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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 weather...no 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 him...no 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.

Tuesday, 30 November 2010

Nurse Joanne signs in for duty

And its a another St Louis morning. The alarm went off at 4.50am and the 6 syringes we need were assembled. Going through a sleep filled head..wash hands, uncap PICC line, clean line with alcohol swab, break seal on saline flush,  push up the barrel (to remove air), Insert into line, plunge to 2, take off the line, Wipe with alcohol swab, connect anti-biotic number one, Place syringe in pump, pull back the trigger , line up the syringe neck, Switch pump to on (with alarm) wait one hour. Alarm goes off, Wash hands. Disconnect line add cap, Swab with alcohol swab, break seal on saline flush, push up the barrel to remove air, Insert into line, plunge to 2, take off the line, wipe with alcohol swab, connect anti-biotic 2, place syringe in pump, pull back on trigger, Line up the syringe neck, switch pump to on with alarm. Wait 30 minutes, Alarm goes off,  Wash hands, disconnect line and cap it. swab with alcohol swab, break seal on flush, push up the barrel to get rid of the air, insert into the line, plunge til 2, take off the line, swab with alcohol swab, break seal on Heparin, push up barrel to remove air, insert 1.5ml, Wipe line with alcohol swab and recap PICC wash hands and another dose of anti-biotic is done without waking Leo.
Leo woke up about 8.30 and went down to breakfast where he was greeted by Angie...she has really missed Leo. Leo had scrambled egg on toast and managed to eat almost half of it. He also had chocolate milk. Leo has to go back to the hospital for physio at 11. Then the rest of the day he can pretty much do what he wants.
Well Leo arrived at Physio only to find his walking sticks have been delivered. They are called quad sticks because on the end is a weighted arm with four limbs enabling Leo to get his balance. Now we have had tripods for Leo which he refused to use because they were unstable (or he was) but with these sticks Leo was up and away. He managed to do 10 steps with Erica (the physio today) just supporting his lower back. He then got to stand on a wobble board which is what it sounds like. its a board with a half crescent fitted underneath making him check and recheck his balance. Leo managed to stay on board and got to throw a ball at a basketball hoop as a reward. Erica then had Leo sitting on a chair and leaning down to pick up a jigsaw piece and then standing to place it. It was a 10 piece puzzle so Leo bent and straightened 10 times. This exercise works on his core strength. As a reward he was allowed to draw on the chalkboard. All in all Erica was really pleased with Leo today especially as its really his first day out of bed in 5 days.
This evening we went out to dinner at Applebees and Leo almost managed to finish his meal so looks like his appetite may be returning. Once he rested Leo went down to the lobby to meet up with Finlay and Jack to play for a while...well they think they're playing but in reality they're all practising their walking Leo managed to use his sticks with NO HELP for at least 6 steps. As Dr Park says in order to learn to walk you have to walk walk walk. Unfortunately the evening was cut short because three little boys got very tired and Leo had to have his evening meds done so we returned to the room to start again 5am tomorrow

Monday, 29 November 2010

Caterpillars and Fairies

Well it was an early start today the doctor came in at 6.30 to check Leo's back, The dressing was nice and dry. Soon after Leo's nurse came in to check there was no issues with his IV line and everything seems fine there too. At 8am two nurses from the PICC centre came in to check 'the quality of Leos veins' they do this with an Ultra Sound machine and although scared Leo was interested in what the inside of his arm looked like. They managed to locate a really good vein and marked the spot on his arm the procedure is due to happen at 8.50. Like clockwork the nurse came in to take us down to the procedure centre. Leo travelled down in the Caterpillar wagon again.
Once at the centre we were asked to wear hairnets and face masks as the room is a clean room. The procedure was explained to us in maybe a little too much detail. The doctor came in and introduced himself and after a struggle with the IV line that was in Leos arm managed to insert the Ketomin. Leo immediately was away with the fairies. We were given a pager and told to come back when it goes off.
In our absence a line was put in through the vein in Leos arm and threaded down to a large vein just above Leos heart. The insertion point was then dressed and tapped and secured. This can last up to several months without needing to be removed luckily Leo only needs it for 7 more days.
We hadn't even managed to finish our drinks before the pager went off. We scurried back to the room to find the top of his table covered in swabs with blood on. This was a little too much for Jo and she asked to go sit down. Once the clean up was done all that was connected to Leo was the monitor keeping an eye on Leos vitals. Joanne at this point had excused herself to the loo. Turns out it was just as well because Jo passed out and came back looking very green. So Green the nurse told her to eat crackers and drink Coke. Leo was still pretty much spaced out and slowly came too. He wanted to go back to his room in the caterpillar and as soon as the doctor said he was good to go we went!
Leo was very very scared when we went down to the room but is so totally calm now. Jo has managed to do his stretches and Leo even helped with them. We thought he would have no memory but he has just asked Jo why she was dressed as a doctor!!
Leo and his mummy are currently snuggled on his bed watching Mickeys clubhouse.
Just had a visit from the representative of CORAN who is the company that does the IV at home. She scared us when she asked us to pay for the drugs Leo will be having. Even going so far as to say we couldn't leave the hospital until we paid. We sent off an email to James Lee and asked him to come and see us Urgently. He quickly responded advising us he had to go into a meeting but would come up straight after which to be fair he did. We explained that although we had no issues with the medical care Leo has received we feel that we haven't received the support we should expect for the non medical issues and explained about the conversation about the drugs. James said we DO NOT pay for anything yet and said he would contact the company and get it sorted. Which he did. He then accompanied us down to the physio dept on the 4th floor
Leo did manage to go to his physio session today and managed to do some high kneeling and Nicole got some good stretches out of him. The session was hampered by the fact Leo was still attached to his IV but even so managed to do some bike riding around the physio room. James stayed throughout the session sorting out other issues while he was there leaving us at the lift as we made our way up to the 12th floor. Once we arrived back we were told that the nurse from Coran would meet us back at the hotel and would talk us through giving Leo his drugs.
Unfortunately the drugs weren't delivered to her until after 6 but she arrived soon after with two huge bags full of the paraphernalia Leo needs for the next 7 days.What followed was a very in depth lesson on preparing and administering IV drugs as this is something we are going to be responsible for. Joanne was worried sick as she as a real phobia about blood and veins and anything to do with them but with the nurses help she successfully gave Leo his first IV at the hotel.
Next IV due at 5am

