Apologises for being so slack!!!

It’s been a few weeks from my last blog, where does the time go!!!

I have now decided to do a 2weekly/monthly round up rather them waffling weekly, in the vain hope it’s more interesting!

Ben has been making good steady progress as we are all pleased with him.  I think he has managed to grow AGAIN, which in itself causes a few problems.  But all in all he is doing well.

The boys had a second week of half term un-like me who it was time to be back to work, so childcare was covered by Auntie Em & the Monkeys & Grandma Steph & Grandad Richard for the end of the week.   The boys loved the fact they had more holiday then me, I on the other hand did not!!!  The highlight for the boys was going to the Falconry Centre, Ben had already been with school but Jacob had not so they were both really excited.  They came home full of stories of their adventures. 

Ben continued with all his physio & extra sessions, we are having some good days and some bad but we knew this was how it was going to be.  Ben on the whole is doing so well we are so proud of him word cannot express.  One minor setback was an accident Ben had 2 weeks ago – he managed to fall over his best friend (who was lying on the floor) and break his finger on his right hand!  This has not stop Ben one bit, he was so brave yet again. 

We have hit a small plato with Ben at the minute, we (us as a family & all his physio’s) can’t decided whether this is due to him being scared of making the huge transition to ‘NEW’ Ben or whether he still needs more help and support.  We are fully aware that Ben is always very conscious of how he looks & acts in front of his peers & other, the next stage on his journey is a big one and a stage which Ben has never been able to achieve before.   After speaking to all and words of advice from our wonderful support network of other SDR families online, we have introduced crutches.  Ben was not so impressed at first but has proven to be quite a natural.  The next step however his HUGE, we need to reduce & finally take away his walker.  We had a battle in April when we decided to take his wheelchair away, but sometimes like a plaster it just needs whipping off/away (so to speak!!) Ben has used a walker every day since he was 2 and half years old; this is in sense part of his body in his eyes.  We are trying to reassure him and give him the support he needs to make this transition and succeed and achieve his goal.  We Ben uses his walker he never get a good momentum like we do when we walk, so hopefully he can see how fast he can progress with his crutches. When I discussed it briefly with him I could see the utter fear in his eyes, I just hope that it all goes smoothly and he soon walking with confidence with his crutches.

The BIGGEST event over the past few weeks has been... Ben’s extension is finally ready.  After 2 and half years of consistently fighting Bradford Council to get what Ben needed to meet his ongoing needs.  Dave our wonderful build arrived very early on 21^st March to begin the transformation of the house.  After all the dust, problems, choosing & other glitches the day finally came Friday 17^th June 2011.  Ben was finally in! 

This could not have come at a better time in Ben life, this are getting on top of him and I think his pre-teen hormones have arrived and he needs his own space on only away from us but Jakey as well.  I have to say he has very good taste, everything he has picked for the room matches perfectly.  Ben did allow Jakey to sleep in with him for the night which was very kind as I knew he really wanted to stay on his own. 

With his 10^th Birthday around the corner it will be great for him to have his own space to have sleepovers with his mates – in a Jakey free environment.

Charlotte xx

Half Term May 2011

May Half Term!

Sunday 29^th May

Today the boys were spending the day with Grandma Steph & Grandad Richard, & a trip to Skipton Castle – Knights School!

They had a full on day learning all about Knights & their life, Ben walked the whole day (with his walker) and didn’t seem to be too tired when he came home.  Jacob was full of stories & tales of their day – were as Ben was just wiped out.  

Monday 30^th May

Chilling day was in order for today as we were all shattered and need to just stay put and sort things out!  Plus the builders were here getting sorted as the room is now in the final stages of being finished – Ben can’t wait!!!  I can’t wait as well, just getting a little bit sick of the dust & mess but it will be so worth it!

I tried to Ben to go on the treadmill today but he was adamant that he really didn’t want to so I came up with the ideas of walking to Booth’s – about a mile there & back.  I did promise that the boys could walk back by themselves, well me 20 steps ahead of them.  Ben is desperate to be able to do things more by himself so I am trying in small step to do this for him as I do keep being reminded he is nearly 10!!!!!!!

