The Builders Have Arrived!!!

Sunday 20^th March

What a lovely quiet day we had – Oh apart from having to clear out the conservatory due to the builders starting work on Monday and it has to be clear as it will be demolished first thing.  Firstly it has taken 2 ½ years to get to this stage after applying, assessments, offers, rejection, plan, plan, more plans & finally all approved for a bedroom & downstairs toilet for Ben – we were told it should take from start to finish including building 18 month max we are now looking at 3 years in total!!  But the time could not be better – Ben has something very special to look forward to and will help with his rehabilitation no end!

The upside was that the boys played out for nearly the whole day & Ben was using his walker more and short splints which was great to see.  Then it was the usual Sunday night routine homework, reading, bath & early bed for all of us.

Monday 21^st March

8:15am on the dot the builders arrived!!!

Ben took his sticks to school today I am hoping he will start to use them.  He also seems to be tolerating his short splints all day but by the end of the day he says his feet hurt. 

By the time I got home at lunchtime the conservatory had gone, which was great to see as it has only been a sorting place for the last 2 years.  The boys were eager to see what had happened during the day, Ben was getting excited to see the starting of his new room.

Tuesday 22^nd March

Ben was up early today and raring to go, which was lovely to see as he keeps telling me Tuesdays his worst day of the week.  Jane was due after school for physio one of our only 2 sessions by professionals this week the rest is down to mummy, joy.  Ben again worked the whole hour with little fuss which was lovely to see.  He even (for the first time ever without prompting) walked up the stairs one foot after the other he usually always leads with his right. I finally got hold a man I have been trying to get hold of all week, he runs a hydrotherapy session at new pool – we have booked in for his first session on Saturday.

Wednesday 23^rd March

Mid-week at last it seems to be a really long week this week.  Anna was due to come after school which was great.  Ben can off the bus looking really shattered but did manage to walk part the way home before asking to be pushed!  In the morning Damo had mentioned he was worried as Ben was walking with his right foot turned out, so I was going to ask Anna when she came.  Ben had said that Mrs Fox from school had rung to ask the same thing and it was more evident on when he used his sticks.  She said that he just needed to work on more foot exercises and use his sticks gradually.  We did have an email to say hopefully his new DAFO’s will be on there way soon. I must add he is wearing his DAFO’s all day everyday which also means he can use his smaller shoes.  And of course it was wheelchair basketball night so Ben was full of beans.

Thursday 24^th March

Ben got himself up this morning which was new as usually we have normally have to drag him out of bed. The building working is coming on rapidly well looks like it, but I am finding it hard to get things sorted & having to pass through the builders’ yard to get to the garage is not much fun, but I will have to get over it as they say.  For a treat, the sun was shining so I decided to take the boys for an ice cream in the park after school, Ben did promise to work extra hard during his physio so off we went. 

I am finding physio quite hard at the minute as I & Ben are not seeing much improvement, but we have been told by all his physios that he is making huge progress.  I did however see that he is able to do more of his foot exercises and the movements are bigger.  I have not been as strict with his physio this week, don’t get me wrong he still has & will have all his sessions just not as long and intense.  Roll on the weekend.

Friday 25^th March

Ben is now a Toe tapping heel rising pro, I have always been a little dubious about the heel raising exercise as he use to walk on his toes, but know it is now important that he learns how to do it and to use the right muscle to help him walk properly.  Again it was a lovely day so the boys happily played outside for an hour after school, I am hoping that once the clocks change they will play out more as it really good for Ben to do more walking.  The concrete  truck arrived this afternoon to fill in the foundations of Ben’s room, It seems to all be going quite well ~ well so far anyway!!!!!!!!!!!!

Saturday 26^th March

Damo has to do physio today so it will be interesting to hear what Ben thinks of it..  Well he got him to do 5 minutes on the treadmill at 1.3 speed! Not bad :o)

I knew that he was going to the aqua therapy session later so I was no too worried.  Grandma & Grandad paid us a visit – I think Grandad wanted to check up on the building work myself.  The aqua session was FANTASTIC & more importantly Ben loved it.  We have managed to book in for next Saturday as well and hopefully that will be his slot.  It is private and we have to pay but he really looked like he had workout well after so it worth it. 

Charlotte XXXX

Double Hat Trick!!!!!!!

Ben’s challenge this week is to complete double hat trick of physio sessions, that’s 6 out of 6!!!!