Sunday, 28 November 2010

Sunday Smiles

Well Leo had a brilliant night and managed to sleep all the way though
The hospital encourages parents to get into bed and cuddle up with their children and Leo loves this. His temperature has stabilised and he had no fever last night. The doctor has been in to change the dressing on Leos back and confirmed that Leo is having the IV line put in tomorrow morning (hopefully after Physio) and then he can be discharged back to the hotel. Once back at the hotel the nurse will come to us to administer the drugs. This will be for another 4 days, After which the line can be removed and further anti-biotic will be given orally. This means his second operation can go ahead and hopefully we can still leave the US on Dec 11th.
Leo celebrated with fruit loops !
The nurses came in to check Leos vitals and noticed his arm was sore so it was decided to move the IV line. Leo was not happy and got very worked up
The good news was that Leo was machine free for a few minutes so managed to walk up and down the ward on flat feet holding his mums hands, He took lovely big steps and was chatting to all the nurses.
All too soon we were back in his room for his new line to be fitted. This time it was really quick because they paged the IV nurse to fit it. (Her job is to take blood and fit lines to children so she is incredibly quick). Once his new line was in place Leo wanted to go to the 8th floor (the playroom) which unfortunately was closed so we went down to the cafeteria and he had an Oreo ice cream and then up to floor one where he was quite content to watch the kinetic ball display.
As you can see he is back in the caterpillar, This allows them to get off the ward without having to sit up or be carried, There is a certain skill to pushing them but all in all we're not too bad.
We were off the ward for just over an hour and Leo wanted to go back to bed.
He is laying on his bed now watching Home alone two.

Saturday, 27 November 2010

ok maybe only a small train

Leo had a good night and slept through. He even managed half a bowl of fruit loops for breakfast. Dr Park came in to see him and is really happy that the scar is no longer leaking and so far looks like its going to be best case scenario. Even though he is still hooked up to his IV Dr Park advised to get Leo up out of bed and sitting in a chair today. So at this minute in time Leo is sitting in the chair by his bed watching TV.
Leo has been quite content today and has been letting us pick him up and touch his back with nothing more than the occasional ouch. We managed to get him into a caterpillar wagon and down to the canteen where he had a milkshake. He was glad to get back to the room but wanted to sleep in the caterpillar and not in his bed. Mind you once Katie (his nurse) came in with a couple of presents for him...namely a sponge bob and a Gary he cheered up again in fact he insisted on pictures being taken.
Tomorrow should hopefully continue to bring more stability. Dr Park said he will see Leo again tomorrow morning.

Friday, 26 November 2010

Maybe that light at the end of the tunnel is a train !!

Well Leo did manage a settled night and is in a better mood today. We were confident he was on the mend ..........hmmph bad move. Leos physio Erica popped in to give Leo his daily physiotherapy and it was while moving him to the therapy room that we noticed it !! The ONE thing you were warned to lookout for.... Leos scar is leaking. This is not great news. Dr Park has been called. Meanwhile one of his team that happened to be on the ward took a look. She says it looks like the antibiotics will be continued and the steroids are on stop now. Depending on what Dr Park says we may be discharged with an I.V line in place and someone will come to the hotel to administer the drugs. We are being told so much what if information that its difficult to know what to write.  Whatever happens we are not going back to the hotel anytime soon Leo is absolutely fine if you don't touch his back or try to take blood from him.
Will write more once Dr Park has been up.
Well Dr Park has just been up and we are definitely in here til after the weekend at least. He is now sure it is an infection and the antibiotics are what Leo needs right now. Worse case scenario is if they don't work then Leo will have to go back to theatre to get the wound flushed out. His temperature is stable now and he must keep drinking a lot (they're going to leave the IV fluids running too).  Best case scenario is Anti-biotic does work then he will have a Hickman line placed and be discharged back to the hotel with a nurse visiting to administer the drugs. Leo is fine in himself and has found Candyland again (a board game aimed at preschoolers) just wish he would eat a little more than fruit loops !
Well the results are in and the fluid is not spinal so definitely an infection. Leo managed to eat half a baked potato with cheese, Half a brownie and some ice cream too. He is now peeing a lot (thanks to the additional fluids via IV and counting to ten when he drinks apple juice) however he is now very wary of anyone approaching him wearing gloves as housekeeping found out tonight! Unfortunately it does look like his temperature is on its way up again but nothing Advil wont sort out hopefully.
He has his eye mask back so is safe again. He really does use it as a security blanket. Maybe tomorrow will bring more good news. Dr Park to visit again in the morning.

