This afternoon Lucy and Josh went to play with Bethany and Eloise. Dawn collected our tickets for their fund raising event on Staurday night. They are trying to raise money for a soft play area for BethanyI managed to get away from my meeting in London early and got back in time to meet Dawn, Lucy and Joshua at the Airedale Heifer pub where Tim has been doing all the fund raising for us. I took photos of the guys handing over a big cheque to Dawn and hopefully it will be in the paper next week. Over the last year Tim and the Airedale Heifer have raised £2000 for Lucy which has paid for 2 full weeks at the Scotson Advance Clinic. I can only reiterate what I said in my last blog, it is overwhelming to find such amazing, unexpected support. We get so used to hearing how bad the world is in the media. Every negative trait of mankind can be seen in the papers everyday and you become accustomed to it. However, it is people like Tim and all the people involved at the Airedale Heifer who show us the very best of human nature and restore our faith in society through their selflessness, genuine kindness and generosity. Lucy is so lucky to have such good friends.
Friday, 28 September 2007
Home again after 3 days in the Netherlands. It was great to get home and see the scamps again. Lucy was sleeping peacefully by the time I got home but Josh had persuaded Dawn that he could stay up to see me which was nice. I’m not sure if that was his real intention, more likely he was hoping that I had brought him something. I don’t mind that though because I would have been just the same. Dawn has not stopped all week with something on just about every morning, afternoon and evening. Tomorrow is no different for her with a coffee morning at Lucy’s school, an appointment with wheelchair services and this evening she is meeting up with Lucy’s godmother’s partner who has been fund raising for Lucy. Tim has really been touched by Lucy and took it upon himself to do something positive for her. Last year he arranged a charity football match on Boxing Day which paid for a week at the Scotson Clinic. Dawn is going to meet him tonight to be presented with another cheque from the latest fund raising and have a photo taken for the newspaper. The money will really help us with Lucy’s treatment but what helps more is just having people like Tim around us. It is like having a guardian angel. The selfless care and support is so humbling and makes us feel blessed to be involved in Lucy’s life. She has a way of effortlessly getting straight to peoples hearts and what she finds when she gets there is all the very best human qualities. Thank you Tim for everything.
Tuesday, 25 September 2007
I am out of touch today, haven't seen or heard how today went. It is times like these when I wish life could be just a little simpler. A nice easy 9 to 5 job, play with the kids, bathtime, bedtime, white picket fences etc, etc. Pie and sky comes to mind. I know Lucy and particularly Josh cope very well with our upside down life. We try to maintain some kind of routine and have always known how important it is. Lucy from the first day she came home has had the same routine that Josh had at the same age, a regular bath time, Dad/Mum time and bed time. Although it can be a bind at times, especially after a hard day, it is very special and I do miss it when I am away. I am sure it is no different for anybody with small children. With Josh we only had to put up with a few days/a couple of weeks before he realised what bedtime was. With Lucy it took so much longer. For months her body clock was the complete opposite to ours. I can remember being at the end of my tether one night when it was my turn to go without sleep. It was around midnight and Lucy had been crying non stop since going to bed. I had tried cuddling her, singing to her, walking round the house, lights on, lights off and nothing had worked. So I tried the old trick of putting her in the car to drive her around until she fell asleep. She was only 3 or 4 months old. I drove and drove and she cried and cried. Eventually after driving around for about 45 minutes I found myself in Huddersfield. Lucy had not stopped crying and she had cried so much that she had made herself sick. I stopped the car, got out and burst into tears. At the time I could not see an end to it, all normality had disappeared and the future was not somewhere I wanted to go. We were still trying to come to terms with the previous few weeks and the torment seemed endless. I sat on the kerb for a while until I felt stupid and then cleaned Lucy up and drove home. She never did stop crying. But, and I think it is a big but, together Dawn and I stuck with the routine. We spent long nights for some months after that listening to Lucy cry. We didn't want to treat her any differently to the way we treated Josh even though we worried that she would always be different. Eventually there were some nights when she cried herself to sleep and over time they became more frequent. Now Lucy knows when her bedtime is. She doesn't always agree and quite often complains just like any 3 year old would. In fact it makes me smile listening to her sometimes because she has learnt a few different cries. The best one is when she is crying just to get you to go and see her. It starts as a whimper and gradually gets louder and louder the more she thinks she is being ignored. As soon as you open her bedroom door or she hears you coming the crying stops. Quite often she will then talk to you in her own way either to let you know how unhappy she is or to say "I am bored, I can't go to sleep and I just want some company". She is such a character and I am sure she gets it from her brother. I missed bed time tonight. Dawn had to sort them both out so I hope they didn't cause too much mischief. I guess those early months were just something we had to get through but I wouldn't change it. Lucy has given us the strength to deal with most things that life throws at us and we now have a completely different outlook. I know I can speak for Dawn as well, we really appreciate what we have now and wouldn't turn the clocks back for anything.
