Thursday 26th

Charlotte had a home visit from her Physio & Samantha asked if she might need splints for her legs. Pam thinks possibly Charlotte won't need them. We had assumed Charlotte would walk with the stereotypical limp or gait of someone with Cerebral Palsy but Pam said she believes, and hopes, with Charlotte it is so mild that when she is older she will merely be a bit clumsy and only be a person with a trained eye will notice anything.

Babies with CP are classified from level 1 - 5 each year until the age of 6 and Charlotte is level 1, the mildest, and Pam sayd it is rare for a baby to move down a level. Level 1 CAN be so mild it is barely noticeable, level 3 would make unaided walking impossible.

Pam said as she becomes older her stiffness will lessen and likened it to a person learning to drive. Initially that person may be a little stiff and awkward but as they learn the movement becomes automatic and they become more relaxed. She is having to try very hard to overcome this and learn what comes naturally to most babies.

She also said crawling wasn't that important from a developmental point of view and if Charlotte continues to struggle then the focus will be on standing and walking, returning to the skill of crawling at a later stage. Coordination issues may be holding her back with crawling but its better to move onto walking as Charlotte needs to build strength there.

Overall, she was very pleased with Charlotte and thought she could possibly be crawling within 2-3 months, in time for her 2nd Birthday, or we could be starting to teach her how to stand. We are so proud of our little Lottie Lou.

Tuesday 17th

There was much excitement at Nursery today. Charlotte was lying on her tummy and for the first time managed to lift herself up onto her hands and knees and then into a sitting postion. We have been placing her on her hands and knees a lot but she has always collapsed onto her tummy after a few seconds. It is the first indication she may be crawling soon. Everyone at Nursery is working really hard with us to try and get her crawling by her 2nd Birthday in July.

At Nursery they often place her on her front the mat and have recently noticed that when they turn their backs on her and then look round, they notice she has mysteriously moved backwards a few feet. It has caused much excitement but no one has of yet caught her in the act. She has not managed to move forwards yet. She is so near crawling, we have a bottle of bubbly on standby.

Sunday 8th

Charlotte has had a rough time recently, every time a tooth is ready to come through she has a few days of sickness, diarrhoea,very runny nose, is very upset, loses her appetite and is very restless. We have had a few sleepless nights with her but finally today, her twelfth tooth came through,and things have returned to normal, for a few days at least.

She has 8 more to come before she has all of her baby teeth so we are well over half way there thank goodness. we can’t wait until they are all through as we hate seeing little Charlotte distressed but we still have some way to go as the last Baby teeth can come through as late as 3 years old. We have to be vigilant as she has started biting us, without warning, like a little Vampire, the new tooth marks in my arms bear witness to this.

Thursday 5th

Charlotte is normally fed her last meal of the day at 8 pm and becomes very vocal if it is even a minute late. At 7.55 pm precisely "empty belly syndrome" kicked in and she instantly started bawling for Britain, I became concerned that perhaps she had not eaten much today and checked the daily report card her Nursery provide.

Her daily routine involves main meals at 9.30 , 11:30 and 3.30 with milk in-between if demanded. Today she had Cucumber sticks, then Fish Risotto followed by Pears with Chocolate sauce for lunch and then Pizza with fruit as pudding for her final snack.

I also give her breakfast at around 7.15 each morning, currently a bowl of Weetabix oatibix mixed with full cream milk, and Samantha gives ger tea at 6 pm , tonight it was a mashed up Waitrose mini chicken dinner. She has a final bedtime bottle of milk at 8 pm and tonight gulped down 5 0z as if she had starved all day long . It just shows she is still is one Greedy "Piglet Low".

Friday 27th

Mummy took Charlotte back to "School" today after a week off,with an upset tummy and sickness, probably due to teething as her gums had been really swollen. She gave an excited squeal as she arrived at the Nursery, clearly happy to be back. Boyfriend Alfie was not in however and she started smiling at another lad Charlie,almost as if she were flirting, whilst moving surreptitiously closer

Crafty Charlotte actually had a more sinister motive in mind having realised that Charlie had a rattle, and she WANTED it. With precision she moved in for the kill and with a big smile on her face swiftly prised it away from the big lad whom then started crying

If she carries on like this she may well get a Nursery ASBO as she is already renowned for "liberating" the other babies food from their trays before eating her own. She has reached her "terrible two's" early and is already "bossing" her room.

