Benjamin George Henry

Forgot in my rush to see to Ben ….

Would like to say a massive thank you to Kitty and David & Carol. Both choose to fundraise for Ben recently and have done so last year too. We really appreciate you doing this for us and Thank you!!

Well here I am again months later only just finding the time to blog and keep the site updated

Since the last update we got our guide dog puppy – Irvin. He is a lab and has just turned 7 months. He has a lovely nature and is great with Ben, but he is a naughty puppy so keeps us on the go all day:) I don’t know what we will do when he leaves at a year old for the next stage of training, as we will miss him a lot.

Ben has been doing really well and is doing well at school too, and really enjoying it. We had Ava and Sophie – Ben’s cousin and Auntie – here for a month over the summer holidays and it was nice to have someone to play with in the sun. We got him a big trampoline and swing set so they had lots to play with. And it is great having a bigger garden for them to play in. Irvin liked chasing Ava around all day too!

Ben is not having a great time just now though. 2 weeks ago he had hip surgery on both hips to put them back in their sockets. It was a huge operation for a six year old, and he has been so brave through all the pain. We got home the other day after being in hospital for 11 days, but he is still very sore and has horrible leg spasms – so we may end up having to go back in again. I just hope that this operation has worked and his hips are were they should be and stay there! He just shouldn’t have to go through so much at this age.

Been far too long since we updated, but life really has just been too busy. I have a lot of respect for people who manage to update their news all the time (or maybe they just have too much spare time!).

Ben is doing well. The adductor release did not work and his hips are causing a lot of hassles again. Not helped by the fact the Ortho consultant seems to have forgotten we exist! We were told in Jan that Ben would need a major hip operation and that we would need to come in and have a long chat about it all – still waiting for that chat – and the operation is supposed to be next month. Seems the 5 calls per week from me and not getting through to the right ears!

Ben also turned 6 a few weeks ago – he is getting so big! We took him to center parcs for it and all had a really great time. Nanny, grandad Phil, Sophie and Ava came too and it was lovely weather so fab.

Ben had a double adductor release operation in November – as his right hip was coming out of the socket. He had a horrible 8 weeks in full leg plaster cast. He still had them on over Christmas – which was nice as everyone came here to stay – and had them removed on the 31st Dec. He then had 3 more weeks of pain and leg spasms and has had constant physio since then.

We had his follow up appointment on Wednesday and had an xray. We were – and I think his consultant too – very shocked and quite devasted to see that his hip is still out of it’s socket and actually worse. So poor Ben went through all of that and now has to have another and worse operation to fix his hip. We are hoping to hold it off until June – so he can spend some time at school, as he really loves school.

We are just packing up the house ready to move in a few weeks, we will be sad to leave Inverurie and this house, but not going too far. We have bought a bungalow – which is much needed for Ben and some extra space will be great!

I turned 30 at the end of August, and for my birthday present from my mum she bought us all a holiday to Center parcs in the Lake District. We were there all last week and it was lovely – Me, Ben, Gav, mum, Phil, Soph and Ava the Raver. Lovely weather all week, so lots of walks, feeding ducks, bbqs, swimming etc. Very nice and Ben had a good time – and was well

Ben started primary 1 yesterday. He was so excited when the bus and his ladies turned up! He could of at least pretended he was sad to leave me

Just doing mornings to begin with and then moves on to full days. Don’t know how he will manage those, as he was sound asleep on the floor (whislt playing with toys) a few minutes after he got home.

House things stressful, hopefully hear if all contracts in place and mortgage gone through by the end of the week. I just want to be moved in now as it has all been a major stress!

Also been to Craighalbert again since last posted. It was summer school so more relaxed. Music therapy every afternoon, which Ben enjoyed. The group of boys was slightly different to his normal class, so we got to meet some more nice people.

Ben in the last few weeks has also taught himself to comando type crawl – so can now get about faster. We go the catapillar race – where he has to crawl along to get chocolate buttons – he is very good at it!

We have been so busy that I really should not even be sitting down to write this! Since the last time i updated we have been to Craighalbert again. Had a really good time and was lovely as Ben’s friend Gregor was there too.

We have been busy getting the house ready to go on the market asap. We still have so much painting etc to do – as we need as much as we can get for this place. Well really we need 50 grand over what we can get, but we will have to settle for a little house that will be far too small but will at least be a bungalow. One day the government may actually think about it and help parents of disabled kids out money wise when they have to move due to non-adaptable houses. Seems unfair but hey.

We had a lovely week last week as we drove down to Somerset – some 11 hours – to go to a 2 day assessment at The Brainwave Centre. The staff were lovely and Ben worked hard – it was so blooming hot!! So we now have a personalised physio dvd plan to work on with Ben at least 30 mins a day. They then come up to Perth in November to reassess him and change exercises etc if needed. Very professional and through assessment.

