Final week of physio, final week in the states! Scary time, we're about to step out of the bubble that we've lived in for the last three weeks, about to leave the safety of the support network we have around us.

Because this was the last week of physio we really wanted to get the most out of it and to address everything that was still outstanding to make sure we had no unanswered questions before we left. Started the week with Michael, as usual a force of nature, just swept us away. we discussed with him what we'd do this week and between us we set some goals for the end of the week.

We had two goals that we were aiming for.

1, to be able to walk 50 feet while holding one hand for support rather than using any walking aids and

2, to be able to stand unaided for three minutes!!

1 we felt was achieveable but 2 we thought was unbelievable!!

So throughout the week we worked on these goals. Because she was walking with her sticks more and more the first goal came quite quickly. The second goal was tougher. Pre op Keira was unable to maintain her balance at all and could stand for about 5 seconds unaided at best. So this really was a challenge and would be a real achievement.

In physio we did more and more different activities working on different muscle groups, my favourite purely because the whole idea seemed totally ridiculous was, rock climbing. Three weeks after spinal surgery and my daughter is rock climbing, what does that say about her determination!!! The whole way through this month I have been in awe of my little girl, she has taken everything that's been thrown at her and not missed a beat. I am so so proud of her words cannot express it. She is an example to us all.

The first time she climbed the wall there are some bolt covers at the top which Michael told told her to press, at the exact moment she did that a fire alarm went off and now she thinks that she caused that!

On the Thursday we had physio at 11:00am so after that we went with the Smiths back to the riverboat to take a trip up the Mississippi on a paddle steamer! That was disappointing! Forget Tom Saywer and Huckleberry Finn, they had definately left this part of the river. There were two boats, the Tom Sawyer and the Becky Thatcher. We went on the Tom Sawyer which although was decked out to look like an old time paddle steamer didn't quite fit the bill.

"On your left you can see an oil refinery, on your right you can see a power station, a little further down you can see a barge that sunk last year and is being cut up to be removed from the water"

I am glad we went but I really don't think it's an integral part of the whole St Louis thing, and there are worse ways to spend an afternoon than steaming up and down a river on a sunny afternoon.... I don't think Tom agreed though.

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Evin on the other hand had learned from his previous mistake by just handing over the crayons so was playing hard to get this time.

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Friday, last day and back to the physio! This was our last ever physio session in ST Louis and we really wanted Keira to do well. We had Michael for this session but Erica was in the area with another patient too keeping a watchful eye on us. Because Sally and I both wanted to be there and because Evin had a runny nose we couldn't leave him in child prison (the sibling playroom) so we brought him along.

We started off with some filming so that the hospital could determine improvements from before the Op to now and then moved on to measuring Keira's range of movement, Michael very excitedly told us that it was minus 35, so we asked if that was good and apparently yes it was, he then went on to tell us that all spasticity had gone!! Which was what we'd been hoping to hear but been too frightened to ask, so we were really delighted with this.

Then Keira got on the treadmill and started dancing!! she was excited to be there and of course was showing off to her brother, we did a bit more standing and Keira set a personal best of 66 seconds standing unaided not as good as Michael had hoped with his target of 3 minutes but a real achievement nonetheless. As this was the last session the emphasis is on play rather than work so we did a bit more rock climbing as this was Keiras choice. At the end of the session it was very emotional saying goodbye to Michael and Erica but we exchanged email addresses and promised to keep in touch.

Next step get back to the hotel and get packed......

After the Arch we tried to go up the Mississippi on a riverboat but it had already made its last trip of the day so we all walked to the city gardens. The kids were quite excited about getting back to the fountains and getting soaked again! It was about a 20 minute walk to city gardens and by the time we got there the kids were ready to burst with excitement.

Then we found out that the fountains are turned off from the 1st November. The children were not happy! So after some frowning, sulking and whining later we convinced them to make the best of it.

With no water fountains the fun ended pretty quickly and we headed off for something to eat. Evin worked his Magic with Amelie and before we knew it they were sharing a crayon!!

What a week!!

