Our Pal - Harry G
- Born: 13/06/2001
- Illness: Lennox-Gastaut Syndrome
- Status: Moved On
- Home Page:
NB: this is a forwarding address, we do NOT disclose home addresses
- Parents/Guardians - Susanne (Su)
- Interests - Age group for toys is 3+ he no longer needs baby or toddler toys but things like simple jigsaws, blocks and bricks, chunky pens (not the pencil thin ones nor paints). Harry is now on the SonRise program so no toys with batteries as they encourage ism's (autism) but turn take toys, jigsaws, wooden drum, bricks etc are both needed and most welcome.
- Favourite Colour - Red
- Able to read? - No
- Able to use hands? - Yes
- Visually/hearing impaired? - No
- Suffers from any developmental delay? - Yes
Siblings - aged 3 to 16 wishing to receive post
About - Harry G
Story written 2004
Harry can have seizures any time of the day or night and has severe brain damage and learning disabilities (severely globally delayed with progress at great delay). However, he still loves to play on his special swing, or listen to Mozart when he’s not feeling very good as it makes him relax. He does walk but in a very unbalanced and un-coordinated way, when the weather is good he likes to go out for little walks for a short distance with his mum. He is unable to speak or communicate other than ‘happy’ or ‘not happy’ but often laughs and smiles, with abundance of personality. When themed art Posty Projects arrive, Harry’s sister Eleanor who is 8, makes them up and puts them in Harry’s room. Together, Eleanor and Harry’s mum Su, tell Harry who they are from, point to the colours and tell him all about them. They hope he understands just a little of the thought behind them. Posty doesn’t just help Harry, the support means so much to all three of them (Harry’s Dad chooses not to be with them, and his Nanny and Auntie live in Denmark). Maybe Harry is not so bad when you think that a typical ‘West’ child often has no head control and is unable to talk, walk or self assist. Everything Harry has is ‘special’. A special trike, a special large cot, a special highchair, special shoes, special car seat. But then, Harry is special and is much loved by his sister and mum.
Story update 2007
Harry is now just before 6 years of age and in the 5 years 10 months since epilepsy came to him, we have adapted, changed, cried, moved, learnt to live with epilepsy and found new achievements for him. We have explored any and every avenue to improve life for and with Harry – and I think we stand victorious in the original prognosis of no mobility or neck control! We have achieved victory after victory with the Statutory Services and they have come to realise that we indeed know better than they regarding what Harry needs. Harry has been on the Ketogenic Diet now for 2 1/2 years of which we’ve had two years completely fit free. This is a unique achievement, as most people hope for just a small improvement. There is an enormous amount of damage to Harry’s brain and Harry will probably always need assistance with a lot of things. But as Harry gains in abilities, the need for everything adapted becomes less than it was.
Update 3rd January 2011
Four weeks solid freeze and a white Christmas – well, what an end of year 2010 was! And this update is also going to be the last one for Harry as I feel it’s time we move on from Post Pals. We have been part of Post Pals nearly since the start as Harry was child number 5 or 6 to join; hoping memory serves me fairly right.
Being part of Post Pals during Harry’s early years of difficulties gave us a belonging we could only have dreamed of, something I’m sure many Post Pals children and their families are realising after joining. And we have been fortunate to make some lovely friends with some of the volunteers too – Kate Dee was our first ever Christmas elf and my, did she spoil us rotten!! We’ve come to love Maria and Michael’s picture letters. Sami has regularly been in touch virtually since we joined and Hanna joined Ellie in Ellie’s Pyjamas Parade to raise money for Post Pals (Ellie’s second fund-raiser for Post Pals) and has since written faithfully to both Ellie and Harry amidst her own college work etc. We have followed Kim on her journey to marriage and soon to be family addition and have loved all your lovely and really thoughtful parcels and endless cards. Your Mother Day parcel to me is still by far the BEST EVER.
Throughout my struggles with the Education system for Harry, I now feel I stand victorious. That the Head Teacher left with the only dignity she could possibly muster (she got married… poor bloke…) and the school have in the time from the October half term when she officially left, till the end of 2010, managed to decide to teach the children in different groupings to how it used to be done, and this was the main cause of my ongoing complaint. So, from January 2011, Harry will be taught in a small group with high staff ratio on the level he deserves to how he can understand the world. I will continue to home school but now in addition to attending school, as they will now complement each other instead of not.
Harry still cannot speak. But he can chew, walk, eat and drink with no help. Things I was made to believe he would never do. The list of things he cannot do is still there but above anything else he can or cannot do, Harry laughs and loves. There was a price, but we stood victorious in the name of conquering Infantile Spasms and limiting the acquired brain damage and we found a way when they told us there was none. And some of you followed us on this journey, gave us hope and encouragement.
During the last 6 months or so, I have started a Facebook Carer Group and I shall continue to expand on this. I have also joined the Aiming High Parent Participation for Staffordshire (there’s one for every county) and I shall continue to work there improving services for ALL our disabled children.
And one day, maybe I’ll even finish my book of Harry’s journey. One day.
I have met and got to know some truly inspirational people through Post Pals and cannot mention you all by name, but you’ve all played a big role in our lives and I thank you for that.
Update 30th October 2010
Firstly, to those who’ve looked in vain for September’s update, I apologize for the lack of one. Going back to school is always hectic, but in our house we’ve also started part-time home schooling for Harry and what little time I did have, has now disappeared. On top of this, I had my gall bladder out at rather higher speed than I had anticipated – 10 days from seeing surgeon to lying on his table! I have known an operation was more than likely and waited for the right time for staff to help me with Harry. When the day actually came, and this has been discussed over at least 10 months, it was ‘inconvenient’ for the staff in question to actually help out. Luckily, good friends and a fantastic Ellie all pitched in and I got my troublesome gall bladder out. And I can’t say I’m missing it! Years of indigestion type pain appears to have stopped so I’m happy!
We made a good start to the SonRise program which had to be interrupted due to my op, but for the last week or so I am now back to normal and we again venture in the room with Harry.
Ellie, taking a turn with him the other day, excitedly came telling me ‘Mum!!! When Harry couldn’t reach the toy he wanted, he turned to me saying ‘Ellie’ clear as day and I gave him the rainmaker saying ‘Rainmaker’!’ Harry is fascinated with the ‘bye bye’ sound and is attempting ‘Mama’ which is fine with me – anything!!!
I approached the school governors early September about (legal) flexi schooling and was assured a quick response. I am still waiting 5 weeks on. They were not so keen in me ‘just keeping’ Harry off school due to the absence record going sky high but this will actually trigger Education to question why the absence is so great. So, in lack of a response, I have now advised that after the October half term, I will continue with a high absence as it would appear the Special Needs School appointed by the County, are somewhat struggling in addressing the pre-verbal stage Harry is at. God help us if this is the best a special needs school can offer…
During the time I spent recuperating from my operation and was unable to do any ‘normal’ housework, I spent some more time on Facebook. A friend and I have now founded a Carers Group as there is such a need for carers to meet and ‘be normal’ for a bit! It has taken a little effort to start off, but numbers are growing and we envisage the group will just tick over nicely with a few dates for lunch, shared Christmas shopping etc doing things we all need to do anyway but it’s nice to do together!
Our round of thanks has to start off with Hanna! How you find the time to write so much so often Hanna, is just beyond me!! But it makes Ellie smile at some of the things you tell her and the pictures you stick on Harry’s are just lovely! Donna Bedford sent both lovely bracelets, thank you. Thanks to Karen (Sami) for the card. Valerie Simms sent loads of scary relics tucked in the card, a massive hug from Steph H, a very spectacular pig collection from Anne Calico, the scrummiest smiley cupcake from Emma, loads of snail mail from our Sarah, from Michael and Maria too and ‘Well done Michael for doing great in your race!’, and last but by no means least to the Lawrence Family (soon to expand in numbers!!) for the speedy mouse card – and again for the SonRise box which we’re incorporating in the program now!!
Writing this on the Spookiest Night of All – Harry is not ghost friendly – I do hope everyone has survived the scariness and now look forward to the celebrations of Guy Fawkes! There is something magical and autumn like about a bonfire, especially one you can toast marshmallows on and have a hot chocolate – or so Pooh Bear seems to think!! The Christmas rush is nearly upon us – so wishing everyone a peaceful build up to the forthcoming festive season! Lots of love from us all! xx
Update 30th August 2010
Even though this is an August update, we are STILL waiting for decent summer weather! You’d be forgiven for thinking it’s October – not the end of the school summer holidays!
Ellie and I have been really busy swapping everyone’s bedroom about in our ‘Great Plan’ for Harry. Ellie is now downstairs which she is rather liking, and Harry is now upstairs in our old office that is now completely re-built with new flooring and a custom made bed for our little man. This frees up the second bedroom which has also been re-floored and is now SonRise Room!
At the beginning of August, we took Harry in there for the first time and his reaction was so funny! He was laughing at us mimicking all his funny ways! We work with him in 2 hour slots and when the ‘lesson’ is over, we’re knackered and Harry quite happy to carry on! Ellie is joining in the program too which is such a help for me. After a week, I’m certain Harry started saying ‘Ellie’ – he would wake up in the morning and instead of his usual singing, he’d shout ‘Ellie’! Bless, she’s worked so hard with him and he obviously loves it!
We had committed to one or two daytrips, so we went to Blackbrook Zoo with Walton Hall and to Drayton Manor too. And we really enjoyed those! The activities were arranged from the school that will become Harry’s high school in two years time – and how amazingly different that school is to the one Harry attends now. I just can’t wait for Harry to go! I can’t even say the high school is better – it’s simply just in another league and comparing the two, you’d struggle seeing they both cater for the same kind of kids!
We have had some lovely mail this month – kind thanks all round! Maria and Michael have made such a nice picture letter again – we really enjoy them! Samara has been spending hours making the tiniest stars you can imagine – every one so perfect! And they all came in cones so they look like summer icecream! We’ve hung them on the patio door and they look fab! Emma has written to Ellie and yes, we have yet to miss a Post Pals BBQ! And Ellie says ‘it’s not about the brave things you do in life – it’s about the difference you make’ – I trust you know what that means Emma! Annie from Bristol has made Harry an aeroplane card that he finds quite amusing and likes to get us to move. Harry giggles when it flies across the sky! Hanna has been really busy with end of term college work, driving test and still managed to find time to make such lovely arty cards – 6 in total over just a month or so! Fingers crossed for next time Hanna. Kim has sent a strawberry smelling card – just as nice now as when it arrived! – and an IFO card that made Ellie and myself laugh! And then, Kim has spent what looks like HOURS in finding SonRise things for Harry’s room which is just so thoughtful – thanks Kim.
Ellie is spending the last week of the summer holiday in Denmark visiting her Nan and Auntie. Looking at the mountain of stuff she’s intending on taking – I remind her it’s only for 4 days but it looks more like 4 months! I gave up arguing with her when she said she intended bringing her dressing gown…. ‘A girl can’t be too prepared’ she replies! Try telling that to the airport check in staff who will charge for excess luggage! Or maybe two airplanes are required to shift all the stuff!
As the summer holiday draws to an end for another year, this time I sincerely hope for an Indian Summer! I feel well and truly cheated out of paddling pool days, children giggling in the gardens, lots of BBQ’s and salads, and instead have the central heating ON and am cooking winter roasts! But I’m sure I’m not on my own wishing for warmer days!
Kind thanks to all who take such a lovely interest in Harry and his journey, and are of such support to Ellie and myself!
Update 8th August 2010
This is an update including June and July – apologies to those who’ve looked in vain!
June brought Harry’s 9th birthday which was kindly remembered by so many of our Pals – and July brought our Post Pals annual party which we attended and enjoyed. Thanks again to Jan for lending the venue, but more so to Viks and her parents for their never ending Post Pals support! For me, it was amazing meeting ‘feedback Kate’ for the first time ever! And thank you also to Viks for her lovely Mr Tumble DVD for Harry!
Claire, Michelle and Gary from Liverpool, Susan, Myk, Amethyst and Breeze, Jenny Orpwood from Penzance, Kim, Lee and Bridget, our Hanna, Sarah G, Sue K and the cute devil, Alfie, Tracy from Bristol, Kenyan and Zachary, Jenny and Jess, Ruby, Tina, our Maria and Michael, Lynn S and Hilary all sent Harry birthday wishes and gifts! I would like to remind our Post Pals friends that Harry actually cannot write and although it would be so lovely having penpals, his Mum sadly lacks the regular time to do this.
Harry has now had end of year school reports including a large section on how Harry has learnt about Tudor Sailors and the Statue of Liberty in Humanities. Those who’ve met Harry are totally allowed to laugh – because that’s exactly what I did! I queried it with school and their response to me was that they think Harry does get something out of learning about this. I would like to meet the typical 9 year old (without brain damage and autism) who can actually relate to these topics! So, in a way school has just done me a huge favor – along with the OT observation I finally got the week before end of term that confirmed my suspicions on Harry’s school day – so, it’s taken me a while to consider our options but I’ve finally decided – SonRise, here we come!
So, everyone has moved bedroom and as I write this, the joiner is doing some major work to make Harry a new bedroom and make the SonRise room ready.
Whilst the summer is upon us, the promised BBQ one must, again, have gone somewhere else… We’re not having nearly enough days in the garden as we would have liked.
Having met with Harry’s social worker, who after seeing latest reports now agrees school is somewhat missing the point with Harry, we are going for a re-statementing of Harry and also a meeting will be called into new term to support my home schooling.
My ongoing complaint about schooling provision to Harry has produced little, I am very sad to say. So, as I am not alone in this, we are now stepping up the game – if anyone is experienced with challenging a Head’s leadership, please mail me as I need all the help I can get!
Wishing you all a lovely summer and great summer holiday!
Update 9th June 2010
We’ve been busy in the garden on the nice days we’ve been lucky to have – we’ve painted the shed, some new fencing panels, and generally brought the garden back to ‘fairly presentable’ after the long winter. Harry and I are still watering our potted vegetables – one or two have had a minor set back so we’ve had to re-sow.
Ellie and I left Harry at home to have a week in the sun and to recharge our batteries – just lovely! We were extremely lucky with the weather as the days around our break were wet and not so nice but our days were just fine.
