Charlotte had her fist riding experience this morning and will do so every Tuesday from now on. Her Special Needs School, The Henry Tyndale in Farnborough, have arranged a morning session for her class with the Aldershot branch of the RDA, Riding for the Disabled Association, (www.rda.org.uk).
Charlotte really enjoyed it and did not seem in the least bit intimated by the horse, it was more the other way round. We are hoping this will also help strengthen her core muscles and hep improve her walking.
Charlotte had her 11:30 Appointment at Great Ormond Street Hospital for the SDR assessment. We were with 4 Doctors for about 45 minutes and then they went to another room for 10 minutes to discuss it and make a decision, which is that they do not feel it is right for Charlotte for several reasons.
Firstly, they do not want to risk such an operation where a child, like charlotte, has had Brain damage. In her case the meningitis left lesions and cysts all over her brain. She also had Hydrocephalus,(water on the brain), which left her with swollen ventricles although fortunately it did not get so bad that a shunt was required.
Secondly she does not have the level of understanding required for the operation and extensive physio required, although she is 6 she has learning difficulties and developmental delay and is currently at the level of a 3 year old.
Thirdly, they think she has more than once factor contributing to the stiffness , some of which the SDR may not resolve, so they could not guarantee how much better she would get.
On a more positive note the Doctors were impressed with her walking abilities without the frame , she started showing off and staggering around the room and seemed optimistic about her continued progress without the SDR operation.
They are going took a lot of video footage and are going to produce a report with recommendations which will be sent to her GP so we will wait for that. The consensus was that if we can get her left foot flat as opposed to being on tiptoe then it might solve a lot of the issues.
Charlotte was also weighed at 2 Stone 8 and measured at 3 ft 5.
Her language and understanding has come on leaps and bounds this year and she has also been telling everyone she is going on a plane, we are taking her to Majorca on Sunday for 2 weeks and I will be uploading a new photo section when we get back
Happy 6th Birthday CharlotteCharlotte's Consultant wrote to Great Ormond Street Hospital last May about the possibility of her being assessed for the SDR Spinal operation.
How appropriate that we received a phone call from Great Ormond Street Hospital this morning,on her Birthday, with an appointment at 11:30 on the 1st August to be assessed for her suitability for the SDR operation, it should last 1 1/2 hours.
It will be the beginning of a long road with no doubt lots of twists and turns ahead but if she is considered a candidate and we also get the funding then this will transform her life. The NHS only does a handful of these operations in the UK every year and part funds it. They pay for the basic operations costs but it is followed by 2 years of extensive Physio and we need to fundraise for the rest. To have this operation done in the USA would cost around £60,000.
Charlotte had a 2.45pm appointment at Frimley Hospital today. Her Physio had written her consultant a letter recommending another course of Botox in her left leg, but in the Hamstring as well as the Calf muscle. However Dr Dempster believes there has been no permanent net gain from the injections each time the Botox has worn off and has decided not to go ahead.
Instead he is going to write a letter to a Dr at Great Ormond Street Hospital who now does a handful of SDR, (selective Dorsal Rhizotomy), spinal operations each year in the UK. Previously this operation was only possible in the USA at an approx cost of £60,000/70,000 which would have meant a long period of fundraising. We should get a letter in a few months confirming whether Charlotte is potentially eligble for consideration for this or not, and if so will have to take her to Great Ormond Street to be assessed.
The NHS covers the cost of the operation for a handful of children each year and if Charlotte is selected as a candidate then we would need to fundraise for the rest of the costs as the operation is followed by at least 2 years of extensive physiotherapy.
Charlotte's Annual Review at school
I saw Mel, her teacher, and the headmaster. They went through a slide show of pictures of Charlotte doing various activities. She said that her attention span is good and that she really wants to learn and is always enthusastic. Sometimes however her enthusiasm affects her behaviour and we need to tackle that in a firm but fair manner.
Her language is coming on and they are very pleased with her language development. Mel says she sometimes has problems with certain words and making herself understood and will seek a speech and language report but in saying this, her development is very good.
She looks likely to exceed targets set and is showing real intelligence that they would not normally expect to see in this class. Her "teasing" is an example of this where she will give a wrong answer on purpose. So, when asked what a colour of something is she will on purpose say the wrong colour. They said it can be very difficult when trying to assess her as she will tease on purpose.
It is all very positive and her teacher said "she is an amazing litle girl".
Her physical develpment is moving forward and she is becoming more confident on her feet especially with her walking frame. We purchased Annual membership tickets to both Birdworld in Farnham & Marwell zoo last March. She has been to Birdworld 3 or 4 times since and has managed several hours of walking round in the Frame albeit with frequent rest stops. She does get tired towards the end and needs carrying but we could not take her on trips like this last year as she could only manage very short distances in the frame before stopping.
She is ready for toilet training and believe now is the right time to start, SO HERE GOES!!
She is a very good eater and they are amazing she stays so thin !!!!
So in general she is doing very well and they are very happy with the very good progress made this year
Charlotte had a 9am appointment to see Dr Dempster at Frimley Park Hosp. She has gone back to crawling or walking on her knees since the Botox wore off around October last year. She last had an injection in her left leg July 2012 and,until it wore off, was standing unaided and often taking 10-15 unsteady steps at a time before falling down. Dr Dempster examined her and said he would see her again 16th May and decide by then whether another course of Botox in her legs may help or she should be considered for the SDR, (selective Dorsal Rhizotomy operation).
SDR involves severing some of the sensory nerve fibers that come from the muscles and enter the spinal cord. If too many, or the wrong nerves, are cut it can lead to floppy legs. At the time of the operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic (EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity.
These operations are carried out in the USA and the patient usually stays for 3 weeks before flying home followed by a year or more of intensive Physiotherapy. This normally costs at least £60,000 and would involve a major fundraising campaign on our part. However May 2011 Frenchay NHS Trust in Bristol performed the first SDR OP in the UK and now offer a limted number of operations on the NHS. Dr Dempster knows a consultant at Bristol and is going to discuss Charlotte with him to decide whether this is an option which might be open to Charlotte in the future, should she develop the necessary level of understanding and communication. She is now at the right age where SDR can be considered.