Tuesday 31^st May

Yet again to we have a houseful of men! So I was glad the weather was good so the boys could play out with the bonus of the Monkeys.   Jim & Jon came to play this morning so a little walk to the park was in order.  It’s so lovely to see all four boys together 

Wednesday 1^st June

Today’s first job was physio at 9am early but we have to be up & sort as we have the builder in everyday!  So after that I gave in and we headed off to the movies to see Diary of a Whimpy Kid 2!  Don’t get me wrong I love going it just the price of it all – not much change from £50!!!  We all had a great time & really enjoyed the film.

Tonight was the first session of Wheelchair Rugby; Ben was so excited I thought he might burst! It was great to see everyone there and everyone in the same position not having played the game before.  Ben had a great time & could not wait till next week.  And what’s even better it starts and hour earlier so we get back at a reasonable time!!

Thursday 2^nd June

Today’s job was hair cut time for the boys mop heads to be cut.  Again I had the same discussion as we do every time – ‘can I choose my style’ the reply ‘NO, not till you are at the grammar school’!!  So the usual trim and we were done for another couple of weeks!!  Then a walk around town was called for, as I didn’t have the car today Ben used his wheelchair the first time in a couple of months!!

Then back home for a few hours before Ben’s gym session at 3pm. Laura had asked him to walk between us but he became very angry and refused to do it mainly because there were so many people around and he was feeling self conscious.  He went off into the gym for his session & Jakey & I left him to it.  After an hour a rather hot & tired boy came out – he had worked hard but struggled on the treadmill, but I feel this is down to him finding it boring not that he can’t do it – So the iPod playlist will be created for next week.  That night Ben wore 2 Splints & Gaits! All night! So pleased!!

Friday 3^rd June

At last Friday is here, it been a lovely week but hard as the weather has not been the best so the boys have not played out as much!  I needed to walk into town today to do a few jobs and because the sun was out we thought it would be a good idea to all walk even Ben.... Walking 1.5 miles!!!

Arts Week!

Sunday 22^nd May

It was an early start for me today as I was taking part in Skipton’s Race For Life.  This was my 7^th Year and what’s more it was 5 year clear for my sister Em, a great way to celebrate with lots of special friends.  Jacob decided now would be a good time to get a tummy bug – NOT!!!  He’s not the best when he’s ill as most little one’s aren’t, and I was very conscious not to get to close to Ben, if Ben got it he would be really wiped out!.

Monday 23^rd May ~ Art’s Week

Jacob was gutted that he could not go to school today as in his words ‘It’s the best week of the school year’ poor lad I felt really bad for him.  Ben arrived home full of exciting tales of what he had got up to at school but told me he was shattered and his feet hurt because other then playtimes he had used his sticks all day

Tuesday 24^th May

Jacob was still not 100% so I kept him off 1 more day! By lunchtime my little ball of endless energy was back so school tomorrow Oh yes! Ben came home shattered again today the only down side to Arts week is that the children change class rooms for each activities so this means for Ben alot of walking with his sticks – so proud of him.

Wednesday 25^th May

Ben was really really tired today so I was glad Anna had been to school and done his physio there as I didn’t think I would get much out of him today.  It was the AGM at Basketball tonight so he didn’t have that as well so an early night was required.  He has walked so much at school this week it is really taking it out of him but it’s build muscle strength & his stamina :o).

Thursday 26^th May

Physio at the gym today – Ben was still excited to be going and Laura has said he is getting better.  I have been worried about Ben left leg turning out as he walks, but I have been told that is due to the lack of strength in his left hip ( the left has always been his worst side!) so we have been give extra exercises to practice to strengthen his hips.  I think we need to increase his treadmill sessions as well – this will give him the right walking pattern.

Friday 27^th May

Tonight was Jacob’s birthday party so both boys were very excited as they each had a friend coming home after school until the party so 4 noisy boys in a half building site was hard to maintain at least the weather was go so they were outside.  Once Damo was home and Grandma Linda had arrived it was time to head off to Fun Planet for 2 hours of Laser Quest!!!! After 2 hours and 13 hot and tried boys it was all over for another year.  Jacob loved it so much I am really pleased it all went well.