The situation with Harry’s school and education is now coming to a head, in the sense that we are meeting an Inclusion Officer to discuss the way forward – not just for Harry but also for the other children whose parents aren’t ‘thrilled to bits with school’. There are many issues indeed – too many to go into here – but we have a 2 hour meeting scheduled and I somehow am not sure that is enough time. I already understand that the Department of Inclusion is directly involved at school which indicates there is more to this unhappy situation than I am aware of! I have been promised an explanation, so that will be interesting! More of this in the next update.
It’s been a busy postie month for Harry! Andrea from Darwen has sent a lovely card, Despina sent a postcard from California, Jenny Flack sent a lovely cupcake card and Ellie asked where the cake was! Jenny, thank you for your lovely words :-). Hanna sent Igglepiggle on a card, Shay some sticker animals and a super card he made himself, Nicola a fab Scooby Doo card, a Groovy card from Kim, Margret Nagy from California sent cards to both, Stephanie, Dominic, Karen + family sent Harry a figure of Mr Bump and a Hat Trick Hunter bean bag boy, Sarah G sent some really good poems and a letter, and Bradley and David from Castercliff Primary sent letters and pictures. Many thanks to all!
We have just had the Whit week off with super weather for most of the time – so good, we had the pool up! The children are back to school now, the weather has dipped a little but hopefully the sun will start shining again so we all can enjoy a decent summer! We are looking forward to the Post Pals BBQ in a few weeks time – it will be great to see everyone again!
Update 1st May 2010
This has been an unusually hectic time for me and I must apologize this update also includes March that I just never got to do. I’m very sorry to those who have been looking and found nothing.
Going back to March and Mothering Sunday brought an absolutely amazing parcel from Kim Lawrence who is one of the Post Pals volunteers. The parcel was simply an Aladdin’s Goodie Box for a Mum – with chocolates, candles, socks, teatowel for girls, relaxing sleep therapy and so much more! What a fabulous present, thank you so much Kim!
Then the Easter Bunny hopped by our house with rabbits and chicks from Hanna, and cards from Nicola, Sarah G and our Fairy of Many Names!
World Book day was celebrated in style from Alice and Alex who sent a lovely parcel – I managed to take a picture of Harry amongst the goodies and I will mail it to Post Pals to be put up on the picture wall!
Harry has had a pile of mail starting with a red sweetie card from Julia, Gunnar and Jamie Lee have drawn their guinea pigs Chuncky and Bebo, Tristan wrote a long letter telling us all about himself being a budding wrestler and sportsman, the coolest monkey card from Rheanne, a canal picture and swan story from Sarah G, lots of lion smiles from our Fairy of Many Names, a super lion card from Sarah, a cute kitty from our Sami, April Fools smiles from Sarah G, Hanna sent Meg and Mog Coloring book for Harry and the most special card was from Matthew Coxon who, like Harry, is autistic and epileptic – so Harry has a special buddy now 🙂 Thanks to Mum for helping writing the card.
Ellie, of course, has her own Postie Mail with a long letter from Hanna and a very cute chick! Ellie is a little snowed under at the moment Hanna with Home Learning Projects (one a week!) but says she’ll send you a card from Portugal as we’re going on holiday there in two weeks! A lovely fairy card and long letter from Libby, Easter wishes from Sarah G and a sweet little duck card from our up and coming Hollywood Star – don’t forget us when you get famous!!
The ‘thank you’s’ out of the way – March and April have been extremely busy in our house. It was Ellie’s birthday too – the official age is 14 but I suspect Ellie is much older most days!
I must have been mad to accept a German exchange student for 2 weeks, but none the less, I did. Luckily Lea’s English was better than I had dared to hope and the girls got on well – but it was harder on me than I had expected.
Ellie then went for a flying visit to her Nan in Denmark and was only meant to be gone 3 days but as things panned out, she was due to return on the first airport closure day and simply just had to sit tight. I was trying to find an alternative way to get her home but it included me fetching her by car which was a 952 mile trip each way! And as both Sealand and England are islands, both of us were stuck in getting across the water so we ended up sitting the delay out, and Ellie was pleased to return home with a five day delay.
Having had nearly 12 month since a proper break, I booked a holiday for Ellie and myself for mid May which we’re really looking forward to. I have somehow managed to get roped into lots of worthwhile things relating to autism and disability, but sadly at the cost of other things, particularly looking after myself, which I am beginning to realise is not so good. I have now re-designed my respite to be more up to date of what works for us with staff I can totally trust in a timescale that actually works which the previous respite did not really account for. I’m also beginning to have to say no to things close to my heart because I simply have to take time out and get well again. I anticipate homeschooling for Harry as our County is in the questionable group of ‘Top 20’ meaning the top 20 WORST funded Counties in Great Britain for education. Although negotiations are still taking place about an alternative approach to Harry’s schooling, I am anticipating having no choice but to take Harry out of school – and I can’t start that journey being worn out.
Harry is actually doing well – apart from unexplained sudden hayfever symptoms when riding for RDA the last two times with his face swelling up so he looked quite scary. Before anyone worries I just left him on the horse – I go riding voluntary anyway as it happens, so I am there although not working with Harry. I just keep an eye on him and the first time it happened I simply whipped him off the horse into the car and straight to the doctors! I am very much on top of this having returned to the doctors and Harry is currently on medication and due back this coming week for check up. I will monitor this closely – riding is of such benefit to Harry, but of course, I can’t have his face swelling to unrecognizable proportions, so we’ll see…
The Radio 2 show have been running a Dig In campaign all spring – I sent off for my free seeds which Harry and I have potted and are watering frequently. Not sure what Harry gets out of this but he has recently been ‘helping’ me in the kitchen by stirring sauces and turning things in the frying pan which he seems to enjoy. So, we’re having a go at DIY gardening in containers too! It’s got to be containers because our little Jack Russell is a monster and wrecks the garden and any plants in it too, so we’ve put it all out of reach so we have something to harvest!
Wishing everyone a lovely spring – enjoy the sunshine – let the kids get out and about – early BBQ even… until next time xxxx
Update 4th March 2010
February is always the shortest month of the year but it is crammed full of Valentines, Half Term and not forgetting Pancake Day of course! Harry had 4 Valentine cards to much amusement of his sister! I’m sure you know who the guilty parties are! Many thanks! Pens and pencils must have been sharpened and dug out from drawers and put to good use, for Harry has had tons of mail this month! Sarah G, Beddy Bear, snail mail and letter from our Hanna, a sunshine card from the Gough’s, a beautiful picture postcard from Sarah in the US and the longest illustrated letter from Maria and Michael – thank you all round. I’ve updated the picture of Harry from World Book Day when he went to school dressed up as Woody – even he thought it amusing when we paraded in front of the mirror!
Nothing much to update on Harry this month – I’ve gone in the ‘think tank’ to work out how to apply the SonRise learning to include school and I’ve not quite emerged yet! A plan is slowly coming together. Harry’s review at school is due next week and I intend to ask for a timetable so I can see when Harry benefits from being at school and when he can work with me at home.
I have approached the Uni and the College to see if they’d like to offer their Childcare students an opportunity to work closely with an autistic child, but they cannot due to CRB clearance issues. All these laws now begin to hinder the people who perhaps want to help out on a voluntary level which is madness! So, I am still in my think-box – I cannot do the program single handedly and need a little help – when I think how wonderful an opportunity it can be to help someone out of the Autistic World into ours, it saddens me that a piece of paper puts it all to an end.
Update 8th February 2010
After 3 years of trying to find a way to leave both children for a week, I finally sorted it this year. So, the last week of January, I attended the SonRise program in London to basically learn how to join Harry’s autistic world and introduce our world to him, hoping we can make that so interesting that he would actually like to join us. There’s a decent success rate and most, at the very least, achieve a degree of speech.
This change includes either taking Harry out of school to do program at home, or convince the LEA they would like to fund this and have this done at school.
The first week I was back home, I went into cleaning mode to sort my thoughts out. The house is now cleaner than ever and my thoughts are taking shape as a PLAN! I am painfully aware this new program will mean many challenges – some I cannot overcome but have to find a way round.
One of the biggest fundamental changes they recommend is the removal of battery operated toys, as they explain that autistic children concentrate so much of the actions of a toy they become unaware of the world around them – which in essence supports and aids the autism. So, a change of toys for Harry! He has discovered the joy of books and lots of other things and doesn’t even seem to have noticed the removal of some items. I have left him a few beloved ones as I do have a heart!
Harry received a Smile Box this month and a beautifully weighted quilt from Viks. For all the mail Harry got – many thanks.
Ellie is settling into her new school well and is enjoying being in a mixed sex class instead of the ‘boys exclusion zone’ from her previous school. That school may achieve outstanding results, but part of me thinks it’s unnatural to segregate sexes from such an early age. Anyway – hormones seems to have set in with a vengeance in my teenage daughter, resulting in some probably fairly typical family issues.
There isn’t much else to report this month. I’m now waiting for a pediatric assessment of Harry for learning. Myself? Well, I’m waiting to hear if I can have my troublesome gallstones removed by operation – they have been bothering me for years now and our local hospital misdiagnosed and I have consequently been on medication for years that I don’t need. So, having got fed up with my own health, I sought a second opinion and am now just waiting to hear of final action.
Wishing you all a great February Half Term holiday.
Update 15th January 2010
I’m writing Harry’s update mid January after a very hectic 4-5 weeks – apologies to everyone who’ve looked for the update and not found it.
The Christmas build up was lovely – frequent deliveries from Santa Post via the Mail Man. Harry was in the Christmas play at school which usually is a themed story chosen by the children and not the traditional nativity play. I thought this year was even better than usual – The Santa Express. A wheelchair was transformed into a train which took you from scene to scene. Harry was a ghost and that suited him well!
The last week of term, Ellie finally gave up trying to make things work at the all girls school she has attended for 2 1/2 years with nearly as long a struggle. She chose to go the opposite direction to all her friends from our village and therefore lost all her friends at home. I pulled out all the stops and she started the new school 3 days before break-up. I always knew she wasn’t as happy as I thought she should be at the other school and on her first day at the new school, she came home with the biggest smile I’ve seen for over 2 years!
On Christmas Eve, Harry had an operation from which he has now recovered well. It did mean no swimming over the half term though which I’m sure he missed.
Although Christmas day was a recovery day for Harry, it was a lovely day with lots of presents for the kids.
Our Elf this year was Pippin who sent Harry a letter. Isabelle and Oliver sent a play guitar. Ellie had socks, diary, lipgloss, chocolate and a black purse from Elf Janine. Debbie sent a Woodie toy and a Christmas stocking. Tez sent a play mobile phone. Karen sent some eyeshadow and nail vanish to Ellie and Clara the Cat ‘feelie’ book to Harry. Our Hanna sent a toilet bag with nail varnish, lipgloss and shimmer to Ellie and a soft toy for Harry. Beddy Bear sent some ‘colour me in’ book marks, another touchie feelie book and flannel for Harry. We heard from Kim Ginger who was just as busy getting hitched in early January (big congrats). We had lovely mail from China, Sam and Jorday made some fab Christmas cards with lots of decorations on, Jane Fawcett sent mail, and our Fairy of Many Names sent for us all too. Claudia, Henry and Christian sent Harry Mr Tumble DVD, fountain pen, pencil case, notebook, nail varnish for Ellie. A Christmas jingle toy from Post Pals was received and lastly, a letter from Santa to Harry!
If anything or anyone is not mentioned, it is not intentional. Everything Harry and Ellie has been given is appreciated – in Ellie’s case much treasured and loved too. Harry doesn’t know to have such feelings as long as his toy rewards him with a song, a light or a noise, and if he can watch Mr Tumble on demand – Harry is the happiest boy in town! So grateful thanks to all who wanted to make a difference in our lives – you have!
The New Year came and went with Ellie’s first real party – Harry still recovering stayed at home cosy with me.
Then back to school for everyone for a few days before the big freeze. Harry’s school managed to stay open the first 3 bad days when hundreds of other schools chose to close, then on the last two days before the rain set in, Harry’s school closed.
In the same week, our little Jack Russell, whilst out for a walk with Ellie and the Mini Yorkshire Terrier, darted into the road and got hit by a car. He spent some time at the vets on drips etc and had some x-rays. We’ve just been allowed to take him home. Luckily, he is alive and well. Ellie was beside herself with worry and is of course elated all is well.
The American autism treatment program Son-Rise do a week’s course every January in London from the 25-29th which I am trying to get on. As I write this, I still do not know if I have managed to secure a grant for the $2500 fee but am awaiting a decision. If I am successful, I will attend this course so I can start pulling Harry out of his silent world and show him the power of speech.
I was once told he would not walk or hold his head up. Harry has long been walking and holding his head up too. But at 8, he still has his first word to come. Being a practical person, I wish for Harry to say ‘biscuit’ and ‘go outside’ or ‘Mr Tumble’ but I also know my ambition for Harry is greater than just 3 words. I’ll become ‘greedy’ and want him to say more should he achieve a few, as I became ‘greedy’ when he put his foot in front of the other and took one step – then I wanted two, then three, then a whole walk round our village. A walk became a run, it became a backwards walk. I know 3 words won’t be enough for me and I’ll want to spur him on more. Such is the power of speech in a vocal world where we never think of how powerful words are.
So, IF I get this course, a friend who’s done this with her girl already to great success, has said we need to raise 12k to go to America with Harry to take the next course and she is pushing me fairly hard to start fundraising for this. And after that, I’m sure there’ll only be another one.
Once I said if I could give Harry simple choice-making and quality of life, then I’d be happy. I’ve achieved that – anyone who has met Harry would agree to that. Now, I’ve got more ‘greedy’ for my mute boy with the most fetching smile in the world, who can always pull a funny face and make me laugh on the lowest day when laughter comes hard – there is no pride I cannot swallow because now I want for Harry to have more.
Update 28th November 2009
We’ve had a busy November with Ellie’s Pyjama Parade – raising funds for Post Pals. We took to the high street in pyjamas with our collection boxes on a very cold and blustery day! At the end of our day out, when dusk was falling, we had a candlelit procession carrying a picture of each of our Post Pal Memorial children – Daniel M’s family took part, and this was a moving moment in keeping their memory alive.
