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Wednesday, 29 December 2010

One small step ...

December 27th 2010 is the date Leo took his first unaided steps, Just 6 steps and the boy is now mobile. His smile was as wide as the Atlantic Ocean we crossed only three weeks ago. Dr Park promised us Leo would walk unaided within the year he just didn't say it would be THIS year.

 Less than a month ago Leo was struggling to just stand upright properly and now he is starting to strut his stuff. He hasn't stopped since then and continues to stride out chanting his mantra from Dr P 'walk walk walk walk' the smile hasn't shrunk in fact if possible its grown wider and wider. He is still wearing his knee high splints and will for the next few weeks but its only a matter of time before they are replaced by the smaller ankle splints and in time just to the insoles. At night Leo is wearing full leg abductors and night splints too, The night time kit will remain in place for the foreseeable future, In fact the ankles on the night splints adjust to increase his range even more. The next issue we have is to set up his physio care in the new year to supplement the physio Jo is doing with him three times a day at the moment. Leos progress is determined by the next few months so please if you see Leo remind him to walk walk walk walk....

Friday, 17 December 2010

and breathe out

Well been home a few days now, sleep almost back to normal. The soreness from the heel cords and hamstring operation almost gone and Leos confidence in his ability to walk is on the rise. He is now totally over his setback and catching up on the lost days.
Last night thanks to Tasha and Jaymee we sprang a surprise party for Jo and Leo at the Peterborough Football Ground, With an amazing disco by Madhatters disco, delicious food supplied by Chef De Le Maison, and Laura's cupcakes were amazing and loved the message written on them and totally agree...Leo really is our little hero. The room looked amazing with the 350 helium balloons and every single thing donated by the company's mentioned and truly appreciated.. And despite the turn in the weather those that made it through had a great night too.
 Well Christmas is just around the corner being chased by a brand new year. This year has been an eventful one and next year looks to be even more exciting with lots of things to look forward too. Leo will l know get more and more confident and who knows that independent walking could be just a few weeks away at the speed he is going at. Leo has been offered the chance to start horse riding and Dr Park totally recommends it. We are also looking into Leo starting swimming lessons too. We have the SDR Christmas party in Daventry at the end of January and catch up with Leos American physiotherapist. Mad Michael is going to be truly surprised at Leos progress. Later on in the year we have to return to St Louis to see Dr Park. Hopefully fitting in a seaside holiday for Leo too.
So from Joanne and Leo l just want to wish you all a merry Christmas and an exciting new year x

Monday, 13 December 2010

Dreams Hopes and Results

What a nightmare journey..almost everything that could go wrong did go wrong!! We were delayed in St Louis by Three hours so including the check in time we spent 6 hours in St Louis airport.. A nice airport but not for the weekend! Because of that delay we were unable to meet the United Airlines flight we were booked on and were changed to an American Airline flight and told to speak to their customer service desk when we arrived in Chicago..easy enough? No the customer service desks are not air side so because we had gone through security in St Louis we couldn't go back to speak to them about changing seats or arranging the assistance we had to wait til they arrived at the boarding desk. Of course once they arrived everyone had checked in and confirmed seats. The only thing they could offer was seats together half way down the plane. There was no fridge for Leos medicine but we got offered a bag of ice and told there was plenty of that. Of course Leos entertainment didn't work either, Luckily enough there was an empty seat so we all moved up one. Leo actually fell asleep as soon as the airplane took off (well it was 23.50 local time). So far it had taken us nearly 15hours to get this far !! Got back to Heathrow at 12.40 UK time and thank you has to go out to the driver of the transfer who had arrived at the airport in time to collect us from the United flight that was due to land at 6.55 and had waited and waited for us to arrive.
Leo was asleep throughout the flight waking up an hour before landing to eat his breakfast. Which he kept down til just as the flight landed then he decided to share it with everyone in view...the only clothing we had to hand was Joannes St Louis top and the AA blanket (we got permission to take it) which was fine until we got off the plane and almost to customs when he shared again!!
The journey from Heathrow to Peterborough flew past (lol) and once the transfer was unloaded it was good to get home although Leo wanted to go right out and collect Tito..
Home sweet home

Saturday, 11 December 2010

the journey home begins

Well the bags are packed and the directions to the airport printed out. Went down to reception and was given the bill for the full 31 days it  is $17.29 which is just for the phone calls. The accommodation was met by Caudwell before we left. Cant say l am looking forward to the airport and to sorting out the seating. Not having Leo on the same row is ridiculous to say the least! Oh well one more Marriott Residence Inn breakfast then we are on the way...just as soon as Joanne and Leo wake up!

the day before...