We then drove to Sussex to stay with Lulu. Had a lovely few days there. But it was so hot!! 33 degrees hot:0 Ben had a great time on in the paddling pool and running through the sprinkler. He also loved his ride on the sit on lawn mover with Lois. Will definately be wanting another go on that! Lisa and the kids came down too – so got to see a lot of family at once

Now back to start of the summer holidays. Took Ben to a disabled kids play scheme yesterday, and we have a few other things planned to keep Ben happy. He is also going back to the stables to have a ride on Fudge this weekend – long time since that last time as he had to have so long off after his Op and Botox.

Wish us luck on the house – STRESS!! Right must go back to painting something – anything not moving gets painted – 2 lazy cats are now more white than black and white!

Can’t believe how time has flown by! Had a lovely day and thank you for all cards and presents. We went to Haddo house to feed the ducks and go to the park – beautiful sunny day. Then Ben went off to nursery and had cake and candles. Then more cake and candles at home – very tired boy now!

Ben’s operation went fine, and he has healed very well. He is at last allowed to swim again, but still has another 4 weeks until he can ride his trike or pony ride again. The botox he had at the same time hasn’t really showed itself to be any benefit, but that may be due to the fact that we haven’t been able to do many stretches, and none of his big stretches – standing frame, trike, pony riding, swimming etc – so it may show soon…..we will see!

We went to the CALL centre in Edinburgh for the day last saturday, as they had a family day to try out all the special needs software, switch toys, comms aids, etc. It was a lovely day and we had a nice time meeting everyone. Ben got to try out a few high tech aids, and did so well on them. He had fun moving remote control type toys with the coms aids. I really hope that we will get one soon, as i know he can use one with help – and it will be great for him to tell us more and make more choices in life!

Yesterday we – me, Ben and mum – went out to Georgies house for a visit, and she has just got a lovely king charles spaniel puppy. It was as tiny as a kitten! It loved Ben, and licked him to death. Ben wasn’t scared at all – although would probably prefer less of a licken!

Today we went out to Rhiannas, as it was her birthday party. She had a big bouncy castle in her garden, so the boys had fun. Both are very tired now:) Lovely to see everyone, as haven’t managed to see Sheila and Linnie for awhile – as what with op etc we just haven’t been able to.

Ben is in hospital tomorrow for an orchidoplexy and to have botox in his very tight hips. Not looking forward to it at all, and hope it isn’t sore. Only found out he is having the botox yesterday, as he has surgical and orothopeadics in the theatre now. Hope they manage to organise themselves and everything is done in the early morning – as poor Ben doesn’t like being hungry!

Will let you all know how he goes when we get home – hopefully tomorrow.

Today we took Ben for his first go on a pony. We were not too sure if he would like it – or even be able to stretch his legs enough to sit on it. But, he was great, and really enjoyed it. His pony, Fudge, was very calm and gentle. He walked round for about 20 minutes, which is much longer than I thought he would last, so he got a lovely leg and hip stretch from the ride – as well as being fun!!

It has taken a while to find a stables that would take him – due to age and disability – but the stables are great and ladies lovely, so hopefully Ben will continue to enjoy riding. We will make a jockey out of him yet – and even Gavin is talking about giving riding a go

Well today is mine and Gavin’s 13 year anniversary! So lucky or not, who knows We had a lovely day. We went to Doonies farm in Cove, it is a rare breeds farm where you can feed the animals. Ben was very interested in the noises, and the fact the animals were getting all the apples! There were some baby lambs, crazy pigs, lovely horses and lots more. We also spoke to the lady who helps run the farm, and we were very sad to hear the place may close in 3 weeks. Yet another place that Aberdeen council are trying to close down. It is one of the only places in Aberdeen that Ben can go to, enjoy and learn. It is also a fab way of getting outside for fresh air and a walk. It is so sad that they continue to shut these places down, when they should be doing all they can to improve and help them achieve all they can. I truely hope that Aberdeen council begin to listen to their people – and the Aberdeenshire people – and keep this place open. Not only open but put some money or help into it, and make it tip-top. What a fab educational place for all ages and abilities we are going to lose otherwise!

We just had a rubbish week!! Monday we sat for 2 1/2 hours for a surgical appointment – and the outcome is Ben needs a little operation. Then I had some horrible tests on Tuesday. Wednesday we sat for a wonderful 3 hours + for an orthopaedic appointment – the outcome is that Ben’s right hip is coming out of joint – so needs either bot-ox or an op (neither are great news to us!). Had a nice time Thursday swimming after school – was great fun. Friday I was ill all day! We have all had the horrible cough and cold for nearly 2 weeks now, which Ben has had the worst. All the coughing makes him sick = lots of washing and ironing. But hopefully we are past the worst of it.