Give or take a few pennies (and believe me, there was a few!) we raised around £630. Thank you to those who sponsored us on everyclick.com, those who sent Ellie good wishes and congrats afterwards, but special thanks has got to go to Hanna, who has not only been writing to Ellie and Harry for ages now, but came down from Lancashire to take part! Hanna is a young lady who is overcoming her own struggles with ME – something many volunteers are dealing with whilst being involved in Post Pals. Not only did Hanna take time out from friends and college, she also raised a fantastic £33-55. Well done Hanna! Viks has asked me to do a write up about the day and I will do this for Viks to post on the Fundraising Page sometime soon.
A note came home from Harry’s school inviting parents to put themselves forward for 2 vacancies for Parent Governors. Considering my complaint with Social Care and Health in the very same matter – provision for Harry at school with Head not listening and effectively blocking my attempts in resolving my issues – well, this is an interesting opportunity indeed! Some parents from Harry’s school have already suggested that I go for it, and at this moment I am seriously considering it! I’ll let you know next update if I’ve decided to go for it – and next update should also include if I got it.
My complaint has now reached the school. Head has got the Deputy to deal with it – from this I must assume she continues to play her silly games. I’ve gone over the last Offstead Report, and funnily enough, the issues I raise are also in the recommendations Offstead have made…
I have also set in motion some follow up appointments for Harry. He’s now 8 and still doubly incontinent. I wonder if it’s worth exploring if there’s any reason for the incontinence or if there’s something we can do to help Harry lead a more independent life. During this, it has emerged that Harry needs a small operation to sort out a ‘male issue’ and to my joy, this is going to take place Christmas Eve. So, we shall spend Christmas Eve on the operating table. Hopefully, we can spend Christmas day by the dinner table!
Harry has had mail from Beddy Bear, from Grace and clan, from Tina and Molly, a really super card from Cokryn (hope I’ve spelt this right), from Margret across the big ocean and of course from our Hanna. A super-cool mobile, a magic painting book and a ‘Teddy’ story book were also sent to Harry. Our Fairy of Many Names sent mail to Ellie. We too lit a candle at dusk on the Parade Day and sent you good wishes, hoping you’ll get better soon. Sarah sponsored Ellie – thank you so much! And thank you to all who wished Ellie well on the fundraiser.
We’ve done two fundraising events for Post Pals now. The first one ‘On wheels for Post Pals’ and now the licensed ‘Pyjamas Parade’. Our involvement with Post Pals has always been an active one – I remember in the early days, I would chat with Viks via email loads. Then we had a time when Harry needed us with his epilepsy, then his keto diet, and then we needed to raise funds for a variety of equipment for him. Then we had lots of issues with Social Care and Health for respite and other things. We no longer live life in the ‘fast lane’ so to speak on making life the best we can for Harry. The things we face now are different – improving provision at school, enabling Harry to do more independently. Viks often reminds me of the time Harry couldn’t walk and how much I worked with him to improve his walking. Now Harry does so many things for himself – things I was once told, he would never do.
I am at a crossroad in a sense of where to take my involvement with Post Pals. I still feel, and so does Ellie quite strongly, that we want to do another. But not in cold November! We’re toying with the idea of hiring the village hall and arrange a themed night with live music and bbq for next September. In the meantime, I’ve offered Viks to help others out with their own fundraising – and this new idea is being worked on.
Facebook seems to be the networking site for Post Pals at the moment. If you are interested in raising awareness for Post Pals, and indeed some money too, please contact me there – or here, if you prefer.
The preparation for Christmas is now next on the program. We shall put the lights up this week – Ellie loves the outdoor lights we got last year, so they’ll have to go up again. And then off course, the TREE! The best of all!
So, I wish everyone a stress free December and I hope everyone enjoys the build up to Christmas!
Update 9th November 2009
I’m trying to decide if there is a ‘greatness over my continued lateness’ as those of you who’ve been following us a while, may have noticed I rarely submit feedback late. I think my ‘greatness’ isn’t so great really… BUT it’s all in the name of CHARITY! I have not had time to go to my beloved gym for about 6 weeks now which makes the membership fee somewhat wasted! Again, all in the name of CHARITY!
I’m sure you are aware that Ellie is doing another fundraiser for Post Pals! So, I’ve been up to no mischief – I can assure you – but doing all the background work for Ellie’s Pyjamas Parade to become a success! Last year Ellie and friends rollerbladed 3 1/2 miles but I’m nearly convinced we’ve totally lost the plot this year because we’re all staying in pyjamas ALL DAY in PUBLIC in Stafford! Totally barmy if anyone asks me!
I have managed to secure a super prize for Top Adult Collector – so the competition is hotting up amongst friends, which is great for Post Pals!
We have an online appeal where donations can be left – should anyone reading this feel they’d like to! We’ve only got ten pounds as I write this… http://fundraisers.everyclick.com/info.xq?id=1158100&fundraiser-name=Suzanne-Gilmore
October brought the usual frights and scares and Sami’s little bag of tricks were great at getting us into the spirit! A super card too! Erica from USA sent a brilliant pumpkin card, thank you. Beddy Bear has been busy sending Harry 2 cards, also 2 cards to Harry from our Hanna and to Ellie too, but Sarah G has been busiest of all with both letter and 3 cards! The coolest scare card from Maria and Michael – thank you both, we love the card! And Tam from Tokyo sent the cutest card! Our Fairy of Many Names is still sending occasional mail which is lovely – Post Pals just wouldn’t be the same without you!
The situation at Harry’s school seems to go from bad to worse. The Head has now ‘declined’ my help with RDA until I ‘demonstrate more willingness in addressing issues’ whatever that means. So, I have willingly gone ahead in ‘addressing issues’ by going to top of Social Care and Health enquiring to the whereabouts of their ‘transparency’ and ‘every child matters’ policy. Because I think they must have mislaid it… That resulted almost immediately in a meeting with a Commissioner for Parents who’ve noted my concerns and is putting this forward to the right Head of Department (so confusing in Social Care and Health!) and who thinks my views are valid enough to invite me to join a panel of parents to produce a ‘parental toolkit for services that work with children and young people’. So, I have joined this ‘action’ group and I’m really looking forward to the first meeting.
Now I just await the action on my concerns for Harry and it will be exciting to see at which point Head realises keeping parents at the locked front door, is not the best idea… And don’t the experts say that we parents ARE the experts in our own children? I wonder if it’s not time someone told our Head this so she can feel less threatened by us parents (I’m by far not on my own in concerns regarding the same school).
I’ll keep you posted on developments on this, but for now, I must return to the efforts of CHARITY FUNDRAISING so Post Pals can continue sending mail to all the kids.
Update 29th September 2009
I noticed Harry toe walking again this summer. This means he walks mainly on his toes as opposed to on the whole of the foot. This indicates a tightening of the calf muscle which points back to OT, riding and special shoes.
This is a step back for Harry as he’s already spent 3-4 years in special shoes and was assessed to have overcome his low muscle tone and tightening muscles. Harry has been doing the RDA (riding for disabled) since he was about 3 years, but when he went into Year 3 in 2008, the Headteacher decided Harry wasn’t ‘needing’ riding enough to continue. During the one year he has NOT been riding, he is now back to same issues as before – so I dare say, he DID need RDA. I’ve now had him assessed properly – he is back in prescription shoes – and I’m pleased to say, he is also now back enjoying the RDA. I have managed to make myself quite un-popular with the Head by insisting Harry’s need for continued riding (this is with OT support) but with so many other things I’ve had to fight for Harry so far, I’m not that bothered if I upset someone who is supposed to offer Harry services that will improve his quality of life when they think they know better and decide for him without asking.
Harry needs a voice because he hasn’t got one. So, I must be that voice no matter how much of a nuisance the ‘professionals’ deem me to be.
And I will let things go on for so long without saying anything. But at some point, I realise my naive hope of things improving is just that… Naive! Then I begin to make waves to give everyone the opportunity to instigate things for Harry. When they don’t happen – I speak up. So, I’ve now volunteered to help out with riding – passed the CRB check – and am ready to go! And now I sit back watching Head squirm at the prospect of opening the doors for me to have access to observe knowing full well, the failings I see WILL be acted upon in my quest for being that voice Harry needs. Staff cuts and other resource issues mean the school is cutting back on the hands-on help Harry needs to function. Harry is ‘profoundly learning disabled’ and is statemented ‘high dependency’ which means he needs someone pretty much all the time to help him access curriculum and activities not to mention his hygiene dependency. And the more I witness the help NOT being provided, the more I have to be Harry’s voice. So, I predict this year to be a turbulent one!
But onwards and upwards is the only way to better things for Harry – without this we’d never have come as far as we have with him.
Otherwise, Harry is happy to be back at school. It’s a nice little class he’s in with familiar faces. He enjoyed a trip out on a barge recently and has a few more outings lined up before the onset of colder days.
Ellie too is settled back into the school routine – she’s now Year 9 – and the homework burden is much increased. She is finally seeing the last of her Year 8 issues in school and, dare I say it, this year looks promising for her. I hope all her efforts and hard work pay off!
Ellie has decided to do another fundraiser for Post Pals! In 2008 she went ‘On Wheels for PP’ with her mates and raised a staggering £810! This year, it’s Pyjamas Parade up Stafford High Street on November 14th. Please look at the web appeal and be so kind to forward it to all your friends! Stick it on Facebook too if you use that!
So, if you’re free on November 14th and around the Stafford area – STAY IN YOUR PJ’s ALL DAY AND JOIN US!!
We are quietly hoping to raise £1000.00!! Just think how many smiles we can send with that!!
Ellie has also put Post Pals forward as her House Charity at school again. She did last year but was beaten by an appeal for an African village. I agree, Africa does need support BUT I also think we can forget about our own sometimes which is why we raise for PP.
Ellie went to meet Fearne Cotton, patron of Post Pals, to record an interview with both Fearne and Vikki, our Post Pals founder! Not only was Ellie hugely excited but she also took this recording to school and showed everyone in an assembly she held for the whole school! Brave little girl! And, she was so chuffed when the pupils voted and the House Charity of 2009-10 is a share between Post Pals and Teenage Cancer! Well done!!
We’ve had loads of post this time! Our Sarah has sent snail mail with fish, fab origami, pigs and geese too! Kim, Sami and Kate Dee have sent mail too – Maria and Michael, Isabell from Utah and off course, our Hanna.
The last September days mean getting the garden and plants ready for winter. Although winter has its highlights too with Halloween shortly, then the hot chocolate and dvd nights, in our house we’re still sad summer is coming to an end. Even the dogs take to snuggling up most of the day and only reluctantly go outside to ‘do the necessary’!
My days at the moment are filled with background work for Ellie’s Pyjamas Parade which makes me wonder if I should get Vikki to offer an opening for Event Organiser! LOL! I’ve even had to skip my gym for the last few weeks as I’ve had so much to do with all this! But I must admit I really enjoy it! We will try to get the Parade mentioned in the Press so we get it spread the Post Pals word, so if anyone reading this is connected with media who’d mention this, please get in touch!
Update 30th August 2009
The summer holidays are always hectic and that is why I wasn’t able to update for July – sorry!
The wettest July since 1888 – what a way to spend the predicted BBQ summer! Difficult to entertain children, long faces and boredom – but not the case for us! We had a busy program for Harry and Ellie jet-setted off to relations in Germany for a farm holiday and then to join them in school.
Then we’ve had loads of lovely post from Hannah in Cornwall, Annie sent a snail jigsaw, Kim a flying dog, Amy sent hugs to Ellie, Sarah a pair of ducks, and I wonder if Harry has stolen 3 hearts from UTAH in USA because really lovely animal cards came from Dakota, Baily and Maxine! Our Hanna also sent mail and Ellie says she’ll write back this week but she’s still unpacking!
Ellie wants to do another fundraiser for Post Pals – this time, we’ll walk down our high street in PJ’s if all goes to plan. We have also asked Post Pals Patron, Fearne, to meet with us so Ellie and Megan (she came to the Post Pals BBQ) can interview Fearne and take a recording to their school and really spread the Post Pals word! The girls are hoping that will help in choosing Charity of the Year for their school and raise even more funds! For ME, it means a weekly supply of cakes for the cake stall!
So, we’ve got a couple of hectic months ahead with all the planning. Hopefully, when I next update I will be able to have more details, so those who want to join us in PJ’s can – we’re in the Stafford area and Viks has told me that the Midlands have the most Pals, so it would be great to see some there!
Update 8th July 2009
June is Harry’s birthday and Postman Pat was weighed down with Pal Mail for Harry! Thank you to Sarah Gilligan, Tina for both cards, Jenny Orpwood, Debbie, Tracy from Bristol who also sent musical instruments and the coolest toy mobile, Maria and Michael, Despina from USA, Mowgli and Baloo from USA too, our Karen (Sami) and by no means least from our Hanna! We were made up with the audio CD for the car journeys, the sticker book (not sure who enjoyed that more…) the coloring set and the felt set for Harry, not to mention the cutest lemur! Ellie was so pleased with her mug and ted, and Harry with the jigsaw you brought back from your holidays! Glad you had a nice time! El has had activities week and is now in the last 2 weeks before summer holidays – and in true style school is giving them so much work. She says she’ll write to you ASAP!
Not a lot else really happened for Harry in June, except for a weeks respite in Portugal and the odd day that was nice enough to get the pool out.
As I’m writing feedback suitably late, we have now been to the Post Pals annual BBQ which we really enjoyed! Thanks again to Viks, her parents and helpers for all the effort. Special thanks to Jan for lending the venue! We brought Megan with us this time, and a new supporter of PP is now enlisted! Ellie and Meg are planning Fundraiser No. 2 with a little adult help!
I am hoping to have some more details within a month or two and will this time write more here so we reach more of you! Ellie did so well last time (£810) and we’d like to at least match it! Ellie and Meg are talking about a Fun Day in our area, probably Newport (Shropshire), and it would be SO great to have some of the Pals there too! So, watch this space!
Update 6th June 2009
We have just returned from our annual respite break in the Med – was just as good as it sounds! Harry’s swimming is getting much better and he is enjoying a degree of independence now – still closely supervised but less directly hands on. He also enjoys a little longer in the pool as opposed to the maximum 20 minutes it used to be. As he is approaching 8 years of age and so far never really had a tan because he’s been covered with sunblock, this time I felt he could ‘downgrade’ to sunfactor 30 and block on his head and other vulnerable bits. Consequently, Harry has a little tan this time and has grown an army of freckles!