Monday, 24 September 2007
Lucy has been a bit off it for couple of days now. I don't know if she is just uncomfortable or still has sore arms and legs from all the injections and cannulas. She grumbled all the way to school but did seem to relax once she got there. Lucy gets a little note in her school "Contact Book" every day. The Contact Book is really good way of keeping us involved and letting us know what is going on at school. It also gives us a good idea when Lucy has had a good day and when she is not feeling too good. The very first line in the book is "WHAT A STAR! Lucy has been brilliant on her first day at school", which was excellent to read and reinforced what a good decision it was to send Lucy to Fairfield School. Today at the end of the note was one sentence which made me smile, "Lucy has enjoyed having a big cuddle towards the end of the morning session." She is very good at getting what she wants. How many schools can you go to where you get a big cuddle when you're not feeling too good? Lucy says thank you Fairfields for being absolutely brilliant. When we picked her up from nursery this evening we heard that when the bus dropped her off the escort just said she had been crying all the way there. Lucy had probably been on the bus for 1 1/2 hours which would have been enough to make me cry! It wasn't so bad when we knew she was sitting happily on the bus and falling asleep but I don't like to think of her unhappy for so long without anybody who really knows her. I guess we will have to monitor it and see how it goes. I have a busy time at work this week so Dawn is going to be left to do everything. Unfortunately it can't be avoided but I had a word with Josh this evening and I am sure he will be the responsible, helpful big brother. We have got quite a nice weekend to look forward to. We are going to a fund raising event for Bethany's soft play area on Saturday night which will give me and Dawn some more selfish time, Yay!
Sunday, 23 September 2007
Saturday was a bit of a wash out and we just lazed around most of the day. Fortunately Granny was here to get Lucy up which meant we could have a nice lie in. Lucy was tense and uncomfortable for a lot of the day and was the same today. She has not slept at all during the day which is a little unusual. We took the kids to church this morning to see an old friend which was nice. Lucy squirmed and arched through most of the service and Joshua as usual joined in with whatever he could. He was more hesitant than normal but I think he is getting to the age where he is becoming more self conscious. After the service we went to my parents for lunch. It is a real treat because we don't often get to eat such good food. Granny also helped with feeding Lucy which is always a bonus. We had a nice relaxing afternoon, Dawn dozing in the chair, Josh doing his homework and the rest of us watching rugby. We got back in time to do feeding time and bath time. I washed Lucy's hair which is such a mission these days. She is just so awkward to hold with one arm whilst trying to wash/rinse with the other arm. At the end of it you feel like your back is going to split in two. Drying it is just as bad but when its finished it looks fab and it feels like it was worthwhile....."cause she's worth it".
I can't imagine what its going to be like when she is bigger, maybe she will have to go for the Sinead O'Conner look...only joking.
Saturday, 22 September 2007
After spending so much time in Hospital at the beginning of the week it was strange go to work in London on Thursday. It felt odd not talking about Lucy, blood tests, IV's etc and instead talking about software, vertical integration, strategic partnerships etc. A couple of people asked how Lucy was and I just gave the stock reply, "She's fine thanks" which generally satisfies most people and stops any further uncomfortable questions especially if Lucy is not known to them. Most of the time the people asking the question would not want to hear the real answer, although it would be fun to pick on someone some time and really go into detail just to see the reaction. Maybe I am being unfair because there are plenty of people who are genuinely interested. It is also true that the majority of the time I don't want to discuss it.
Dawn took Lucy back to school on Friday morning but decided to stay with her just to keep an eye on her. She said she really enjoyed getting involved and once again she was made to feel really welcome. Lucy started off in the sensory corner and tactile play. She then went in the pea pod for a quick spin before snacktime. At playtime they had wet play because it was raining and so they got to watch a bit of TV. It was swimming day but Lucy had her turn last week so instead she had one-to-one time which is really nice for her and she did some finger painting. They finished the morning with sensory storytime. Lucy and Laila had foot spas sitting side by side in little arm chairs while they listened to a story. Dawn said it was nice to see exactly what goes on and be part of it. The school staff really help with this and are glad to have you there. However being "part of it" is kind of a double edged sword as although you want to feel and be "part of it" there are still times when it feels so alien that you just want to run away from it. No matter how hard you try or how happy and positive you feel, it is still difficult to accept this very different normality. These feelings seldom come to the surface but when they do you feel guilty and hypocritical because then you might as well join the starers. You realise where you've come from and that you still have such a long way to go.
My parents came to babysit again so that Dawn and I could have some time together. We had a great time. We played squash which is a first for us although Dawn plays now and again. We really enjoyed it and if we can will try and do it more often. We didn't take it too serious and just had fun. Afterwards we had a quick supper, change and went to a couple of pubs for drinks ending up in our local for a lock in. We have not had such a laugh for ages. It was nice to park all the baggage for a few selfish hours and just be ourselves, perfect therapy.
