Monday 25^th

We received a letter from the South of England Cochlea Implant Institute in Southampton.They are waiting for funding from our local NHS and will then arrange an appointment for us to take Charlotte for tests to see if an implant may be considered. The initial appointments will be held over a week and she will undergo MRI/CT scans and be assessed by various specialists.

She cannot hear anything out of her left ear and has only moderate hearing with her right ear. It is a big operation and thus will only be considered if she may benefit from it. We are hoping that she may have enough hearng on the other side so that it will not be necessary. She would be in hospital for 5 days and then have 10 follow up appointments. It will not give her normal hearing and she would not be able to hear music or use a phon on that side, it would help her pick up speech. she would have to learn to hear and distinguish sounds in a very different way as it bypasses normal hearing. She would wear a larger hearing device which would plug into the implant behind her ear .

Thursday 14^th

Sam took Charlotte's Walking Frame to her Nursery today. Her Physio Pam is due there at 3pm to show them how to help her Practise with it. It will be left there in the week and we will then bring it home at weekends as everyone is determined to get Charlotte walking unaided before her 3rd Birthday in July

Tuesday 12^th

Charlotte's last hearing appointment in December showed her hearing had deteriorated in both ears and the Audiologist could not explain why, but we hoped it was due to the infection she had at the time.

The good news is that today her right ear tested back at the levels of moderate hearing loss, the same as before her December checkup, so it was due to the infection.

The not so good news is that he did extensive tests on her left ear and it looks she has been wrongly diagnosed the last 2 1/2 years on her left side. He says she has profound/severe hearing loss (not moderate) on the left side and would not be able to hear anything even with the hearing aid in. We have lost 2 years where she could have been hearing pretty much normally on both sides, as opposed to nothing on the left side.

She is to be referred by Basingstoke Hospital to a specialist at Southampton Hospital with regards to considering a cochlea implant. These are normally only considered for children with severe or profound hearing loss in both ears and would require an operation.This would be much larger than a normal hearing aid but would enable her to hear in stereo. This explains why at 2 1/2 she is still not talking !

He could not answer our query as to whether her speech would be affected permanently as we are 2 years down the line, he said it is possible but that her case is very complicated.

New Years Day

2010 is the year we hope Charlotte will finally walk and talk. She has started babbling more lately so hope some words will come soon. We are convinced she will be walking unaided by her 3rd birthday in July although only time will tell how well. She may have minor Cerebral Palsy affecting her left side but she is very determined girl.

Our Wedding 18th December 2009 - Raising Money for BLISS, The Premature Baby Charity

It snowed heavily the night before our wedding so it really was a dream white wedding at Easthampstead Park, Wokingham, Surrey and Charlotte we will put some photo's up soon.

Tuesday 15th

Charlotte saw the hearing specialist today for a routine checkup but did not do very well. Her hearing is not as good as the last time and he said at these levels, not wearing hearing aids will seriously affect her. Her left ear seems to have gone from moderate loss to profoundly deaf. We won't really know anything until they run further tests on her next month.

She has not had them on as much as she should because she just pulls them off all the time. He said she has to wear them all the time with only exception being when she is asleep. We will have to try harder with her.

He said they will now want to see her every month and keep a close eye on her. He cannot explain the detoriation but she has been unwell so this may be a cause. The hearing aids report how long they are on for, and he can see that have not been on for as long as they should be, so we have been told off.

Monday 14th

Charlotte returned to Nursery today. She was much better yesterday with her tongue ulcers healing nicely, and lips almost back to normal.We had thought she had lost some teeth because her gums had been so swollen they were no longer visible. We had been squirting water into her mouth hourly becuase she was losing so much saliva , not been able to close her mouth due to the swollen lips.

She ate her first sold food yesterday , spag bol, having been unable to eat anything except yoghurt, ice cream or custard since last wednesday. She was also able to start drinking from her cup from Saturday afternoon. We had been using her Nurofen syringe to squirt water into her mouth as she could not drink from a cup. It must have been really painful for her.

Friday 11th

Charlotte's new Walking Frame was delivered by her physio Pam today. We will start herusing it once she is better.>/p> I took C to see her GP again today as her lips are now also swollen. It must be very painful and all she has had to eat sinece wednesday is youghurt, Mousse and Custard. The Dr said we just have to wait and she should improve over the next week. Poor Charlotte .