Ellie and I had some time to ourselves which I think was greatly needed. Since joining highschool, time for Ellie has been different, with much more homework and less free time. So, she enjoyed the break too. And inbetween my mummy duties with and for the children, I too found a little chill time. So all in all, the break was good for us all.
Our Fairy of many Names has been in touch again – a lovely card to Ellie and we do hope you’ll make it to the BBQ in July! Just like we very much hope to see our Karen again! Inbetween Karen’s travels there’s usually a picture postcard to us so we can keep track of the jetsetting sightseeing journeys Karen has! Kim Ginger and clan have been busy again, Tracey from Bristol sent catty cards, a ted from Melanie Stirling, and some very good art cards from our Viks. Debbie Grey sent some great picture blocks that Harry likes, a beautiful card from Heather in Idaho and the one card that stole our hearts was of a beautiful lady with sad eyes sent from a ‘fellow’ sister which made us both understand, wonder and feel strength from your words. Hanna has sent lovely cards to Ellie too.
As the rain set in after days of sunshine, shorts, t-shirts and swimwear, we dug the umbrella back out and must admit to wondering why we bothered getting the return flights. Having established some less chaotic order in the house, unpacked the seemingly endless amounts of washing that looked nothing like that mountain when it went in the suitcases but seems to have grown inexplicably, the promise of lambchops with mintsauce is simmering on the stove reminding us all THIS kind of grub is just not the same in the Med! Nor is the joy from being a member of our exclusive club and the network of people that keep us going through the not so good times. Without which we would be emptier. So, having caught that return flight and got the umbrella back out, we just hope July 4th will be dry so we dont have to paddle to the queue for the burgers! We really can’t wait to see you all again!
Update 7th May 2009
Easter Holidays, half term and birthday party – all in one month! Followed promptly by major hard drive problems so I’m behind in my ‘Thank you’s’ and updates!
We have had cards for both Easter and Ellie’s birthday – in fact so many that individual thank you’s become difficult. None mentioned and none forgotten – many thanks all round! Hanna, please can you send your address again via email through Post Pals as it was lost in pc disaster and El’s got a letter here for you.
Update 1st April 2009
March traditionally means Spring Cleaning, setting seeds for garden flowers and tomatoes, tidying the shed from months of dumping things quickly as it’s too cold to tidy properly, watching the early spring daffodils bloom, the final attempt of winter before spring inevitably wins and feeding the birds extra who struggle finding much from the ground. March is also the farewell to wintertime and the extra hour gives the impression summer is really here!
Harry had an eye infection – possibly from eczema on hands, then rubbing his eyes, so a trip to the GP’s gave ointments, creams and potions to tackle it all. I think Harry found it all very traumatising and although infection is now gone, it seems certain actions trigger the unpleasant memory of ointment in his eyes.
We’ve spent some glorious afternoons in the garden and it’s a real joy to see Harry actually playing, seeking the next entertainment and knowing what to do with the different activities on offer in our garden. This was something I would never have dared to hope for never mind expect!
We’ve not seen the specialist since last Summer – I am still slowly getting used to life without the Keto diet and I so enjoy watching Harry eating a whole icecream!
This month Sarah Gilligan sent a little poem for Mother’s Day – thank you very much! Tez sent Harry a fab bouncing crow – when we send it flying, Harry giggles! Thank you Tez. Our Fairy of Many Names has been in touch too with Ellie – nice to see you’ve not forgotten us. Post Pals sent Harry a gorgeous Teddy who now co-lives in Harry’s big bed! And plenty of mail from Hanna – Ellie says she’s sorry she’s not written but they’re so busy at school, she’ll write in the half term. It seems Kim Ginger has nearly involved her whole village as Harry received finger puppets made by people attending a craft afternoon! They’re great! Finger puppets are easy to make pretend play with, an elementary stepping stone in speech as it demonstrates ‘turn taking’ which speech is made up of – we’ve been playing with them for Harry. Not quite sure what he really thinks of them but like the drumming and turn taking, I guess the ‘penny will drop’ eventually so we persevere!
Harry continues to take Omega 3 and one tub of blueberries (research shows good results in repairing brain damage) per day, as recommended, and he observes us making words through new eyes. He is trying to repeat the word ‘Baby’ and has a ‘bebe’ sound distinctively different from any other sounds he makes, so we think that is Harry’s version of ‘baby’ – we patiently try to include other words and maybe, just maybe…
We’re looking forward to the Easter Holidays – Ellie is turning Teenager (HELP!!!) on Easter Sunday so the Easter Bunny will have to compete with the birthday celebrations!
Wishing everyone a lovely April – Happy Easter too and hopefully the weather will be great for enjoying the outdoors!
Update 28th February 2009
February – the month of intrigue and secrecy! Oh yes, Valentines Day! Both Ellie and Harry had 2 cards each – they kept Ellie guessing for ages! So, thanks goes to ‘Sx’ and ‘?’!
Then Kim sent some lovely cards and we had the best stamp I’ve seen for ages was ‘Little My’ from the Moomins all the way from Riina in Finland 🙂 I remember watching the Moomins as a child in Denmark as I was growing up, and loved the adventures they got up to – not sure how big the Moomins really ever were in England but to me it was a step back to my childhood!
Ellie had a busy week skiing in Wagrain, Austria and got pretty good at it. Having never been skiing before, she was quite chuffed coming an overall number 3 on the very last race of about 60! She came home in one piece with a medal and certificate and other goodies. Thanks to Viks for the lovely card she had sent as a ‘Welcome home’.
Harry has now lost both his front teeth – hehe! The first 2 he lost got swallowed but the 3rd one got spat out which I was really pleased about so I could make the Toothfairy flutter by! The toothfairy came to Ellie without fail and she was a little suspect that the same didn’t happen to Harry so I explained she won’t come without ‘proof’.
I keep being prompted by Harry’s school to try to establish a parent group as so many parents struggle alone. We are in the early stages of setting up a ‘Skill Share’ for parents, carers etc, to try and see if we can be a support to each other or if we could put our achieved skills to some use or other.
Nothing much is new on the Harry front. He is being assessed for a new wheelchair with the usual months wait. Otherwise, Harry is just Harry – mostly happy and chilled enjoying school. Now the weather is less freezing and more ‘outdoor’ inviting, we spend more time going for walks or visiting places where we can enjoy the outdoors too.
Update 10th February 2009
We are at the end of a very cold spell that even saw snow with snowball fights, snowmen on most street corners, and a great opportunity to dig out the winter warmers! Hopefully the frost has been around long enough to kill off all the bacteria lurking about trying to find a victim for a bad spout of cold or runny nose!
It’s been a very quiet post month this time with most of our mail coming from our Hanna – thank you! Gaynor sent some fab glowsticks that we’ve been playing with during the evenings – Harry tracing the patterns in the air and being quite fascinated! Thank you again to Viks for the lovely blanket – Harry’s new favourite.
Harry is still enjoying good progress and we’re concentrating now on finer motor skills like drawing and picking up smaller things. We’re moving onto self help skills – even the task of washing hands and face as well as helping putting clothes on and off. We are also working on speech. We’re not directly trying to make Harry speak, although it would be lovely and that is the overall aim, but before actual speech is the understanding of ‘turn taking’ so we do lots of things in taking turns – like drumming, which Harry really loves!
For all Ellie’s efforts in raising £810 for Post Pals in October, she received a BBC Blue Peter Badge – much to her pride! Thank you to Viks for doing the necessary!
Ellie is off to Austria on a school ski trip this half term and she can’t wait! It’ll be a quiet week with only Harry and me but I’m sure we’ll spend half our time in the local pool and the other building brick towers that Harry is really into now!
I shall also be edging another year mark in my seemingly endless line of birthdays – however after about 21 it often becomes a non-event!
We hope you’re all making the most of the snow with as little inconvenience and disruption as possible – we’re counting the days for spring and the promise of summer!
Update 5th January 2009
It’s early January 2009 with the festive season just behind us. December started out so well – being organized and prepared. We were meant to go to see Santa in Harrods with a friend who helped so much in Ellie’s fundraiser for Post Pals back in October but this was not meant to be. With the death of my Father in early December and subsequent funeral, all my plans were thrown a bit.
Harry’s last day at school was also not quite to plan as the heating had broken, so when he arrived it was only to turn back home and start the Christmas holidays early.
AnnMarie was our Reindeer this year – thank you very much for all the love and care you put into your cards! Post Pals sent Harry 2 glow sticks, Debbie sent some play doh, Julie Barrett remembered Harry’s fondness for musical ted’s and sent a great ‘Rise’n’Melt Snowman that has given us all endless fun! Our little Hanna sent Harry a super speed bike that makes Harry giggle when it zooms round – thank you Hanna – I’d like to send a proper card but don’t have an address. The youngest Elf must be Jared (aged 2) who sent Harry a Push’n’Go Tractor, a water snake, crazy bubble buster, play doh, toy car and a musical book! I dare say Mum Sarah helped Jared just a little bit 😉 but kind thanks all round!
I know strictly speaking its Harry who is the ‘member’ of Post Pals but I dare say Ellie has stolen the hearts of one of two Post Pals helpers! Post Pals sent Ellie a little something, Julie B didn’t forget Ellie either when sending to Harry, Debbie ensured Ellie was busy for hours and keeps popping back to track development and I’m sure you know exactly what I mean! Debbie, Ellie has made you a card but we have no address – could you please let us have one? Our faithful Fairy of Many Names didn’t forget our Ell either and our thoughts went your way several times – you know why. But most of all, I dare say ‘Santa’s Elf’ has really took Ellie to heart – as we you. You sent Ellie some girlie stuff and really lovely things too.
We received cards from Elizabeth and Jack, Despina from USA, Maria and Michael, Sarah, Julie B, Helen T, Kate Dee, Leila, Debbie, Debbie Robinson with a great card calendar, Jared, the most beautiful folding card from Annue and James, our Karen and lastly our little Hanna.
Viks must have a mention too as she must have spent hours between being poorly still, preparing cards etc for both Harry and Ellie, thanks Viks.
As I round off another Christmas and cast my glance to the new beginnings of the New Year, all that remains is to humbly thank everyone who makes time and effort to share their joy with us and allow us to be a little part of their lives. Post Pals has become such a big part of our lives and has given us such belonging – I now can’t imagine life without!
Update 5th December 2008
November came and went fairly uneventfully. We tried to collect outstanding pledges from Ellie’s Post Pals Fundraiser in October but we’ve now settled on £810 being the final amount Ellie and her friends managed to raise! There is still a couple who keep saying they have collected but keep ‘forgetting’ to bring in which is such a shame for the smiles that cannot be sent now. But we have to draw the line somewhere. I cannot begin to thank everyone enough in your fab support of Ellie – the cards for good luck and the well done ones after!
Harry enjoyed going back to school after the October half term. The Christmas preparations have started in earnest now with the annual Christmas play taking place next week, where he will be an Egyptian prince in the schools adaptation of the nativity play.
We got the Christmas decorations up for December 1st, with outside lights too as Ellie had wished for these for a long time. So we now sit and enjoy the lights in an evening with Harry leaving the decorations in peace this year! Maybe I shouldn’t tempt fate by saying this, as in previous years by the time Christmas comes Harry has halved the decor from when it was put up!
Debbie Robinson sent a fab calendar card that now adorns our festive display. We have cards from Maria Carney and Despina Ropa too, cute kittens and puppy from our Hanna with lots and lots of smilies, our Fairy of Many Names seems to have a finger in every pie (you know what I mean!), a brilliant Reindeer letter sent via George! Congrats on your baptism! And last but by no means least thanks to our little circle of faithfuls, Karen for updating us on France and fab cards!
Update 2nd November 2008
The spookiness of October! Knocking doors, giving folk a fright! What a great night Halloween is! Ghosts and witches, pranks and laughs – Ellie looked forward to the annual pumpkin decoration and getting dressed up. Hanna sent Harry some great spooky bubbles (and as Harry can’t blow) Ellie used them as trick in the ‘Trick or Treat’ so when someone dared to say ‘trick’ they got bubbles blown over them! I think we blew more bubbles over Harry though as he laughs trying to catch them!
October was also the host of Ellie’s sponsored Rollerblade run. After we met at the Post Pals BBQ in the summer, Ellie was rather taken in by the whole Post Pals concept and the huge effort that goes into ‘brightening a kids day’ and she wanted to give something back to Post Pals as they’ve so many times brightened our lives with our struggles with Harry.
Ellie had long since decided she wanted to rollerblade from our village to the next which is about 2.5 miles. Her mates from school wanted to join in as well as her mates from Newport Girls Football Club that she plays for.
We arranged for Staffordshire Police to give the girls a ‘Blues and Two’s’ Escort rounded up at the back with a Paramedic in an ambulance – just in case someone should go flying on the road – but no accidents luckily!
The procession ended up at the Boat Inn in Gnosall who kindly let us have a BBQ there which Julie and Damian were able to chef with kind donations of burgers and sausages from the Family Butchers in Gnosall. Refreshments for the girls were provided by The Bakery who also gave a bag of sweets to them all!
Vikki directed the press releases for Ellie’s event and we saw her in print in different papers! Blue Peter here we come!
In both donations and sponsorship, we hope the final will be close to the estimated £700 but we are still collecting. We have made an appeal on www.everyclick.com/elliegilmore with a £50 target but we’re still a bit short so please donate a little if you can afford it! Such a great cause!
Fergal Hayes, Kim Bows, St Matthews Sunday School and Karen (Sami) all kindly sent something along with both Ellie’s and Harry’s schools each collecting. The Taxi staff, old (Barbara and Colin) and new (Jackie, Stephen, Charl) that take Harry to school also joined in as well as door to door collections in both our village and the one we ended up in on the rollerblade run. Other girls taking part individually got sponsored too. We got all the participants a Post Pal t-shirt printed so they could keep it as reminder with a certificate of completion which was kindly sponsored by George Yeoman – builder from Gnosall.