Wednesday, 19 September 2007
Lucy has been a little sweety today, her spark has come back. She made my day this morning when the first time I spoke to her she gave me one of her best smiles, in fact she gave me two or three. Dawn has been with Lucy most of the day and she says that Lucy has been happy and smiley all day. Sunday seems a long time ago now. Dawn took Lucy to the hospital this morning to get the results of the infection tests and to get the cannula taken out. The results still hadn't come but the doctors were confident that they would be clear so they took the cannula out anyway to save Dawn having to go back. One of the doctors phoned in the afternoon to confirm that the tests were clear which means this episode is over. We are both pretty tired but happy that we can get back to normal. Dawn took Lucy to the Child Development Centre this afternoon to see Lucy's Play Therapist and adopted Aunty Debbie. Unfortunately Lucy doesn't get to see much of Debbie these days because as she now goes to school, she no longer goes to the Child Development Centre. Debbie is brilliant and really helped Lucy and Dawn in the first months. She always sees the positives in everything and is one those special people who can see beyond disabilities. She always treats Lucy like a normal little girl, not a little girl with cerebral palsy, just a normal little girl. Dawn always used to say that the sessions she spent with Debbie were the only times she felt normal herself. Dawn went to take some toys which had been bought with money raised by our niece's school. In July Dawn helped Becky with a school project about disability awareness. As part of Becky's project Dawn gave a talk to Becky's class about what life is really like caring for a child with cerebral palsy. Dawn did an excellent job, really engaged the whole class and actually enjoyed it at the same time. The class then decided that they wanted to raise some money so arranged a bake sale. They managed to raise £30 for the Play Therapy department. I am so proud of Dawn for doing the talk, she has a real gift for tackling our issues head on and never backing away from an opportunity to make things better.
Tuesday, 18 September 2007
Lucy had another good nights sleep. Dawn on the other hand kept on getting woken up by Lucys IV machine. The line kept blocking which makes the machine beep and it carries on beeping until a nurse comes to sort it out. It always takes ages for them to come so Dawn has been very tired all day. Lucy carried on feeding very well today so the IV was stopped this morning and when the ward round came I overplayed how well she was eating and that she was almost back to normal. This earned us enough credits to get our exit visa. So she is out..Yay!
We finally took her home at about 14:30 although she still has a cannula in her foot (just in case) and we have to go back tomorrow morning at 11:00 to get the final blood test results. We are pretty confident that the tests will be clear and they will take the cannula out then.
It is a big relief to be home. we even got the chance to go and look at a secondary school with Josh this evening. He sits the entrance exam in December. Hopefully now life can get back to normal.
Monday, 17 September 2007
Another long day at the hospital. Lucy was very sleepy last night although I did manage to get her to drink a little bit. Her third cannula failed at about 21:30 so it was taken out. We had noticed that every time anything went through it she became uncomfortable so it was nice for her not to have anything sticking in her for a while. The ward sister then announced that they would be putting another one in. Lucy had just calmed down and looked like she was ready to go to sleep for the night. I knew that it would be at least a couple of hours until they would have the time to do it because the ward was very busy and I had been told that they had four others to do first. I asked the sister if they could wait until the morning because she wasn't due her IV antibiotics until 14:00pm. She was nice about it but the Registrar still had to come in and try and convince me, but I managed to convince him. See Lucy's notes "Difficult father refused cannula" but I don't care, Lucy slept from 10:00pm until about 8:00am this morning which was just what she needed. It was just what I needed as well. I haven't had such a long sleep for months. Incidentally it was after 12:00pm before they put the new cannula in so I guess it wasn't that critical after all. Lucy had some weetabix for breakfast and then we finally got a chance to give her a bath and wash the remains of the vomit out of her hair. She smells a lot better now. She has been dressed all day but has still been very lethargic and slept most of the day which we think is down to the Lorazepam.
She did have some shepherds pie and yoghurt at about 16:30 and actually ate quite well although at times I wasn't sure wether she was awake or not. Its a very good sign that she is eating again. We know that you don't get your release papers signed until eating/drinking normally have been ticked off and when nasal feeds were mentioned on the ward round it was enough incentive to try Lucy with oral feeds. There is absolutely no way she is having a nasal tube. They never work very well and the stuff they put down it always disagrees with Lucy. The first blood tests came back OK, white cell count fairly low so not much chance of an infection. The chest x-ray was also clear and now we are just waiting for the infection blood tests which should be ready tomorrow but they are not expected to show anything. They are continuing with a low maintenance dose of Phenytoin which hopefully will not be for much longer. If Lucy follows the same pattern as last time she should start to come round and be more alert tomorrow. It certainly looks like she is over the worst of it, I just hope she doesn't wake up too much tonight for Dawn's sake. She has the short straw tonight sleeping on the fold up bed beside Lucy.