Saturday 28^th May

Ben woke up today full of cold and not feeling very well – Laura was not coming today and we decided to cancel his aqua therapy as well just in case.  So on today’s list of jobs to do was to find carpet & lino for Ben’s rooms!!!  He was allowed to choose it himself – would we live to regret that!!!

Ben chose a great carpet & lino and left the tiles to us!  The rest of the afternoon was just chilling catching up on housework & stuff.

Charlotte XX

A Rollercoaster Week!!!!!!!!!!!!!!!!!!!!!!!!!!

Sunday 15^th May

Today the boys were coming to watch me rum my first 10K of the year.  It was at Newby Hall for a charity very close to us, Cystic Fibrosis, my best friend’s gorgeous son Robbie has CF and this was my first event for them and to top it off I was running with my best friend Kath.  Well it was a wet & windy day but I managed a very respectful 1 hour on the dot.  So after freezing in the outdoor the boys were pleased when we stopped at a fun play zone for them on the way home. It was a lovely day just a shame the weather was so horrid – next year Ben want to run the 2k children’s’ fun run – Watch this space...

Monday 16^th May

Ben seemed very quiet and had dark circles under his eye – I feel he is going to struggle this week.  But with everyday we get on & do.  After school Ben knew we were going on the treadmill as we had both made a packed that we would try to use it every other day to build up his stamina and strength.  Also this week school had made to decision to only let Ben use his walker at play times & PE the rest of the time it was sticks all the way!  Ben was not happy about this but I reminded him when we decided not to send his wheelchair to school he reacted the same and only a week later he had got use to it and had forgotten to be fair he has not used his wheelchair in weeks!!!

The treadmill session was brief 5 mins then a rest then another 5 mins; he did say his feet were hurting from all the walking at school so we will easy him back into the treadmill.  He seemed pleased afterwards but need a chill out as it takes so much concentration as well as strength to walk. 

Tuesday 17^th May

Well Ben seemed a perkier today – let’s hope it lasts!  He was still walking with his left foot turned out and needed lots of reminding to keep it pointing forward.  I didn’t know if he has grown again as he eating me out of house & home.  Physio went really well he worked so hard for Jane – I even hear laughing at some point!!  He seems to realise how all the physio is helping him to achieve his wish to walk....

Wednesday 18^th May

When Ben got off the bus today the first think he said to me that his left hamstring had been hurting since morning break and asked if we could do some stretches when we got in and what’s more he said he didn’t want to go to Basketball – which is a first!   So we stretched his hamstring which felt a little tight but not much, we tried 5 minutes on the treadmill and at Ben’s request’ NO SPLINTS’ he coped with the time but was tried at the end so I didn’t push him as I knew it was his second session at the gym tomorrow.  We had a quiet evening getting everything ready for Jacob’s birthday tomorrow.

Thursday 19^th May ~ Jacob 7^th Birthday

Both boys were very excited today – well whenever it’s anyone’s birthday they get a bit giddy.  Jacob was so happy today – he opened a few presents before school and saved the rest until after school.  I can’t believe how much he has grown up over the last year.  He has changed so much, I didn’t know if it anything to do with the fund raising and having all the media attention but he is no longer my shy little boy he’s full of confidence and character.  The evening was a lovely meal out with both sets of Grandparents to Pizza Express – Jacob love it as we all did.  Ben had a full on 50 minutes session at the gym and worked really hard Laura & I were very impressed the difference in one week was great to see, I hope he keeps his enthusiasm with all these sessions.

Friday 20^th May

Well it the end of another busy week. At least we only have one week left till half term.  To say it’s only a 4 week term it’s been a busy one.  The boys are really excited about the extension getting nearer to being completed.  The rest of the evening was a quiet one – Ben seemed to be a little quiet tonight so relaxing & watching TV was in order.

Saturday 21^st May

Well the usual Saturday antics Laura was arriving early so we had to be organised and sorted by 9am which was a struggle to say the least!  I made a deal with Ben I would go for a run while he was having physio and see who was more shattered at the end! It was of course me...  Ben seems to have settled into his routines now and as long as he knows what is happening each day he is more willing to do it, and also he needs to be feed and water before had.  It was my turn to take him to aqua therapy this week – Ben loves these sessions and get so much out of them.  Today I saw him dive to the bottom of the pool at kick his legs hard to get back up to the surface.

Charlotte XX