FRiday 31^st

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.

Thursday 9^th

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

Monday 4^th

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.

Thursday 15^th

It was parents evening and time to hear all about Charlotte's progress since joining her new class in September. The first sentence the teacher said was "Charlotte is very assertive, isn't she?". I guess that is a good word to describe Charlotte. She certainly knows what she wants and knows how to get it

They are very pleased with Charlotte's progress. They said she is such a determined little girl and really wants to learn. This is a good sign. She wants to take part in every activity and learns very quickly when shown a new thing to do and she wants to do things many times until she gets it right

She has settled very well into her new class and her new teacher said she was a pleasure to teach. Always enthusiastic and always wanting to help in every way she can. However, Charlotte has began to "tell tales" on her new classmates. When they are doing something wrong, or shouldn't be doing something then Charlotte let's the teachers know straight away!!

Charlotte works well with visual prompts and is now learning new words at a good rate. Not all words are clear, but hopefully this will come with time, practice and as she builds up her confidence with talking.

Charlotte is able to recognise most colours and is counting from 1-10 (however missing out 7) and recognises different shapes. She recognises the difference between weights - heavy and light and recognises the differences between Big, medium and small.

Charlotte particularly enjoys the cooking she does at school and is very enthusiastic about eating what she has made. Her teachers mention that she has a very healthy appetite and will try all things and is a good "role" model to other children who may be a little big fussy with their eating. However, she is not very happy and shows her displeasure when she is not allowed to eat the food she has made.

As always, we are very proud of Charlotte and what she is achieving. Her teacher said "I think she will go a long way". I intepret that to mean she will do very well will certainly make her own way in life. We have no doubt about this, with her determination she will achieve anything she puts her mind to

Tuesday 30^th

Samantha took Charlotte to her Childminder in Basingstoke yesterday for the start of half term week. It has been 2 months since Charlotte went and as they arrived at the estate Charlotte bursts into tears and said "no, mama, home"! She is comfortable being in a routine but soon settled in, she ate all her lunch enjoying the mini wrap and fruit Mummy had prepared.

First Conversation

At the grand old age of 5 years, 3 months, 2 weeks and 1 day Mummy had her first real conversation with Charlotte today. It went like

• Mummy, "did you go to park today Charlotte?"
• Lottie, "yek, swings and slides"
• Mummy, "do you like swings and slides"
• Lottie, "yek."

I know it sounds basic, and it is, but it went exactly like that in normal conversation time.It felt really good. She may still sound like she is speaking Klingon much of the time and the pronounciation may not be great due to the hearing loss but we are starting to understand her and communicate with her. The language is starting to come now and we look forward to her really progressing during in 2013.

Tuesday 16^th

I don't know why but I have never read the daily report book that Charlotte's School teachers and Samantha fill in every day to keep each other updated on her progress. I read the current book tonight,which dates back to the 3rd of September,and will now do so from every day as it gives me such hope and makes me feel immensely proud to see the progress she has made since starting at the Henry Tyndale School in Farnborough. I was beginning to doubt I would ever see her walk unaided or have a conversation with her but it is exciting to see the progress she is now making however small, each small step she achieves is actually a giant leap forward in our hopes for her future progress.

she has started trying to communicate a lot more recently. "s" words are very difficult as it is one letter, even with hearing aids, that she will never hear. Other high frequency sounds she may never hear are "t", "f", "sh","th" and "ch" so Charlotte may not be the easiest name for her.

She does now substitute letters she can hear for those she cannot,ie she says "poon" for "spoon" , "pork" for "fork" and substitutes "K" for "t" which is okay as "cat" becomes "cak" but she now tries it for "sock" which is not so good.

She has recently really started to communciate with an ever increasing number of 2 and 3 word phrases like "dada car home" recognising the time when I am usually about to get home. It is great when Sam tells me she knows what time I am due home and gets excited.

She has also started counting all the time 3,4,5, 8,9,10 mainly as the others are more difficult. Her pronounciation may not be perfect as she cannot hear all of them properly but more importantly she recognises them. New words are coming all the time and the latest are "cooking" and "beans" she likes baked beans. She recognises both our cars and will point at them saying "dada Car" or "mama car".

And yesterday we had fabulous news from school that she can recognise her friends names from a chart. she also loves seeing her name written and becomes excited by it, although she is "karlotte".

We were sent a wheelchair last month but she undertands what it is and seeing so many children at school permanently in wheelchairs refuses to use it and has become even more determined to walk. She clearly wants it so much and tries so hard and is not put off every time she only manages a few steps and falls. Her left leg does still drag often and she gets tired quickly but she asks for her walker and will not give up. We are so proud of her. She will never run but she will walk unaided one day . If there were an olympic gold awarded for determination she would win it .

Monday 1^st

Charlotte went to see Dr Dempster at Frimley Park this morning for an assessment of her leg since the Botox injection.He was very pleased with her and does not want to give her her repeat course at the moment as she is doing so well.

There isn't a maximum number of times she can have it but he did say the body can build up antibodies against it and over time it does become less effective. He said if she starts walking on tip toe again then we should book an appointment to see him earlier. In the meantime he will review her again on the 4th February.

Monday 3^rd

Today was Charlotte's first day back at school and she was not impressed by being woken up early and dragged out of bed. She still refuses to wear her hearing aids at home and says "no" if we indicate we would like her to wear them and will pull them off within seconds. Her Teacher put them on this morning and she wore them all day without taking them off once, so yes she is just playing us up.