Today we had a nice day. We went to the Lochtar centre – activity centre – with 40 other families, for a day of fun courtesy of Visual impairment Scotland. The had lots of bouncy castles, bouncy ball pit, BBQ etc. And the weather was great.  Ben really enjoyed the bouncy castle, but fell asleep after lunch

At last after nearly 2 weeks the snow has gone. Ben was off school for awhile due to the snow, then if was school’s half term and now he has the cold! So grand total of 3 weeks later lets hope all goes well on Monday:)

We had great fun on the sledge and he loved that! Also been having lots of fun baking – looks especially cute in his Big Cook Little Cook apron, very Jamie Oliver! He does however eat everything we are cooking with – flour, icing sugar – raw eggs and their shells until i can get them out of his mouth – yuck! He seems to like them more that the finished article, so maybe our cooking isn’t that good??

Next week is mammoth on the appointment front – so fingers crossed mine and Ben’s horrible colds go away and we are fighting fit for them all. And we need to get well as we have lots of Ben’s friends we need to visit, but haven’t been able to as we don’t want to spread our germ – sorry everyone we do still love you!

Will update the gallery with some photos asap – gallery link on the right ———————>>>>>

Yet again I have been rubbish, too busy to keep everyone updated with what we have all been up to!

We just got home from our second week at the Craighalbert centre, and yet again it was great…. Better say that though, as i know you ladies might read this – get back to work!! …No really, it was fab. Met some lovely new friends for Ben – all girls of course – and their parents were nice too Ben worked really hard (well apart from in his walker! lazy toad) and only had a few spells of tears. He has come on so much over the last few months, he can cope with other kids much better now… even scary girl ones! We have now got some more things to work on, and lots of new ideas, and are looking forward to May and our next week there.

It is really tiring though, not just for Ben, and i feel like i could sleep for a week. Sorry this is not very well written, i’m off to bed and will write again with more about what we did last week

January has been so busy! We have seen lots of friends and Ben has had lots of fun playing with his new toys with them – and theirs too. He has been quite tight in his leg muscles so we have stepped up the physio work outs:) He has been out on his trike most days and can cycle it lovely now. He isn’t that fussed about the whole steering aspect though!

We have also had and got lots of appointments, we have been to eye clinic a few times. The good news is his eye sight has got better and his long sightedness has reduced so much he doesn’t need glasses – not that he will wear them!

He has been doing so well at nursery. He has been enjoying it a lot too! And the biggest news is that he is doing well in his walker – gait trainer. It is at school at the moment – as they have more room for a long walk (and we also have the standing frame and trike to work with at home). He can now walk the lenght of the nursery all by himself – which is a massive step!! (no pun intended).

P.s; – the gallery link is on the bottom left for people wanting to see some more photos of Ben xx

Just got back from 2 weeks in Ireland – at mum and Phil’s house. Had a great Christmas and New year. Nice relaxing time of getting all meals cooked for us, lots of walks in the countryside, swimming, going to the park, eating lots of cakes and generally not doing anything strenuous.

Back to a heap – big heap – of appointments, letters, messages and some nice post too – Thank you for all the cards and presents. Ben had a great Christmas and really loves his gifts. He loves it in Ireland – as we are all together, and not having to do boring stuff like appointments! He saw lots of wild life and his newest fun thing to do is “adventuring!” He thought it was great going out into the barns and the woods with Gavin, and a torch, and finding things – or hunting the cats:)

Back to school tomorrow and a million appointments. We are off to the Craighalbert centre at the end of the month and really looking forward to it.

Will put up some more photos from our trip to Ireland asap.

(Was lovely to hear from you Howard and Sally – will pop a letter in the post asap – so expect it about March   )

Just got back from a week at the Craighalbert centre in Cumbernauld. It is the only conductive ed place in Scotland – and it was FAB! It is private – as Aberdeenshire council ill not fund, so about £700 in total a week. But it is well worth it – can’t wait to go back. Ben went for a wee twice in the toilet:) And we learnt a lot of new physio things and ideas for sitting independantly etc.

It is such a positive place, and the staff are great. We saw a neurologist too and that was very interesting. As the centre is just for CP kids its was great for us and Ben – as we got to talk to the parents and Ben was very intertested in kids like him:)

Since the last time i wrote on this we have – Had Ben’s MRI , all came back not too bad so thats good, been to Centre Parcs again  with mum, Phil and nanny scot. Had a great time and Ben loved it! Had Soph, Doug and Ava to stay, been to Sophs as Dad was over from France.

Ben is doing well at school and they now have his walker during the week – he has a better run of the corridors etc, as our house is so blooming small. If anyone wants to buy us a bungelow just shout:)

Well that is at last the school holidays nearly over:) Ben is supposed to go back on tuesday, but the hospital have given him his MRI appointment for then. He is having a GA for it so bit nervous as always. He should go back to school on Thursday though.

Had a nice time in Ireland with mum and Phil. Ben was a great boy on the flight, and BMI baby were very helpful. The weather was a bit like here – sunny and raining all day:) But Ben had a lot of fun swimming most days at a local hotel. We also ate out a lot and went for walks – Ben was a good boy the whole time, as he loves to be busy. But since we have been home and he has had to do boring appointments, etc, he has been a bit moany. Hopefully he will want to go back to school and do some new things.