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

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 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.

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.

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.

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.

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.

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

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 !

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

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....

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 !

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.

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.

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.

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..

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!

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

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