Many, many, thanks all round – we felt we were so successful we might well do it again next year – lets see!
The half term is drawing to an end, it just goes so quick! We’ve had a lovely week off even if the weather is both cold and wet. Thank you to all the ones who sent Ellie good wishes, belated birthday wishes to our Fairy of Many Names, and many thanks too for all the usual mail. Hope you’re back from a nice holiday in France Karen!
Update 8th October 2008
September means back to school and no more lazy days – we’re full on back into the swing of hectic days with lots of homework for Ellie!
Harry is now totally off the ketogenic diet, 4 1/2 years of strict food regime and we’re adjusting to a free choice of meals! We’ve found Harry is rather partial for a cake when he comes back from school! We’re also experimenting with a range of foods previously not allowed for Harry. The first few weeks were as hard as when first on the diet as Harry point blank would refuse some foods because of the look – he just refused to open his mouth! But as time goes on Harry is more open-minded to different foods.
Harry’s last ever fit was in 2004 when he had corrective eye surgery. Since then, we have had follow-up appointments to track progress with eyes. First 3 monthly, then 6 monthly and the last 2 years have just been annually. I took Harry again this week, and now they suggest Harry is discharged all together! Although Harry will never be completely free of the damage from the childhood epilepsy and he is ‘profoundly learning disabled’ it is still strange to have parts of Harry perfectly normal. I slowly see the tight schedule of appointments for this and that reducing, and feel a little scared of the normality of it all with the reduced specialist network I have come to both rely upon and seek assurance from.
After meeting Post Pals in the summer at Vikki’s BBQ, Ellie was really touched by the effort Vikki puts into Post Pals and her personal struggles to balance being poorly with the work of Post Pals. Ellie said a while back she would like to raise funds for Post Pals and we’re now at the stage of being able to do so!
October 19th 2008 is the day when Ellie and a bunch of friends will do ‘On Wheels 4 Post Pals’ fundraising event by using any wheels (bike, rollerblades, scooter etc) to travel from one village to another escorted by Staffordshire Police with flashing lights! Ellie is now busy seeking sponsors and donations in preparation – Mum is very busy trying to coordinate it all!
If you feel you would like to sponsor Ellie for the 2 1/2 mile ‘On Wheels 4 PostPals’ – Ellie will be on rollerblades – then please send your donation to Harry G’s usual address. If you send by cheque, then please make it payable to Post Pals but send it to us so we can tally the total and know how much Ellie has raised!
It’s been a quiet Postie Month but our round of thank you’s include Karen holidaying in France, Kate Dee, Hanna, Linda B and Marianne from Finland!
Update 30th August 2008
Well, it’s official now! Harry is OFF the diet after nearly 5 years! It’s a whole new food-world ‘out there’ and there are so many things to try out! Harry won’t remember food before the diet and he’s totally forgotten how he used to love nothing more than a buttered slice of toast with a hot drink before bed! Now he won’t touch toast or bread! I am learning that Harry likes his meals best if they look like ‘they’re supposed to’ and he is finding new tastes, looks and textures difficult – so small changes at any one time! The first few meals were very difficult for me to prepare and give Harry – I guess I was expecting seizures. It was difficult NOT to weigh the foods that i have had to weigh down to the 0.1 of a gram for nearly 5 years! Eating out is not going to be acceptable for Harry either, at least not yet. We’ve had one or two days out and tried to order something of a menu – but he’s not daft!
After our Devon holiday, Ellie went to Denmark with her Nan and then she went to Germany to our relatives to learn the lingo and go to school. She’s back now – I don’t know how much German she’s really learnt but she has mastered a fair few ‘undesirables’…
The nicest card arrived today from the Post Pals team saying ‘No more keto food’ for Harry! I don’t know how you make those cards but they’re brill! Karen sent some beautifully made art cards – have a good trip to France 🙂 and Ellie says she will do a sponsored rollerblade run from our village to the next (about 3 miles)! She will arrange it when school is back as she’s hoping her mates will join in! Hanna sent a cool tiger postcard from the zoo, Rufus and Sheila sent a card too, and a frog card from Hayley – how did you know my favourite animal is a frog? I love the sound they make! Ellie had some mail too and she would have liked to write back to Jennifer Castle and Eleanor from Scotland – but there’s no return mail – thank you very much anyway! Marie sent a lovely card too. To Kat – Ellie has just dropped a letter in the postbox for you, hopefully you’ll get it before school! We got lovely fairy mail from our special ‘fairy of many names’ – as always! We’re thinking of you especially at the moment.
Now the only remaining August thing is to get ready for school and nobody in this house wants the holidays to end… We’re hoping to squeeze a trip to Thorpe Park in before, so here’s for the weather! Hope you’ve all had a lovely summer, although I heard it was the wettest summer since 1912 – not that I can remember! Until next time – lots of love from us all xxx
Update 8th August 2008
July saw some important dates for us being involved with Post Pals – namely the first ever BBQ at Viks! It was fantastic to meet all the ones who braved the distances and put themselves out so much (Vikki’s Mom and Dad especially who opened their home). It was really nice to put a faces to the emails and pictures! And hopefully Vikki will take the hint and make this an annual event so we get as many as possible involved – sponsors, volunteers etc!
July also saw the schools break up and in our house that means no more getting out of bed for a certain time – we can laze about all morning if we wish! Not that we’ve had much opportunity as we went to Devon for a week in a caravan with Harry. During this time we arranged to meet up with St Matthew’s Sunday School – thank you for sparing us your time, it was lovely to meet with you!
We enjoyed our time in Devon, although it was too hilly for Harry to really enjoy, but he certainly enjoyed the outdoor pool and when it rained we just went inside so he was quite happy!
We have our usual round of thanks this time for cards and little surprises 🙂 and we’re by no means forgetting our faithful fairy of many names.
We also have some great news – HARRY IS OFF THE KETOGENIC DIET! Still no fits or even twitches! He seems much more responsive and listens so well, bless! It is still early days, today is only the 4th day on normal food, but so far so good! I am in close contact with the dietician and between us we share an amazement of the power of food as it seems to have stopped Harry’s fits. He is still left with autism and a huge amount of brain damage – those of you who met Harry at the BBQ will understand much better – and still no speech, but we just can’t give up trying to teach Harry things.
Enjoy the rest of the summer holidays before they all too soon come to an end!
Update 1st July 2008
June saw Harry turn 7 years old and we got lots of cards! We received them from The Post Pals Team, St Matthews Sunday School in Torquay, Julie in Beer, a super dolphin card from Sarah in the Brownies, Maria in Durham, Grace and Linus, Elizabeth and Jack, Helen F, Linda B and Kew Gardens and Despina in San Franscisco. Karen sent a super bird and star shaped tambourine, Hanna sent colouring pens and finger puppets, Helen sent a dog in his car from John – and no month would be complete without our Fairy of Many Names. Ellie has written to John and Abbie but then realized we have nowhere to send it to!
Harry enjoyed Sports Day at school where he came an overall 2nd and got a Silver Medal! School is slowly winding down for the summer holidays and they have more excursion days and other things on the program to make most use of the lovely days.
Harry continues to do really well on weaning off the diet. We steadily increase the carbohydrates and reduce the fats so slowly his meals are beginning to somewhat resemble more normal foods! We are to introduce Harry to rice, spaghetti, toast and the like but early interest in toast is fleeting to say the least! I offer, Harry sticks his tongue out to have a quick taste and then shuts his mouth firmly! For a while now, Harry has enjoyed Vanilla Cornetto Ice Cones and I’ve removed the nuts before giving it to him. He would eat the ice cream but not the cone nor the chocolate in the bottom. Last week he began nibbling at the cone and has decided it is both ok and enjoyable! His ketones are maybe beginning to show a reduction but there is no sign of seizures!
Harry still receives 1:1 support at school but I would estimate with 4 years of seizure free that this support will begin to be reduced as his needs are less. His neurologist is also preparing me for life without neurology and diets – so I guess the day is coming when Harry will be discharged from these and will be managed by the local paediatrics. But there is still much work to do in improving Harry’s abilities. He still has no speech although we work hard on this now with the much better program from Speech and I am slowly beginning to look at autism and ways to handle, cope and improve. I am considering the Son-Rise Program, US based and very intensive. It has good reports and results.
We are really looking forward to the Post Pals BBQ which will be the start of the summer holidays for us. We then go to Torquay for a week hoping to visit Brainwave who gave me endless knowledge and support in the early days of struggle. If St Matthews Day School would like a visit, please get in touch as we’re not far from you in the second week of the summer holidays.
Update 3rd June 2008
We’ve just returned from a respite week in Portugal – sun, sea and water parks! Both Harry and Ellie had a lovely time! I finally solved the problem of Harry using nappies still but knowing he’d want to go swimming on holiday! For anyone with the same problem needing nappy proof swimwear, try visit www.fledglings.org.uk who have all sorts of things you can’t find anywhere else and I can vouch for the swim shorts that did what ‘it said on the tin’!
Ellie had mock exams before the half term and was really looking forward to a chill week. Going to high school is not as exciting as it appears in primary school…
Harry is doing well on liberalizing his diet. Still no fits – it’s been over 4 years now! But Education have now stated as his 1:1 extra funding was facilitated due to the danger to himself from his seizures, they will re-look the need next time his Statement is due, as he is now seizure free. I am beginning to expect that will mean Harry no longer qualifies for this. There are so many improvements with Harry – of which I am endlessly relieved of course, but there is still a long way to go. His autism is now being looked at in more detail combined with extra speech input so that will be the new area of effort for us all.
It’s been a quiet posty month – guess that’ll change with Harry’s birthday on June 13th! Our round of thanks though goes to Helen who has sent Harry more fab tapes, Abbie and of course Kate.
Update 30th April 2008
April has seen the last attempt of winter, but it looks like spring is winning at last! Harry is enjoying more time outside and being swung patiently on his new swing. We have tried one or two different designs but have given up the more modern steel tube ones for the more traditional wood, as this is much stronger and Harry can swing without the frame coming out of the ground!
April also saw Ellie turning 12 in Pizza Hut style and a swim party too. She had a great day with lots of presents from our Post Pals friends to whom we extend our gratitude. The round of thank you’s include our ever faithful Kate Dee, Karen for the growing friends, John for his cool facts that make us laugh, some super playdough and a super fast car from Hanna, a new friendship from Abbie to Ellie as well as a beautiful card from Kat M to Ellie – your card is on Ellie’s desk, not sure if she has written to you yet as she’s drowning in homework and end of term exams but your hometown isn’t far from ours 🙂 and lastly, our love goes to Linda B from Torcross too.
Harry is making some progress with the new intensive interaction as per speech assessment at school. He has been given some signs to work with and has taken a liking to the one meaning ‘Register’ and the taking of the register up to the office. He manages this now with minimal help and received ‘Pupil of the Week’ for his hard work. School insists he is making lots of different sounds and some new gestures too – I experience a lesser success rate at home but am assured this is normal. However, I have taken Harry to town twice now without using the wheelchair. We didn’t shop around all day or anything, but had a small planned walk and he did this fine! We have to stop to sit down every now and then but this is still very good!
We are on a respite break at the end of May and are hugely look forward to this! We haven’t had a week off for a year now and so much has happened with Ellie going up to high school and Harry too.
On a final note, so many have told me for years to write Harry’s story and make a book. Well, I did listen and I’ve mulled it over now for ages and thank you for your faith in me – yes I will write Harry’s story. So, if you know of anyone daft enough to publish it, please let me know! I’ve made a start and a friend has read what there is so far and I feel confident to carry on, but as to finding a publisher! I’m in the dark here so any help is very welcome and appreciated!
Update 2nd April 2008
There’s still no news on the respite. We have had one very detailed report by an independent person put together on our caring for Harry with hour by hour account of how Harry’s disability affects our lives. Then we had another report by local Health, but by no means as in depth or thorough, but more an insight into our lives. And another month has ticked by without a decision of whether they will or will not reduce the help we receive…
It’s been a nice month though with the promise of spring after a last attempt by Mr Frost to make it bitterly cold and windy! With the turn of the clocks, the temperature also rose enough to not have to wear hats, scarves and gloves in an attempt to avoid frost bite and we enjoyed an afternoon pondering around the garden centre looking at all the lovely coloured plants. The Easter bunny decided to lay his eggs inside as even he thought it too cold – so we went hunting inside!
We had some beautiful cards from Karen, Helen, Kate Dee, Elizabeth and Jack, Erin F’s Nanna and Grandad, Maria and Michael, Julie Barrett and from John we got tongue twisters and amazing facts! Thank you all round!
Harry is back to school earlier than Ellie, so she is really looking forward to some Mummy time for a whole 3 days as well as her birthday! She is turning 12 and has persuaded me to let her take some friends swimming and a pizza afterwards. She is so excited!
We are doing a last attempt speech wise with Harry this term. We have worked hard putting a program together consisting of interactive time followed by picture prompts for certain activities Harry likes. I am convinced he understands our speech, words and ways of communicating, but he is unable to join our way which this program is designed to aid him. Even if it fails, it does not mean that we have failed, just that Harry isn’t ready. It might just be that we try and try and try, nothing happens and when we least expect it…
We are really looking forward to Viks BBQ idea in July and plan on being there! It would be so nice to meet some of the other guys involved in Post Pals! We have been involved for such a long time now that Post Pals are kind of part of the family.
Wishing everybody a lovely spring with lots and lots of outdoor weather!
Update 2nd March 2008
February always keeps me on my toes with so much going on! Pancake Day, Valentines, half term and not forgetting my birthday (21 again in case you wondered) and it’s the shortest month of the year with so much packed into!
Harry and Ellie got a Valentines card each – I suspect Post Pals related, however, that is just my guess. Ellie was truly puzzled but quite chuffed! Ellie attended the first Valentine’s Disco where the boys and girls schools met up – she got asked out 5 times but said ‘no’ to them all 😉
Harry had his Annual Review with school and it is becoming apparent that the damage to his brain from West Syndrome has left him more in the ‘profound’ classification as opposed to ‘severe’. We are slowly implementing a new speech program being acutely aware Harry is probably not ever going to speak, but it’s worth a try anyway. He already communicates by different means – if he wants to go outside, he’ll bring me his coat or one shoe. If he wants a toy turning on, he’ll bring the toy to me or pull my hand towards what he wants. I am mindful to the new complication of Harry being on the autistic disorder spectrum and have requested his Statement of Needs to be re-done as well as a closer look at what they actually do with him at school. I have also requested the local Child Development Clinic to observe Harry as to find out the more exact detail of the autism so the rest of Harry’s care and provision in school can now reflect this. As I always instigate all these things, it often makes me wonder what happens to those children where Mums and Dads are not as involved as I am with children…
We still battle on with the respite issue… no decision has been made yet, so we wait to see what their findings are going to be.
