at a stage where it was virtually finished, we therefore asked the builder if it was possible to get the room passed.
Building control came out to Harriet`s new room and passed the building, which now meant that Harriet was able to move in her new room.
The builder explained to us that although the doors to Harriet`s bathroom and tracking hoists were not in place, that this would not affect Harriet or the carer living in the bedroom and using the disabled bathroom facilities.
Harriet`s room was designed to not only be functional for her needs but also take into account a sterile environment and we therefore decided that it was best to have a tiled floor in the bedroom, which would follow through from the main house .
As we both now looked at the finished bedroom, bathroom and lobby area of the building it was simply stunning to see that this was now part of the main house and Harriet would now be able to interact with the family on one level.
We now needed to get Harriet`s very large electric cot bed downstairs and into her new room, but this was something that had to be done by the company that initially installed it. The company was informed and we were given a date for the bed to moved into the room.
A week later Harriet`s bed was in her new room, we then moved all Harriet`s medical equipment into the room, these were installed either side of her bed.
We took Harriet into her room for the first time, her eyes opened wide with excitement and she started to move her head from side to side as she looked round the room. Harriet was really staring at the new rotating sensory mirror ball on the ceiling and animal pictures on the walls and looked very happy.
Harriet had her first feed in the new cot and seemed to settle into the room very quickly, she was very calm and really enjoyed all the sensory equipment.
Although the bath lift and hoisting systems were not in place as they were on order, it would be allot easier to bath Harriet in her new bathroom, given the size and layout of the room, that had designed especially for Harriet`s needs . The new bath from B & Q , had been installed with the well being range from whirlpool, which allowed for not only sensory lighting to stimulate Harriet while she was in the bath, but also Jet streams of water, that would help with her muscle tone and overall stiffness.
As Harriet is wheel chair bound and is unable to move on her own, the front drive has also been adapted for wheel chair use and we are now waiting for the lift to arrive and be installed.
Harriet`s room was fitted with state of the art air condition, which will help regulate the temperature of the room and in turn help keep Harriet`s core body temperature at a safe level, as she struggles to control her own body temperature . We would like to say a Big Thank you to Martin, Gavin and Paul at - Advance Climate Solutions Ltd, for Donating and fitting the Air condition system.
We would like to say Big Thank you to the builders Gregg, Trevor and all the trades people, that worked on Harriet`s Disabled extension and main house adaption’s .
Although we were able to obtain a large Disabled Facilities Grant for the main part of Harriet`s room, this would not have covered the whole build and therefore without the donations from companies and members of the public Harriet`s build would have been a long way from completion. We would therefore like to say a Big thank you to all of you that have taken part in fund raising events or made a donation to Harriet`s Trust .
The Disabled Facilities Grant team were great ! and without the input of the architects Anna and Dave, the occupational therapist Karen and the rest of the team, then we would not be where we are today .
We are now looking to extend Harriet`s world into the garden, the transition from her room onto the new decking will give Harriet a better quality of life and enable her to interact in a controlled external environment . The garden will also act as an extended sensory area with sensory lighting, sounds and toys that integrate into the garden.
As we now look to the future, we will continue to look for someone that will help us to find out what is wrong with Harriet and potentially save her life before it’s too late. It is therefore very important that we continue to raise funds for the Help Harriet Trust, which will pay for Private Physiotherapy, Vital Medical Services, Research, Transportation Costs and many other things that will Help to give Harriet a better quality of life.
Mum and Dad