Been a great week with physio, started on Monday with Michael who's as enthusiastic at 9:00am on a Monday morning as he is at 5:00pm on a Friday afternoon, I have to say his enthusiasm really is infectious. He's trying to explain something to you and it's like he's selling you something and I don't know what it is but by the end of it whatever it is you want to buy it. This is fantastic for Keira as she really responds well to this approach. She's happy to give as much as she receives in return. First we started off on the treadmill to get her good and loosened up then we went on to playing a game on a "Biodex" machine where she makes a line move on a computer screen, the harder she kicks the higher the line moves. She loved it and loved the idea of pushing herself to beat her last attempt.

Monday was a really good day for her. After physio we went out on the Metro to a Walmart that was a few miles away. The trains are all really clean and all seem to run on time which has thrown us completely, how are you meant to plan for that sort of thing?? Been really surprised too that when we get on the train the driver gets out of his cab and makes sure that we have a seat (due to Keira being in a wheelchair) I have to say though that this hasn't been an issue so far as people always seem to immeadiately vacate chairs as soon as we board. The Walmart was about half a mile walk from the Metro station. It was big and pretty much like a large ASDA over here apart from the addition of a range of firearms and car parts. Both of which I passed on.

Tuesday and Wednesday's Physio sessions were both with Erica and they went well too. We did a whole range of exercises to develop different ranges and some stretching exercises too. We also did a bit of writing on the mirror in foam, Sally may have gotten a bit too close for comfort during this exercise!!

After the mirror work Keira and Erica did some work on the scooter boards to build leg muscles. This was one of those exercises that Keira struggled with, this is partly why she's doing these exercises, because she's weak in these areas.

After therapy Sally and I walked back to the hotel via the university site. The university's mascot is called a Billiken and they have a statue in the grounds. it says if you rub the Billikens Belly you will have Good Luck. Well we would like all the luck we can get so we all did. Evin took the whole thing a bit further and really wanted good Luck!!

After physio on Thursday we went to the Zoo again with some of the other familys. The Zoo here is fantastic and best of all it's free so you can come and go as you please without feeling guilty. You are really encouraged to get close to the animals at the zoo. The kids love it because they can get close enough to the animals to identify them and ask questions.

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Physio is becoming very "samey" now and I was thinking that this reporting would start to tail off as we're talking about doing much the same thing every day. I'm not really interested in reading the same sort of report day in day out so I don't expect other people would either.....

.....Until!!!!! On Friday Michael had a surprise for us. Sticks and splints!!! We had hoped that we would get sticks before we left but at the same time we were worried that Keira wouldn't get much time to practice on them and we'd leave here in a sort of no mans land, too competent on her frame but not competent on her sticks. Because we have to take care of Evin too now that Sally's mum has retuned home Sally did physio with Keira and I arrived to meet them at the end which was the first time I saw her use her sticks.

I understand that it's probably quite difficult for others to get excited about how she's using her sticks but you have to believe that this is fantastic for us. Her confidence in using these is amazing bearing in mind this video is one hour after the start of her session so she'd been using stick for less than an hour. Now there's no getting her off them her eagerness is ridiculous and she's constantly beaming with pride in her new sticks.

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After we got her new sticks we went to get her new splints/AFO's these are fantastic they are just so well built it's amazing. We went across to the orthotics building and they were fitted within the hour. I asked the technician who fitted them where I could buy a follow on set in the UK and he gave me the details of the company and their UK distributor so that was really helpful.

Once we'd finished at the hospital we decided to go to the science centre as it's within walking distance and it was on our list oof places to visit. the Science centre is great but it's probably tailored to children about 10 and under. On a personal note I do not recommend the hot dogs!!

It has been a pretty good week all in all and we're hoping for an even better one next week.

Thanks so much to everyone who's keeping up with what we're doing and how we're getting on and of course to everyone who's helped us get this far we owe you all so much. Thank you all.

30th October, officially the day before Halloween but the day that it appears to be celebrated. Well, when in Rome! The Zoo in St Louis is recognised as one of the best in the world and they'd laid on some stuff for halloween, BOO in the Zoo. What's especially nice is that it's free too so it really encourages you in. We went there with some other familes, six adults six children three wheelchairs three buggies one pair of tripod sticks and a walking frame. We made good use of the 15 seater minibus!!

