15Nov07 – Advance Clinic 6 Day 4

Lucy had not really improved much over night and her cough had become worse. She was also wheezing a little which is cause for concern. However she did manage to eat her breakfast so at least her appetite is still there. We were considered taking her back to the doctor in East Grinstead again but decided in the end that the best thing to do would be just to get her home so that if she does need any further treatment we will be in the right place. She certainly wasn’t bad enough to think about taking her back to hospital but you never know how things will progress and the last thing we want is to be stuck away from home with Lucy in hospital. I had to go into London this afternoon for work so we decided to pack up and go after Lucy’s supper. When we got to the Advance Clinic and explained what we were going to do they suggested doing an extra therapy session in the afternoon to cover what we would have done on Friday which seemed like a good idea. We both did the morning session after which Dawn dropped me off at Gatwick to get a train into London and then she went back to the clinic for the afternoon.
Today was all about making sure we knew the exercises, so this morning we repeated them over and over on each other to make them stick. I also took photographs of all the positions as a reference for when we are back at home and these are just a few of them.


We were able to do this with Lucy because she was fast asleep and the therapist was the hand model for all the positions. We have been practising on adult bodies and it was important to see the same positions on Lucy’s tiny little body. In the afternoon they made a video of the exercises with commentary to explain each step. We should have enough backup now to see us through to the next session which will hopefully be in February. The next time we come they will photograph Lucy and compare these with previous photos to see what developments and changes there may have been to her structure and posture. These changes happen very gradually and are sometimes only slight but it is always surprising to see what affect the exercises have. It makes all the hard work worthwhile to know that what we are doing is making a difference.
When I got back Dawn had already packed all our stuff and was giving Lucy her supper. Mary and Rachel had a last cuddle with Lucy before we bundled her in the car and headed back round the M25 and up the M1.I am writing this from the car somewhere on the M25 hoping to be home before midnight, listening to Lucy complaining in the back and waiting for my turn to drive. It has not been a typical week at the Advance Clinic but we have got what we came for, really enjoyed staying with Mary and Rachel and as soon as Lucy is back to herself we can start putting in to practice what we have learnt.

14Nov07 - Advance Clinic 6 Day 3

Lucy was still fairly groggy this morning when she woke up. She now has a really nasty cough which made breakfast quite a challenge. Before her breakfast she had a whole bowl full of syringes containing various medicines to consume. She managed all of them without splattering me too much but the weetabix was a different matter. We are used to not getting fully dressed until after she has been fed so a little pebble dashing is no big deal. We were just pleased that she had eaten well, taken all her medicine and kept it down.

We decided to do the same as yesterday at the Scotson Advance Centre (www.advancecentre.org.uk) and only practice the new exercises on each other and let Lucy relax. We also made the decision to cancel the oxygen chamber for the rest of the week because Lucy is really not up to it. She has this wheezy cough and sore ears, so it is not worth the risk of making things worse. It is a shame she will miss it as she won't get another chance until February or later.

The therapy exercises seem to get increasingly complicated and this time we have four separate sets of exercises to learn. We will combine them and alternate between different combinations month by month until our next session. After three days we have been shown and practiced all four sets of exercises which mainly concentrate on strengthening the lungs and abdomen. The exercises involve applying and releasing gentle pressure with the fingers on various areas and positions on Lucy's torso and abdomen, front and back, to stimulate blood flow to the outer capillaries. In this way oxygen is carried to parts of Lucy's body that do not normally receive it hopefully stimulating increased activity. The next two days will be spent practicing and perfecting each exercises so that we can do them all at home without help. It is good that we have both been able to come this time as we should be able to help each other remember all the various permutations and finger positions.

Lucy remained unwell and sleepy most of today but did manage to eat OK which is a good sign. It will probably be another couple of days before she starts to recover fully so at the moment we are not too concerned but just need to keep an eye on her chest and make sure that the cough does not get any worse. We will probably not do the exercises on her for the rest of the week and start on her next week when she is back to normal.