Friday 20th

Tonight Charlotte, at 19 months and 5 days old, finally moved into her own room, Mummy & Daddy booked the day off work and took her to nursery so we could finish decorating her room and fix blackout blinds and also have time for the two of us, but Charlotte had other ideas. It will be really strange not having her cot next to our bed but we have put the day off for long enough.

One baby had been removed from Nursery last week with Meningitis and another with Chicken pox so when they rang about lunchtime to say she had been very sick, Daddy drove down to Basingstoke to collect her. I saw her nursery for only the second time and I finally understood how hard Mummy has found it seeing babies at Nursery 6 or 7 months old crawling, nearly walking and understanding the carers so much more. It did make me realise how far behind she is, but then i remember how scared we were that she would never even sit, most babies do at 6/7 months and Charlotte did not until 16 months old, but she got there in the end. We just have to be more patient than most and trust that she wil get there.

Anyway we have booked Charlotte a return trip to Cala D'or in Majorca in June/July, it is a really great resort for families with young kids and Charlotte really seemed to enjoy it last year.It will be her 2nd Birthday just after we return and it would be fab if she were crawling by then.

Thursday 19th

Charlotte seems to have become quite a little madame lately and increasingly greedy, she knows want she wants and a full belly is of top priority. If she sees us with food she cries hysterically until we pacify her with a Cheddar cheese biscuit or Cheesy Wotsit and she instantly goes quiet. Her life revolves around food.

She has become a terror at Nursery for trying to grab the food from other babies plates before her own. She even tried to eat the ear of Chisum our Cat the other day, thinking it might be a tasty morsel. We had to give her some Cheesy Wotsits to munch upon whilst we moved him a safe distance away. We were finally ableto buy a forward facing car seat, a baby must be both sitting and weigh minimum 20 lbs.

If Charlotte could talk about a typical day it would go something like this… "I arrive at nursery with mummy at 9 O’clock. The journey to nursery isn’t quite as bad as it used to be as I’m now big enough to sit in a forward facing car seat. It’s great, I love watching the cars and I can now see what mummy does in the front.

As mummy carries me into the nursery I see Alfie (my boyfriend) and mummy sits me next to him. He’s no Brad Pitt but still very cute, he is only 7 months old but will do for now!

By 9.30am it’s time for breakfast. Daddy has already given me some Weetabix but now I get to have some more breakfast. I think some of my friends leave home without eating so it’s good news for me, as I get double. This morning I get some toast with jam. It’s yummy!/

After breakfast it’s activity time. It’s painting today and it’s my favourite, as I can get really messy. It’s something I don’t get to do at home as mummy says it’s too messy. Don’t really understand what the problem is as I love getting myself covered in paint.

I can’t believe how quickly the time has gone. It’s now 11.30am and it’s time for more food. I am always hungry and I love food, I hope it’s my favourite today of lamb casserole. Doh, first spoon goes in my mouth and it’s macaroni cheese. It’s food though so I may as well eat it all up. Thankfully though pudding is my favourite of jelly so I’m really happy.

What’s happened? I’m in my cot and I’ve just woken up. I must have fallen asleep at lunch again. I think I may give a little shout out. I have come to realise that when I scream and pretend to cry that somebody comes to get me up.

I’m back with Alfie again and we are playing with the rattles and the toys. Candice, my nursery nurse, then comes and picks me up and places me on my belly. I don’t understand why I keep being put on my belly. I heard mummy telling Candice that I need more belly time as part of my physiotherapy. Don’t know what this means and I hate belly time so it’s becoming a real drag.

Before I know it, it’s food time again. It’s 3.30pm and time for my afternoon snack. It’s sandwiches, yeah. I love sandwiches. What has Alfie got? I think I will try and eat his before eating my own, however I fail miserably. Candice makes me hand back Alfie’s sandwich and eat just my own.

Wow, where has the time gone, I see mummy walking through the door. It must be 5pm. I’ve had a lovely day but I’m also really excited to see mummy as I know once I get home I get even more food!”

Thursday 22^nd

What a great day. Charlotte visited her physio and she was over the moon with the progress Charlotte had made since the last visit about 4 weeks ago. Charlotte is now able when on her belly to lift herself up a little onto her arms and prop herself up. To many this may seem such a little thing, but to us, it means that Charlotte is continuing to progress.

It is hard when we see just how difficult it is for Charlotte sometimes to achieve certain things that appear to be so natural for other young children, but then what we have is the massive celebration when she does achieve it.

We remember the celebrations when she reached 2 lb, when she first smiled, when she gained some head control, when she first ate weetabix, when she first sat. OK, the credit crunch means we have had to now have Cava instead of Champagne, but never the less, we celebrate every step of Charlottes developement.

