Thursday 28^th

Graduation Day.

Charlotte attended her first Graduation Day today, Graduation from Nursery. What a lovely event the nursery put on for the preschoolers who are leaving for school this year. Although Charlotte isn't in the pre-school class,(she is still in toddlers), she was very much part of the event.

All the children arrived dressed in their black capes and graduation caps and it was all very sweet. As I searched the room for Charlotte I wondered where she was and then she came in through the back door !. She was not impressed with her black cape and decided to take it off. As they started to read out the names of the graduates they went and stood on a podium and were presented with a certificate with some nice words being said about them. I soon realised that Charlotte was going to go up last, and noticed that something different was going to happen as the last certificate in the row was wrapped with yellow ribbon with the others being wrapped in red.

As it came to Charlotte's turn, they announced that it was the "special achievement award" and spoke about how nothing stands in Charlotte's way and how she was their little star and that they would really miss her. After that was done Charlotte walked to the podium in her walking frame and climbed up with the help of Jo and everybody clapped her. Mummy was so proud.

I thanked them all for organising the lovely event and they said that "Charlotte is a legend" and we will all miss her so much.

Saturday 16^th

Something really exciting happened this afternoon. At the grand old age of 4 years 1 day she finally managed to stand unaided and for around 20 seconds before toppling over. Later in the evening she tried it again and managed 10 seconds. She was extremely excited about it and kept saying "again again" and then standing. Shes must have managed it about 6 or 7 times for about 10 seconds each time. She was very excited and pleased aboutit as we were. Who knows maybe she coulod be standing properly by Christmas. Go Charlotte Go.

She has also recently just started trying to copy words as far as she can hear them and showing understanding of them. she must have a good 30 words now. Sock has become gock as even with her hearing aids in there are some high frequency sounds she cannot hear, we think the letter S is one of them. She is probably at the level of an 18 month old at the moment but she is progressing which is all that counts. As regards milestones it does not matter how long it takes to get to the finishing line, it is crossing it which is important.

Friday 15^th

Our little girl is 4 years old today. We cannot believe how quickly those years have gone. We are so proud of her. Charlotte now seems to have around 30-35 words. She also is attempting to copy alot more and out of the jargon and babble, sometimes we think we hear 2 or 3 word sentences which appear to make sense and be appropriate for the situation. A couple of days ago she was standing behind her door gate to the kitchen shouting at me and then I suddenly realised what she was shouting sounded very much like "I wanna come in". I then asked her if she wanted to come in, and she said "yeah". Its an exciting time for us because there now finally appears to be some progress with her language and communication skills. Charlotte now keeps her hearing aids in quite well and hope this makes a difference. We cannot say the same for her glasses.

Charlotte still uses her walker to help her walk but still crawls everywhere. Her little knees must be so tough after 3 years of crawling. Its very slow progress but each day she gets stronger. We hope she will one day be able to walk independantly but we no longer think about when that may be. At birthday time or Christmas time we always used to say "maybe this time next year she will be walking or talking". We don't do that now as the birthdays and Christmasses come and go without her doing either. But one day, she will, we know it. She trying so hard just to stand unaided at the moment and this determination will be the making of her, it will mould her into a strong little lady.

Charlotte has just moved up to size 2-3 clothes. She is a skinny minny and although the length of trousers is fine, most trousers are way to big around the waist for her. We have ordered her school uniform from the school and the smallest size is 3/4. I hope it won't be too big for her when she has her first day in September.

Our little girl is starting school in September. Unbelievable.

Happy Fourth Birthday Lottie Lou xxx

We will have added a new photo section on her website, mainly of her recent holiday in at the Hotel Play Del Moro in Cala Millor, Majorca. We flew out Saturday 5th June and came back Saturday 9th July.

Friday 27^th

Charlotte had her first sponsored "fun run" today, albeit using her walking frame. She came last ! It's not the winning that's important, it's the taking part and she was extremely excited about it. She has also started "kicking" a football around whilst in her frame, she could be a British Paralympics star in the making !.