Sunday, 16 September 2007
I think I was tempting fate with yesterday's blog. We were woken this morning at 7:00am by grunting noises coming from Lucy's bedroom. She had been vomiting and was having a fit. At first we thought that she may have just been ill but soon realized that it was more serious. We gave her the rescue medicine (midazolam) we had been given after Lucy's last major fit at the beginning of July. This was supposed to control the convulsions within a few minutes and when it didn't we phoned 999. We were much more relaxed this time and it was not long before the ambulance arrived. Lucy was still having convulsions but they were less dramatic. The paramedics immediately decided to take her to A&E and two minutes later Dawn and Lucy were on their way to the hospital. Lucy had probably been fitting for between 30mins and an hour at this point but we can't say for sure. We also don't know what brings it on or whether the vomiting causes the fits or vica verca. I stayed behind to get Joshua up, explain what had happened, feed and dress him before following the girls to the hospital. When Lucy got to A&E the first job was to put in an intravenous cannula to take fluid and give medication. It is quite a difficult procedure especially in small children as their veins are small and tricky to find. As always the first one in her foot didn't work, so they put one in her left arm. This failed soon afterwards so they had to put one in her right arm as well. She is going to have very sore arms.
Lucy was still fitting so they administered a dose of Lorazepam which is a drug used for rapid sedation. The down side is that the sedation can be very prolonged. After waiting to see if this would do the trick they still suspected that Lucy was displaying irregular movement and so decided to load her with Phenytoin. This eventually did the trick and completely knocked her out. Last time she had a fit it took Lucy a good 24 hours to come round.
Joshua also had a major set back, his gameboy battery ran out just after we got there. He was brilliant though, very brave and very protective of his little sister.
After the A&E staff were happy that Lucy had stabilised she was transferred to childrens ward although there was some debate wether or not there were any spare beds. We were greeted with "Hello again" which tells you that you spend too much time there. Lucy was seen to very quickly and it wasn't long before the IV was giving her fluids and glucose. Blood samples have been sent away for testing and the result of the chest xray should be available this afternoon. She was given antibiotics to cover any possible infection and it was decided to keep her mildly sedated for the next couple of days. We are in for the long haul......again!
The timing of this could not be worse. We were supposed to be travelling to East Grinstead today and attending The Scotson Advance Clinic (see my blog from 14/09/07). I have booked time off work, my parents were going to look after Josh all week and we really needed to get back into the swing of the excercises after giving Lucy a break following her last fit. Obviously we will not be going this week and will have to try and rearrange everything. Instead we will be taking it in turns to sleep on a noisy children's ward, on a fold out bed with nurses coming and going all night. For the next few days at least one of us will have to be at the hospital 24 hours a day. Of course we will take it in turns but it means that normal life stops until Lucy comes home again. I am taking the first watch tonight so I better go and have a quick shower before I have to go and relieve Dawn. I will keep you updated of events over the next few days.
I have just been talking to a friend who doesn't know Lucy. He asked me what was wrong with her and we got talking about why Lucy is like she is. Looking back on those first days and weeks of Lucy's life is not something that I do too often but in a way I guess I should try to keep it fresh in my mind because it helps to put things into perspective. Lucy's birth is a blur of panic, emotion and a profound feeling of helplessness, and that will never change. The weeks that followed I would not wish on my worst enemies. What I remember most was a surreal feeling of existing in a completely alien world where there was no normality and you were told things on a daily basis that in any other situation would reduce you to an emotional wreck but somehow you just adjust. You accept bad...no terrible news as if you found out that your plane has been delayed for half an hour. You council family and friends who are not able to comprehend the seriousness of the situation with an air of calmness that is totally inappropriate. We became so used to receiving bad news that for a while it became a way of life. We accepted everything as long as we knew that Lucy wasn't going to die. At the first meeting we had with the consultant just a day or two after she was born we were told that Lucy would have some developmental problems but they put her in the"mild" category which meant she might have some physical difficulty with movement/coordination but she should be able to live a relatively normal life. How little did we know then. This in itself was hard to take because every parent wants to have a perfect child and can not bare to think of anything going wrong. We accepted this, because after all the trauma we had just been through it did not seem such a bad outcome. Of course we were upset and cried but we were strong and accepted it and looked forward to getting our little girl home. That was just the start. After a few days things got infinitely worse. As a result of the oxygen starvation that Lucy suffered (although the cause is disputed) she developed a bowel condition called Necrotizing Enterocolitis. The intestinal tissues becomes damaged due to lack of oxygen or blood flow. When feeding starts the bacteria from the food damages the tissue further and holes can develop in the intestine. This is an extremely serious, life threatening condition. So from having already come to terms with a less than perfect baby, fits, ventilators, birth trauma and the knowing looks of the neonatal staff, we suddenly, overnight had a much more serious situation on our hands. Lucy was transferred to the specialist ICU unit at Leeds Genereral Infirmary (on the day of Joshua's 7th birthday party which we missed) in an ambulance, lights, siren, everything. Lucy was a week old. In the end we stayed at Leeds General Infirmary (LGI) for weeks. It all seems like a blur now but at the time we lived ICU, doctors, consultants, neurologists, paediatricians day in day out. We watched monitors, helped with daily blood samples (Lucy's feet were like pin cushions) and all the time got regular updates of Lucy's progress or lack of it. Her abdomen was swollen and red with the infection. She was on a ventilator and a cocktail of drugs to keep her sedated. We regularly had to draw bright green bile from her stomach (some of her first cuddly toys have still got bile stains on them). The strange thing was how quickly we adapted to this totally alien environment. We just turned up every day, sat with Lucy, did what we could to help and conveyed what we could to our friends and family. I guess we always watered it down to make it easier for them to accept. On more tham one occassion people who came to visit were moved to tears by the shock of being introduced to a place that thankfully most people never have to experience. Lucy was heavily sedated, on a ventilator, had tubes all over the place and looked extremely ill. It must have been quite a shock to see such a small baby like that for the first time. We comforted them and helped them to understand what was going on but still for some it was too much to handle. There must be some kind of survival instinct that gave us the strength to detach from reality so that we could have the strength to cope during those unfortunate first weeks. I remember thinking I don't care about all this as long as I get to take her home. By the time she started having scans and the reality of Lucy's future outlook became apparent we had already been through so much that we had already accepted that life for us was going to be very different. So when we were finally told that Lucy was severely handicapped, all four limbs would be affected, she would never walk, her eyesight was likely to be impaired, it was unlikely she would talk, she had epilepsy, our feelings and emotions had been numbed to the point that it was not a massive shock. We knew at that point that she was out of danger, she was going to live and in the not too distant future we would be able to take her home. I don't know if we dealt with it in the right way but we had never had to deal with anything like this before. Maybe we we ignored our real feelings and emotions or maybe we didn't have a choice. Looking back now it doesn't seem real but I know there are people who at this moment are in that world, living the same things we were and I really feel for them. We were only one family of many but we were among the lucky ones. Not all the families we shared the ICU unit with got to take their children home.
Friday, 14 September 2007
Today was Lucy's last day at school until a week on Monday. On Sunday we are going down to the Scotson Advance Clinic (www.advancecentre.org.uk) in East Grinstead. We will be attending the clinic from Monday to Friday and it will be Lucy's 6th visit but only my 3rd as it is difficult to get the time off work. The days normally consist of learning new exercises and then an hour in an oxygen chamber(Like a decrompression chamber)(Hyperbaric Oxygen Therapy). The excercises are very slow and very gentle up and down movements of the fingers in a series of different pressure points on the chest, abdomen and back. These movements stimulate increased blood flow in the tiny capillaries around the pressure points bringing oxygen and stimulating areas that would not otherwise thrive. The purpose of the treatment as quoted on the clinic's website is as follows:
"The Scotson Technique first seeks to reveal and address the frequently ignored but complex weaknesses of the thoracic and abdominal respiratory muscles that are a hidden cause of structural and functional abnormalities and the broad range of symptoms associated with brain injuries.
By treating the respiratory system in close connection with other muscle groups, its aims are:
- To improve blood supply, nutrition and nervous response to under-developed muscles and to the connective tissues between the bones.
- To improve the electrical connection between the brain and the muscular skeletal system.
- To reduce spinal compaction and improve blood supply to the nerve connections from the spine to the respiratory muscles and the internal organs.
- To improve the body's general and cerebral metabolism.
- To steadily create better and more normal structure which leads to more normal movement and understanding.
The Technique works with every child and results are maintained when the therapy is discontinued."
The therapy is very time consuming and when you start the therapy you commit to 1-2 hours of therapy 7 days a week. Again Dawn has largely been responsible for this particularly when I haven't been at the clinic to learn the excercises. Lucy over time has got used to the excercises and often she will become quite relaxed during the them. When we first started she was always unhappy and would cry and arch her back all the way through and it made it difficult to see how the therapy could ever work. From our own experience the therapy has definitely made a difference and we can also see a big change in Laila since she started going. Laila used to have quite a pronounced grunt just when breathing, caused I think by weak muscles in her chest and throat. The grunt has all but disappeared and she just looks so well it is amazing. The therapy is not cheap (£600 per week) especially taking into account accomodation if you need it. It can work out about £1000 per week. Fortunately we can stay with my Aunt who lives very close to the clinic which keeps the cost down (Thanks Aunty Mary). There is a chance to make Lucy's life a little more comfortable and happy, so the money is worth every penny. The most amazing thing is that money for Lucy's treatment has largely been provided by unexpected donations and fundraising organised by friends, family and in some cases strangers. This is a small miracle in itself and we will be enternally grateful to all those people. The generosity we have experienced not just financially but also with time and emotion has at times been overwhelming.
