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Samantha took Charlotte to Frimley Park Hospital 13:00pm today where she was admitted to the Day Ward before her repeat course of Botox Injections in her left leg. Poor Charlotte suffered "empty belly syndrome" as she is not allowed to eat anything until after the injections. Unfortunately there were delays and it was a couple of hours before she was found a bed on the ward and then she was not wheeled into Theatre until just after 16:30.
As per her last visit on the 10th April 7 or 8 Dr's hovered round Charlotte in the Theatre but she bravely faced them off. They gave her two injections again but unlike last time she just took it in her stride. The Dr remarked that he did not know why they bothered giving Anesthetic when the child takes it as easily as Charlotte. But our brave little Lottie Lou Low has had more injections and seen more Hospitals than most people do in their lieftime. The only grumbling coming from Charlotte was emanating from her very empty belly.
We will wait around 48 hours as before and then really start concentrating on physio on her leg 3 times a day and keep fingers crossed that we see some permanent improvement. As before we have around a 3 month window before the Botox wears off.
It is hard to believe 5 years has passed since it all started on Friday 13th July 2007 when at approx 11 am Samantha was rushed to Frimley Hospital and it ended over 52 sleepless hours later at 13:31 pm on Sunday 15th July at St Mary's Hospital Portsmouth when Charlotte was delivered.
Charlotte is now 5 years old. Where have the last 5 years gone? We continue to be very proud of our little Lottie Lou and will never forget her fight for life at the beginning of her life. Charlotte has now just finished her first year at school and we are now starting to see some real changes in Charlotte. Her language and communication is coming on and although every word is not clear due to her hearing issues, she is making very good progress. I have stopped counting the number of words Charlotte has, partly because I know that the words are now coming and I feel confident that Charlotte will talk.
I would estimate she has between 150 - 200 words now. She is putting 2 and 3 words together, examples: "I got it", "Where's dada gone" "bedtime, mama come". "Mama come here", "Look a plane". It really is a joy to listen to her now communicating her needs and after waiting so long for her words, its a very exciting time for us all.
She is quite the little madam, and is becoming increasingly concerned about her image. On a recent shopping trip to buy some new shoes, she was very specific about what she wanted and after I presented shoe after shoe to her, only to be met with a very loud "NO", she was sitting in a shopping trolley and she shouted"that way" and then "this way" and pointed out some very pretty pink glittery shoes. I can see we are going to have trouble in the future with shoes !
Charlotte can now count most numbers 1 - 10 (waiting for 7) and can identify the numbers on flashcards too. She recognises all common colours and can name them. She knows the names of lots of animals and is starting to say the names of common household objects, door, phone. She understands a lot more now and will usually understand most common instructions but she is so cheeky that when I ask her to do something it is usually met with a very loud "NO".
Charlotte has managed 22 steps unaided, however, this was just a few weeks after her first set of botox injections into her left leg. Usually, about 8 or 9 steps is what she can manage. However, she is speedy gonzalez in her walker. I never, ever thought I would have to chase after her as she literally runs in her walker.
Charlotte is such a sweet little girl - when she's not having her tantrums. She has real empathy for other children in her school that are maybe a little less fortunate than Charlotte and whenever they are in tears she will try to make them feel better by stroking their arms.
Unfortunately mum was ill with food poisoning over the Birthday weekend and on explaining what was wrong to Charlotte, she actually understood and said "mama, belly hurt", she came over, rubbed my tummy and gave me a kiss. So sweet.
It will be interesting to see how much progress Charlotte makes in the next year after another year at her school Henry Tyndale in Farnborough. She has made amazing progress this year, and we are sure that after another year at her school we will see big changes again.
Happy 5th Birthday to our sweet, special little girl.
Samantha took Charlotte to an 11am appointment at the Fracture clinic at Frimley Park Hospital,for a review of her progress since the Botox injections. He leg has become stiffer again although she can stil lput her foot flatter than before. The Consultant decide another course in the left leg would be beneficial and then a course in her right leg a few months later. She has an appointment at the Day ward at Frimley Park 31st July
It was the annual review of Charlotte's special needs statement at school today. They are very pleased, as are we, with charlotte's progress since she joined the Henry Tyndale School in Farnborough last September.
Charlotte now has around 140 words and is now starting to put them together and we have heard a few 2 and 3 word phrases. School also note big improvements with her vocabulary and also said that her attention span is much better. They have also been working on various words and letters . Charlotte regularly asks for "i ceam" but a few days ago started to call it "I cReam, and has used "R" in a few others words so School must have helped her with that letter."
Examples of her 3 word phrases are:
Charlotte is now learning to count and school say that she can, in order, pick up number cards that are placed on the floor from 1 to 8. Charlotte says a few numbers and her favourite number appears to be 8. We have mainly heard her say 1,8 & 9 but as sounds like t,f,th,s may be out of her hearing frequency range 2 -7 may be more of an issue for her.
School have realised to just how determined charlotte is and say that once she is focused on a task then she will sit and do it until she has finished it. Funnily, if she finishes hers before others she will move onto theirs and finish theirs off too!
Since the Botox injection in her left leg the school have supported us by doing the physio stretches she needs and Annette, her Teacher, mentioned today she was amazed at the progress she has made. Today Charlotte managed to hide from Annette, she was actually hiding behind her after walking, and Charlotte found this highly amusing.
A week after the Botox injections and Charlotte's left leg feels more supple to both of us. She is having physio on her legs 3 times a day on both legs, dad in the morning before dressing her for school, also during the day at School and mum does some in the evenings. Sarah , her physio from Aldershot centre for Health ,also visits her at school in Fanborough and did an assessment today.