Thursday, 25 November 2010

We did not sign up for this !

Its 4am and Leo is still crying out in pain. We have tried giving him more medicine but he is refusing to take it. He just wants to sleep. He has pain in his lower back away from the operation site. He is reluctant to drink which is making us think it could be a water infection (something we were warned could happen). Hopefully he will go back to sleep soon and will feel better when he wakes up. Well that idea didn't last long. At 5.30am we were en route back to children's this time via the Emergency room, Scary enough this happening but worse was the fact we don't know how the U.S medical system works. We have Dr Parks telephone number but felt it too early to wake him up turns out his was awake anyway because we got a telephone message left on the hotel phone from him. Turns out emergency rooms are the same the world over just more forms in the U.S. Before the forms were completed Leo was examined by a triage nurse who was very careful not to actually touch Leo and asked him the questions first, Leo was soon shown through to an examination cubicle and the paperwork was completed. The E.R doctor got in touch with Dr Park who sent one of his team over to check on Leo. They are almost certain this has nothing to do with the wound site. They have taken bloods and are running all sorts of tests on it. We were then transferred back to 12th in fact we are in the room next to the one we were in after the operation, The nurses even recognised Leo.
Once Leo was settled again and more bloods taken (Leo definitely not impressed). Dr Park came in and examined Leo, He explained there was no sign of infection although there is exquisite pain (apparently exquisite means very very in medical jargon). He advised they would be continuing with the IV anti biotic tonight and depending on how Leo is will be starting Steroids tomorrow. Leo has now decided he doesn't want to walk and wants to go back to England...I know someone else that's starting to feel that way too.
Its 4.30 local time (22.30 UK) and Leo is officially running a fever again its reaching 102f, Blanket off ibuprofen given.
The fever settled once the Ibuprofen kicked in and Leo became a lot more settled. The swelling in his back is still causing him some concern. He has managed to keep two bowls of fruit loops down, unlike the Shepard's pie he had earlier. He is sleeping now. Hopefully will wake up feeling a lot better. Its 22.30 local time (04.30 UK) and fingers crossed he stays asleep till morning.
Thank you for your messages of support they're really appreciated right now.

Wednesday, 24 November 2010

just when you think you got it sussed

Not a great night for Leo. He woke up this morning complaining his back hurt but he was twisting and turning all night, After some medicine it settled down. He really didn't want to go downstairs for breakfast today so he had fruit loops in the room. It was an early start as we had to be back at Children's for 8.15 for a doctors appointment.Well Leo got to meet another American doctor today, Dr Dobbs. Dr Dobbs is an orthopedic surgeon. He examined Leo and said he really needs both heel cords doing and also both his hamstrings need releasing. He did explain that if they went ahead and only did the right side it would only make it more obvious in the left. Apparently physio can continue on the same day as surgery and this shouldn't set him that far back.
Leo is feeling grumpy today so he is now watching TV and hopefully relaxing.
Well Leo fell asleep and woke up feeling even more uncomfortable. He took his painkiller medicine and we arrived at physio only for Leo to complain. He complained about getting up from his bed, he complained about the medicine, he complained about being lifted and he complained about getting into his wheelchair, He keeps saying his back hurts.
Arriving at physio with Erica it was obvious even to her that Leo wasn't putting it on and she asked Michael to come and take a look, even Michael couldn't make Leo smile today. He advised that we go through and speak to Dr Parks. Erica asked Leo if he wanted to go in his wheelchair or on the bike. Leo chose the bike and with Erica's assistance managed to cycle out of the physio dept and along the corridor outside it, He then was asked if he could walk for a little bit and holding onto the small rails he also managed to do this even though it was clearly uncomfortable for him. Deanna bumped into us and managed to measure Leo up for his sticks, she encouraged him to walk more and he did. Leo was getting more and more upset so Erica decided to take us along to see Dr Parks (Deanna spoke to him earlier regarding Leo and he asked to see him). Dr Parks spent a good 30 minutes talking and trying to examine Leo, He confirmed the operation site was clear but did say there could be an underlying infection happening, advised us to get Advil and let Leo rest making sure he drank loads. We are to call him tomorrow at 10am on his personal mobile phone. Can you imagine that length of concern by a UK doctor?
As l type Leo is running a temperature of 100.02 and has taken his first dose of the Advil and is now resting peacefully.

Tuesday, 23 November 2010

English eyes are crying

Well this morning was a sad one for Leo as he had to say goodbye to Kayley who is heading home to Ireland but she didn't escape without one more kiss.

Once we said goodbye the Kayley and her family we headed back to children's for Leos physio. This mornings physio was with Erica and Leo worked really hard. He started off with 10 minutes forward walking on the treadmill, Then did some side walking and finished by walking backwards. He rested a lot between the walks but managed to complete the treadmill session easily, In fact he then went onto the leg press bench and again worked hard. This is Leos favourite piece of equipment so far, Leo has to lay back and press down with his feet and the backboard slides up and Leo has to bend his knees on a controlled descent (he did it to the count of 10) He really loves this equipment and is something we really need to consider getting Leo when we get back because it will really help build up those unused muscles.
During the physio session Erica received a page from Dr Dobbs, Leo has an appointment at 08.15 tomorrow morning to discuss his Hamstring release. His surgery is scheduled for December 7th just 4 days before the flight home. At least its being carried out here under Dr Parks directive so we know there will be no issue with it although it will knock Leos progress back a few days so he is just going to have to work harder til the date of his second operation !
We went to McDonald's for lunch and Leo actually ate most of his food. This afternoon we are going off to the Arch and Leo will get to go in a helicopter with his friend Finlay.
Well now we can say we have been to one of the USAs national monuments, The St Louis arch is actually three times higher than the statue of liberty and was completed in the summer of 1966. We know this because we watched a film about the building of it while Jo went up to the top, Unfortunately due to the number of steps Leo was unable to go. However the view from the top was amazing

Monday, 22 November 2010

Life as we know it !