Lucy has touched peoples lives in a unique and profound way that any normal person would not be able to do. She will continue to do this throughout her life and she will change attitudes and prejudices of those she meets without words and without any effort. I can see now that my little Lucy has been given a very special gift.
Thursday, 13 September 2007
I got to take Lucy to school again today which was great. We arrived much too early because Joshua had to be at school early to go on a school trip to York. Lucy sat with me in the front of the car while we waited in the school car park. We sang and car danced to the radio for at least half an hour and she was really getting into it until she flopped forward and headbutted the steering wheel. Naughty Dad should have seen that coming. We had floods of tears for the next ten minutes but I don't think she was really hurt that much. Over the last couple of months she has really perfected the sympathy cry which soon develops into the angry, give me more attention cry if you don't offer enough sympathy. Dawn and me find it quite amusing because she has got such a "stamp your feet" temper when she gets going, I guess just like any other 3 year old girl. We finally made friends again just as Hayley arrived with Lucy's best friend Laila. We paraded them into school (it feels like that because of all the attention they both get) and they were the first to arrive in the classroom. They were straight out of their buggies and on to the resonance board. They lie on it to hear and feel amplified sounds made on the board by rattles, bells etc. and they both love it. We left them their safe in the knowledge that they would not have a dull moment for the next 3 or so hours. Lucy had a full day today as she was taken by the school bus from school to nursery for the afternoon for more fun and play. Today was the first day that we did not have to take a car seat for Lucy as the transport services have now got the right straps for her buggy and she can be wheeled onto the bus. Apparently she was awake and in a good mood most of the day so hopefully she will have a good nights sleep. When I took her up to bed, I picked her up and Dawn and Joshua both said goodnight and she gave as all some lovely smiles. A nice way to end the day.
Tuesday, 11 September 2007
Laila getting stuck in
It was lovely to be able to take Lucy into school again this morning. The school has this happy atmosphere and you know that the kids are going to have a lot of fun. I took a few pictures of Lucy and Laila who both look so cute in their little uniforms. It was also the first time I saw Lucy's little peg...big lump in my throat. So many people have said that Lucy and Laila could be twins, it is great that they are in the same class and probably will be for a long time. I am sure that they will really come on quickly with all the stimulation they are getting. We could never do the same at home. Every single teacher and member of staff seem to have boundless energy and I have not met anyone yet who isn't smiling. They really see the children as children which seems a funny thing to say but you get so worn down by the sympathetic looks and comments, that it is like a breath of fresh air to meet people who can genuinely see beyond the disabilities. These are beautiful little children with their own personalities, habits, likes and dislikes. They will grow and develop in their own ways just like any other child and have got so much to offer soceity if they are given the chance. At Fairfield School (www.fairfieldschool.co.uk) they are being given that chance. I wish more people from the outside could experience the schools approach to life and be educated to be more accepting of things which are not part of their normal experience.
Monday, 10 September 2007
Lucy is settling in nicely to her daily trips to school. She seems to have got into the habit of falling asleep on the bus home. Today she was dropped off at her nursery for the afternoon and because she was asleep the nursery staff decide they didn't want to wake her. As a result they didn't give her dinner until the middle of the afternoon and so missed her tea. Dawn has stressed numerous times how important feeding is but they still don't seem to get the message. From day one we knew that oral feeding for a child with Lucy's complications was unusual. More than once we have been threatened with a gastric tube and every time we have resisted and persevered with oral feeding. We regard Lucy's feeding which is now very good as a major success and hope to make it a permanent thing. It would be so easy to relax on the feeding which is probably the most time consuming thing we have to do but we know the consequences and can't let that happen. Needless to say she devoured her supper and is now sleeping soundly.