We got to the Zoo and it was a glorious day, so hot in fact I got sunburnt. Anyone who knows me however knows that all that proves is that it wasn't snowing! But Sally also got a bit of sun too so that hopefully will back up my claim of warm weather. We got there and there were huge queues for anything Halloween related with six small children and a warm day we made a group decision that standing around in a queue all day was not in anyone's best interests so we went into the insect house which was a surprise hit with Keira. I really thought she'd shy away after the first one as she's a bit shy when it comes to flys and spiders but she tolerated them all well.

Next was the butterfly house which was amazing. you literally walk into a huge green house which homes over a dozen different types of butterflys and not the red admiral that we all grew up with these things were about the size of your hand they were fantastic just flying about freely. Keira asked if we could touch them and of course being the responsible father I am I said no it wasn't safe for them. With that a zookeeper appeared out of nowhere with a butterfly for her to hold!!! I'm not entirely convinced it wasn't a stunt butterfly. It really was a different experience, I know it was only a butterfly and not the same as walking into the lions den but it was great to see how these people wanted to let the children engage with the animals.

After the butterfly house we stopped for lunch which was a nice break and gave us time to plan our next move.

The next move turned oit to be taking the rivers edge walk which housed the big guns in any zoo's arsenal The Cheetah's the Hyena, the Elephants The Hippo's the Rhino's etc. I can't do justice to the exhibits so you'll just need to look at the photos and video below to take it all in.

Thursday, Sally's Mum Sue returned home this morning. We didn't have physio til 2:00pm so me and the kids had a lazy morning til Sally got back from the airport. Then we went to the hospital and had lunch before Sally and Keira went to physio and I took Evin to the park. Keira did really well today and we were pleased as we were expecting her to be out of sorts as she's very attached to her Nanny but was very philosophical about the fact that she'd see her again in a couple of weeks so that was good?!? Why can't adults be as grown up about these things?

Physio was great with Keira walking on the treadmill forwards and sideways and for the first time in my knowledge, walking backwards!!

Friday we had another session with the famous Michael. Halloween is quite a big thing out here and so many people had made the effort to dress up and were handing out sweets it was really nice, almost like the Christmas spirit in October. Michael as I'm sure you can imagine from someone who's chosen a profession working with children was no exception. This was an excellent session, Keira really worked hard. We also had two people attending from the NHS to observe the processes and procedures that they use out here with the intention of implementing them back home. They were amazed with Keira's progress. They made me very proud when they said that one of the things that seemed to have gotten her so far so fast was her attitude and her general sunny disposition.

Keira did lots of of different exercises today and really surpassed our expectations. She really reacts well to Michael's coaching mainly I think because he has a real mischevious spirit like she does and they really do feed off of each other.

Keira started off with the treadmill then moved on to walking a straight line then back to the total gym where she challenged our visiting doctor to a competition. Keira managed 50 squats!! This was fantastic bearing in mind that on Tuesday she couldn't even tolerate lying on the equipment! After all this work we resorted to a little play.

Keira cycled the bike all around the 4th floor of the hospital into the lifts down to the 2nd floor and then did a circuit of the two hospitals across the walkways and back again, beaming the whole way.

Keira had a bad night, we had what the weather man on his "futurecast" described as a "potentially historic storm" she woke about 2:00am complaining of back pain. I'm hoping she was just frightened of the storm and needed an excuse to call us. Either way she didn't get a great nights sleep and when we went to physio today with Erica, she was out of sorts and really not playing ball.

Today was definately a step backwards from yesterday but yesterday was a definate high so I'm hanging on to that.

After physio we went to the Galleria Shopping mall which is pretty huge but we were quite unsuccessful. not a lot to buy :( however we did manage to add teryaki chicken to Keira's will eat list so not a total waste today.

Physio was at 15:00 on Monday with Michael. I'm pleased it was so late because Michael has way too much energy and enthusiasm to deal with while nursing a hangover. The Smiths weren't so lucky their session was at 08:00am.

We started the day by going to the Arch. The Arch is the tallest US monument and so we felt it was worth a visit. it's right on the Missisippi and was a nice morning so after a week of being indoors we really appreciated a morning of being out in the fresh air.