Sunday 13^th March

Damo & Jacob had decided to walk up & down Ingleborough this morning! I don’t think Jacob would managed it but I was so pleased when Damo rang me to say he had managed it and was fast asleep in the car – Bless him – We were so proud of him.

Ben & I had decided to go cheer on the Leeds Spiders for the last crucial game of the season which if won they would be promoted to Division 1, so an exciting game to be watched.  It was one amazing game and the brilliant Spiders won 58-35. Go Spiders.

Monday 14^th March

Another Monday is here again, how did that happen!   We had decided that this week we would try Ben in his DAFO’s (small Splints) and see how he gets on.  I thought he might not be best pleased with this as he has to concentrate more wearing these ones but he was willing to try.  To my amazement he came out of school, a little more tired than usual but when I looked down I could se why, he had worn them all day!! Mummy’s physio today – Ben was even asking to do certain (more challenging) exercises which was great to hear.  He had a great session and then when out to play with Jacob for about an hour with his walker the first time since we have been back, he is still favouring his wheelchair.

Introducing 'BOB' the physio ball!!

Tuesday 15^th March

The boys are counting down to Friday as its Red Nose Day. They have chosen there outfits & have sent me out on a mission to find red hair spray! Which I will live to regret I’m sure!!! Again today’s physio when really well Ben worked solidly for the whole hour – MTV seems to be working!  Ben managed to wear his DAFO’s for half the day, so again not bad.  But I am a little concerned as when he gets tired his knees bend, but I guess this will come when he gains more strength in his legs.  All in all it was a good day – Ben says he doesn’t like Tuesdays – don’t know why!!

Wednesday 16^th March

Ben was a little low this morning – mid week blues! But soon perked up when he realized it was basketball tonight.  He really loves his training sessions with the Spiders, he get so much out of it.  The added extra this week was that he was getting measured for a new sports chair by RGK so he was a little more excited.  So off they when to school, I did find red hair spray much to the boys delight, maybe not mine but it will be Damo who will be washing it out on Friday night as I will be out!!! Eck!  Ben again worn his DAFO’s for half a day but he was so tired when he came off the bus, not surprising really he is working so hard not only during physio but all the time, he is muscles are getting stronger everyday and as we only see a little difference everyday other see a huge difference weekly. It was again late by the time we got back from Morley after training, Ben was so happy to have chosen his new chair it’s even in GB team colours, just need to wait 12 weeks for delivery!  It will be here for the start of the new session at least.

Thursday 17^th March

DAFO Update – all day again.....

Ben was so tired when I collected him from school, he just seemed pale & ‘out of sorts’ but as always after some food & a drink he was ready for physio # 4 this week ~ he was still on track for his challenge although I was a little concern that he was so tired.  At the end of the session Laura mentioned that yes he was tired but also she could tell his muscles were tried as well.  This was not exactly what I was expecting – yes I know he is tried because of all the physio he is doing but I just wondered if his body was tell us to ‘back off’ a bit!!! His physio is a little different next week as 2 of his physio’s have annual leave – so it down to me to fill in!!! So I think a gentler week is called for.  Ben's new home physio sticks arrived today so hopefully his others will go to school next week..

Friday 18^th March ~ Red Nose Day

DAFO Update – all day again.....

For the first time in ages the boys were up & dressed straight after the alarm when off! Isn’t it funny how non-uniform days have that effect.  Both boys excited to have sprayed red hair, I was also as I will be out at bath time (Seeing The Script in Manchester) so it was up to Damo to sort & clean them both!!!

Ben was full of beans today after school and the report from Anna was physio had again gone really really well.  One more session till he reaches his target! The evening was a quiet boys night in so I did ask what went on, sometimes it’s best not too.

Saturday 19^th March

Can he do it, the double hat trick!!!!!!!

Oh yes he can – Ben was clearly shattered but pulled off another great physio session so that is 6 out of 6 this week, full marks to Ben.  Once Laura had gone Damo sorted his bike out so then the boys spent the next hour outside enjoying the nice weather (for a change) We did have to revert back to his NHS splints as his USA ones are too big for the footplates, but the difference was clear to see his knees were no longer together when he cycled. The rest of the day passed in a blur as usual for the weekend.

I am so proud of the way Ben has thrown himself in to his physio this week.  It has been a hard week physically for him.  I think the past 2 months are slowly catching up on him and we are hitting a bit of a plateau but this is to be expected.  Next week will be a little quieter for him but we will still endeavour to continue with his regime, but with a gentler approach.