This morning at Physio Leo just blew us away not only did he walk on the treadmill he asked to do it! Michael was his physio today and he was as surprised as we were! He did all the measurements of Leos flexibility again and his range is NORMAL in fact his right foot(the one worse affected) was better than his mums! He may not have the mobility he had before the second operation but that's only temporary and when he builds that back in a few days he will be straighter and stronger than ever before. His speech and the way he uses his hands has also improved. This isn't on the 'to be expected' list but its a pleasant side effect of the SDR. Leo worked so hard to day even managing a few steps back on his sticks so it wont be long before he is wowing everyone that knows him.
Once physio was done we took advantage of the good seriously it was so warm today even Joanne said so! and went to the local mall. Just as well because Jo had to buy another suitcase.
As soon as it got dark we went to Tilles Park, a local attraction which is a field of Christmas lights you drive along, doesn't sound impressive but its like Christmas Blackpool illuminations and only $9 for the car! Leo loved it especially when we tuned in the radio to the Christmas channel and had Christmas songs blaring out.
Getting back to the room the fun of packing began, My word you collect a lot of stuff in 4 weeks !!
Thought it may be a good idea to check in online just as well not only are we not all sitting together and don't have bulkhead seats Leo is on a different row to us. They have seated him 1 row back! tried to call to sort it out but no luck, the call centre said l have to sort it out at the airport...stress levels rising and not even left the hotel yet!!

Thursday, 9 December 2010

Standing tall.......maybe

Leo had a settled night (thanks maybe to the dose of Valium) he is dressed and ready for physio although not looking forward to it...its going to be interesting !!
Well physio went a lot better than any of us expected thanks mainly to Mad Mike again, That man certainly has the gift when it comes to Leo he knows exactly how to get the most from him and our debt of gratitude is immense not just to Michael but to all the team that's helped Leo through this part of his journey. Leo was of course reluctant to weight bare on his legs today so Mike took it slowly just getting Leo to sit on a chair with his legs flat and then gradually encouraging him to stand ( Leo was almost bent double at this point) and then slowly and firmly encouraging Leo to take one step after another until he was stepping over 12ft. turning and sitting down again. Mike also managed to stretch Leo's legs without Leo realising just simply by admiring the aliens on Leos socks! Leo also managed to side step and walk backwards too. The Lion was  certainly roaring today. Laura popped in to fit Leo's splints and he has four kinds, Full length, Ankle length, adjustable night splints and pollywog's (insoles for normal shoes. The timescale is 4-8 weeks with full length (or until Leo is standing upright) then on to the ankle splints for another 4-8 weeks again depending on the way Leo reacts to them. The pollywog's come in after the ankle splints have done there bit. We do have some confusion over when Leo wears his night splints as he also has to wear Full length night knee abductors too. The night splints adjust so that we can slowly force Leo's ankle into a resting position of less than 90 degrees, This will mean Leo will have full flexibility of his feet. He can already pen his legs wider than he has ever done before and with no pain at all. He is experiencing some discomfort but we are not sure if this is real pain or fear of pain, only time will tell. Once Laura left Michael let Leo ride the bike which considering the noise he was making walking he did with incredible ease. racing up and down the corridor !!
After physio we took Leo to the magic house where he spent the rest of the day laughing and completing different tasks, The magic house is a science museum designed for children so they learn while they laugh and Leo enjoyed it a lot,
Thank you James Lee for the free tickets we really appreciated them. Tonight we went out for our penultimate meal and good food was enjoyed by all!