We’ve had some great mail this month and some super presents too! Harry has been asked to join a new group meeting on a Wednesday behind the shed 😉 Harry says can we not meet on a Saturday morning because it’s going to be hard fitting it in on a Wednesday! xxx
Update 4th February 2008
We attended the speech appointment at Great Ormond Street this month to see if we could find out if Harry is actually likely to speak and also as I’m so unhappy about our local Speech and Language Therapy service locally. They reckon as ‘Harry is motivated by cars, his adult helper should say ”beep” five times, look expectantly at Harry and wait for him to say ”beep” back’. Personally I’d have preferred ‘Mum’ or ‘I need the loo’ to ‘beep’ but there you go. So, this is assuming Harry knows how to react to an ‘expectant’ look…
It soon became clear that the Professor agreed with me and that Harry has a streak of autism which is now diagnosed. With that came the answer all by itself as to whether Harry is likely to speak – no. They also suggested the school Harry goes to may not necessarily be the best one for Harry and that his Statement of Educational Needs should be updated. So back to letter writing and meetings!
We are also at long last having Health carry out their investigations into keeping respite unchanged. I’m pleased to say it was started off by a really nice lady, working independently and therefore unbiased to the financial state of respite, who carried out the most thorough insight into our lives with Harry. So, I am hopeful someone will listen!
Harry is having his diet adjusted and changed to be more accurate, and with that, his ketones are leveling out too. He seems unaware of the background work to make this possible!
Otherwise, we carry on with our day to day routine through all kinds of weather as no two days seem the same anymore with Ellie having tons of homework which keeps her out of mischief! We are greatly looking forward to the half term to get a breather 😉
Our thoughts are particularly with a special person with many names, Kate Dee, who is going through a tough time at the moment but always finds time to think of us too. Stay strong Kate!!
Update 18th January 2008
Harry is now successfully totally OFF any medication except his Ketogenic Food which is being reviewed and fine-tuned. He remains seizure free!! Having steady and good results on the diet, I knew to anticipate the withdrawal of Phenobarbitol, which Harry has been on since his eye operation in 2005. My anxiety about reducing his medication week by week was still great though and we all kept a close eye on Harry in case he would have a seizure, but the opposite seems to have happened! He is far more alert generally, with small improvements in areas like undressing and making new sounds.
Harry is now 6 and still not talking. Making sounds yes, but nothing recognisable. I am convinced he understands simple commands like ‘we’re going in the car to get Ellie’ or ‘it’s time for tea’ or a particular favourite is the ‘it’s time for shower’ where he often repeats a sound after I say ‘shower’ but it sounds nothing like ‘shower’. I say it again though for him to repeat his sound and there we have a pattern of me repeating the right sound/word and Harry making the word into his own. So, to finally put to rest whether or not Harry is likely to ever command words, I have an appointment at Great Ormond Street for Speech Therapy at the end of January. Not sure what to expect, but it’s got to be worth a try.
The children went back to school after having enjoyed a lovely time off for Christmas. Harry received some really lovely cards from the Reindeer that hung over his bed as they arrived and they snuck in a lovely present too! Our extensive list of ‘Thank You’s’ has to include our Kate who sent Fairy Cards, Manicure Set, Lip Balms, socks, Magnetics to Ellie and Space Blanket, Chewy Tube, Glo-stars and a gorgeous spinning set to Harry. The Reindeer must have been eavesdropping too in working out the Bratz accessories and the JoJo CD for our Ellie! From the Post Pals Team came 3 figurines and a super microphone too. Helen sent a Tigger which is now on Harry’s wheelchair. To Erica from USA, winter wishes from a very cuddly looking penguin 😉 If I have forgotten anyone, it is not intentional.
So 2008 is now safely here with the unpredictable weather in the form of more floods! Sometimes I think I’d rather swap all the water for a bit of snow, but then I remember the treacherous roads just being even more unsafe with the black and dirty snow, so maybe we’re better off in wellies!! Plus it’s kinder on the heating bills! We are desperately looking forward to spring with the promise of warmer weather and lighter evenings and taking the dogs for walks over the fields without bringing all the mud from the roads into the house. It seems to be a while since we had picnic weather and were able to watch the corn in the fields sway in the gentle wind… alas for now, we have more rain…
Here’s hoping you all stay safe through this extended downpour and avoid the floods. Repeated thanks for all the love and care you put into the joys of Christmas for Harry!!
Update 2nd December 2007
November saw the last of the peace before the pre-Christmas rat race and we’ve tried to rest after the long awaited and delayed finish of Harry’s new bedroom. The builder has long since lost heart although a fair few bits are incomplete but complete enough for Harry to ‘move in’ which he has eagerly.
In my 17 years in England I have for the first time ever upheld our family tradition of Christmas baking and decorating the first weekend of December 😉 helped along by the visit of my Mum to show the children how we do things from our home. So, I write this with full Christmas biscuit belly with a tad of nougat rolled in marzipan all decorated nicely and the house smelling of orange pomanders we finished just after tea. This year, Christmas will be like it should be for me 😉
Our Fairy has been in for a body MOT and our thoughts are with her now we know what that entails! Poor Fairy!! We think of you and send you fairy wishes! Thanks also go to Sami for her lovely card and bits.
We are going to the German Christmas Market for the children to go on the merry-go-round which Harry particularly loves. We normally have to prize him off the thing!! All the lights are so lovely too.
Harry went to clinic to see the specialist and we have to fine tune his diet even more now. His cholesterol is too high and immediate adjustments of food have to be made. Also, we are taking the brave step to get off the last of his epilepsy medicine, which so far is going well. Halfway to NIL, still nothing to report in the seizures.
He is doing really well with his riding and they say that he’ll soon be able to ride with no walker by his side!! His balance is extremely good on horseback and he loves the movement!
We wish everyone a stress free December (haha) as well as best wishes for a lovely Christmas! xx
Update 9th November 2007
October brought half term and Halloween, colder weather set in too so out came all the winter gear and the swimsuits and shorts were put away. The autumn has been particularly colourful this time with lots of leaves to kick and conkers to play with.
Our fairy of many names had kindly allowed us to join in with her birthday celebration and we were very proud to meet with her to present her with a birthday cake! We sang ‘Happy Birthday’ too and I’m quite sure after that she was happy to let us go again as we’re not the most melodious or in tune of people!! We felt so very privileged in being able, just for once, to give her a little pleasure back after the many countless pleasures she gives to us.
We had some fab cards for Halloween and some scary bits too!! Our round of thanks also includes Nicole D and Mum for sending Harry a little toy, a card for Ellie and letter for Harry.
Harry’s extension is nearly complete now. He has moved in, but the builder is not quite done and keeps nipping back for one or two things. Having Harry downstairs is just fantastic and he loves his new bigger room too 😉
Update 30th September 2007
September saw the end of the summer holidays (if we can call it ‘summer’!!) and the going back to school. Harry went happily, although I’m quite sure he’d forgotten what it was all about! He was soon back in the routine though!! This term sees horse riding again which Harry loves and also a weekly swim in our public pool. Ellie has also gone back to school but she has made the move from primary to high school and a grammar school at that! It is a big change for her with lots of homework every day, something we didn’t know from primary school at all! It has been hard, and to some extent still is hard for Ellie to get used to, but I think we’re getting there now.
Social Services have had their meeting to review the decision to reduce our respite by roughly 2/3’s and they’ve decided to postpone the decision. Now they want Health to observe Harry, which in principle I agree to, HOWEVER if they are going to observe Harry, then they can do it properly and come for the WHOLE day!! Instead of the hour long visit we normally receive, where they spend half the time drinking a brew!! So, I’ve insisted they send someone willing to try what Harry lives every day – and guess what?! Not heard back yet!!
I will keep you posted so you too can give your local Social Services HELL if you need to! They want to remember we’d ALL much rather have normal kids with NO health issues, delays and other struggles, so chances are we don’t ask for things we don’t need!
Our round of thanks goes this time for a most beautiful windmill and some beady named cards. The mill is in one of the post outside and looks lovely and the cards are on the bookcase for Harry to see. Not one feedback would be complete without a mention to ‘you know who’ – fairy of thousand names!! Every time she flutters her fairy wings she spreads a little happiness and we are honoured to have her in our lives. With that also very pleased indeed that our fairy has allowed us to visit her for her birthday – we can’t wait!! We intend to sing her a birthday song but afterwards I shouldn’t wonder if she’d be glad to see the back of our completely tone-deaf ensemble!!
Update 1st September 2007
Amidst extension works, daytrips and yet more rain, we’ve made the most of the summer holidays which are now drawing to an end. We saw the busy humdrum of Chester Zoo and got special passes for the children at Alton Towers to Ellie’s delight and Harry particularly loved the tractor ride!
Ellie goes up to high school in September and her bag is packed with new stuff for school. Harry is back too with a new teacher but the same group of buddies.
We battle on to keep our respite unchanged against the wishes of Social Services and should have an outcome soon.
Imogen, Nyla, Robert and Claire have made Harry some really fab cards!! Thank you very much!! Our usual round of thanks goes to our Fairy of many Names, who is in our thoughts at the moment as things have been a bit rough. We have arranged to meet shortly, in the week of her birthday, to cheer her up a bit like she always does for us 😉
Kind thoughts to all until next time xx
Update 4th August 2007
July saw the end of the school year for both Harry and Ellie – sports days for both the children were re-scheduled several times due to the weather and in the end, none of them took place.
We had a leaving service for Ellie who is going to grammar school in September – a tearful goodbye to all her friends! Harry had the prize giving where merits and certificates were given to all.
Whilst Friday 13th is an unlucky day for some – for us it was a truly remarkable day as Harry for the first time EVER spoke ‘Here I am!’ in response to the registration song they do every day at school. I have always been fairly positive he will speak and I am certain he understands our words to him so this has given me the extra oomph to never give up trying! We are due to see the neurologist next week and I will ask him to refer us to Great Ormond Street as I’ve come across a Speech Therapy for Harry’s syndrome.
The summer holidays are upon us now with lazy mornings and chilled days. Lovely! Ellie is attending an out of school programme that gives days out and things to do, and for Harry we also have days out.
Social Services are forcing our respite to change rather drastically from the well working Direct Payment system to part DP and part Family Link. This is an unwelcome change as well as reduction of our help, so I’ve started another line of appeal and complaints. It amazes me that those to know of the least impact of a disability have the greatest say. One thing I’ve learnt so far though is that we know best – and they find this hard to argue with once confronted with appeal procedure! Just a shame it has to go that far and we have to shout to be heard!
We finally are to have Harry’s adaptations to a more Harry friendly bedroom and bathroom, only been a nearly 4 year wait, so this is our last week without builders before the upheaval starts! We should be straight just before Christmas…
Again a thought to all those more affected by the immense downpours than ourselves, as well as the usual round of thank you’s goes to our Fairy of Many Names, to Helen for sending two really good CD’s of music and to Karen for sending things to ‘chase Mum with’!! We hope you’ve settled in well in your new abode Karen!
Until next time – Happy Summer!!
Update 2nd July 2007
June saw Harry turning 6 years old which he did in style in the Portuguese Hotel’s swimming pool where we enjoyed a week’s respite. For this occasion our list of thanks as always goes to the Birthday Fairy who issued Harry with some bubbly 😉 and bits to keep warm with! Harry also received some birthday cards, a super smart racing car and some cool fly glasses! Many thanks to all!
During June we’ve gone from one kind of extreme weather to another – sunbathing to floods… Last week of June saw many parts of England under far too much water for comfort and our thoughts are with the ones not so fortunate to be on dry land. We got cut off from the outside world for a brief time and had to rescue Harry from a broken down vehicle by wading through puddles and rain.
We now approach the last part of school term before the children drive us parents mad over the 6 week summer holiday. We’re hoping for better weather so we can all enjoy the barbeques and paddling pools outside!
Ellie is winding down from primary school and getting geared up for High School with new uniform etc. She still has the usual school play in July though and last day sees the Year 6’s leave in style in a Limo for town to have a pizza! But hush! This is a secret 😉
Hope you are all well and enjoying what summer is coming our way! xx
Update 4th June 2007
Harry has now had his 2nd anniversary of ‘no seizures’ which is awesome! I think few achieve this on the diet with the original diagnosis Harry had. On the latest kidney scan, we now have the result ‘normal’ which considering he is having 50 grams of fat per meal again is fantastic! We are continually warned to expect signs of obesity but Harry is so active from morning till bedtime, I wonder if this keeps the weight off. Thinking back only 4 years ago when Harry could hardly put one foot in front of the other and tonight he was legging it round the garden trying desperately to avoid me catching him as I wanted to cut his hair!! With the hot weather and going to Portugal soon, I thought I’d use a grade nothing so he won’t be so hot on his head but he was trying hard to avoid the clippers!!
We had belated birthday wishes to Eleanor from Elizabeth and Jack. We hadn’t heard from you for ages and had been wondering if all well. We’re glad to hear from you again and thank you kindly for remembering Ellie’s 11th!!
We had a fab card from Lexie and Mum 😉 with some beautiful pictures stuck on a card! Many thanks!!
Many thanks also to Susanna and family from North Carolina – we like getting your postcards as they are so unusual!
And no month goes by without our Special Person of many names. We hope you’ve settled in well in your new home and that all went well with your body MOT 😉 this week in London!! Ellie has sent you mail but we send you special fairy hugs from here xxx
Update 1st May 2007
We all enjoyed having the Easter half term with the Easter bunny popping by and the lazy days. We also had a visit from our Nan in Denmark who hadn’t seen Harry for about 18 months and was amazed at the progress with him. We are approaching two years fit free this month on the 24th and I struggle to remember just how often Harry used to fit and how different he was. His progress is still awesome.