She also thinks her left leg stretches are much easier and she is tolerating them better. She has a better standing posture with improved weight distribution . She always used to drag her left foot or stand on tip toe but we have noticed her standing with a flat foot for the first time. In fact her right leg now seems worse, stiffer, than her left leg and it has always been the other way round. Last night she pulled herself up by the tv and managed 6 tottering steps towards us before toppling into our arms and we both uttered a very loud "yeah well done Charlotte, you clever girl". We wish we could fast foward the next few months to see if there is any permanent improvment but it is stil early days yet and we must be patient as always.
Sarah is also going to speak to the company who supplied the new walking frame about a real problem we have with it. The old frame had permanently locked wheels but the new one does not. It has front wheel locks which can be released making it very difficult for Charlotte to steer. The little terror discovered these on day one and the very first thing she does when she uses the walking frame is bend down and unlock them. If we then lock them she immediately unlocks them again . We have tried taking her out for walks but without much success since we had the new frame as it just turns into a battle with her over the locks
Charlotte's Gran & Grandpa kindly came down from Birmingham and stayed last week to look after her for the first week of the Easter holidays and Mum & Dad are on holiday with her this week.
Today we had to take her to the Day surgical unit at Frimley Park Hospital for the Botox Injections in her left leg. We had to be there for 1 pm and Charlotte was assigned a bed on the ward,changed into her PJ's and then given a local anesthetic. She was a bit grumpy as we were told not to give her any food or drink after 7 am so she was suffering from 'empty belly syndrome'.
At approx 2 pm she was wheeled into Theatre and we had another wait until 7 or 8 Doctors gathered round and decided upon a two pronged attack from either side simultaneously as being the best plan of action, as she required two injections. Charlotte did scream for a few minutes and it was difficult to watch , so we were all relieved when she was wheeled back to the Day ward. We had a bag of chocolate cookies all ready for our brave little girl and she ravenously munched her way through the lot.
We had been very unsure initially about whether to proceed with this course of action , especially after reading about all the possible side effects on the back of the consent form but I had a meeting with the DR last February 14th and he assured anything more than soreness or swelling was rare and i conveyed this news to Samantha. About 80% of children show some degree of permanent improvment . The Botox will temporaily loosen the muscles and will wear off in about 3 months and Charlotte must have physio 3 times a day while it lasts. She is due to see the Dr again in May and we are keeping everything crossed it helps her walk better with the frame and possibly even enable her to walk without it. Only time will tell what the outcome of this will be.
Charlotte was visited at school in Frimley by Sarah her Physio from Aldershot Centre for Health and was also given a new very bright green Walking Frame. She seems to have had a growth spurt recently and has finally got too long for the white frame she has had since 11th Dec 2009. She is still in size 2-3 clothes but it won't be long before she moves up a size .
Charlotte knows what to expect now from Sarah's visits & automatically lifts up her legs when she sees her, ready for her shoes and socks to be taken off and physio exercises to begin. Her legs have got stiffer recently, probably a result of the growth spurt but Sarah was also going through exercises we will need to do daily with Charlotte. She is due to have Botox injections in her left leg on 10th April , this should loosen the leg muscles within 2 or 3 days of the injections and the effect should last around 3 months. She stressed that it is really important that we do these exercises morning, noon and night every day during this period if Charlotte is to gain any permanent benefit from it. Only time will tell how much it will help improve her posture and walking ability but we must do everything we can to help improve her chances of benefiting from it.
Charlotte had an Appt with Daniel Langer, the "Audiology Scientist" at Basingstoke Hospital. .to be continued
It's an exciting time for us in the "Low" household. We have had to be so patient over the last 4 and a half years and although we celebrate the tiny little steps forward Charlotte makes, the waiting has always been hard and it has been difficult for us to be patient at times. But as we sat in the garden last Sunday afternoon watching her playing ball with the cats, we realised just how far she had come in the last few months.
The fantastic and incredible news is that after a meeting with Charlotte's teachers at school last week, we were told that Charlotte had managed to do 14 steps on her own unaided. Although, we have only seen a few steps at home, with the space they have at school, she had managed to do 14. She tires very quickly and only manages it a few times. It doesn't seem so long ago that we could not imagine Charlotte taking just one step unaided, let alone 14. Although, she is very unsteady and doesn't always manage to walk when prompted, she is getting there and continues to be the most determined little girl we have ever known. She really wants to walk and becomes very excited when she manages a few steps. Charlotte is due to have Botox injections in her left leg on 10th April and we are hoping that this will help even further.
But, her changes have not only been physical. Her communication is moving forward in leaps and bounds. With quite a few (prob approx 80-90) single words in her repertoir,she has now started to put 2 or even 3 words together. At school the other day she said to her friend Cameron "hold my hand" and to us at home when wanting another biscuit she said "one more" and last night when I said "night night" to her she responded for the first time "ni nike" and when on her way to bed she says "go... up.... bed" We have been so desperate to talk to Charlotte but now, we know its just a matter of time, we are so excited about this.
In January 2011, at the age of 3 1/2 Charlotte still only had 2 or 3 words and could not even stand unaided or walk a few steps. Since she has started at the Henry Tyndale special needs school we have started to see amazing progress especially in her understanding, language and communication skills and have high hopes of what 2012 may bring . It is a very exciting time as we seem to be hearing a couple of new words almost daily./p>