tears and tantrums

Well Leo spent a restless night crying out from time to time because his legs hurt. He actually had to have his Valium for the first time since he was discharged from the hospital after his SDR. He really wasn't interested in his breakfast and hates the taste of his new medicine (the oral antibiotic).  Before breakfast Farthy went through some basic physio with Leo and he wasn't comfortable but managed to do some. He thought it was funny to put his feet flat on nanny Mandy's tummy and pushed her off the sofa by straightening his legs so we know he can put weight on his feet. He is however refusing to stand at all. lots of tears. Not a happy bunny at all!
He had his last physio session with Erica from America and she must have wondered what hit her. Leo refused point blank to stand and there were a lot of tears. It got to the point where we elected to leave the room and let Leo just work with Erica and his mummy but even the bribe of riding the bike didn't work and the physio session ended with very little work done. We have to remember its only yesterday he had his tendons and heel cords done and it probably does feel even weirder than before. So Leo had a rest day and spent the rest of the day in his wheelchair. We found Steak and Shake today and had the most amazing meal cheaper than MacDonald's but tonnes nicer.
When we got back to the hotel we tried to get Leo to walk using a new game he wanted to play but again he refused so we gave him his new medicine and another dose of Valium and he went to sleep watching Miracle on 34th street.

Tuesday, 7 December 2010

All done now

No 5am IV but no lay in either, All up and ready to go at 6.10, Arriving in plenty of time to sort out the bits and pieces needed for Leo's operation today. Not for us the luxury of a private waiting room just a private cubby but it had a telephone and a power point for the laptop. Joanne and Nanny Mandy were called through to the preparation room where Leo was again given the fish PJ's to wear. Everyone came in to see . Leo and l mean everyone, The nurses, Dr's and Anaesthetists all came in and introduced themselves,We were called through shortly after and Leo was given the loopy juice through his PICC line. This worked so quickly but not as deeply as the staff were hoping so they gave him an extra couple of mm as he was upset when they tried to take him to theatre. Once Leo had gone we went back to the cubby to wait. The receptionist stuck his head round the door and advised us there were coffee and doughnuts in the family room which we sampled and enjoyed. The two hour wait flew by for some reason we were a lot more relaxed about this operation. The phone ringing made us all jump and it was Dr Dobbs just letting us know it was all done and Leo was en route to the recovery room and that we should be able to see Leo within the next 20 mins or so. When the nurse called us through they would only allow 2 people through so Joanne and Farthy went in to see Leo wasn't to much longer before we were also called through as Leo was on the way up to the ward and we met them at the lift. Leo was wide awake and chatting away asking for apple juice. He could not be more different than when he came round from the SDR. He was in no pain at all in fact anyone would think he was on the way into the theatre not on the way out.
This time Leo was on the 10th floor and once again his nurse Jessica introduced herself as did her assistant Wendi. Leo was settled into his bed and was still asking for his apple juice so Jessica gave him some, Then he complained he was hungry so Jessica gave him a couple of packets of crackers which he wolfed down !!
Leo stayed awake and after a couple of hours said he wanted to walk so Jessica checked with the doctor and was told if he wants too then its OK. So we got Leo up and he did try but l think he was just a little too scared so we took him to the playroom instead where he got to meet three of St Louis Ice Hockey players who gave him a poster and some playing cards. The doctor came in and said if Leo wanted to go back to the hotel then it was OK with her...guess what Leo did want to go back to the hotel so that's what we did . There is now one tired little boy determined not to go to sleep

Monday, 6 December 2010

Dr Park revisited..

Well Leo received his last 5am dose of IV antibiotic and Joanne is so looking forward to not having to wake up quite so early and Leo is looking forward to his arm not being thirsty. Angie (the dining room hostess) is back from her sisters and was really happy to see the improvement in Leo, I guess it must be really noticeable now especially to people that haven't seen Leo in a while.
Today Leo really did work hard at physio eager to show nanny and farthy just what he can achieve, He managed 5 minutes walking backwards and 2.5 walking sideways both to the left and to the right, One thing that was missing was the sound of Leo scraping his second foot, Maybe one thing l should make you aware of is before St Louis Leo could NOT walk either backwards or sideways as his muscle tone wouldn't let him but post SDR he now has the flexibility and the strength to do it. Even Michael noticed he was picking his feet up on that exercise. Then onto the leg press where again Leo was able to straighten his legs holding an American football between his knees (Michael explained holding the ball between his legs makes his muscles work even harder) There was very little playing around today and Leo was rewarded with a bike ride through the corridor to Dr Parks office ready for his catch up appointment with the man himself.
  Dr Park came in and Leo surprised him by walking to him on his sticks, Dr Park and Nicole (his second mate) were impressed by the improvement in Leo. Dr Park then asked Leo to follow him out into the corridor so he could watch the way Leo walked, Of course in the corridor is the stickers station so Leo made Dr Park stop and hand out stickers. Dr Park then asked that Leos trousers socks and shoes were removed and then went through a series of requests like sitting with his legs in front of him (Leo's knees are still off the floor but Dr Park said this will be solved with tomorrows operation). He was impressed Leo could now sit cross legged and raise his arms high so the balance is definitely there. He then examined Leo's feet and said he had no doubt Leo WILL walk independently and sooner rather than later, In fact he has said now is the time to start practicing just holding the back of Leo's waist as often as possible. All in all a day of good news.
Because Leo had worked so hard he went to see father Christmas this afternoon and was actually happy to see tears this year..
Well bath and bed tomorrow Leo has to be at the hospital at 7am for his surgery so l guess Joanne will have to wait another day for her lay in.. aw well she will survive !!