Thursday 10th

C's temperature is normal, she has pretty much recovered from the flu, and her chest infection is improving.

Samantha noticed yesterday her gums had become swollen and were bleeding heavily and I noticed this morning she had ulcers all over her tongue. She cannot eat because it is too painful, which is torture for C as she really likes her grub !.

We took her to the Hospital asked the Dr if it could be related to the Tamiflu drug, the symptoms began shortly after she began taking it. The Doctor said she was having an adverse reaction to the drug, known as Stevens Johnson Syndrome and should not take any more. Once the Tamiflu is out of her system she should start to recover, it might take 2 or 3 days.

Poor Charlotte , she so likes her grub but her mouth is so swollen and sore she has been unable to eat anything except ice cream so we have just bought loads in. She has eaten lots of ice cream !!. we do not care as we are very relieved, we were really worried earlier .

7th

Charlotte had a temperature over the weekend , without a combination of Calpol and Nurofen it was reaching 39-40. It sounded like it had gone to her chest yesterday so we booked a Doctor's Appointment this morning.

She has been diagnosed with a chest infection, fever and flu, possibly swine flu. We have started her on antibiotics this afternoon and Tamiflu. She will stay at home but the Dcoptors have advised we get her to hospital asap if her condfion worsens even slightly.

Our wedding is in 11 days time but we will obviosuly cancel should she not be fully recovered.

Friday 27th

C had a home visit from Pam her physio today. She has not seen her for 6 weeks and is really pleased with her progress. The cerebral palsy affects the movement in her trunk and left leg but she thinks c has come a long way in her stepping , which is now pretty steady now for both legs. She pulls herself up onto the sofa and shuffles along but is now confident enough to lean against it without using either hand to hold on.

She thinks C will be walking within 6 months (hopefully by her 3rd birthday) and does not think she will have any drastic issues, at worst she may look clumsy or have a slight limp.

She has ordered a walking frame which will arrive on the 11th December. It is a frame with wheels which will allow her to move forward but not back and will restrict any hip movement so she has to focus on using legs only to walk.

Charlotte has also been weighed and at 2 years 4 months old is 23 1/4 lbs

Thursday 5th

Charlotte's special boots arrived today from the Physio dept at Aldershot Childrens Centre. Over the last 4 weeks she has finally started pulling herself up onto the sofa and unsteadily shuffling along a few steps, often supporting herself with the one arm which is really encouraging. It is obvious she really wants to be able to walk.

The boots have special supports on the insoles to stop her trying to stand using them and also curl her foot and toes . They will hopefully help her to eventually stand properly. The effect of the Cerebral palsy on her leg is that it is like the muscle is permanently in the "on" position and her leg is very stiff/tense as a result with her feetand toes in a clawlike position. Hopefully continued physiotherapy and the use of the boots will help her overcome this.

She won't be walking by our wedding next month as we had hoped but we are optimistic she could be walking by her 3rd birthday next July. There is a lot of work to do but the physio is doing a great job.

Wednesday 21st Happy Homecoming Anniversary Charlotte !

It is hard to believe 2 years ago today our Angel came home from the Special Care Baby Unit at Frimley Park , 99 days after her birth and 8 days before her original due date.

She has come so far in that time and her story continues, we have a bottle of Champagne on ice for the day when she has takes her first step unaided.

Tuesday 13th

C had a morning appointment at Aldershot Children's Centre to assess her leg and foot movement. She will not need splints, which was one possibility. Her feet were measured instead and special boots have been ordered (with inbuilt supports)to help with her stability.

Daddy ordered them in pink to match her pink hearing aids. They should be ready in about 10 days and her physio will bring them to her next appointment. Charlotte cannot stand up by herself yet but can pull herself up onto the sofa and we are also trying to get her to move a couple of steps along it by placing toys just out of reach.

Tuesday 6th

Charlotte had her 2nd apppointment at Basingstoke Hospital Audiology Dept. They tried testing her left ear , they could not get a clear picture as she was not in the mood although it was obvious her hearing is worse than that of her right ear.

Monday 5th

One year ago today Mummy went back to work and Charlotte started at Nursery. Mummy was in tears for the first few days as being separated from her was so hard but we can look back now and say sending her to Nursery was the best thing for her development.