I see the speed of development at which the other babies achieve things in nursery. Sometimes it breaks our hearts when we see Charlotte at 18 months old sitting there, really trying to be on the move, not being able to, and then see a little boy of just 8 months crawling or even walking past her but then I think back about her start in life and realise that actually she is doing fantastic and its not about the winning the race but its about gettin gto the finishing line. I have no doubt that Charlotte will certainly achieve everything she puts her mind to.

Monday 19^th

Charlotte's appetite is really coming back in abundance and she is turning back into the little piglet we love and admire !!! After phoning the nursery today to see how she was, I was told that Charlotte had tried to pinch her "boyfriend Alfies" bagel and cream cheese before eating her own.She already has a Toyboy in Alfie, a mere youngster of 7 months, btu they seem inseparable. Thats my girl They have to watch her now as she has started trying to grab the food from the other babies plates before they get a chance to eat it!!!

On a serious note, Charlotte is really starting to let people know what she likes and what she dislikes. The nursery nurse commented that Charlotte was becoming quite a "pickle"! I know what she means. Charlotte is now very vocal about how she feels about things and has the "pretend cry" down to a T. Only problem is, I know the difference between a pretend cry and the real thing ! She follows me, when she cries for real, her eyebrows turn red !!

Monday 12^th

Charlotte had an appointment with Dr Malik at Frimley Children's Centre today. She was weighed first by a Nurse but became really upset. We have noticed she does this when she first see's her Grandma, a common theme is both have white hair, which I think she finds scary. We could not get an exact weight but think she is, at 18 months old, about 21 lbs 4 oz.

Dr Malik then examined her and is now in agreement with the Physio that she does have a very mild form of Cerebral Palsy affecting movement on her left side. CP is an umbrella term which can cover a wide range of issues casued by injury to the brain. Children can have problems such as weakness, stiffness, awkwardness, slowness, shakiness and difficulty with balance and speech. These problems can range from mild to severe. In mild cerebral palsy, the child may be slightly clumsy or shaky in one arm or leg, and the problem may be barely noticeable. In severe cerebral palsy, the child may have a lot of difficulties, or paralysis with the whole body affected. Treatment from an early age can ease the efects of mild cp.

C does seem stiffer on that side and the movements are not quite as natural but she has got a lot better since starting Physio and she does favour the right side of her body. She tries to grab things with her left hand and although she often misses on the first attempt and the movement is not quite right she does actually get there in the end, afterall she is a very determined young lady. Our next targets are to have her crawling by her 2nd birthday and walking by Xmas 2009. She may be very delayed but we know she will get there eventually.

Monday 5^th

This was the day we were all due back at work and Charlotte back at nursery but Charlotte had other ideas.

On the Sunday night Charlotte had a slight temperature which I had put down to teething and I gave her some calpol before bed. She was otherwise well and I had no concerns.

All that changed when I woke up and what followed was probably the scariest few minutes of our entire lives. I (mum) turned on the light and looked at Charlotte to find her staring into space, as if she was blind. I gently tried to stir her and called her name but she did not respond and she continued staring and being non responsive.

Then her arms started to twitch, this all happened within a minute of us waking, at this point we were on the phone calling 999 for an ambulance. Her body then went into a seizure and she was convulsing and foaming at the mouth. The person at the other end said an ambulance was on the way and said she would stay on the line until it had arrived. She gave us instructions that now looking back I cannot remember what they were, but just to check if Charlotte was breathing ok and told us not to move her or shake her.

It seemed like an eternity for the ambulance to arrive but in reality it was probably just 6 or 7 minutes. There was a couple of inches snow on the ground outside and when they arrived they rushed upstairs. At this point Charlotte had stopped convulsing and was wimpering and in a floppy state.

I truly thought we were losing her. We had no idea what had just happened and what was happening now. The ambulance staff were great, they asked us for a pillow case and they stripped Charlotte down to her nappy and then asked for a dampened cloth. Charlottes temperature was 39.5 degrees and I was then starting to understand that this fit must have been related to her high temperature.

By the time they placed Charlotte into the pillow case to take her outside she had started to scream very loudly, her body was going stiff and she was very disturbed. I got into the ambulance with her and it was to be my second trip in an ambulance with flashing lights and sirens, our little girl that was in trouble. I was so scared. I held onto her tightly as she continued to scream.

