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.
After the X-ray, we made our way over to the neurological department, Harriet`s weight and height was measured and added to her notes, before we went into the waiting area to see the neurologist.
After about forty minutes waiting, we were asked to bring Harriet through to see Dr.Whitehouse, he was pleased to see Harriet and introduced a neurologist from china, who also wanted to observe Harriet and take notes.
We explained to Dr.Whitehouse, that Harriet had been doing fine to a point, but Harriet was starting to have episodes whereby she would start shaking and had become very stiff.
Dr. Whitehouse examined Harriet and then explained that he would need to increase Harriet`s medicine called Tazanadine, which relaxed the muscles and would hopefully decrease the pain Harriet was also experiencing. The downside of this was that Harriet may sleep alot more and her head control may become floppy, which is something that we did not want. We were told to reduce the Tazanadine if this happened within the tolerances given by the neurologist.
Dr. Whitehouse seemed very pleased with Harriet`s progress and told us we had done well to keep Harriet away from hospital for such a long period of time. We told him that we were not taking anything for granted and knew that the winter months would be the most challenging for Harriet and ourselves.
We then spoke about what else was being done for Harriet and whether there had been any response from the neurological team in the American state Washington. Dr.Whitehouse confirmed that the blood from Harriet and ourselves had been sent to the states over a year ago for testing, but he had not received any conclusive data back from them and therefore would write a letter asking for an update.
Harriet was now starting to get tired and we made our way to see the spinal surgeon Dr.Grevitt, he had been waiting for us and therefore there was no waiting around, we went straight into the consultancy room.
Dr. Grevitt introduced us to the Hip surgeon a Dr.Hunter, he had previously seen Harriet about six months ago and showed some concern that Harriet`s hips were dislocated on the X-Rays. Dr.Hunter looked at Harriet`s hips for a second time and then put Harriet through some hip movements to see if she was in any pain, but he was not sure if Harriet was experiencing any pain as she could not move her mouth, cry or show emotion like a normal child .
Dr. Hunter asked us whether we thought Harriet was in any pain during the movements designed to test the hips, we replied that Harriet did not seem to be in any pain.
We were then shown X-rays of Harriet`s hips, it showed that both Harriet`s hip were slightly dislocated and that on one side a new hip socket was actually forming to try and compensate for the dislocation.
It was very sad to here that Harriet may be in pain due to her hips being dislocated and that we may not be aware of it, but her hips did not seem to have become any worse since the last x-ray. The surgeon explained to us that it was good that Harriet did not seem to be displaying symptoms of pain during his initial examination, but asked us to keep an eye on this and let him know if Harriet starts to experience any pain during movement, including having her nappy changed .
Dr.Grevitt then came across and gave Harriet an examination of her spine, he seemed very pleased with the healing progress and the way the skin had grown over the top of the rod located at the top of Harriet`s spine .
Dr.Grevitt then showed us the X-rays that were taken earlier today of Harriet`s spine, the metal rods were in place and were keeping her spine in alignment and in essence doing their job. He then went onto explain that it would be the growth of Harriet that would determine how her spine would develop over time, but was very happy with her current progress.
In order to give us a true reflection on how bad Harriet`s spine was over 14 months ago, Dr.Grevitt showed us the x-rays before the major operation and told us that Harriet had make big progress since the operation.
Looking at the X-rays it is amazing that Harriet coped for such a long period of time and it is now evident that if she had not had the operation, then she would have died and for that we extremely grateful for the intervention of Dr.Grevitt and his spinal team.
We were told that Harriet would need a further review of her spine and hips within the next twelve months, but at present there was no further action needed.
As we left the hospital, it felt such a relief to know that Harriet did not have to go in for an operation, MRI scan or any further investigation, but knew it would the winter months would be a dangerous and testing time for Harriet .
Mum and Dad