Charlotte xx

One Tough Week!!!!

This week has been a hard one for all of us; I think the aftermath of the last couple of months is slowing catching up with us.  Ben has again found it harder this week, mainly due to the fact that he is walking more with his walker & then becomes more tired and everything then becomes a struggle.  Also he seems to have had a lot of homework this week but I am pleased to say we are keeping on top of – well so far anyway...

Sunday 6^th March

The boys had a lovely time at their sleepover at Auntie Em’s, so after the weekend we have had it was a nice quiet afternoon & evening planned.  The usual Sunday routine reading books & homework & an early night was in order.  Ben chose today to show us a new ‘trick’ he has learnt to do.  Ben had only just been able to do this before SDR, but never able to walk after getting up let alone get back down to the floor without falling.. Take a look.

Monday 7th March

It was such a struggle for me to get up this morning let alone the boys; life is well and truly back to normal.  The boys went off to school as normal and me off to work.  When Ben came home he was complaining that his splints were hurting him, when I took them off there seemed to be a small red mark on his right ankle but nothing really to worry about! Physio was a struggle tonight as Ben was coughing a lot so every time he lay down he had a coughing fit! So I cut it a little short. I also emailed St Louis pictures of Ben in his splints to see if they can offer ant solutions to his pain, and problems with wearing his DAFO’s.

Tuesday8th March

There was not physio today as his physio was away, so I booked an appointment to see his osteopath Amos, who has not seen him since we have been back.  It was lovely to see him he also helped explain why his DAFO’s (small splints) were causing him discomfort.  It was due to him pronating (rolling in on his ankles) so much on both feet the DAFO’s can’t support him. He gave us some insoles to build up his arch to see if they can help the problem.

Wednesday 9^th March

Ben looked very very tried when he came off the bus today, he look shattered.  It was physio & wheelchair basketball this evening, I just wondered if he would manage them both.  Well physio was not the best in fact it was awful – Ben refused to do anything & even got upset, which then made me upset.  I understand that thinks can get hard & on top of him sometime, it just breaks my heart to see him like that.  But luckily these are only short lived times & son he is back on track.  It did however give me time to chat to Anna about his splints – we had decided to try every morning next week to send him in his DAFO’s and to then put his larger ones on at break time, and see how he manages.  Ann would inform school on Friday when she goes in.  At basketball been was full of it , he did have a minor accident – he fell backwards and bumped his back & head on the floor, but was actually fine.  As always Ben did not want to leave Basketball but as I reminded him about Thursday morning and how he struggles to get up he agreed to leave at 9:45pm. 

Thursday 10^th March

After dragging Ben out of Ben, he seemed to have a spring in his step – so to speak today.  He was really happy and even said he couldn’t wait for physio this afternoon, go figure!!

So come 3pm when we arrived back home he was raring to go with Laura.  He worked so hard again for he today, I think he was making up for yesterday which was lovely to see.  He also showed her his new trick, standing up from the floor.  He was so proud of himself as we all were.  We also had a chat about his splint & even spoke about finding a private orthotics to cast & make some new ones.

That evening I received an email from Deanna at Children’s in St Louis saying they were going to  make him some new DAFO’s with alterations that would hopefully sort out the problem and help him feel more comfortable, which was amazing news.

Friday 11^th March

Busy day today lots happening, well Ben has – Friday Xtra after school club then the highlight of any 9 years old life, the school disco!

I briefly saw Anna at school & told her about the splint – we decided to still go ahead with the DAFo’s next week anyway.  She also said that he had a great physio session which was lovely to hear.

It was so lovely to watch Ben get so excited about the disco, he has the same love for music both Damian & I have & I would like to think my dancing style!!!  He even planned his clothes, white t-shirt, jeans & his leather jacket not forgetting the spiky hair, he looked so grown up.  We had agreed he could take his sports wheelchair to the disco s it is easier to manoeuvre and he could really keep up with his friends although he usually just says near the sweet table and buys sweets all night.  How wrong could I be, I was told by 2 staff that he had been on the dance floor all night & they were all impressed with his ability to moving so quickly in his chair – I was so pleased for him, he told me it was the best disco ever.  Again another proud mummy moment.