Our usual round of thanks goes to our special Easter Fairy come birthday Fairy for Ellie who also turned 11 this month. She is an amazing person, so full of spot on gifts and beautiful cards that line our shelves and window sills! She needs no further mention as she most definitely knows who I mean! We also had a fab easter egg chick chime, card and some lollies from our Helen 😉 and some sweeties and an easter card from all you guys at Post Pals – kind thanks all round.
Harry has twice this month been ‘Pupil of the Week’ due to hard work and achieving his targets!! Well done Harry!!
Until the next update – enjoy the good weather! Hope it’s here for keeps!
Update 31st March 2007
Harry is doing really well – as we exit from our winter warm home to the sunny afternoons outside in our village, many people we haven’t seen much of since last summer, stop us in the street absolutely amazed at the apparent progress in Harry. Speech is the most obvious area of delay although he makes himself very well understood! Although school insists Harry is well able to lift spoon from dish and feed himself, this is a skill Harry has chosen to leave well imbedded at school – why not, when I have MUM?!! But oh no – now mum knows and has gone on strike and I have to do it myself!! Harry continues to listen well and understands simple commands like ‘going to car or shower’ or even ‘it’s time for dinner’. This is a pleasing reward for us, working and loving Harry and wishing him abilities the specialists once said impossible – but the nicest of all, is how happy Harry always is! And if he is happy, so are we…
Helen sent Harry a tambourine (Mum is thrilled… lol) which has kept him in the musical frame of mind along with his musical keyboard. He really enjoys this, along with a musical drum and at times it looks like he’s dancing! Movement and music really is something Harry enjoys along with the Teletubbies.
Our fairy of many titles continues, whilst moving from her lily pad to a new lily pad, to send love our way – you know who I mean!!
Oh, on a last celebratory note – Ellie has been accepted to a Girls Grammar School which I am so very proud of!
Wishing you all a lovely time at Easter.
Update 3rd March 2007
Harry continues to do really well both at school and at home. He enjoyed the February half term but I think he was ready to see his friends at school again at the end of the week! We spent most afternoons on playgrounds where Harry, with the abundance of his personality, made himself known to everyone! He seems to have grown another inch lately and if this growing continues, Harry will become a rather tall handsome young man!
We have had some beautiful Valentines Cards to everyone from ‘You Know Who’ 😉 as well as a card from Philadelphia US from our friend Julie. Also a fab bug card with lots of artwork which is in Harry’s bedroom and he likes to sit and look at. Mrs Hibbert sent a little love in a parcel too and for all kind thoughts and gestures, as always, many thanks and our gratitude.
Update 8th February 2007
Harry has settled well into 2007 after our lovely Christmas break. We have enjoyed a not so cold January but the snow seems to be trying to catch up now 😉
We have had some lovely letters and beautiful cards – Alan and Julie Barrett, our faithful Fairy/Elf/Reindeer/Valentine ‘oh she of many faces and names’ and I wonder if our Harry has not caught the eye of Helen who has sent a fab mobile and some super tapes with children’s rhymes in a super cassette box!!
Harry is making a new noise that mostly sounds like a long ‘yeahhh!!’ and when you say it back, he laughs.
Many thanks all round and hoping the winter isn’t too hard for you all!
Update 5th January 2007
We had a super Christmas with nice enough weather to make it to the play park most days. Harry had a beautiful stocking from our Fairy come Reindeer. Harry had some lovely presents, many thanks all round.
Update 1st December 2006
We saw Dr Philips at end of November who was very impressed with Harry’s progress indeed. We are going to carry on with the Ketogenic diet for at least another year which is fine by me. Can do it in my sleep now! Harry is growing nicely even though the diet is very hi-fat but Harry is still lovely and slim. He is quite tall for his age and very strong! Dr Philips on saying good-bye to us said Harry is a truly remarkable story.
Harry continues to do well at school – they are preparing for the Christmas play (7th) where Harry will be a snowflake. His school says he enjoys taking part and moving to the music. This year, he will also see the panto in our local theatre with school which I hope he will enjoy.
We have had a stair lift in our home for about 3 years now but Harry has recently mastered how to use the handrail to walk up – and in good old fashioned style bum it down again!! He finds this hilarious and we have to do this several times a day!!
Our Christmas decorations and lights are up, now just remains the rest of the preparations for the big day!
May we through PostPals wish everyone a merry christmas with lots of fun and laughter. We have enjoyed being with you all this past year – and at harder times have relied on your thoughts of us. I know our little Haz has touched the lives of some of you but I can assure you, you too have touched our lives and made us stronger.
As Ellie many a time has said – Harry was put with us because we’re strong enough to make his life good but thank you to everyone ‘out there’ who helps us getting there. Best wishes to everyone for Christmas and 2007! xx
Update 1st November 2006
We’ve had a lovely half term in October after settling back into the school routine. Harry continues to do well.
Ellie is busy preparing for entry exam for all girls Grammar School in December and is working very hard.
We have had the usual post from our special friend Kate Dee and some good Halloween cards as well!! Thank you to Julie also!!
Harry has begun swimming with a swim ring so he wouldn’t keep going under in the little pool, and he’s developing a kind of Mermaid style swim.
Update 8th October 2006
Harry has had a busy month in September with going back to school. He continues to do really well but the best news was when his reading from the last EEG showed NO EPILEPSY at all!!! This is news I never dared expect and needless to say, I was in tears when reading the letter over and over. Part of me has always known we could beat the first prognosis Harry was ever given and I am so proud to say that we have. Instead of being a child with no comprehension, no mobility or neck control, Harry is as mobile as a live wire, just with a lot of brain damage and delay. I wouldn’t swap for all the tea in China though!
We have had a lot more mail this month – thank you all round! Julie has sent Ellie some fabulous body jewels and a super Tweenies card which Harry loved and a few cards too. An aspiring artist has sent two drawings of beautiful landscape settings that now enhance our fridge, so thank you to the secret sender. We have had mail from Philadelphia and California too – many thanks! But best of all – we had a wonderful opportunity to meet with our Fairy / Reindeer / Easter Bunny / Santa’s Helper and very dear friend, Kate Dee. She has touched our lives more than once, and I am proud to have her in our lives! Meeting with her was something really special and I hope we’ll do it again. Big hug Kate!!
As a very last minute, we decided to have a weeks respite in Portugal again as our more homely respite arrangements are undergoing some changes. So, to re-charge a bit, we went there for a week and have come home feeling 100% better and browner than ever! 😉 Until next time – take care xxx
Update 30th August 2006
Harry continues to do really well! We have had a very laid back and relaxed summer, Harry has enjoyed playing which is a new experience for him and learning what toys can do. He has also begun twirling round and round till he’s quite dizzy!! We have had a lovely bathtime light up set of bubbles, a super little beachball and cards from Kate, Katie and Nicky – thanks all round! We have also arranged to meet with our Fairy in a couple of weeks which will be fantastic! Ellie is really excited as this particular Fairy also has special links with Santa! 😉
On a different update – I have met THAT special someone I’ve been promised really does exist – and he has taken myself with ‘package’ all in his stride. I shouldn’t be too surprised if the forwarding address may have to be adjusted as there’s every prospect of joining households!! So, although the summer ‘got up and left’ for rainy days – we have had a really nice summer all round – just with a bit less suntan!!
Update 2nd August 2006
The Summer Holidays are now here and we’re adjusting to ‘laid back late starts’ days… Heaven!
At the end of Term, Harry attended a School Presentation where he was awarded the Head Teachers Award for ‘Most Remarkable Progress’! Ellie and I attended and were SO very proud of not only Harry but also the achievements of the Staff.
It has been quiet from the Post Pals side but then everybody would be making the most of the lovely summer days! Except our faithful Elf who has spent time in hospital, a little under the weather – and we send her warm thoughts and best wishes!
Harry still enjoys his special diet although there is talk to wean him off very slowly – this being due to possible kidney damage but also that Harry is STILL the only child in The Midlands who has 100% seizure control. The hope is, once off diet, he will remain seizure free. It is now evident that Harry IS learning and his general delay, whilst still there, is lessening. We attend a special needs swim lesson once a week locally, and Harry has in 4 weeks progressed to moving freely in the water with armbands, to most insistently taking the armbands off! He keeps going under but up straight away and the instructor assures me, this is exactly what normal 5 yr olds do! So, another notch on the Milestone Stick!!!
Hoping we get lots more sunshine hours to be enjoyed all round, till next update!!
Update 6th July 2006
Harry is still fit free although there is an issue with possible kidney damage due to insufficient diet. This is a calculated risk I have to take though until the specialist no longer sees it as safe. Harry has now been fit free for 13 1/2 months and he is achieving and learning. His urine acids are raised, have been for more than 6 months, which is a kidney concern so docs arolds the midst of deciding if we have to slowly introduce normal food. This process would most likely take up to a year though.
Harry celebrated his 5th birthday in June – thanks all round. He had some wonderful cards from Post Pal followers and ‘to become friends of our Family’ but Emily, Becky Butlin, Kate Dee, Elizabeth, Julie Barrett and Post Pals deserve a special thank you!! You know why!!
Harry took part in Sports Day at School where Ellie and I watched proudly as he won the Flat Race!!! Once he got the idea and the hang of it – there was NO stopping him! Even the red banner at the end!! Considering the difficulties our children have with suthough.Harryuch praise must go to the dedication of all the teachers and staff at Harry’s school. Harry has gone from strength to strength there.
The support we as a family havButlinived through PostPals is second to none! I am honoured and touched that we inspire families and children, including school children, to write to us and include us in their good wishes. This support is invaluable! Wishing everyone a happy summer – not too hot but not to wet either!!
Update 31st May 2006
Harry has now been on the Keto Diet for 1 year with no seizures!!! He received a box full of balloons (with no sender???) but I have my suspicions!!!! I wonder if the Elf transporter didn’t bring them our way!! The Post Pals Team made a fab cardPostPals the day – many thanks!! We also had some pressies from Elizabeth which we have put up for Harry’s 5th birthday 13th June.
Progress is still marked with Harry – little things like he’ll eat by himself at school but not for Mum 😉 Harry has had his first school report and although the tasks set are simple Keto still represent milestones for the boy who wasn’t even supposed to hold his own head upright or walk.
We’re attending another clinic this week and I already know the dieticians would be prepared to take him off the diet now. I have thought long and hard about this one and don’t think I’m ready for that step quite yet. He will have to come off in another year max they say but I keep thinking ‘don’t fix what aint broken’ and ‘leave the lad alone!’ In truth, I think I’m scared to ‘be normal’ in case the seizures come back. It’s all trial and error with these things but I’d rather not test on Harry! But then, I’m Mum!! Harry, until recently, wore special needs shoes to make him walk flat on his dieticiansad of tip-toe walking as he did. We were assessed again only 6-8 weeks ago and told, no need for special shoes anymore. Whilst this is fantastic news, the normality of it is scary and I seem to cling to the diet in the same fashion.
Toaintse not mentioned but certainly not forgotten – thank you for thinking of Harry xxxxxxxxxxxxxxx
Update 1st May 2006
Harry is coming up for his milestone 12 month with NO SEIZURES this May! 24th May is the actual day! He has grown and traveled far since the first keto meal! The progress with Harry has been un-imaginable considering the prognosis and the diet now offers Harry better prospect. In April we had an early break to Portugal where Harry for the first time ever actually enjoyed the sand and sea! Last time we trfashion.Toe screamed non stop. This time, we couldn’t get him out!
Special thanks to our Elf xxxxxxxxxxxxxxxUpdate was it Ellie’s birthday but also the Easter visit was remembered! It always amazes me how many different ‘hats’ our Elf can wear! Also Sue sent some lovely thiketofor Easter – thank you. Elizabeth and Jaun-imaginablemention too and so do all the other caring folk! Thank you all round.
Update 30th March 2006
Harry continues to do really well – school reported he has signed ‘thank you’ for the first time and I have seen him react when I called his name! That completely stumped me!!
On the recent teacher strike day, Harry stayed at home with me whilst Ellie had to go to school. As he so loves being outdoors, I decided to try to wash the car and also clean inside. Harry was really enjoying walking on the gravel, looking at the stones, plants, bench and other stuff we have outside but his delight was complete round.Updateket came out!! Where all the puddles were, so was Harry!! Splashing with his hands and the water went in all directions!! The car is marginally cleaner now…
Ellie’s best friend, Sarah, is now a nearly permanent part of our family. When PalMail arrives, the girls take it in turn to open and show Harry. This can quite happily take the rest of the afternoon even if that means homework isn’t done! All the mail goes on the back of a door till it’s completely full! Julie sent a wonderful kit to make a mother’s day card which turned into making 3 lots and a whole saturday! Ellie has had a fantastic notebook from Mr and Mrs Buiskool, and in that goes all girlie secrets! And not to forget our Family Fairy – thank you Kate! 🙂
Update 28th February 2006
Harry is settling PalMail well at his new school and he is doing really well. He is mastering new skills and enjoying the more grown-up and independent way of school life. He is still fit free and enjoying his keto diet.
Harry has found the pleasure in hugs – squeezable hugs I should say! He initiates hugs and cuddles, and even comes looking fsaturdayf he wants one! He has been a bit forceful with his eBuiskool causing Ellie and I to have a few bald patches!! We are gently showing him cuddles can be nice too without ripping folk’s hair out!!!
We have had some really nice cards this month – lots of artwork and some really lovely wording too. Many thanks to the guilty parties!
Update 31st January 2006
Harry began ‘big school’ this term anketos settled really well. His day is slightly longer now and he is being worked harder, or perhaps the pace is just a bit faster? He has made some new friends and met a few who left the other school earlier than Harry. He has been practicing eating without help and holding his own cup. We now have fewer messy jumpers sent home every day and I’m wondering if he’s cracked it!
A few thank-you’s to include are the ‘frosty’ Wood’s of Darwen, Mona from Virginia USA, Rhionna from Denver USA, but particularly to Ureshino Junior High School in Japan where a whole class sent Harry a card each!!!
