Egg-cellent Week!!!!

Sunday 17^th April

Today’s plan was to do as little as possible and I think we just about managed it one way or another.  The weather was nice so the boys spent most of the day ‘playing out’; We had been told by Ben’s physio to do NO physio at all until at least Monday as he was so very tired from last week and like anybody he needs time to rest.  The day flew by quite quickly as day do when you doing really do much but it was nice to just plod along and have no great rush to go anyway or be anyway.

 

Monday 18^th April ~ Easter Holidays at last!!!!!

We have all been waiting so long for the Easter Holidays to arrive and they are finally here.  Today’s plan was to do ‘nothing’ apart from Ben’s physio courtesy of mummy.  The boys seemed to play nicely all day which was nice, the weather again was great so Jacob spent most of the day running around outside.  Ben has his moments and will go out to play but need Jacob just there for help.  Ben work hard for me during physio which was so lovely we even had a few laughs.  I am now starting to see he muscles build up and develop in places where he never had them before namely his calf and his thigh.  The treadmill was dusted off for a short walk, we tried backwards & sideways as well – we do need to work on them big style.

Tuesday 19^th April ~ the Monkeys are coming!

Auntie Em & the monkeys were coming to play today, which always ends in a trip to the little park about 5 minutes walk from our house.  Auntie Nona came to see us as well which was nice, more hand the better!!!.   We had a picnic lunch then set off to the park.  All four boys were excited although Ben did mention to me he thought he was getting a little old for the park now. Angain we were so lucky with the weather glorious sunshine.  It’s lovely to see them all play so well together.  Ben managed to climb the steps of the slide for the first time.  He seems to be doing a lot of first’s since SDR!!!! 

Wednesday 20^th April

Another bust day as our friends Robbie & Charlie were coming to play, so thank goodness the weather again was shining!  I do feel sort for our builder have 4 kids running around making loads of noise when all you want is a bit of quiet! After lunch we took the kids down to Ashlands fields to play a spot of golf at Kath’s golf school!!!!  They played so well for about 2 hours looking for the golf ball that they had lobbed across the field was not as much fun.  After it was back home for an ice cream and chill before Anna arrived for physio.  Ben decided that this would be the golden opportunity to show us both his new trick. He crawled quickly to standing then walking with control & confidence.  We both just stood there and looked at each other tears in our eyes. Wow does not come close to describe how I felt at that moment, Ben is really realising how all the physio & exercise is paying off.  He can now see the results and he is so pleased with himself as we all are. 

Thursday 21^st April

Today was a busy day lots to do, we all had to get up early as we need the car so we had to talk Damo to work.   Then a spot of shopping much to the boys disgust – why is it boys hate shopping from such a young age!!!  Then back home for a quick turnaround and off to Fun Planet for Robbie’s birthday party.  Both boys love this place to be fair I do too as once in you doing see them unless they need a drink of food.  After the party we had to rush back home for physio with Laura.  Ben again showed his new party trick to which Laura was speechless.  Ben had a great session lots of standing & walking, yet again he has done us all proud.

Friday 22^nd April ~ Good Friday

Damo had a great idea to go to Windermere and do a spot of Kayaking!!!  Well I have to say it was a great idea – please don’t tell him.  Hand on heart it was the BEST family day ever.....  The weather was perfect sunny and warm.  Ben was a little worried about it but he was willing to try it. Whereas Jacob was like a coiled spring waiting for lift off.  But as we set off on our kayaks Jacob has a big wobble!!! He got into a right state, but soon we calmed him down at set off across the Lake.  Ben was with me and Jakey with Damo.  It was great to see Ben not only being able to sit up without losing balance but also helping me paddle.  Jacob (once over his nervous) was an excellent paddler he help Damo out no end.  We spent the next 3 hours rowing around the Lake stopping for a picnic and a few rest breaks – it’s really hard work.  I didn’t take the camera as I thought it might get wet or end up at the bottom of the Lake.  I was right not to as everything got soaked including us!!  After we got back we went to sit on the grass and let the boys paddle in the Lake enjoying the sunny weather.  By the time we got back we were all shattered but had one of the best days out EVER.

Saturday 23^rd April

Chill out day! After yesterdays mad one it was time for a little relaxing and chilling.  Laura was coming to do physio but no Aqua therapy today so nice a gently today.  Ben again worked really hard during his session, he seems to be in a really good place at the minute and everything is working so well and he is working hard.  The rest of the day was the usual playing, cleaning & other Saturday jobs. 

Well tomorrow is another busy day, the Easter bunny may be paying us a visit, we have been invited to Evan’s (fellow SDR buddy) birthday party & a family dinner, a good day I think.

Charlotte x

Ben's Big Adventure...............