Saturday 12^th March

Well it’s the weekend again, we have another busy one.  Physio followed by a visit from the Maltby family who are thinking about SDR for their son. Ben had a great physio session today managing to do a few exercises he has been struggling with & he work the whole hour without any breaks. The Maltby’s were lovely & hopefully we answered all their question as best we can.  They had seen Ben’s story on Calendar & got in contact with us, which is what we had hope would happen.

So a bumpy start to the week but again he has pulled it off and ended in style.  

 
Charlotte XX

Back to school & work - Eck!!!!

Sunday 27^th Feb

Well today was a lovely day, we had a few visitors, Auntie Em & the boys, Auntie Nona & the girls.  It was so lovely to have a house full again all the children entertained themselves really. We decided to take a walk to the little park around the corner; Ben wanted to go in his sports wheelchair so I agreed.

Monday 28^th Feb

Well the day has finally arrived it was time for me to go back to work.  I have however reduced my working hours, after the last few months I need some time to myself & also I want to be on hand for Ben in the afternoon if he needs me.  So it was up and get organised as quickly as we could, where does the time goes in a morning.  Ben was a very tired again this morning but as usual put his usual brave face on.  He is trying so hard to be calm & not get upset, as we all are.

Monday is my time for physio, Ben seems to manage his physio really well – I’m not denying it’s still a bumpy road but all in all he is really focused in his sessions as long as I let him know who & when it is in the morning.

Tuesday 1^st March

By Tuesday Ben has dipped a bit and struggled with physio, but still managed to do all that was asked of him if a little slower.  The rest of the week was a bit of a blur to be honest. 

I settled back into work far easier than I expected.  I think it is down to my wonderful colleagues who have been totally amazing in every way.  And the teacher I am working with is fabulous xxx (Cheers Gwyneth)

Wednesday 2^nd March

Happy Birthday Dad/Grandad Richard xxx

On Wednesday Ben stepped up a gear, things seem to just click for him.  His balance is wonderful alot more straight, he has always in the past not been able to keep his back in line with his leg but today he did without prompting!  He can also do sit to stand without support and lock his knees, this to Ben is Huge progress – one very happy mummy.

Thursday 3^rd March

Thursday’s excitement was the arrival of the physio ball.  I am always on the lookout for items or equipment that can make physio a little more interesting for Ben. The ball certainly did the trick.  It is such a simple thing but has so many exercises that he can do and that he seems to really enjoy (so far).  I was a little worried about the lack of strength in Ben’s ankles – he has never had any strength in his ankles but he did not seem to be making any progress & I was worried.  Of course all his physio’s put my mind a rest and told me what we could do to help him gain strength in his ankles.  He is desperate to move down to the smaller splints but I am reluctant to do it until he is really really ready for it.

I have been speaking to a magazine about a possible story on Ben Journey; I will keep you posted on any developments.

Look how tall & straight he is!

Friday 4^th March

Thank goodness it’s Friday, it’s been a busy week one way and another.  I have managed to get out for 2 runs this week which I hope I will continue to do now I have a few spare hours in the day.  I had a meeting with a teacher at Ben’s school about his residential trip to Ingleborough Hall next month.  It’s a 5 day trip & there were a few things we needed to check, but it’s all looking good, & he is SO excited.  Ben had physio in school time today & I managed to see Anna before she left & said he again has made huge progress this week.  Ben is doing so well although we are having a few problems with his splints – I am hoping to get it sorted next week, but having said that he still is taking it all in his ‘stride’ 

He really is one truly amazing young man

The 'New' Mr & Mrs Smithson

The Smithson Men & boys!!

Saturday 4^th March

Uncle Adam & Auntie Katie’s Wedding Day ‘Take 2’

The boys woke very excited this morning; they have never been to a wedding before.  Actually Jacob went to Auntie Em’s when he was 8 weeks old but he obviously doesn’t remember it.  Ben’s physio Laura was coming early today as we needed to be ready & off just after lunch.  Ben laughed through the whole session today a worked so very hard doing exercises he has never done before – Thanks to ‘Bob’ the physio ball.  Then it was a quick lunch bath & get ready for the wedding. 

It was such a lovely day, the boys were so well behaved and look great in their suits!!!  Katie looked beautiful in her dress & Adam look ok too!!! We managed to get a picture of all of us together look smart. It was just amazing – Damo took the boys off at tea time to meet Auntie Em, as she was very kindly looking after them for us so we could go to the evening do child free.  In the evening we again had a wonderful time; it was so lovely to be able to share the celebrations with them.  

Charlotte xx