Sunday, 5 December 2010

Deep in the heart of The Texas Tenors

OK so you all now know about the 5am drugs so that was done again and that's all l have to say about that!
Leo received a phone call today at the hotel that made his smile a mile wide, JC Fisher (from The Texas Tenors) is arriving at 10.30. Leo has been looking forward to seeing JC  for weeks if not months and he had a huge surprise for him. Well Leo was not the only one with a surprise because when we received the call to say JC was in the foyer and we went down to see him JC had arranged a surprise of his own with the help of Marcus and John with special assistance from Leah Haynes (a Tenor fan that has been enormous support to Leo) JC arrived with a bag full of gifts including a hat for Leo, a guitar and many many other things. Now JC had no idea of the progress Leo has been making recently and the last time they met Leo was in his wheelchair, Today as JC was waiting by the desk Joanne went ahead and told JC to look around the corner and when JC spotted Leo walking towards him using only his sticks well the big man definitely had tears in his eyes, Just a good job Marcus wasn't with him or the wet floor signs would have been needed!! JC took a ton of pictures and was just speechless at Leo's ability and his balance and just how confident Leo was on his sticks. Leo gave JC a bag of gifts as a token of thanks for his family. Unfortunately The Texas Tenors are performing tonight at Branson which is 4 hours away so couldn't stop as long as both he and us would have liked. However before he left he did give Joanne a cheque towards the additional hospital fees Leo has had. We are so very very grateful.
After we waved goodbye to a very happy and still shocked JC we got into the car and headed out to spend the day discovering the local sites......

Saturday, 4 December 2010

The sun shines and all is well

5am drugs done and dusted without Leo even waking up. Nanny and Farthy arrived last night and the smile on Leo's face was a mile wide. First thing today is to sort out the car as the car hire company called and there is an issue with the card so we have to go sort it out.
Well farthy is an excellent driver even with all the assistance from the back seat ! So we set out on a voyage of discovery and discovered Walmart. Managed to finally get some lucky charms and assorted sweets to bring home and Leo received his Evil Dr Pork Chop for those of you uninitiated to the wonders of Toy Story Evil Dr Pork chop is a plastic pig. So we now have one very happy little boy and one more thing to pack to bring home!!
Dinner today was at Applebees and again baby back ribs were enjoyed by all. Going out to eat back home is never going to be the same !!
Well we are back at the hotel and Leo is going to be spending the next half hour or so walking and playing football.
Tomorrow is a big day J.C Fisher from the Texas Tenors is driving over (a short 4 hour drive) to come and see Leo and we are really really looking forward to seeing him.