Charlotte cried for the first few days but quickly settled in and grew to love the place and there is no doubt the social interaction with the other kids really helped her progress at a faster rate both mentally and physically far more than if she had remained at home. It also helped her immune system develop as she caught all the usual colds and bugs from other kids which she would otherwise not have faced until she started school.

Tuesday 22nd

Charlotte is exactly 2 years, 2 months and 1 week old today. She had a checkup with her paedeatrician today and was weighed in at exactly 22 1lbs. It is incredible just how much she eats but the greedy Piglet is still very slim and long and is now wearing a mixture of 9-12 months and 12-18 months size clothes. She is still wearing the same sleep suit as 10 months ago.

The Dr also measured her head size and she has now come backdown to the 50th percentile which is average/normal. A routine post discharge scan on 23/11/07 revealed that she had developed ventricular dilatation (swollen ventricles in her brain)and Hydrocephalus (excessive fluid on the brain) as a result. Her head size had increased to the 94th Centile and she was referred to a specialist at St George's in London as they thought she might need a Shunt inserted in the back of her head for life. Fortunately it started to show slight improvement so no shunt needed. She slowly stopped looking like a "conehead" as her head size started to look more normal. When last measured it had reduced to the 70th percentile so it is great that is is now completely average.

Wednesday 16th

A letter arrived yesterday informing us Charlotte had been booked for a urinary tract scan at Frimley Park Hospital at 5.20 pm today. She has required antibiotics to treat a water infection 3 times this year, and there was concern there might be a problem. We are pleased to say that the scan today showed everything is normal.

Tuesday 15th

We requested a few months ago that Charlotte's Audiology care be moved from the Royal Surrey in Guildford to Basingstoke Hospital near where Mummy works and today was her first appt at Basingstoke. This was partly to save Daddy having to take a day off every time she had an appt and also we wanted her to be seen elsewhere as after two years of "tests" at Guildford we still really do not have a clear idea of her levels of hearing are .

So, mummy was able to pick her up from nursery and arrive in good time for her appointment at 11am. I was worried that as we walked into a new place there would be tears, but to the contrary, she seemed quite excited at entering a new hospital.

As we entered to sound proof room Charlotte became quite excited and I was happy she was in such a good mood for her hearing tests. They had put a little chair out for her. Being 2 they expected she could sit, but I had to explain that she is delayed quite a bit due to the Cerebral Palsy, so the tests would need to happen with her sitting on my lap.

After 5 minutes of introductions, and them playing with Charlotte it was down to business. With Charlotte sitting on my lap, a lady opposite, started to distract her by playing with toys. Then a series of noises were played, if Charlotte turned to the noise, she was presented with bright lights showing cuddly toys. I was really happy, she seemed to be turning to some quite quiet sounds and I was starting to feel really confident. She was an absolute star and they managed to do a lot of testing with her

After about 45 mins, all the results were punched into the computer and I was then presented with a graph! After a thorough explanation from the audiologist, we now know that Charlotte's hearing in her right ear is not quite as bad as first thought. She is hearing low frequency noises at 30 decibles. Normal hearing is between 0-20 decibles. However, the high frequency noises she is only hearing at a rate of approx 80 decibles. This means in normal conversation she is hearing alot of the letters, however, the type of letters at high frequency are S, SH, F, T etc so will be missing alot of clarity of speech.

I was so pleased with the care at Basingstoke and the people were great with Charlotte. She is to have follow up appointments and tests until they know exactly the picture with her hearing. I think next time there will be focus on the left ear. It is very important she still wears her hearing aids as she needs to be able to pick up all the letters in speech so it develops properly

Friday 4th

Charlotte had a home visit from Pam her Physio today. We had hoped Charlotte may walk by Christmas and our Wedding but although pleased with her continued progress , she thinks it could be up to another year before she walks unaided. We have decided to target her 3rd birthday next year, so we will really crack on with her exercises.

Even now it is diffcult being patient, especially when we see other babies born at 24 weeks walking at their corrected age or talking but Charlotte has brain damage which left her with cerebal palsy and we just feel so blessed that she is doing so well. She may not be walking or talking yet but we could very easily have been left with her never having a chance of either. She may need hearing aids and have a problem with her left leg and most likely walk with a limp but we are still so proud of how well she is doing