Sunday, 9 September 2007
We had plenty of time this morning for a change. Dawn got up with Lucy so I got a rare lie in until about 9:00. We went to the christening of one of Lucy's friends from the child development centre which was at 12:00pm. The church was quite a forward thinking, modern setup with good music, lots of young faces and a scrolling slide show as a welcome. I quite liked it for a change from the usual Church of England dourness. Lucy attracted the normal unwanted attention but Dawn kept me from getting too mad about it. She always says to me, "Stop trying to educate the world one person at a time!" and she is probably right. It just makes me feel better when I know that they know that they have been caught at it. I must do those cards to hand out. I have to admit to being touched by the service though. As part of the sermon/speach/presentation (they call the sermon all sorts these days) they played a short film. The film was a story about a man going out for a walk around a lake with his 18 month old son, who he carried on his back with a kind of ruck sack. The walk starts well, its a beautiful sunny day strolling through the woods but at the half way point, as far from home as they could be, it begins to rain. The rain gradually falls harder and harder until they are walking unprotected through a torrential thunder storm. The child is now scared, wet and screaming, unable to protect himself from the rain. The father then carries the child in his arms to protect him as best he can and he keeps repeating to his son "I love you, Its OK, I will get you home". Eventually they reach safety and everything is OK again. The father reminiscing about this experience says the closeness and the love he felt for his son during their perilous journey home was a defining moment in his relationship with his son and he valued that experience above all others. The moral I quess of this story is that you should not expect all your days to be sunny because it is inevitable that some day it will rain, it always rains. It may rain on you or somebody you care very much for. Don't feel that it is not fair that you or somebody close to you got wet and scared, it may just be a wonderful opportunity to experience something different and amazing that you would not otherwise have done. After the rain comes the sun.
Saturday, 8 September 2007
I haven't blogged for a couple of days due to being in Germany and yesterday when I got home we went away for the night to celebrate our 16th anniversary. It was the first time this year that we have had time just to ourselves. Lucy was in good hands with my parents who stayed the night at our house. Unfortunately they are the only real babysitters we have and we do call on them too much really. My parents have been a crutch that we could not have done without. I know it is getting more difficult for them but even so they are always willing to do whatever they can. Fortunately now that Lucy is at school life will be a little easier for a while and we won't need as much help. We are hopefully also going to look into the possibilities of respite care. There are people in the area who volunteer there help to look after special children and our community nurse can arrange for us to meet them. We will see what happens.
It was great to get away but it is difficult to detach from everyday life and completely relax. Also when you spend most of the time being carers, physiotherapists, parents, wife and husband it is difficult to be individuals, just Dawn and Neil. It was lovely though just to be able to do nothing for a few hours, no timetable, no feeds, no chores, just nothing. Hopefully we can make more opportunities to be just Dawn and Neil.
Wednesday, 5 September 2007
I am away today working in Germany. I know where I would rather be. After speaking to Dawn I know Lucy had another good day at school. The bus did bring her home today but not until 13:15 which is quite a lot later than we were lead to believe. It looks like she is the last child to be dropped off. Today she slept all the way home. Dawn was meeting a friend she met recently through Lucy, so had quite a rush to get Lucy fed before she could go out. Tomorrow is the day Dawn works so tomorrow morning will be a bit hectic for her without me there to help. Joshua is never too upset when I work away because he gets to sleep in our bed which he loves doing. I get back on Friday which is our wedding anniversary (16 years!!!). My flight is due to land in Manchester at lunchtime. I only just managed to avoid having to be in Germany all Friday after using emotional blackmail on my boss. My parents are babysitting overnight and we have booked a very nice hotel that Dawn has always wanted to go to. It is a very long time since we have had any quality time just to ourselves and I can't wait. KLM better have no hold ups on Friday!!!!!
Tuesday, 4 September 2007
Lucy and Josh getting ready for school
Lucy looking cute with her pigtails
Lucy and Laila with their matching buggies
Ready for some hard work on the computer
Josh and Lucy after a hard day
It was pretty hectic this morning as it was a new routine for us gettting two children ready for school. Lucy was as good as gold and didn't even complain too much when Dawn did her pigtails. We dropped Josh off first but he didn't want us to get out of the car (Its not cool to be walked into school by your parents anymore). We then waited at Lucy's school for her best friend Laila to arrive so that they could go in together. I have to admit to feeling slightly emotional. The school staff gave the children an amazing welcome and ushered us in to the school. After taking Lucy to her classroom and making sure she was ok (Don't know why she wouldn't have been) it was time to leave, childless. It was really quite strange.
We did have a minor hickup with transport. Lucy is supposed to be taken home by the school bus at lunchtime. We were concerned about her travelling on the bus but decided in the end that it would be ok and it will give Dawn at least an extra hour every day. However we got a phone call from the school at about 12:30 to say that the transport company had not realised that Lucy was in a chair and were expecting her to be in a car seat. This meant Dawn had to rush up to the school to pick her up and her teacher had to miss her lunch while she sat with Lucy. The excuse from the transport company was that they did not have any straps to strap Lucy's chair down. For a company that specialises in transporting people in wheel chairs you would think that they might carry spares.
They day still ended well. Lucy and Josh came home happy and Lucy especially looked worn out. Hope you like the photos.