We were at Frimley Park Hospital within minutes and then taken into A&E. The doctors were very calm and explained that it appeared that Charlotte had had a convulsion due to her temperature. "It is quite common in babies" they explained. We were relieved but Charlotte was still not herself and she was not focusing on anything and was very sleepy. This they said was normal.

Due to Charlottes history she was taken to F1 Childrens ward again, where in the afternoon she nearly had a repeat seizure. All of a sudden, Charlotte became very blotchy and her lips turned blue, as if she was freezing cold. In reality when the nurses arrived her temperature was soaring again.

The doctors explained they would keep Charlotte in until they knew what had caused the seizure. They were concerned that it may have something to do with her brain injury. As it transpires, Charlotte had a water infection and this is what had caused her temperature to soar so quickly.

Charlotte stayed in hospital a couple of days and is now back to her happy bubbly self. If only she knew how scared we were, but she is yet again oblivious to that fact.

Charlotte is a little toughie

Boxing Day

A new photo section covering August-November was added last week .

Charlotte is doing very well and is cold free for the first time since starting Nursery in October.She has quickly put back the weight she lost whilst ill as she seems to be eating for the whole of Team GB now but is still probably just under 20 lbs.

She also gave us a special present on Xmas Eve. We took her to a very nice old local pub, the White Lion in Yateley and totally out of the blue she suddenly decided she was fed up with us putting the water jug in her mouth and decided she would be clever and grab the handle put it in her mouth and try to drink from it. She has suddenly started showing signs of wanting to drink and feed herself. She also now shakes her head vigorously if she is full and we try to give her another spoonfull and bangs her hands on the table if we are not quick enough in givng her more food. The Doctor had asked if she was aware when she is hungry, there is no doubt Piglet Low is very aware when her belly is dangerously empty and enjoys her food. If you even let her see a biscuit her face lights up and her hand immediately launches a first strike at it.

We did not have a great xmas last year as she was only 8 lbs and very sick with the water on the brain and would just lie in her moses basket but this year we have a very different, active, happy and vocal/communicative baby whom we can play with, we never dreamed she would be doing so well a year on and its really great . Our next aim is to get her crawling, hopefully by the summer.

Merry Xmas and happy New Year to you all.

Tuesday 23rd

Charlotte had an appointment with a Paediatrician at Frimley Park. She had been referred by her consultant Dr Malik because of the Physio's belief that Charlotte may have a mild form of Cerebral Palsy due to her 2 clusters of brain cysts. He has told us that he cannot see any obvious signs, but to be fair the Physio does spend much more time with her. She is certainly very bright and alert but does need help with her movement.

The Asian Paediatrician,just made comments like, she may or may not have learning difficulties, may or may not need special shoes to help her walk etc etc and that we should accept she will not be normal. She also said Charlotte is 7-9 months developmentally (she is 17 months old).

Either her grasp of English is not very good or she is very tactless and we do not accept that she will not be normal and are unhappy that she used that word, after all what is "normal". All the people whom have seen her have agreed that it really is too early to tell , especially when she is continuing to progress and they are pleased with her. She has come on leaps and bounds the last 6-8 weeks especially with her sitting,grasping and general movement. She is one really determined girl and although she has been late reaching every milestone and probably had to work harder tahn many to get there, the important thing is, she HAS got there in the end.

Monday 22nd

It was Christmas Party Day at Nursery today. Now Charlotte's appetite has returned there was no stopping her. When I went to pick her up at the end of the day her nursery nurse Candice advised me not to give her much tea. Apparently at the afternoon Christmas tea party she had munched her way through several potato wedges, various sandwiches and cake and in the end after Charlotte was pulling the tray towards her and away from other children they started to get worried that she may be sick from being so greedy so they had to take it from her.

What has happened to her. Only a week ago she was shaking her head vigorously and refusing her food and we were beginning to worry that there was a real problem but now a week on she is eating us out of house and home. She is also happier than she has been for ages and is without a cold for pretty much the first time since starting Nursery October 5th. "Piglet" Low is back. !!!!

She also met Santa Claus for the first time today. She just stared in wonder at him and loved it. It was obvious that when I went to pick her up she gave me a look as if to say "oh, your here then". Almost as if she was having such a good time she wanted to stay. Anyway, back home, Candice was right, Charlotte was totally stuffed and could only manage a yoghurt for tea. But within a couple of hours, her appetite was back and she downed a full 8 ounces of milk before collapsing in dads arms asleep. Its so tough being Charlotte

Saturday 20th

We originally only intended to cover charlotte's 1st 12 months on the Website, but were touched by the number of people who continue to show an interest, and have decided to continue with her story. There are some photo's from her thanksgiving and 1st Homecoming anniversary party. she is 17 months old and still in 6-9 months clothes although length wise she is 12 plus.