Today Leo managed to sleep until 8am and really enjoyed his first night back at the hotel last night, Especially playing with Kayley, Emily and Finlay. The three of them sat around a table all engrossed in their D.S's. Didn't seem to talk much between themselves but were content just being together. The parents did what the parents do, all sat around the bar chatting and going through experiences of the day, The evening was tinged with sadness as we had to say goodbye (for now) to Deborah, Phil and Mitchell, they're on their way home today as is Jakob and Macey, Tonight's going to be tough too because Kayley and Leo are about to be separated again when Kayley goes home. Going to be strange without the Irish blarney !
Well after breakfast ,where Leo was pleased to see Angie again, Angie is the morning waitress and is always bright and bubbly and Leo loves her good morning song, Leo went back to Children's for his first physio session as an outpatient, This morning session was with mad Michael. No stretches today. Today Michael put Leo on the treadmill and Leo managed to walk flat footed (most of the time) even asking Michael to increase the speed a few times. Leo also managed to walk backwards on there too. When we explained that Leo had a walker on order Michael found one he can borrow for the time being and Leo used it to walk the track (racing his mummy) which goes around the main physio area. Leo then went onto Leg presses and really worked hard on there all the time being encouraged by Michael who turns everything into a game. After the leg presses Leo was encouraged to walk some more and did so reluctantly at first but Michael promised him a game if he did it, So Leo being Leo and easily bribed did walk more and was rewarded by a game of catch with an American football. Michael said the only way to improve his walking is to walk walk walk and that's just what Leo intends to do.
After the physio session we took Leo over to Union Station where there is a giant fish pond where you can feed the fish, He thought it was funny the way they all came up to the surface with their mouths open waiting for the pellets. After the fish were fed we took a look around the shops but hunger won so we went to Hard Rock for lunch. Leo got a Tshirt and a cup to keep.
We are now back at the hotel and trying to get Leo to have a rest ready for his last night with Kayley...looks like tears before bedtime !

Sunday, 21 November 2010

Freedom !

What a difference a day makes. This morning at 08-30 Leo had a physio session that lasted an hour and a half with Suzie. She did some leg stretches and measured his before and after flexibility and the movement on his left ankle is NORMAL the movement on the right has improved greatly and its obvious the moment you touch it. Leo can not only move his foot up and down,wiggle his toes but he can now go side to side too. He had none of this flexibility before the operation. He is still tilting to an angle of about 120 degrees when he sits up and is finding holding his head up difficult (this is not unusual when you consider how heavy your head is and the fact its sitting on the top of your spine). He can flex his hips and can now open his knees on command. He totally enjoys kicking his lower leg up when he lays down and can do that independently . These movements may not seem enormous considering the operation he went through but they're all foundations of independent walking. Suzie also went through all the discharge paperwork and showed us the quad sticks Leo will be bringing home and also his knee braces he will have to wear from tomorrow night and for the next 6 months at least. These braces are soft and nothing like the UK abductors. Suzie got him sitting and holding his balance on a step while throwing a ball at a basketball hoop. Then she asked Leo what he wanted to do and he said walk. So she said if he walked four steps he could throw the ball through the hoop again. Leo still needs a lot of support but he managed his four steps with flat feet and got to throw the ball. This game continued until Leo reached 12 steps. Suzie then asked what did Leo want to do and he said 'bike' so he got to ride on the bike all round the physio room and out into the corridor turning the pedals all the time. Suzie was pushing it from the rear but as she explained Leo circling his legs even with no weight behind is making those muscles work. At the end of the session Leo (although yawning and obviously tired) complained. However once we pointed out we can now go back to the hotel Leo cheered up a lot.
Its amazing how much stuff you accumulate in just a few days however Leo balloons laptop handbag and suitcase were all loaded onto the shuttle bus and was back at the hotel by 11. Leo is exhausted but determined not to sleep so we compromised and he is now sitting on the sofa watching TV. We will take him out later, we need to get groceries and he needs fresh air. Outpatient Physio starts tomorrow at 11am with Mad Michael