Monday, 3 September 2007
Lucy seemed a little better today although she must still be feeling a bit tender. She still went to Nursery all day without any problems. Joshua spent the last day of the holidays watching some dvd's that he bought with his holiday money. He is excited about school tomorrow as he will be head boy. It is Lucy's first day at school tommorow. Dawn has bought her a little grey dress, white shirt and a pink rucksack. I will put a photo on tomorrow's blog. Her best friend Laila Brown also starts tomorrow at the same school so it will be lovely to see them both together. Both Dawn and myself will take Joshua and Lucy to school tomorrow which has worked out really well. Lucy's school is a brand new state of the art special school. She has been attending nusery sessions there every Friday for a while and we have got to know the staff and teachers quite well. It must be a daunting prospect for many parents in our situation taking their children to special school for the first time. Fortunately Dawn got herself involved with the school very early and it is clear that there is no better place for Lucy. In fact we are fortunate that we have such a good school in our area. There is a link to the school's website under "Links". Lucy will just be going in the mornings for the first 18 months but will also be going to her old nusery for two afternoons as well. We don't want Lucy to lose the contact and interaction she gets from being around the children at her "mainstream" nursery. Dawn is looking forward to getting some of her own time back as she has been totally immersed in caring for Lucy, going to appointments, doing physio, listening to people tell her what to do with Lucy etc, etc for the last 3 years. People outside our very different world cannot appreciate what a drain the constant stream of hospital appointments and home visits is on your energy and emotions. I have been constantly guilty of overlooking the day to day stresses that Dawn has been under from my detached position as the father who goes out to work. It is not only the fact that there are so many people offering advice, from Physiotherapists, Doctors, Play Therapists, Occupational Therapists, Dieticians, Family, Friends and strangers, it is the feeling of guilt when there is not enough time or energy in the day to do all the things you are supposed to do. Dawn has coped brilliantly with all this and has carried more than her fair share of the burden. It is great that she can now look forward to getting some of her life back, having time to herself, going horse riding, having time to relax and think about herself for change. Lucy will also benefit from a little of her own independance. Tomorrow is a big day!
Sunday, 2 September 2007
Lucy was still struggling today with pain in her neck or back. We had to be very careful handling her because once she gets upset she will cry for ages and nothing we do seems to calm her down. After a late start we set about unpacking, washing and other dreary jobs that always need doing after a holiday. Lucy was happy to be left alone and not handled. On holiday we actually fed her in her pram just about all the time because it was so hot and sticky. This could be a bit of a break through if we keep it up because up to present we have had to hold her to feed her. Really she is too heavy for that now and apart from giving us big biceps it can't be good for our backs. We have a Leckey Squiggle chair for Lucy which we switch between a sitting base for in the house and a buggy base for pushing her around. The problem is the buggy stays in the car and the sitting frame stays in the house which means having to always unclip the frame from which ever base and carry it bacwards and forwards to the car/house. The chair is not over heavy but with all the other stuff we carry it has been too easy just to feed Lucy on our knees and not bother with the seat. I wish we had two although we should now make the efffort to bring the chair inside.
Today was the worst day of the holiday, the trip home. We had to be out our villa by 10:00 but our flight didn't leave until 18:55. My sisters family were on an early flight so we pretty much had the day to ourselves. We gpt up fairly early to sort out final packing and cleaning. Lucy was very unhappy and screamed for a good 15 minutes. She seems to be in pain when handled. Joushua finally calmed her down and she went to sleep. Joshua and I then had a final swim in the pool before packing the car up to go. We only just squeezed everything in our Ford Focus, not helped by one bulky sky chair. We drove to Port De Soller which is a lovely small port surrounded by mountains, in fact you go through a 3km tunnel to get there. We killed some time looking at shops and strolling around the marina. We had lunch in a restaurant right on the edge of the marina which was stunning. It was Dawn's turn to feed Lucy which was a long drawn out affair as Lucy was pretty drowsy and so I don't think Dawn appreciated the location quite as much as I did. Lucy did her annoying trick of filling her nappy half way through having her lunch which didn't help either. We made our way to the airport, left the hire car and headed for check in. We were early so decided to feed Lucy (My turn). However as soon as we got her out her pram she started crying and was inconsolable. We all had turns at trying to settle her down but she just screamed and screamed. In the end we gave her some Calpol and it seemed to do the trick. We sailed through check in and security even with all Lucy's medicine, food and the sky chair. It was then a long wait as we were delayed 1hr 30mins. Lucy was fine and we had time to feed her twice so that we didn't have to do it on the plane. We got special assisstance on to the plane as we had to fit the sky chair before everyone else got on the plane. Luckily one of the stewards knew how to fit it although I probably could have managed. Lucy although seeming very tired only slept for half the flight but was settled. At Birmingham I had to carry Lucy all the way to baggage claim because they said they could not find Lucy's pram amongst all the others which was rubbish as there weren't many small children on the flight. However, we managed but we won't be able to to that for long. We finally got home about 01:30 and went straight to bed although Lucy did cry again when we dressed her for bed. We think she may have hurt her neck or back possibly in the pool or maybe mishandling.
I was a fantastic holiday made by having good company to share it with, especially for the children. Joshua and Lucy will have fantastic memories and we all look forward to the next one.