Charlotte has been doing really well since her illness last week. she is really happy again and eating very well. She has finally moved on from Formula to cow's milk,from liquidised to mashed foods, her favourite being fish fingers and beans. Yesterday she enjoyed a full mashed roast turkey dinner with all the trimmings which she really enjoyed. She also loves munching on her Organix orange soft rusks and earlier had one in each hand. As little as 6 weeks ago she had real problems with her coordination and general motor movements, not even being able to get the dummy or finger food in her mouth but she has made fantastic progress in the last few weeks and it is second nature to her now.

Her Physio came for a home visit in the week and remarked how pleased she is with her continued progress, it does not matter how long she takes to reach a milestone as long as she continues to progress. The next thing is to work on her crawling which we are hoping she will manage by our wedding next summer, and then hopefully walking by next Xmas. .

Saturday 6th

Charlotte has pretty much recovered from her chest infection and came home lunchtime. She will need to continue with her antibiotics for a few more days as she still has a slight cough but it is much better. It will be great to both have her home tonight and also not have to spend another sleepless night on the ward, in a put up bed by her cot.

It is not uncommon for premature babies who were on oxygen for so long to need it during again their first year or two ,if they catch a very bad cold, but it is something they will grow out of. Charlotte had been coping with winter colds very well, this was just a particularly nasty chest infection and she was only back in Hospital on Oxygen for 3 days and 4 nights whilst the antibiotics did their work.

Friday 5th

Charlotte came off oxygen around midday but needs to be clear all day and overnight before she is allowed home. The chest infection is much better. We have been taking it in turns to sleep beside her at night, although not much sleep is had by either of us. She tends to have coughing fits throughout the night which wakes and upsets her and it is also pretty noisy on the ward. We hope to be able to bring her home tomorrow.

Thursday 4th

c came off Oxygen for yesterday afternoon for a while but had to be put back on it 11 pm until around 11:30 this morning. It was disappointing as we had hoped she would be home today. They did try her off it again this morning but she had to go back on after only a short while. Her temperature is back to normal and the cough is better but she has not fully recovered from the chest infection and her having trouble breathing normally means she still requires oxygen via a nasal tube.

Her oxygen levels have tended to drop more, and fall below 90 on the sats monitor,when she is in a deeep sleep so she needs to really be off oxygen all day and overnight before she can come home. We hope this will be soon.

Wednesday 3rd

Charlotte is back at Frimley Park Hospital, her first visit since coming home last October, for a short unplanned stay. It feels strange walking past the SCBU unit to the ward. She has had colds and a cough on and off since starting Nursery in Oct but has coped with them fine. She did however develop a particularly nasty cough over sunday night and a temperature, both of which worsened considerably yesterday evening, with her temperature reaching 39/40 and the cough was non stop so we drove her to A&E. They suspect she also has a chest infection.

After waiting for various examinations and chest x-rays she was finally admitted to the ward at around 2 am this morning. She has been given various medicines and antibiotics which have helped bring her temperature down to 38 but she is still poorly and has the nasty cough. She had to go back on oxygen last night as her oxygen levels are too low, we had noticed she has been having trouble breathing at times. They are not sure if it is a viral or bacterial infection but she is in the best place possible and we hope to have her home, if not tomorrow then within a few days.

Thursday 13th

Charlotte visited her physio-therapist today who was really excited to see that she is now sitting. She does still arch her back and throw herself backwards. This isn’t now because she loses her balance, it is because she just gets lazy and as she knows there are pillows there it’s a nice soft landing. Anyway, we are sure she will grow out of that.

The physio thought Charlotte was doing really well. She does however still think that Charlotte has a mild form of “Athetoid Cerebral Palsy”. It’s difficult for her to really diagnose which form of CP she has but she does feel there is something there. It might explain some of her movements mainly the occasional head nodding and sometimes jerky arm movements.

So, what does this mean? She thinks she will get there with longterm physio and a lot of help, she is confident Charlotte will walk but is unlikely to be a gymnast and may appear a clumsy child. However, it is such early days it is really difficult to tell us anything right now. She said she thinks Charlotte is a really determined child and that she may not do it like most other children but she will find a way of achieving what she needs to in life.

All we know is that Charlotte is progressing and if she continues to do so then we are happy. She has already achieved so much in her short little life. She is 16 months old and still in 6-9 months clothes but like everything she is catching up, slowly but surely.