13Nov07 – Advance Clinic 6 Day 2

Unfortunately Lucy's latest medicinal cocktail did not quite have the desired affect and we woke at 3:30 this morning to find that we had another fit on our hands. This time it was almost certainly caused by a combination of temperature and infection. We waited a few minutes to be certain that it was definitely a fit before administering the rescue dose of Midazolam. We then waited a further five minutes for it to take affect and when this didn’t happen we called an ambulance. This is becoming a familiar routine just like the monthly big shop. The ambulance arrived about 10 mins later and by this time Lucy was showing signs that the midazolam had started to work because she was certainly more relaxed. However it was decided to take her to East Surrey Hospital A&E to get her checked out. I followed in the car and arrived not long after the ambulance to find the usual state of affairs in full progress.Lucy was hooked up to all the monitors, the Paediatrician was struggling with the first cannula (which failed) and bloods were being taken. It was all very calm and familiar. The fit was certainly not as bad as the previous two but they were not convinced that Lucy had stopped fitting so administered half a dose of Lorazepam just to be sure. Lucy also had to have a paracetamol suppository to control her temperature.The people that dealt with Lucy were excellent and really made us feel at ease. When they realised that Lucy had cerebral palsy they immediately looked to us to describe what Lucy’s normal is. They listened carefully and I believe treated Lucy accordingly. They were initially concerned how stiff Lucy was and could have interpreted this as symptomatic of continued fitting but discounted this when we explained that Lucy has high muscle tone and is naturally quite stiff in her arms and legs. This probably saved Lucy from an unnecessarily high dose of Lorazepam which would have completely knocked her out and meant a couple of days in a strange hospital. We were both particularly impressed with the Paediatrician. I was asked to help lift Lucy so the nurse could take her temperature and as I lifted her, Lucy immediately stiffened in response to her discomfort. This type of movement is easy for Dawn and me to interpret but not for people who do not know Lucy. The Paediatrician immediately said it was purposeful movement which indicated to her that Lucy was no longer fitting. We didn’t say anything at the time but I can’t remember anyone else in her position ever being so intuitive or understanding of Lucy’s unique way of communicating. In these situations we always have to explain what Lucy is like and in most cases we feel that the professionals do not really listen and draw their own conclusions, so it becomes a bit of a battle between us and them to ensure Lucy gets the right treatment. However today we suffered none of this anxiety because the A&E team listened and immediately switched on to Lucy’s individual circumstances.They were sensitive and sensible in the way they delivered their treatment, not afraid to treat Lucy as an individual with her own ways and unique circumstances. I wish more hospitals could have the same quality of staff who are able to see past the CP tag. I am sure they could tell that we were not too concerned having been through it a number of times and therefore were happy to send us home after a monitoring Lucy for a couple of hours. I was convinced we were going to be stuck there for the rest of the week and it was such a relief to get back in the car at 7:00 am.

Although we only had a few hours sleep, we decided to go to our session at the Scotson Advance Clinic (www.advancecentre.org.uk) today. We needed to learn the exercises as they are quite complicated this time and it is a very long way to come back. We gave Lucy the day off and practiced the exercises on ourselves which was actually a very good way of learning them but it was quite difficult to stay awake lying on the therapy bench. We decided it wasn’t sensible to take Lucy in the oxygen chamber today and just let her sleep. She has slept most of the day only waking briefly to be given her medicine. She should come round tomorrow though, as the effects of the Midazolam and Lorazepam wear off.

My cousin Rachel cheered us up tonight by making us a special cake,which was a really nice way to end a pretty exhausting day.

12Nov07 - Advance Clinic 6 Day 1

We travelled down to Surrey yesterday as this week we will be at the Scotson Advance Centre in East Grinstead with Lucy. We are fortunate to be able to stay with my Aunt who only lives 20 mins drive from the clinic. Lucy has out grown her travel cot so she has to sleep on an old matress on the floor which actually looked quite comfortable.Lucy has not been herself for the last couple of days and we have suspected that she has been brewing something. She has been tense and uncomfortable and as a result, hardly slept last night. We kept checking on her all night just to make sure she was ok and not having a fit.

When we got to the clinic this morning Dawn arranged for an appointment at a local surgery to get Lucy checked out. Initially they refused to see Lucy and Dawn had to go through the hassle of explaining that we were not resident in East Grinstead and that our temporary address was also not in East Grinstead but we really needed to get Lucy checked out. Finally the jobs worths agreed to see Lucy and gave us an emergency appointment. However it did mean that we had to cut the morning therapy session short to take her.We managed to learn the first few excercises before we had to rush off for our 10:30 appointment.It turns out that Lucy has an ear infection and also the doctor could hear something on one of her lungs so prescribed anti-biotics (amoxicillin). By the time we got back to the clinic it was time to feed Lucy before taking her in the oxygen chamber for hyperbaric oxygen therapy. We had asked the doctor whether we should take her in the chamber and he had suggested that it should be ok and to see how she coped with it. We decided it was worth it considering the effort to get here and if she had shown any real signs of distress we would have got her straight out. I took her in the large chamber which involves Lucy wearing a sealed hood which is fed with 100% oxygen.It has a rubber seal which is quite difficult to put on without pulling her hair but we did manage ok this time. Lucy is in the chamber for an hour and during this time the pressure inside is varied to make the lungs work harder and to increase the oxygen absorbtion in the bloodstream. The purpose of this therapy is to help address issues caused by lack of oxygen, oxygen starvation and a weak respiratory system by increasing oxygen concentration in the blood stream.Unfortunately for Lucy it means she has to be an uncomfortable space cowgirl for an hour every day this week and one of her unfortunate parents will have to hold her squirming, arching complaining little body in a claustrophobic decompression chamber for the same amount of time. The worst bit for Lucy is getting the hood back off again because it always pulls her hair which gives her the perfect excuse to scream the place down for the next ten minutues.