Sunday 10^th April

The boys were with Grandma Steph & Grandad Richard today as we were not due back from Newcastle until late in the afternoon.  Their day was a busy one first they went for lunch at the Anchor Inn, they had fun playing in the play area.  Next it was off to see Grandma & Grandad’s new house.  The boys loved the garden although Jacob did say it was a bit boring as they didn’t have any toys!! They have not moved in yet as they are ‘remodelling’ it! They watched some model aeroplanes on the field across the road.  They had a lucky day as the weather was glorious.  Before long they arrived home tired and excited to tell all their tales of the day.  So it was baths & early bed for us all.

Monday 11^th April ~ The Adventure starts here!!!!

Ben was very excited about his school trip today although he was not meeting up with his friends until 4pm this afternoon.  So he spent the morning with Grandad Rob, watching TV & playing on the Wii.  At Lunchtime I came home so we went out to Pizza Express for lunch together which was lovely. Then a quick hair before heading home to make sure everything was packed and we were off.  Grandad Richard was our chauffeur for the day so it was a long slow journey but we got there in plenty of time.  Ben was feeling excited but a little nervous – as soon as we saw all his friends he was off no looking back and no bye mum!!! What more can I say.  So I safely handed him over to the teaching staff and we were off. I was one very proud Mum.

Over to Ben now...

After I arrived we went to our dorms, I was with Alexander downstairs, and my dorm was called ‘Swinstoe’.  We had to unpack and then we went down for tea.  In the evening we wrote our diary & we had tuck shop then we went out to play in the grounds of the Hall.  At 8:30pm it was time to get our PJ’s on and listen to the wonderful Mr Marsh tell his world famous rendition of ‘Water Ship Down’.  We had hot chocolate & a biscuit then teeth brushed & light out at 10:30pm....

Tuesday 12^th April

The bell rang at 7am we had to get up dressed and ready to go to breakfast by 8am.  The breakfast was amazing cereal, toast and even sausage & bacon my favourite.  After breakfast it was off to the field study room to find out what was happening today.  My first activity was Tree Climbing!  Yes I managed with a little help from Jonathan.  It was a bit high and scary but I did it.  Next was going to the show cave.  I was in my wheelchair as it was a little far for me to walk.  The cave was cold, wet & scary.  I really enjoyed learning all about the cave & ‘Gapping Gill’.  Watch out for the Witches Finger if you every get chance to go.....  I finish all my film in my camera so I tried to find the other one but guess what Mum had not put it in my bag – Great!!!

The evening was the same as last night – by bed time I was feeling tried but had had one great day what would I be doing tomorrow!!!

Wednesday 13^th April

We woke again the 7am bell, it was a little harder to get up this morning as we were both a little tired but the breakfast was worth getting up for.  Today‘s activities were Caving & Village Study.  We had to get waterproof gear on for caving and get in the mini bus to travel up to the cave.  Valley Entrance was our cave today.  I felt a little bit worried as I have never been caving before but I was also a little excited.  I had the best time ever, I even managed to get ALL my clothes soaking wet through – good job mum was not here to see it!!  Once back at the Hall it was a quick shower & change for off to the next activity.  The village study next, we had questions we need to get answered and we needed it interview local people to help us.  We even met an author Robert Bullock which was exciting & I got his autograph.  In the evening we played out on the wonderful grounds at the Hall. 

Thursday 14^th April

Well another day of exciting things to see & do.  On todays list Gorge Scrambling, Tree Climbing & Orienteering. It was just another day of fun & games.  I really enjoyed climbing up the rocks when we went Gorge Scrambling or George Strangling as we liked to call it. I was on to my second round of Tree Climbing; I was starting to get really good at it.  In the evening we learnt Country Dancing, we even had to dance with girls which was pretty embarrassing take it from me.  That evening Mr Marsh finished reading Water Ship Down.

Friday 15^th April ~ Our Last Day

I was a little bit sad this morning as I knew it was our last day and then we would be heading home L.  It was again Tree Climbing this morning I was getting even better that they gave me the nick name of ‘Flaming Eagle’ because when you have finished climbing up the tree you then jump off (attached to a harness, so I was safe) and land down on the ground.  I had so much fun doing this.  After lunch we got on the coach and headed home, we did stop off at the Falconry Centre which was amazing. We got to see lots of different birds including a hood eagle that flew over our heads & I even got to hold Barney the Barn owl on my arm (with a glove on) that was just the best.  Then it was back on the coach to head back home.

Ingleborough Hall was my first every school residential trip, I thoroughly enjoyed myself and had an amazing time – Can’t wait for Robin Wood next year!!!

