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Staff at the Lighthouse nursery told us that Harriet was not herself today and seemed to struggle, as we took Harriet home it seemed that she may have come down with some sort of virus or cold.

Harriet was put to bed and we kept making sure that her heart rate and oxygen levels were at a reasonable level for Harriet, but as the day progressed, Harriet seemed to be getting worse, her oxygen levels were dropping and her heart rate was raised significantly.

We decided that we needed some help and contacted the kite team; they spoke with the relevant consultants and asked us to bring Harriet in straight away.

Harriet`s breathing was now starting to deteriorate and knew we had to get her to hospital soon, but decided to take her in the van, rather than an ambulance as Harriet was more comfortable in the upright position as her lungs could drain off the increased secretions.

As we arrived at the hospital we parked the van quickly and then rushed Harriet into the children`s Accident and Emergency Department. We told them the kite team had spoken to the relevant consultants and that Harriet was now in respiratory distress and needed urgent medical attention.

With Christmas and the colder month`s nearly upon us, we had a few more appointments with Harriet at the Queen`s Medical Hospital in Nottingham.

Harriet had been booked in with the consultant neurologist Dr. Whitehouse for some months, but we also needed to take Harriet to see the consultant spinal surgeon Dr.Grevitt and a hip surgeon for an assessment on the same day.

As we arrived at the Queen`s Medical Hospital, we found that the car parks near to the spinal unit were all full and therefore had to park quite a distance from the unit. Once parked we made our way in the bitter cold across to the spinal unit with Harriet, we booked in and were then sent to the X-Ray department for an X-Ray of Harriet`s spine and hips.

With all the main building work now finished, we were now waiting for the outside steplift and overhead tracking hoist in Harriet`s bedroom to be installed .

We initially had a phone call from the steplift company, to say that they could fit the lift within a week, but there had been some problems on the bespoke build of the lift system and this had to be postponed for another couple of weeks.

When the lift people finally arrived, it felt like such a relief as we knew that we would no longer need to carry Harriet from the car into house, especially if she was sleeping. Harriet was also starting to get very heavy and it was a real strain carrying her safely.

As our other children started to return to school, we were now preparing for Harriet to take her first steps on the learning ladder .Months of planning and preparation from health care professionals was needed to make this possible, as Harriet is a very complex little girl who has alot of...

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 .