Tour de St Louis

This morning started as usual with the 5am wake up session on Leo's IV. Going to be weird on Tuesday when all this stops! Physio again was amazing Leo walked with his sticks and Leo took 2 steps UNAIDED dont know who was more suprised Leo or Michael ! and then spent 20 minutes playing football with Michael using his frame, running about, kicking the football, changing direction and using his frame to block and change the direction of the ball. Obviously Leo won 5-2. Leo then got on the bike and cycled around the hospital dept, stopping and starting the bike himself.
Once we got back to the hotel the nurse came over to check the PICC site. Lucky she did because Leo has developed a sore under his arm caused by the tape rubbing. The PICC line wasn't moved but the tube was just put to one side and re taped so it doesn't interfere with Leo's arm movement and its now nowhere near his armpit.
We have arranged to hire a car for when Leo's Nanny and Farthy arrive so are waiting for it to arrive.
Leo has settled down to life in the hotel and is loving spending time with Findlay and Jack. Its so nice to hear Leo's Laughter ringing out again

Thursday, 2 December 2010

And the beat goes on

Another 5am dose all finished with barely a murmur from the little man himself. Leo has physio today with Michael. He hasn't seen Michael since Wednesday when Michael noticed how uncomfortable Leo was and had a word with Dr Park on our behalf leading up to Leo being examined by him later that day. I think he will be impressed with just how different Leo is and by how much Leo has caught up and by his attitude to the physio, (just watch Leo will play up and refuse to do anything today now). Would not have believed this time last week when we were sitting in the emergency room how much better Leo is today. This time last week we couldn't even touch him because he was in so much pain. Really looking forward to him working out with Michael. Physio is at 9 ! Jo changed the dressing on Leo's back and noticed the skin around the scarring is redder than it was last night so will mention this today.
Well Physio went really well eventually. On arrival Leo was really excited to see Michael but unfortunately didn't calm down and basically just wanted to play. For those that haven't met Michael you will not truly understand when l say Michael really is as mad as a box of frogs, However he takes Physio very very very seriously, Leo walked from the entrance to the physio dept to the Gym (about 40 steps) with his sticks but all the time wanting to play and not really trying and it wasn't long before Michael and Leo had words! Once that was over Leo worked really hard and actually walked on the treadmill forwards for 5 minutes, sideways to the left 2.5 Min's and right 2.5mins and backwards for 5 Min's, Leo then went and did Leg presses and did them so well Micheal made it one stage tougher by lifting the bench to make Leo work harder, because Leo wouldn't co-operate when we first got there he missed the chance on the bike today. Michael has told him if he works hard he can get to ride it again tomorrow.
After Physio we popped into Dr Parks office and asked to see one of his team about Leo's back, Nicole came through (we met for the first time at Leo's assessment day but she has also seen a lot of us in the hospital) She examined Leo's back and agreed it did look a little inflamed so gave us some antibiotic ointment to put on it just to be on the safe side.
We got back to the hotel in plenty of time to administer Leos drug and had a pizza delivered and a lazy afternoon. In the early evening we met up with two of the other families out here and had dinner at TGI Fridays. Nice food and Leo got to meet Superman (a street performer who is Superman's double) but the restaurant was freezing cold as they had an issue with the heating.
We then popped to the local supermarket for some supplies an headed home for a quiet evening in the room.

Wednesday, 1 December 2010

And a star is born !

Another early start because of Leo's 5am IV. But luckily managed to administer it without waking him up today. Leo also managed to eat fruit loops, banana and apple juice for breakfast and was soon ready for physio. Today Erica from America (this is what Leo likes to call her) had Leo walking on his frame up and down the physio room then Leo got onto the bike and for the first time managed to power himself chasing his mummy, He then went on the treadmill and would still be there if Erica hadn't pulled him off he then got to stand in front of  mirror and draw on it with shaving foam. He also had to stand to a bench and pick up the pieces to pay connect 4 very much like the jigsaw exercise of yesterday. He did all this willingly and in really good humour hard to believe its only his second day out of bed since his discharge from hospital Monday.
Of course by the time Leo got back to the hotel and had eaten his lunch,it was time for the nurse from Coran to call to take blood, Leo wasn't really concerned with her drawing it from his PICC line but really didn't want the finger stab, Unfortunately its the only way they can check that the drugs he is receiving are still at the correct level so it really is a necessary evil. However once the stab had been done Leo was quite content to sit watching Tom and Jerry while the blood was drawn.
The nurse left and once the 1pm IV had been done and because he had been so good we decided to take him to see the new Disney film Tangled in 3d. Leo loved this film and the sound of his laughter filled the cinema. He managed to eat a hotdog and a corn on the cob for dinner tonight. Unfortunately Leo couldn't play with his friends tonight so we came back upstairs to the room where he is currently receiving his 9pm dose snuggled up on the sofa watching the Grinch.