Some (fairly hunky - Charlotte's words !!!!) fitness instructors from the Gym next door started off the fun run by doing some warm up exercises, stretches and jumping and touching your toes. Then the whistle went. As the toddler's disappeared into the distance, this didn't deter Charlotte at all. She went at her own speed in her walking frame and thoroughly enjoyed herself. As she reached the finishing line, the other toddlers were all tucking into their well deserved chocolate biscuits and orange juice and cheered her on. It certainly brought a tear to my eye. A proud mummy moment !

Saturday 14^th

Charlotte's school confirmation letter dropped onto the mat this morning. After months of stressing we have got the school we wanted, Henry Tyndale School in Farnborough, a Special Needs School with an excellent Ofsted Report. She starts in September.

They are specialised in dealing with kids like her with Cerebral Palsy, hearing loss and developmental delay so hopefully will help her progress. Who knows maybe by this time next year she could be talking and walking well with her frame.

Tuesday 3^rd

At long last it has started to happen. We have waited a long time but it does appear that very recently Charlotte has started trying to talk. She has been talking complete jargon for months and we thought the words would never come. At Christmas she was only saying "dada", "mama" and "more". Now out of the complete jargon, some words have started to appear as if by magic! We have to admit we were starting to think it may never happen, started to think that the only way we would have to communicate with Charlotte would be sign language, but now, we are overjoyed to announce that Charlotte appears to have grasped the concept of language and is now trying to communicate.

She has also very recently, after several years of failure and frustration on our part, started to wear her hearing aids for significant periods of time before pulling them off. she finally seems to understand they help her. lets hope the same happens with her glasses soon.

She has only just started to grasp the concept of and try using two words together but that is something we have dreamed of for a very long time.She now seems to also understand what her hearing aids are for and for the last week has kept them in for most of the time which is fantastic.

I have just visited Charlotte in nursery as we had an appointment with Liz (hearing teacher) and you I couldnt contain my excitement when Charlotte looked at me, and shouted "go away go away". Ok, not exactly what you want to hear, but I am so excited I could burst.

She has a few more words, like "mine, again, nana (for both her nan and banana!) grandad, aba (for bag and bath), no more, and she is trying to master others !

We are keeping everything crossed that this is just the start.

Monday 28^th

Charlotte caused quite a stir in nursery this morning when she arrived wearing her new glasses, which we collected on Saturday.All the kids were swarming round her and touching her glasses, saying "Charlotte's got glasses, Charlotte's got glasses" and she was loving it !!!!!. She kept pointing at her glasses and saying gaga and showing Jo, her Nursery nurse, talk about excited. After the novelty had worn off she started shoving the other kids out of her way because it was getting too much for her.

75% of Children with Diplegic Cerebral palsy have eyesight problems. Her sight is pretty bad in both eyes but her left eye is also a "lazy" eye. She is due to go back to the Orthoptist at Frimley Park Hospital next month and will probably have a patch fitted over her right eye. She managed to walk using her frame most of the way to the Opticians and back. She can definitely see much better with them on but, like the hearing aids, she takes them off at every opportunity.

About an hour after arriving at Nursery this morning Charlotte twisted and broke the glasses frame so I will have to ring the opticians and order another new pair !!

Saturday 26^th

Frdiay 28^th

Charlotte was seen by Pam today (her physiotherapist) who was very pleased with her progress. We need to start doing some stretching exercises with her left leg as it is very stiff and tensed up and this could mean if not attended to that her walking would not be very efficient. If stretching is not successful then the next step would be her wearing a night splint or plaster cast for a week to give the leg muscles a good stretch. All of this is quite common and nothing too serious as it can be sorted with the right exercise. We also need to exercise charlotte's trunk area. She is quite weak here and she needs to strengthen her belly muscles for her to be able to walk. So, there will be lots of stretching and reaching for objects. Pam is going to visit her at Nursery once a week and also show the carers how to work on her left leg

Pam thinks she could be taking her first steps within a year although proper walking is still a long way off and she will probably need to walk holding onto us with one hand for some time. She has been referred for either a walking chair or special buggy to be supplied to help her, as even when she does manage short distances she will tire quickly.