After the oxygen therapy we were able to catch up on learning the therapy excercises that we missed in the morning which meant we didn't really miss anything. Lucy coped quite well with today but she is obviously not too well. Hopefully the cocktail of medicines she is now taking will kick in and she will have a good day tomorrow.

09Nov07 - Fun Friday

The school bus dropped Lucy off at her friend Laila's house today because Dawn had spent the morning drinking coffee and chatting with her mum Hayley. After a quick feed Lucy and Dawn rushed around town before picking Joshua up from school in time to be home for a visit from Sam, Bethany and Eloise of "Fairenuff" (http://fairenuff-familypficblog.blogspot.com) fame, who came round for tea. While the kids played happily, Joshua revelling in the attention from Bethany and Eloise, I warmed up some pizzas. It was lovely to see Bethany and Eloise playing so naturally with Lucy.They worked up a decent appetite and made short work of the pizzas. For once Joshua was shamed into eating the crusts of his pizza because Bethany and Eloise were eating theirs. Peer pressure from a 4 year old and a 2 year old.......brilliant!Lucy was content and relaxed the whole time the girls were her. She just loves the noise and commotion of other children playing around her.

08Nov07 - LGI Revisited

We returned to Leeds General Infirmary today for the first time since 11th July 2004 when Lucy was transferred back to Dewsbury Hospital. Lucy had an appointment with an Orthopaedic specialist to check on developments with her hips. Dawn felt it first but walking towards the hospital entrance was uncomfortable for both of us. We had done this day after day after day with Lucy lying unconscious and seriously ill in the childrens intensive care unit. It was like travelling back in time, the same long empty, impersonal corridors, the same hospital smells and sounds. I thought of the children upstairs and their parents just starting their journey into the unknown. As we passed the MRI unit I thought of waiting for Lucy's results and then being told in the "quiet room" that our daughter had cerebral palsy, was quadriplegic, had severe developmental problems and probably would never walk or talk.

By the time we had found our way to the childrens' outpatients clinic we were both feeling a bit low and then we were met by a room packed full of very well looking children and parents waiting for their appointments. We both looked at each other and thought the same thing, "Oh no, this is just what we need!". After scanning the room I discovered we were not the only non-mainstream family and once we found a quiet corner to sit in it was actually fine. We didn't have to wait too long before they sent us off to get Lucy's hips x-rayed. Probably due to her high muscle tone, Lucy's hips have gradually come away from their sockets and are now permanently dislocated. The x-ray was to check how this had developed in the last year as some of Lucy's physiotherapists were concerned that she may be suffering some discomfort. Lucy was very good for the x-ray and the radiologist managed to get the shot first time.The x-ray really just confirmed what we already knew, that both hips are out and the hip sockets have not formed correctly as a result. The Orthopaedic specialist we saw was a man called Peter Templeton. I would not normally put someones name here but he was absolutely brilliant. He treated us with a sensitivity that I have not experienced before from consultants and specialists in his position and he showed real compassion in the way he offered information and advice. We had already come to our own decision that the only reason to put Lucy through major surgery would be if she was sufferring pain in her hips or became difficult to deal with if she stiffened up too much. He agreed with us explaining that to reconstruct both sockets and reconnect the hips would involve two lots of major surgery and the benefit would not really be worth it. Firstly it is very unlikely that Lucy will walk and secondly the hips would probably just work their way out again. So we left it that he will review her in eighteen months and we will only think about surgery if Lucy starts to experience a lot of discomfort and pain.

After it was all over I was very glad to get back in the car and drive away with Lucy in the car. I didn't have to leave her behind today and it felt great.