Ben J

The coach arrived at 4:15pm, I have to say I have really missed Ben this week, yes he has been away for a week before without us but this time we had no contact with him.  I watched him walk down the coach steps looking happy but very tired I have to admit I cried (much to Ben’s disgust!) I think I was just so relived he had a good time and he was home safely.  His support assistant Mrs Fox came up to me and told me how proud she was of him and we should be, I told her that goes without saying.  The first thing Ben said to me what ‘Why did you put the other camera in I ran out of pictures on Tuesday’ so no I missed you then!!!  I will post his pictures (if they are suitable) on here once they are developed – old style!!!!

Saturday 16^th April

Ben was absolutely shattered after his full on week of activities.  He still had his aqua therapy session & his first proper physio session in a week to contend with but we thought he would manage it.  He ended up having an extra 20 minutes of Aqua therapy as it was quiet and they had a cancellation.  But by the time he came home I could till he was exhausted but Laura was due to arrive soon for physio.  Ben was not very focused and found it hard – It was good to see that he was still able to do all his stretches and Laura said that he had not lost any strength he had before he had gain it.  He has been so active while away he has been exercising and not knowing!

Ben has yet again shown us just how amazing he is this week – just a little while ago before SDR we thought that he would only manage a couple of days at Ingleborough but Ben being Ben (and the wonderful support from his school) managed all 5 day.  I can’t put into words how so very proud of him we are he is one determined young man who is truly AMAZING x

Charlotte & Ben xxxxx

My boy wonder................

Sunday 3^rd April ~ Mother’s Day

My boys are amazing, yes they drive me mad but I love them so very much.  They were so excited about the prezzies & cards they had for me they woke at 6AM!!!!  The afternoon I took the boys to see Hop at the cinema which we all wanted to see well actually they did I wanted to see Rio but it’s not out till next week – boo.  It was lovely afternoon with my boys, on the way back we stopped to wash the car.  The boys thought this was great fun watching mummy was the car.  Although Ben did open the door while I was spraying the car with water, luckily I was at the other end of the car so no damage was cause.

Monday 4^th April

And here we are another week has come round again; at least the end is in sight.  Not much to report today Ben had an appointment with his osteopath after school, Ben loves going to see Amos they just laugh through the session.  He was impressed with his new party piece getting up from the floor by himself.  The rest of the evening was just spent arguing about the pros & cons of bidding on eBay for Lego figures!!!!!

Tuesday 5^th April ~ Appointment with Mr Tang Ben Orthopaedic Surgeon

Today was an exciting day for Ben & me we were going to see his Orthopaedic Surgeon Mr Tang, we last saw him in November just before we went to America.  He was very support of the whole procedure and was excited to see how Ben had got on.  As we walked into the room I could tell he was itching to get his hand on him, but first the paediatrician (it was join clinic with paediatrician, Mr Tang and physio) asked us all about what had happened, so I talked them through from surgery to coming home, they had all seen the Calendar piece and had even read the blog!  Ben was happy to show them what he could do, but first they wanted to see for themselves so he climbed up on the bed so they could see.  Mr Tang was so excited he could not believe the difference in Ben’s measurements and how the spasticity had now gone.  He also commented on how Ben looked less tense and looks happier in himself of which I had to agree with him – Ben is so much happier now than he ever has been.  It is great to see but I do half feel so guilt that he has had to put up with all of that for so long, life was so hard for him – but now he has a brighter future Thanks to Dr Park & his team.  We both came away feeling really happy. Oh he walked in with his sticks to show Mr Tang how well he can do it now.

Wednesday 6^th April

Ben had another great session today ~ he can now sit to stand balance then walk a few steps then balance, then with a little bit of help walk backwards and sit back on the chair.  He is great progress this week so I hope that he can maintain it while he is away next week.  I do think the week off physio has come at a good time for him as it has been on very long term and he has managed really well with everything we have thrown at him. Basketball training was quiet tonight as Leeds schools are on holiday this week so it was a great training and Ben was pushed to train really hard ~ he was so shattered when he came home.

Thursday 7^th April

It was another busy day, I collected Ben early from school for his physio session with Laura.  He was a little tried but after his (large) snack in the car on the way back home he perked up a little.  Laura was ready for a great session as Ben was, not long after they started she called me into the front room she showed me what Ben could do.  Even in just 5 days he was now able to use his theraband and push his foot up and down.  This may seem small to you but for Ben this is HUGE he has gained so much strength in his ankles over the last 2 weeks makes me so proud of all the hard work he is putting in.  After Jacob came home the boys played out for a hour or so Ben using his walker, he using he wheelchair less and less now.  After Easter it will not be going to school so this is great to see.

Getting bigger!!!!!

My little man!!!

Ben practising sit to stands in the mirror!

Friday 8^th April

The sun was out today which was lovely, the boys both came out of school so tired they just wanted to go home and play. I just had the last final chats with school about next week and we were off home to play in the sun shine.  Ben was chatting about his trip next week; I am so proud of him not only going for the whole trip but been realistic about what he will be able to do.  School and the centre have got it all sorts and I have absolute faith in them.  Ben will not only have an amazing time but learn a lot about himself.  He will no doubt come back with 4 sets of clean clothes and not had a shower all week but who cares.