Saturday, 20 November 2010

St Louis Grand Prix

When we were told that the children suddenly become almost back to themselves as soon as the I.Vs are discontinued we were pleased, When Leo was hooked up to his and crying in pain we just couldn't see that actually happening. Well today is 4 days post op and Leo is out of bed, Sitting up, has had two sessions of Physio today and is laughing at cartoons. Its true one minute they look so ill suddenly they're back to their normal selves,
The first session this morning with Jill was just breathtaking, Leo was absolutely happy to go along with everything she wanted him to do. He even managed to roll over and get into the crawl position abit with Jill's help and support. He negotiated a game of ten pin bowling which Jill agreed to if he did his stretches, needless to say Leo got his game.
Leo still hasn't got his appetite back but this isn't unusual so basically he is allowed anything he wants, Today's food of choice is fruit loops and Oreos. He rested for a while on his bed and took skype calls from his daddy and nanny and farthy.
The second Physio this afternoon was even more mind blowing. The Physio Toni asked Leo what he wanted to do and Leo said walk. Leo and Toni went into negotiation and again Leo agreed to work in exchange for toy time. Leos legs are so flexible now its unbelievable. He can easily put his ankles at 90 degrees with no resistance at all, His hamstrings are tight but we knew that hence the secondary operation before we come home. Leo worked really hard and didn't complain at all during the session. At the end of the session Toni got a Kwalker and asked Leo if he wanted to try it. With Toni's help (and a big mirror) Leo happily took his first assisted steps since the operation and the smile on his face was a mile wide. Toni promised Leo he could walk again tomorrow..Leo cant wait!
Once Physio for the day was over Leo and his room-mate Finlay wanted to explore the hospital. I think because they've been stuck in the room all this time they're relishing the time out of it. We took them to the roof garden for some fresh air.
The roof garden is being prepared for Christmas and is really magical with lots of lights and giant nutcracker soldiers and candy canes hanging from the branches.Leo and Finlay loved it, Around the front of the roof garden there is a fence but within the fence are portholes the children can crawl into to look down over Forest Park.
As you can see the view is brilliant. You may also notice the angle of Leos head. Jo is purposely not supporting it because any enforced movement at this stage could cause damage to Leos spine. He is in charge of how he holds his head, Jo is supporting his back and shoulders with her legs.
 Just outside the roof garden there is a sloped hallway and boys being boys wanted to race.....

The boys laughter rang out all down the hallway...A great sound to hear, Well tomorrow 8.30 am is Leos last inpatient Physio then he will be discharged from St Louis Children's to continue his physio as an out patient....

Friday, 19 November 2010

Leo finds his feet..

What a difference 24 hours can make. Today Leo is off all IV drugs and is just having Tylenol as and when he needs it. He had another unsettled night but seems to have woken up a totally different person. He is smiling laughing and trying to talk his way out of things he doesnt want to do..like being turned.
Today we finally met the famous St Louis physios. An amazing no nonsense group of physios that just seems to know how to react to Leo. The first session was basically showing us how to pick Leo up out of bed and even though he complained all the way through it Leo did agree once he was sitting in his wheelchair that it didnt actually hurt. Secret is to keep the back as straight as possible. Once Leo was in the chair we gained freedom from the room for one hour maximum. Leo was wrapped in a blanket and we escaped to the roof garden for some fresh air. Leo was amazed at the christmas decorations and they will be 'awesome' once the lights are switched on. After the roof garden we went along to the playroom. WOW what a room, every kind of toy you could think of and activity you would need is there, everything is clean bright and complete...no missing bits to these games. Leo chose connect four and candyland to take back to his bed so three guesses what we will be doing for the next few hours...
We got Leo back to bed in plenty of time and he allowed the help without to much complaining.
Leo doesnt seem to have his appetite back yet and we are struggling to get him to eat much at all so basically he can order anything he likes...yes l did say order.. you can select anything from the menu of well over 200 items and just ring the kitchen and request them, The telephone ordering is available from 6am to 8pm but if your child is hungry outside those hours the cafeteria downstairs is open until 02.15am and the nurse will happily go down and collect anything you want!
One thing that has happened today is Leo has developed red angry sores on his bottom that are starting to pus and smell, we think its an allergic reaction but a doctors already been to see him and prescribed something for tonight and arranged for a skin specialist to see him in the morning.
At 4pm (10pm uk time) Leo had his first official physio session with Mad Michael. He met us in the room and took us down to the physio room. He asked Leo what he wanted to do and Leo said crawl, Michael said 'no crawling here buddy its walking all the way' Leo of course complained and did so throughout the session. Michael showed us just how large Leos range of movement is and even took the time to show us by feeling if we are carrying out the stretches properly. Leo was asked to put his arms around Michaels neck and Michael helped him into the standing position. Looking down there was one obvious change Leos feet were totally flat to the ground !! He had put his feet flat without even thinking about it !!


Michael showed us the four stretches he wants working on and all too quickly the session was over. Leo is now basically allowed to sit and turn however he wants to as Michael said if it hurts him he wont do it . The only restrictions are how he is handled but he can pretty much wiggle his way anyway he wants to be.
Bless his heart within 10 minutes of getting back to his bed Leo was fast asleep...probably stay that way til morning !

Thursday, 18 November 2010

As dawn breaks its not birds singing its alarms ringing

Wow this SDR procedure is worse than any roller coaster ride! Just when you think everything is back on the straight and narrow another curve and drop hits,
Leo had a VERY uncomfortable night and is now struggling to deal with the pain. The nurses are great and can administer extra painkillers which is brilliant however ever time they turn him he screams out, Begging for the pain to stop and to go away. Its so tough listening to that watching the tears stream down his face. The only plus side is we know he will have no memory of these first few days post operation, so although it is tough to go through at least we know he wont remember. This pain level and Leos reaction to it is not a suprise we were told that this is the case. After all Dr Parks had to go into his central nerves system in order to complete the operation and the nerves just need to settle down again right now they are on high alert. Doesnt make it any easier to watch. Every four hours Leo is receiving a high dose of Valium and that does take the edge of and allow him to sleep. Unfortunately the nurses need to turn him often and thats when the pain peaks. Its very dramatic when that happens because his heart rate goes up through the roof and alarms go off. Not really the sound any parent wants to hear. When leo does manage to sleep he sleeps for a couple of hours at a time
The eyemask was given to Leo on the flight out and its become a kind of security blanket for him. He pulls it down over his eyes when he wants to be left alone and it sits on top of his head when he wants to interact!
He is sleeping now. This is Leos scar its about 7cms long and as you can see no stitches the skin is rejoined using a type of glue.