Update 30th December 2005
Harry had a rough start to the Christmas build up with the usual array of tummy bugs going spare. However the week before Christmas, he had found his appetite again and began to enjoy good health. He continues to have excellent seizure control (NONE!!) on the diet and Harry has begun to have a bowl of snayou’s the dining table where he is able to hDarwenmself to snacks when he waRhionnam. He is showing slight different choiUreshinog in many ways which is really lovely. He still loves being outside even if it’s minus degrees!
Our dedicated Elf has surpassed herself this year – I now consider our family to consist of my two children, our pet dog, our Elf and I guess myself!! Since being involved with Post Pals, the love and care that makes this project possible is far beyond what I can understand. However the difference Post Pals makes in our lives, every person for different reasons, is beyond my words.
We have had beautiful letters from a school in Japan, lovely cards and calendars too. Thank you ALL for wanting to make Harry’s and our Christmas so extra special. God bless.
Update 28th November 2005
We attended the follow-up at the Keto clinic where the specialist now says Harry is responding to the Keto diet 100%. Harry remains seizure free from 24th June 2005.
Harry is still more focused, with improved balance, co-ordination and progressive development. He even walks flat on his feet now where as he used to tip-toe causing him to have special shoes. Perhaps Harry too can wear normal shoes??
Harry and Mum did an appearance on ITV coordinated by Birth Defect Charity ‘Newlife’ about how little pbless.Updateold when they learn their child has a special need. Ketoaps you saw us? Many who did have told us how good Harry looks noKetot was a super day in November, not cold, and Harry went outside for a walk! That in itself is great for Harry and was once never expected to happen!
Taking this opportunity to wish all who read about and follow Harry’s battles and victories, a very lovely Christmas! Many thanks for your support in the year – we’d be lost without you.
Update 30th October 2005
Some FAB HNewlifen cards with SO much care gone into!! Many thanks to guilty parties!! Karen’s card is a real treat! Kids loved bugs – can’t say I was as thrilled!!
Nicky has provided lots of fun with super ball and lovely card – Ellie loved your jokes sent via e-mail too! We’ve had some good bugs crawl through our letterbox – I wonder if I shall have to put a grid over it in future to prevent an infestation!!!
Harry had his follow-up appointment with specialist and dietician. He is STILL seizure free (from 24 June 2004) and like an oversized toddler! Doing all normal things to a 2 year old! His progress overall is fantastic, he has recently begun horse riding at school and with that his balance is very much improved. He has made his first proper little drawing using a PC – something new to Harry. He is using a couple of Makaton signs (snack, drink) and is very aimed in his actions.
We have got a new edition to our family, Toby, border terrier x, in the hope the two of them will bond and perdietician Harry communicate. At the moment, Toby 12 weeks old, equaloversizedbeing swirled round by the tail to Harry’s delight! Our opinionated 4 yr old mini Yorkshire Terrier with a serious attitude issue, is sitting close by with a look full of disgust that this can cause someone to squeal with delight!!
In mid September, we went to Portugal again for a respMakatonak. We all tanked up with (now faded…) suntanactions.Weh!! On an afternoon out with us all, Harry kept showing that he wanted the shandy someone was drinking. In the end I gave in and let him have a sip. He scrunched his face up to look 102 but loved it!! Kept banging the table and showing the sign for ‘drink’!!
And he says ‘Mom’… Definitely!
Update 15th August 2005
Harry has been fit free (of ALL seizures) since 24th June 2005! It’s like someone ‘switched’ Harry on! Whether it’s the Ketogenic Diet, his medication, or perhaps even the eye corrective surgery of May 05 – well, who knows. All I know is that I have my boy back! What all this does to diagnosis and prognosis is far too early to say. Harry is still greatly delayed, no communication changes and ‘special needs’.
On a different note – Many thanks to Sue C and friend for their lovely bits in the mail! The Magic Water Colouring Book went down a real treat!! A mystery ‘Series of unfortunate Events’ rucksack turned up last week to Ellie’s delight! She is KetogenicOOLEST back packer in the area!!
We have had some lovely cards from Illionois – USA, Isle of Sky, and from Israel came a super beach ball! Closer to home too! Many thanks all round! All the cards are lining our fridge although they frequently fall off!! I have had to get some more fridge magnets to do the job!
We are trying to enjoy what little summer it seems we have. On the good days Harry is chasing the balls in the garden and Ellie is jumping on the trampoline.
Update 22nd June 2005
Harry turned 4 years old June 13th and goodness me – we were inundated!!! Again our Fairy was superb with toys aIllionois pyjamas! Sue Cuin has made Harry’s bath time extra fun as well as sending jingles, Lorna Rogers sent LOADS of stickers, the Butler Family sent an ace spinning top and Post Pals sent a ‘keto friendly cake’…. and Kat some super action rhyme CD’s that we’re all bobbing along to! Harry also got a colour lamp which he loves!! Thank you for all the time put into Harry’s lovely handtrampoline.Updateenough to keep forever!
Thank you to everyone for wanting to make Harry’s day so special! xx
Harry has now recovered from his eye operation in May. The day we had that done; he also began a new medication in the hope of reducing his seizures further. I had to choose between 2 types of drugs – a quick wean on and oketohat had to be introduced slowly. I saw this choice mCD’slike ‘the devil and the deep blue sea’.. I went for the quick wean on as we’d know sooner but I can honestly say I haven’t held my breath! For the 39 months Harry has been on endless medicine and any combination imaginable, absolutely nothing has made any difference until the Ketogenic Diet in December ’04.
Harry has now been on this new drug about 4 weeks and the last bad fit was 8 days AGO!!! I have finally met my son. He laughs; he’s cheeky, mardy, naughty and crafty!! And I love it!!!! He walks with a purpose and his actions are aimed. He finally accepted drinking out of a cup instead of bottle and he is again taking an interest in self feeding. He listens to what he’s being told – when I say he’s naughty well, he just starts laughing!
Ellie and I have always thought Harry was given to us to become better people. We are both so very proud of Harry and his achievements!! xx
Update 18th June 2005
Harry is now diagnosed Lennox Gastaut Syndrome and not West amardynger. West is a time limited condition affecting infancy hence why the change of diagnosis.
Update 28th May 2005
We enjoyed a break in Portugal early May taking with us the children’s Godmother to help out. Whilst Harry enjoyed respite with his PA, we lounged by the pool and dipped in the cool water when needed. Harry joined us every day for several hours to swim and splash in the water. It was lovely to have a little break where Harry was looked after giving Ellie and me the chance for some girly time!! Not to mention a decent tan!!! The day we left the rain started and it rained for several days with temperatures dipping to what we had – so perfect timing!!
Harry has now had his eye operation to fix in position his straying / drifting eye. Whilst writing this on day 4 post OP, Harry has been walking round the garden WITHOUT a hat (!!!!!!!), his balance is much better and he appears much more aimed when reaching and picking up things! We have follow-up appt in 10 days time at which point we can say if OP worked but early signs are good.
We were sat in friends garden on day 2 post OP when Harry suddenly pulled my sleeve quite insistently, saying a long ‘Muuum’. There was no doubt what he wanted and needless to say, we were all near tears!!
Harry has again had some lovely cards – Emma from Wirral deserves a mention for a beautifully simple card and Sue is guilty, again and again (!) for sending lovely hugs via loveable characters to much delight for Ellie. And the best Elf. apptlso had a card from New York from the ‘Glitter Monster’ – Guess Who!! Many thanks to those not mentioned but therefore NOT ignored nor forgotten!!
Update 25th March 2005
Harry diet is known to cause up’s and down’s, whilst he is still accepting to eat the food – his seizures have been getting very intensive causing Harry to be black and blue. Consequently, Harry is now back on medication. However on a more cheerful note, the first EEG Harry’s had done since commencing this diet is showing less activity and more ‘normal’ pattern which basically means, the brain damage is being limited.
On a behavioural note, Harry is now taking notice of what he is being told – he listens carefully with good eye contact and pays attention! His actions generally are more aimed than before so whilst I’m not thrilled in being back on medication, perhaps it’s not so bad.
Update 5th March 2005
Harry has had some fantastic artwork sent recently!! Imagination, time and love is so obviously, key words for efforts sent from Sam, who’s 5!, and also from Yvonne Hindes. These cards deserve a mention here as well!
Harry has this half term had his first respite for 6 days. Needless to say, Mum and sister took the first plane ‘out of here’ to get a much needed break – we waited 3 years for this!! Harry coped beautifully, his diet had really good figures (measuring ketones and blood sugars twice daily) and Harry is generally experiencing a much reduced rate of seizures. We attended Harry’s first keto-clinic before the half term where the neurologist is well impressed!
I have learnt the diet and can now do it sleeping, as well as mastering the art of bulk cooking!! Harry still accepts this new very difficult diet and we’re seeing good results!
On a serious note, Harry’s brain damage from 3 yrs of uncontrolled seizures is incomprehensible. He is in a 4-5 yr old boy’s body with a development of perhaps 1 yr. No speech or any other form of communication – only laughs and moans.
Harry is 95% of the time a happy lad. But I don’t think he recognized me, Mum, when we returned from our hols. I don’t feel I should be upset about this though and I handle this in a ‘matter of fact’ kind of way. It has hi-lighted the fact that all Harry needs is love, love and more love with an ounce of patience thrown in for good measure! And it’s made me look more closely at the fact that one day, Harry may well be best off spending his days in a place where there are like-minded instead of him always standing out. But for now, he stays at home!!! Even if he doesn’t know ME – I love him to pieces and wouldn’t be without him for the world!!!!! 😉
Update 20th January 2005
We have had some lovely cards and letters – Diana from US but a special mention to Santana, Rachel, Ronnie and Rebecca for their fab artwork!!! It seems Harry has touched the hearts of two Japanese schoolgirls who sent fantastic mail over Christmas!
We would like to thank everybody who sent wishes via e-mail too!! If only I could have 2×24 hours per day I would love to reply to every one. The ones who don’t already have received ‘a note from Harry’ please accept our thanks this way.
The New Year started well for Harry on his new diet! He is walking to and from the car; in and out of school and during school he’s unstoppable! It’s such a gift as Harry’s Mom to be allowed to see the real Harry – tantrums and all!! I’ve never seen Harry being naughty and he’s catching up on lost time!!
However, Harry at the moment is victim with everybody else of bugs and viruses and he’s a bit under the weather.
Update 31st December 2004
We have had some beautiful cards for Christmas – Emily’s card was particularly lovely! The reindeers sent Ellie and Harry a present EACH which was fantastic!! We also had a brilliant bubble machine that Harry absolutely loves!! We had another few things that ‘Santa’ sent – many thanks to guilty parties!!!
Being part of Post Pals in the build-up to Christmas, reminded me what the festive season is all about as well as combining the ‘post a smile on a sick child’s face’ Post Pals Statement. We have on occasion been touched beyond words. Knowing that folk go to this much trouble is warming and reminds me that the world generally is only as bad as you make it. Judging by those involved in PP and the people who come across its way are proof yet again, that the people around us are more thoughtful than ourselves.
Harry is getting used to his new diet and taking to it very well. We have much fewer seizures and Harry is generally happier. Improvements on vision and walking are still great. Harry is vocalising using different or new tones, perhaps speech may follow?
Update 22nd December 2004
Harry is doing well on this diet. His walking is 100% improved! He tolerates this diet very well considering how fatty it is. He is still having headdrops but the more severe seizures are down to less than 10 since we started – I think we’re on week 5 or 6 now! Before then, we’d have that per week! It looks like we can put this one down to having a result!!! Which means he can come off his medication!!!
Update 12th December 2004
Harry has started the Ketogenic Diet late Nov /04. He did this in hospital where even the Post Pal mail managed to find us!! We’re on week 3 (or so) of the diet which can replace meds and can mean fit-free. Harry’s seizures are reduced, not gone, and generally he seems more alert, better eye contact, more vocalisation and much improved walking. Our first Keto clinic is scheduled for Jan which will be an early indicator if we carry on. This diet is very strict and very time consuming but seems worth the effort.
Update December 2004
Harry is now home so please welcome him back by forwarding any mail to the above address!
Update November 2004
Harry is in hospital, to start the Keto diet; he is doing well and produced ketones by Wednesday which is quick and good.
Update October 2004
We are planning a Halloween party for Ellie, Harry and friends. This is Harry’s first and he’s going to be a pumpkin! Harry has settled in nicely after our holiday to Portugal and I think he’s been glad to be back at school! We are exploring the option of dolphin therapy to help Harry with speech, gross motor, fine motor, concentration etc. Anyone fancy helping fundraising?
Also special thanks to Kate Dee – beyond words.
Update September 2004
Harry is doing ok, he was sent by a Poster a toy which projects images on the wall, which he loves, and has inspired his mum to make him a sensory room with things like bubble tubs and changing lights. I’ve already sent him my old disco ball (which puts different coloured blobs on the walls), if you’re stuck on ideas of something to send him maybe anything along those lines? Harry, Ellie (his sister) and Mum are off to Portugal soon to visit family; we hope they have a lovely time.
Update August 2004
I take Harry to Brainwave, they are sort of rehab for brain damaged children. I haven’t long got back. In the past 10 months the most remarkable development for Harry is that he now chews. This is fundamental in early speech. Incidentally 3 or 4 independent people have suggested that Harry says ‘Mummy’ more like ‘ummmy’, ‘hello’ more like ‘elllo’ and ‘yes’ more like ‘yah’. These have been consistent for 4-6 weeks but hearing them often I hadn’t dare to believe. You know what it’s like. It’s about 28 degrees here, not much wind blowing and Ellie is in and out of the pool. Just had Harry in a shower – he’s been a bit grumpy with the heat and not really wanting much to eat.
Congratulations Harry, all of us at Post Pals are very proud of your achievements.
Update July 2004
Since joining very recently, we have been inundated with stickers, craft kits, teddies, water balloons, colouring books, blanket, balloons, cards emails etc.
We share and show Harry as much as possible and have all the things displayed everywhere!
Receiving all these items from thoughtful folk who want to be in our lives, means so more than we can ever express!
There is SO much LOVE in Post Pals it’s fantastically touching! Our lives are richer for sharing our sad times with you! Love Su
Update June 2004
Harry received lots of cards and presents for his birthday, including stickers, soft toys and lots more for his birthday, some people “even spent a long time making posh artwork”. They were very touched and pleased, and say a BIG thank you to you all.