Saturday 9^th April ~ Weekend away!!

During physio (his last proper session of a week!!) this morning Ben stood on one leg, Before SDR this was impossible for Ben to do, it just shows you how hard he is working to gain all the muscles he need to help him stand, balance & walk.  Proud Mummy!  Then at 1pm the boys were handed over the Grandma Linda and we were off up to Newcastle with our friends for a night away.

Ben aqua therapy was another good session he worked really hard on the body board and you can see he is getting stronger every week.  We are lucky to have found this for him as he doesn’t really realise he is working he just enjoys it so much.

As Ben is away next week – fingers crossed he will be writing or helping write the blog so he will fill you all in on what he has got up to on his very exciting first residential trip with school.

2 ½ months post op & still going strong....

Well as another week begins Ben seems to have turn yet another corner, he is stronger and happier within himself and more confident in every way.  He is wearing him DAFO’s ( short splits) all day everyday and using his walking stick more – he does however still occasionally need to use his wheelchair during lunch playtime as he still feels a little less confident in the playground.  We have agreed to leave it there until after Easter.

Sunday 27th March

Well what to do today, the sun was shining the birds were singing!! Well not exactly but you get the picture.  We decided to go for a bike ride in the woods, well the boys were on bikes.  Ben had not been on a bike ride since we were in St Louis, he has been riding around at home but not gone too far so this will be interesting.  It was so nice to see him having fun on his bike with Jacob.  Ben loved being able to control the bike more & need less help for us.

Monday 28^th March

Another week closer to Easter!  Ben is now counting down the sleep to his weeks residential with school, I so excited for him it will be so amazing for him.  Today was a slow day nothing really to report ~ Ben worked really hard with his physio with me, we seem to be working well together now.  We used the vestibular board, Ben stood & balanced on the board and I was then able to move the board – This is something he has NEVER been able to do before SDR.

Tuesday 29^th March

The builders seem to be moving very quickly with the building work, still haven’t got my head around the fact that they are here let alone build!!  Ben is starting to think about how he & what he wants in his room.  You know the usual list from a 9 Year old, TV, laptop, Wii you name it.....

Physio was ok today although he did seem a little tired but he managed well.  He is making really progress and you can see the muscles forming on his legs and he even has the starting of an arch on his foot, he has always had really really flat feet before so this is a huge change.

The boys played outside gain tonight which not only is great to see but so good for Ben instead of sitting in front of the TV of Wii.

It was also parents evening, sometimes it not that easy for me as I work in a school I sometime know too much.  But I decided to go with my mummy head on and just listen and see what they have to say about our boys.  WOW both boys got amazing reports – I am so proud of them both.  They have settles back into school life quickly and are working & trying hard. 

Wednesday 30^th March

When I collected Ben off the he seemed full of life and walked (with his walker) nearly all the way home which was a huge improvement over the last couple of weeks.  He seemed to be really pleased today perhaps the fact that he was not having physio after school had something to do with it...  I did manage to fit in a few stretches.  It was basketball training tonight Ben just loves going and gets so much out of it, just don’t enjoy pealing him out of bed on a Thursday morning.

Thursday 31^st March

Double physio today for Ben I hope he manages it!!

Like the amazing super star Ben is he has done us all proud again pulling off 2 amazing physio session.  He is just trying so hard and now he is seeing improvements in his mobility.  He walks so well and with less prompts from us.  He is making daily progress and inching every closer to his dream of walking unaided confidently.  He was a little quiet this evening I think due to the fact he had 2 full on sessions of physio.  He still makes me laugh & smile with his stories & jokes; he is turning into one amazing young man.

Friday 1^st April

The end of the week is finally here; thank goodness it’s been a long long week. 

Ben has been on form all week this week trying hard in all areas including homework, and trying to be more organised which he is managing really well.  He managed lots of standing activities during his session to day and even had ball thrown at him he stayed on balance. At the end of the day Ben was excited as not only had we finally booked our summer holiday but Grandma Linda had a new car so he was desperate to go and see it after tea.  I think it passed both the boys inspection!.

Saturday 2^nd April

Busy day today physio & aqua therapy.

It was early physio this morning so we all had to be up early and sorted.   He worked really hard for the whole hour, and then they boys went off into town for something I was not to know about!!!! 

In the afternoon Ben went off for his aqua therapy session he was again so excited to be going as he had a great time last week – he came back shattered but having had a great time.

Well that’s another week gone, lots happening over the next couple of week so no doubt I will post it on here.

Thanks again for all you support & messages

Charlotte xxxxx