So far its very eventful day. Leo was visited by Kieth who has cast Leos legs ready for his splints post op. He is down to only one infusion going through and that will end soon. Dr Parks has just visited and as other families have stated he really does just appear. He examined Leo and confirmed that he is going to need another operation before he goes home. Dr Parks has referred Leo over to Dr Dobbs the orthopedic surgeon and we are waiting for an appointment to see him. The second operation will release his hamstrings and after that there will be no stopping him. Just hope now the money raised is enough to cover this secondry operation. Leo is uncomfortable now but he is settling quicker after each turn.

Wednesday, 17 November 2010

Day Two

Leo had an unsettled night but with additional valium he has managed to get some sleep. Leo is sharing his room with Finlay a little boy from Wales who also had his SDR yesterday. Both boys are doing so well they are looking to move them up to the 12th floor later today. Leo is finally able to maintain his oxygen levels so at least the alarms have stopped going off.

As you can see in the picture the room is really well equipt and the nurse Renee is lovely too. We are just waiting for the doctors to do their rounds and to make the  move up to the 12th floor.
Well we are up on 12 with an amazing view from the window over the parklands. Luckily Leo and Finlay are still sharing so at least they know each other and will be able to get up to mischief in a day or two. Although Leo cant eat we have placed a food order for him. here at Childrens the food is requested from a menu. there is no set mealtimes and the children can basically order what ever they want. On Leos behalf his first meal request is Fruit loops milk and a cheese sandwich with two cartons of apple juice. One thing for certain is with this kind of menu Leo will not go hungry.
Although Leo isnt in a lot of pain he is very uncomfortable but his oxygen is stable and he isnt being sick anymore. Fact is every hour of every day he will get stronger. Thank you for the good luck messages  and gifts theyre now starting to come through and Leo really loves getting them.

Tuesday, 16 November 2010

Todays the day !!
Well it started as every other day has since we arrived..Leo refusing to wake up which is good because we decided to let him sleep as long as possible after all not being allowed to eat or drink is no fun at all. We had to be at the hospital at 9am and all we had to bring was Leos teddy bear.
Leo was so excited at the prospect of actually sleeping at America (The hospital) the grin on his face was a mile wide! We checked in and were directed to the 6th floor. When we arrived the receptionist took us through the information we needed to know. We were shown through to the ward and Leo was weighed and measured. The nurse introduced hersef as Lori and we were then taken to a treatment room where Leos blood pressure and blood oxygen levels were taken  ( the blood pressure cuff was put on his leg and the blood oxygen peg on his toes). At this point Leo became anxious and wanted to go back to the hotel to see his friends, he decided he didnt like the nurse!  The anaesthetist nurse came to introduce himself and went through Leos history. then the Anaesthetist himself came down and let Leo choose his mask, the options were Chocolate, banana and bubble gum, Leo chose bubble gum. The nurse then came with loopy juice...the mild sedative they use for the transistion to theatre. Within minutes the anaesthetist returned to take Leo to theatre even before the loopy juice became effective. The anaesthetist took Leo into his arms and told him they were going on an adventure, Leo looked over the guys shoulder and the last thing he said was 'see you in a minute'
And the wait began.
After an hour or so the first phone call came through from Amy in the operating room letting us know Leo was fine and Dr Parks had started the procedure and that they would call again in an hour.
Even though we knew he was in theatre and we knew why it brought the images of what was actually happening behind those doors into reality, a reality we really didnt want or need to think about. As much as we were looking forward to that call we dreaded it too after no news is good news!
The second call came through Leo is doing good stats are fine and will call you back in an hour..and the wait continues..
Well that hour passed soooooo slowly
Before we knew it Dr Parks had appeared in front of us with a huge smile on his face and said it had gone as he expected it too and Leo is doing great so now we are just waiting to go through to see Leo in the recovery room......................
Leos stay in the recovery room was short and sweet and he was soon moved up to the 7th floor (room 1) Where he was introduced to Suzie his own nurse who's job is to constantly monitor Leo and make sure his pain level is kept to a minimum. Suzie was brilliant and told us all we needed to know about life on intensive care.
Suzie went off duty at 7pm. At Childrens the nurses work a 12 hour shift three times a week and Leos care was handed over to Casey. Casey again took the time to make sure that everything Jo needed to know was sorted and it is really lovely the way she seems to be able to settle Leo and answer all his questions. At Childrens they really do direct everything through the child and are happy to put their minds at ease too. Leo is having some issues with vomitting and is struggling to maintain his oxygen levels. For the vomitting Leo is being given some meds to control that. The oxygen isnt quite so easy they have tried using the tube to blow the oxygen straight into his mouth and the nasel inserts but as Leo sleeps with his mouth open this doesnt seem to be the best option, He currently has a mask that covers both his nose and mouth and so far this is doing the job. Joanne has elected to stay at his bedside overnight and the doctors are making their official rounds tomorrow morning, I say official because two doctors have already popped in just to check on him.
The care he is recieving at Childrens is beyond anything we expected even after other familys told us this would be the case. November 16th is always going to be an important date in the calender of Leos life.
Leo is expected to be able to go on the general ward tomorrow afternoon (Wednesday) providing they can settle the issues of today.
Will write more once he is settled on 12th.