Monday 24^th

We had decided it was finally time to move Charlotte from her Cot to a Disney Princess Toddler bed (ages 18 months - 4 years) and even though she will be 4 this year it will last her a long time. The bed arrived today so dad spent 2 hours assembling it, 45 mins according to the instructions but they always lie. We put her to sleep in it and all was well until 3 am when she woke up crying and crawled out of it al lthe way to out bed

Tuesday 7^th

Samantha went to the Cochlea Institute in Southampton for the results of the scans and tests done in Portsmouth Hosp on 10th December. Charlotte is no longer considered a candidate for an implant. She had 3 ABR scans that day because the consultant was not expecting to find any level of hearing in the left ear.

She has severe hearing loss with moderate hearing loss at one frequency so it is thought that a cochlea implant will not offer her any more hearing than her hearing aid currently does. She may still not hear all the letters at a very high frequency like F and H with her hearing aids in but hopefully she will hear enough for her speech to start to develop.

The MRI scan also confirmed there is no damage to her cochlea so it is the inner ear hair filaments which are damaged. It also showed signs of her Hydrocephalus (Water on the brain) but the Doctor think it is no longer at a level to be concerned about.

Tuesday 4^th

Charlotte had a home visit by the Educational Pyschologist this morning, She has agreed that Charlotte will need to go to a Special Needs school this September and we have seen a good one in Farnborough. Charlotte is significantly delayed , her general play and interaction are more like that of an 18 month old and she will need a lot of one on one support. She is obviously very delayed, but she is self aware and aware of her surroundings. Only time will tell how she progresses .

Wednesday 15^th

Sam had a call from SOECIC to discuss the results which in her left ear are better than thought but the right may not be quite as good as we hoped. She did mention actual hearing achieved does tend to be slightly better than the test results reflect. They did not test at 500 frequency in the right ear but we know she can hear at 20 decibels in that ear (0-20 is normal) . The "speech bubble goes up to 50 decibels. Above 50 and no letters will be picked up by the ear.

The left is actually better than previous tests which indicated it was in the 90+ decible range, which is too high for a hearing aid to amplify it into the "speech bubble range" of less than 50.

Right Ear Results at Low & High Frequency.

• 1000 frequency = 40 decibels
• 2000 frequency = 70 decibels
• 4000 frequency = not sure, (i.e. probably nothing)

Left Ear Results at Low & High Frequency.

• 1000 frequency = 80 decibels.
• 2000 frequency = 60 decibels.
• 4000 frequency = 70 decibels.

The Audiology Appointment at SOECIC on 7th January has been cancelled , we are told no further Audiology tests are needed re cochlea assessment, but there will have a meeting that afternoon to discuss the results and what happens next.

Tuesday 14^th

We had two meetings today,without Charlotte, at the Southampton Cochlea Implant Institute. The consultant at the 2nd meeting did the hearing tests at Portsmouth on the 10th. She said she was surprised to find some indication of hearing at the high frequency range at 70 decibels in her left ear, whereas we had been told there was no hearing in the left ear at all.

This level might with a hearing aid push her into the "speech bubble" range and compensate for her right ear which is worse at high frequency. This gives us hope that she may have enough hearing with hearing aids for speech to develop without needed a cochela implant.

Friday 10^th

As a continuation of the Cochlea Implant assessment Charlotte went to Queen Alexandria Hospital in Portsmouth today. She was in her own bed on the ward by 12:30 and was taken away on a trolley around 1.45 pm and we did not see her again until 4 pm. We then had to wait until she was fully recovered from the anaesthetic before we could leave at 5.30.

had the MRI, CT, ABR scans and it all took longer than expected as the consultant from the Cochlea Implant Institute did the hearing tests 3 times, as the results she got were not what she was expecting!! .