07Nov07 - Adaption

Adapting your home is the last thing you think about when you find out your baby is going to have disabilities and when the time comes round it is difficult to accept. In a way we are fortunate that Lucy's therapists were very switched on to her future needs and how the adaption grant system works because although it is a lengthy process, it is happening a lot sooner than perhaps it otherwise would without their help. The whole process has been very efficient and almost clinical. Although it is all for Lucy's benefit and we will not have to contribute towards the cost, I have always felt very negative about it. It is horrible walking around your home with strangers, being told how it will have to change and all the equipment that will have to be installed. The adaption process reinforces and highlights how different your life is going to be and how your choices are gradually taken away. You have to listen to comments like "when Lucy is older she will need this", "when she is bigger she will need that", "it is going to get more difficult to change her so you need this". I guess comments like this are realistic and need to be said but I can only liken it to a mechanic sucking wind and telling you what a difficult job your car is going to be. The whole focus is purely on the disabled family member forgetting that the rest of the family will all be affected. It is not the inconvenience or the damage to your home that hurts, it is the impending life change that you are forced to confront, the same life change that you have being trying to deny for as long as possible. I have found each visit and meeting an emotional tormoil even when I was not there and feel angry and bitter that we have to do this at all. I know in the future we will probably be glad of the adaption but I never expected it to happen so soon. To me Lucy is still a baby and I want that feeling to last as long as possible because in the back of my mind I know that as she gets older and bigger everything we do with her will be that much more difficult. Adaption suddenly fast fowards your thinking and makes you look into the future. Conversations about future needs and problems are conducted in a matter of fact way and you join in not realising until later how sad it makes you feel. I certainly wasn't prepared for all of this and the feelings that it brought. Getting the go ahead and the grant approval was the least of my concerns.

We had someone at the house today taking measurements and deciding where and how to position all the equipment. It is very different from redecorating or rearranging your lounge furniture. We are turning Joshua's sanctuary, a perfectly good playroom full of toys and computer games into the "Lucy Ward".She will have a wet area with shower table and basin, hoist with tracking on the ceiling and a special bed. We will have to find lots of pink fuzzy stuff to make it feel more like a bedroom and convince Joshua to part with half of his old toys. Everything is approved now and it is just a matter of time before they start work whether we like it or not. I know that it has to happen no matter where we live but I can't imagine how difficult it will be now if we ever want to move house!

04Nov07 - Play Day Pics

I was sent the pictures from Lucy's school play day and her first school trip on the 23rd and 24th of October. The first day was an activity play day at the school. Lucy spent time in the sensory room, did rebound therapy and hydrotherapy.Lucy looking adoringly into the eyes of the Rebound Therapist, what a flirt!The next day was Lucy's first school trip to Harewood house near Leeds where they did a scarecrow hunt and went in the planeterium. Of course the matching pink scarecrow was planned.Lucy's best friend Laila was also on the trip and they always get pushed around as if they were twins which is lovely. They are so sweet now but I dread to think what they will be like when they are teenagers!Thanks to Fairfield School for arranging two wonderful days and a special thank you to Sammi their brilliant Family Liason Officer who climbed an IT Everest to send us these photos.

03Nov07 - Fireworks

I took Lucy and Joshua to see their Granny and Grandad today. They always enjoy themselves and get plenty of attention. It was lovely when we arrived because when Lucy was on top form and was full of smiles when she saw her Granny. She obviously recognised where she was. As usual we were well fed and had a nice relaxing day. Lucy and Joshua were taken on a long walk while I went shopping and then Joshua got to play Simpsons monopoly with Granny. She is a real saint! Lucy was happy all day making lots of little noises and giving us lots of smiles. We decided to stay for a bonfire night at the local church and it was great to see Lucy reacting to all the flashes and bangs.She sat watching the fireworks for a long time before starting to get restless. Joshua covered her ears when the bangs got too loud although I am sure she didn't mind them.Afterwards we stood around the bonfire eating hotdogs and parkin. It got quite late for Lucy and she decided it was time to go. You can tell when she has had enough because she starts squirming and complaining as if to say, "I'm tired/bored and I want to go home". I think all kids are the same.It was a really nice to get her out somewhere she could enjoy it as much as we did.

02Nov07 - Quiz for Lucy

"Quiz for Lucy" was organised by the lovely people of St. Saviours Church, Birstall, West Yorkshire. They wanted to raise money for Lucy's treatment at the Scotson Advance Clinic (www.advancecentre.org.uk). The quiz took place in the church hall which was packed full of people who had come to support Lucy. It started at 6:00pm so we took Lucy with us and I think she enjoyed it. She always manages to get lots of attention which of course she loves. It was really enjoyable evening and it made us all feel quite special that so many people came.It is quite humbling when people selflessly offer their support for Lucy and it is difficult to know what to say when things like this just happen out of the blue. However I can say that I feel very privileged to be part of the St. Saviours family. It always surprises me how easy it is for Lucy to touch people and how so many people both friends and strangers have been moved to want to do something for her. Since Lucy has been part of our lives I have experienced many human traits like prejudice, ignorance and intolerance but what I didn't really expect was so much love, care and selflessness. It is the latter that really stand out and provide us much needed support and inspiration. Thank you so much to everyone at St. Saviours, not only for raising money for Lucy but also for putting your friendly arm around our family.