Monday, 15 November 2010

Assessment Day !

Well today was day one of the days we were looking forward to, finally meeting Dr T.S Parks and his amazing team. Strange how after looking at pictures of him and reading all about him we were actually about to meet him.
We arrived at Childrens (as the hospital is affectionally known in St Louis) around 9am clutching our itinery of appointments. First one was to watch a dvd all about treatments for Cerebral Palsy. The dvd showed both advantages and disadvantages of all ending with a section on SDR. There was the option to watch a short film of the procedure but we opted out of that. Somethings are best not gone into! Leo then had an evaluation by Deanna (one of the physios) and Leo was filmed so Dr Parks could assess him against his application film in private. Leo was brilliant and happily did everything Deanna asked of him right up until he needed to have his flexibility measured, Leo was not impressed and refused to co-operate, I have no idea what he thought was going to happen but Deanna was so patient and eventually she was able to get everything she needed. We were then shown back to the waiting area to wait our turn with Dr Parks.
We didnt have to wait to long. We were shown into the room and were followed in by Dr Parks and his team. Dr Parks took a few minutes to manipulate Leos legs and to watch him walking.
He sat down and we waited to hear the prognosis.
Dr Parks suprised us when straight away he announced Leo was worse affected on his RIGHT side, ever since he was diagnosed we had been told he was weaker on the LEFT. He said Leo has amazing core and upper body strength and that we would see significant results post SDR. However he did say to achieve this Leo will need Heel Cord and Hamstring lengthening. The heel cord they are looking to do while we are here and Dr Parks is going to make Leo an appointment with Dr Dobbs (the orthopedic surgeon). Dr Parks also said Leo will need to wear a full leg brace at night on alternative legs immediately after the operation. He also mentioned that Leos feet may need to be plastered for two weeks to pull his ankles to the 90degree stretch. Dr Parks also said Leo will need to return between 6 and 12 months time. This prognosis may change after the operation because as Dr Parks said 'after the operation most if not all the spasticity will be gone and its only then we can say for sure what will be needed' However he is confident Leo WILL be walking independently at least a few steps by the time we return to the UK.

A few things have suprised us since being here, First is just how well Leo can walk with a K-walker, Those of you that know Leo will know his walker is like a mini zimmer frame which goes in front of him. Since Jack (McNaughton) let Leo have a go on his walker Leo is refusing to use his. With Jacks walker Leo can actually run, walk backwards and keep his feet flat. In fact last night in the hotel lobby Leo and Kayley were actually having races. After speaking to Dr Parks Caudwells have agreed that we can order one for Leo...delivery in two days. Jack is Leos partner in crime and l know theyre going to become very good friends during the time they will be spending here and probably for a long time afterwards. They share a lot of the same characteristics in fact they have been taken for twins ! Its really nice seeing them play together.
Leo is second on the list for the operation tomorrow so we will need to be at the hospital at 9am (1500 uk time). Dr Parks expects the operation to last between 4-6 hours and Leo will be in recovery for an hour before we are able to see him. During his time in theatre Dr Parks will make sure we receive an update every hour.
We will update again tomorrow..

Saturday, 13 November 2010

The weather is for turning !

Well after two absolutely gorgeous days looks like the temperature is about to start to drop, Today it actually feels like autumn (which is great for the sunburn of yesterday).
Leo has now caught up on his sleep and is a lot happier. He still keeps asking when we are going to America and we have finally realised why... Since we discovered SDR we have been showing Leo the website of the hospital and he thinks THATS America, We found this out when we were in the shuttle en-route to the supermarket and dropped another family at Childrens Hospital, Leo saw the sign got really excited and said..Theres America !! He then went on to tell the bus driver he was in New Zealand..Carlton (the driver) found this very amusing!
Yesterday was a day of discovery, we discovered the shuttle doesnt actually drop you off at the zoo but about a mile from it. I say a mile and it probably is if you go the right way..we didnt! and ended up getting a taxi there, I have to say the zoo is amazing and well worth the adventure of getting there, Very big, very interesting loads to see and do (there is a new elephant enclosure being built too) best of all FREE well almost free for $10 you get to ride on the train and the carousel and the Dino ride as many times as you want too. We spent four hours there (reasoning as its free we can go again).
Once we got back to the hotel we met up with Jacky (her daughter Kayley is post SDR) who suggested going to the Galleria (a shopping mall). Another new experience..using the Metro train. Loads of shops etc there and Leo got to try his first Pretzel U.S style..not sure what he was expecting but dont think it was that.
Today the Power family goes back to the UK but we got to meet the McNaughtons from Scotland and once the Taylor-Brunts get here from Wales tomorrow we will have the UK covered at least until Jacky and family leave for Ireland in a week or so.
Everyone here is so positive about the operation the hospital and everything it really does settle last minute nerves and all the post op children are so proud of their scars and show them off as much as they can. It really is quite sweet to see them all playing and laughing every evening and l know thats Leo favourite part of the day.
Today we are going to just have a lazy day and see what happens l know Leos looking forward to tonight. What is suprising here is just how quickly it gets dark it really is like someone just kills the lights.
Monday is the big day when we finally get to meet Dr Parks and his team...more then!

Thursday, 11 November 2010

England - St Louis U.S.A

Well if stress was a fruit it would be a watermelon and not just any water melon...one of those huge ones for display purposes only ! Fitting the luggage into the taxi was like a Krypton factor audition however everything slotted in eventually, and after a quick trip back to the taxi office for a booster seat the journey began !
We arrived at Jurys Inn at Heathrow and much to the amusement of the desk staff managed to get all the luggage into the hotel. What is it with hotel staff that the offer of help comes just when you dont need it anymore. The room was ok, clean and well appointed... just off a carpetted hallway (you ever tried to wheel suitcases on carpet!!!).Leo was a little disappointed that he wasnt already in America !
Well after an early start (and meeting the best possible shuttle driver) we arrived at Heathrow and went straigt to check-in...of course the one piece of information we didnt print out was required so a quick call went out to Tash..thanks Tash.. Once we had the hotel address everything was very straight forward. Security was also painless and we even got the chance to look around shops before boarding. We flew to Newark with Continental and had a really good flight (apart from no entertainment) Leo was made to feel really special with lots of presents etc including his own Continental Airlines Wing badge. The staff on the plane were lovely..every one of them. Special mention has to go to Tracy..a really nice flight attendant who not only made sure Leo was happy the whole flight she actually met us after customs in Newark and helped us make our connecting flight. Even though we managed to forget to collect the walker from the baggage area! A really nice way to be introduced to the American level of customer service. The connecting flight was on the 'barbie' plane.Must be the smallest airplane on the fleet ! But Somehow the walker appeared with the luggage anyway ! We managed to bypass customs in St Louis..no idea how maybe because its not an international airport theres no Customs !
Checked in to the hotel at 19.30 local time so far today been awake 17 hours!
Walked into the lobby and straight away met the English familys here, Within five minutes luggage was in the room and we were back downstairs! As Joanne said its really nice to meet people and actually talk face to face about the operation and living with CP. We have been given the head up about shopping and places to see etc and looking forward to explore St Louis.
Leo was straight away part of 'the crowd' and the sound of a very tired little boy laughing and getting second wind rangout ( oh to have half his energy). We managed to stay up til 2300 local time
leaving the SDR crew downstairs at 22.30.
Leo woke up this morning at 6.30 desperate to go play with his new friends but settled for breakfast and talking to his cousins on Skype!
Today l think will be spent trying to adjust to the new timezones and just finding our feet.
Thank you for all the messages of good luck for Leo xx

Wednesday, 3 November 2010

and the countdown continues.....

One week til lift off and it still isnt quite real. Right now the nerves are kicking in and Joanne is starting to realise the huge event looming in front of her. Although we know this is the best decision that could be made for Leo and his future, in the short term it does mean putting leo through a serious spinal operation with all the risks that involves and no one wants to put their child at risk. Joanne as spoken to a lot of parents who have already gone through this with their children pre op and apparently its a normal response to a stressfull event. The time at the hospital is not going to be a fun experience for anyone. I will detail that once Joanne and Leo get there. Leo is so excited about his flight and is already selecting which of his toys are going to accompany him. Obviously Buzz and Woody will be there !!
We visited his nanny and farthy(Grandad) Monday night and his Nanny made a startling point...the next time they see Leo he may be walking!! Its like this right now..could be the last firework display he sees from his wheelchair or the last time he goes trick or treating in his chair. This is huge !
Watching his cousin Jack toddle through the city centre at the weekend with all the confidence of new experiences he was enjoying bought home just how different life will be for Leo !
Words really cant express how very very grateful we all are to the hundreds of people that have helped us achieve this.
I know l have said this before but every single donation made a difference.
Next update will be from St Louis x

Monday, 25 October 2010

The countdown is on !

Its just over two weeks til Leo leaves the UK to start his incredible adventure to St Louis Childrens Hospital Missouri. The adventure wouldnt even have started without the endless help and belief shown by friends family and total strangers. Five months ago Leos mum found out about the operation and the ENORMOUS amount of money needed for it to happen. To say fundraising was slow to start with is an understatement but it started and went like a steam train slowly gathering momentum collecting more and more friends and supporters along the way. Special thanks have to go out to Joannes brothers and sisters who have all been involved in different ways. The direction changed once Ben Sutcliffe of Caudwell Children came onboard and offered the mentoring and support we really needed.
Lots of local businesses have helped us and again special thanks to Key Theatre, Ostomart and Serpentine green shopping centre for their belief in Leo.
The Evening Telegraph and Radio Cambs have followed Leos journey and offered lots of support with getting Leos story out there. The donations we have received have come in from all directions and for all amounts, from the old lady that stopped Jo and Leo in the street and gave Leo a pound to Ostomarts amazing £4000 donation. Along the way we have held lots of events ranging from public waxing to a breathtaking motown night arranged by Jo Rofail and Sarah Jones which raised £9000. There has been lots of public collections and events raised with no knowledge of ourselves until the arrangers got in touch and told us, Thank you to Peterborough Bowls and Peterborough Triumph motorcycle club for giving us those lovely cheques. There has been disappointments too mainly from events having to be cancelled or postponed but it does seem that every time that happens other things suddenly arrive to help Leo out for instance a phone call from a really nice man in Rock Road Peterborough that collected £180 from family and friends for Leo.
Well the flights are booked and SERPENTINE cars have offered to take Leo to the airport for free!
So as Jo dusts off her suitcases please accept her heartfelt thank you for your support to date and in advance for your continuing support.