The Arch is a pretty impressive bit of construction and especially good when you consider it took just over two years to build. it is a pretty Iconic image and to be honest it's difficult to take a bad picture of, well that's what i thought until Sally took a picture of me in front of it. Hmmm I may be a medium in the US but I'm still XL in the UK :(

Next we moved on to stretches that we need to perform on Keira to improve her mobility. Next her got her working on a treadmill. This is 6 days after spinal surgery and she's walking on a treadmill!! I'm absolutely stunned by the team here they're so lucky to have the environment that they have that allows them to do the job they love and gives them the support they need.

Keira managed three minutes on the treadmill before having a break then another three minutes, then two minutes walking sideways then another two minutes walking on the other side.

As I said earlier Michaels enthusiasm is infectious and we were all getting very excited, in a moment of weakness I high fived him :(

The session was really good and it seemed to be miles ahead of where we were on Saturday, Sally and I left that session feeling really bouyant.

Discharge Day !!!

This was our last day as an inpatient! We were due to have a physio session before we left and get our physio schedule for the following three weeks. Physio was scheduled for 08:30 am and we wanted Keira to have eaten first so we planned for a 7:00 am wake up. Keira had other ideas and had us up through the night for a variety of different minor emergencies. So when 7:00am arrived the last thing Sally and I wanted to do was spring out of bed/sofa!! But up we got and started to get ourselves ready. It's amazing how much stuff you accumulate after a week in hospital. Apart from the usual stuff we were carrying home different types of medicines and a nebuliser for her albuterol. all was going OK until we were about to go to the restaurant and a nurse grabbed us to do our discharge paperwork. Curse her efficiency!! This was eating into my breakfast time.

it didn't take very long in the end and we were on our way down to breakfast.despite being 5 days post op fromspinal surgery Keira had the full english. bacon sausage, egg, toast the only thing that was missing was a mug of strong sweet tea, she makes me so proud sometimes.

08:30 am and we met Deanna at the therapy gym, Deanna first examined us on the Monday of our assesment and was really pleased that they did the op despite Keiras cough. She told us that children from the US who she'd have said were in better physical health had been turned down in the past. The reasons for not turning us down were partly due to how we were funding it. The american families were in the main being bankrolled by the insurance companies and obviously any delay in our schedule was a direct cost to us. but at the same time they always put the childs wellbeing to the fore.

Deanna was really pleased with how Keira was now which made us really happy. Obviously we were happy before, but to hear a professional confirm what we were thinking especially as she'd examined her pre op less than a week earlier really does take doubt away. We did a little paperwork and then got our schedules for the next three weeks. Our physio was to be managed by Michael and supported by Erica. We were pleased with this because we'd met Michael and had a lot of confidence in him. One thing that has become clear in this past week is that the operation itself is obviously extremely important but without the proper physio to support it, its not enough.

After the therapy we were free!!!

We caught the shuttle back to the hotel and crashed out. We were discharged the same day as another family, The Smiths, Matt Tracy and their son Oliver, who did the same. Sally's mum, Sue, who'd been taking care of Evin for us while we were in the hospital spent a little time with us when we got back then took him out for a walk so that we could try and get some degree of normality back. Sally went and crashed out in the bedroom for a bit while I tried to get up to date with everything else.

A family from Ireland who the Smiths and us had been corresponding with and are having the op this week had arrived at the Hotel on the Saturday night. On Sunday afternoon we took them into the town so that we could stock up on supplies now that we were back at the hotel full time. In the evening when we got Back it was my turn to pass out for an hour or so.

Some of us agreed to meet in the bar for a drink that evening just to let our hair down and relax. We probably had one or two too many and it was a slightly later night than we'd have liked to have had in retrospect but it was good to be able to signal that we'd come through this part unscathed and raise a glass to the next stage.

Big day!

Today is the day that Keira is able to get out of bed! The physio was scheduled to arrive at 09:30 am to help her up and show Sally and I how we could lift her and manipulate her. We knew that Oliver Smith had the physio coming to him at 09:00 am so expected her to be pretty prompt. Keira was excited at the prospect of getting up out of bed but also very scared that any movement would be painful. So we were counting down the minutes to 09:30 but when Beth did arrive Keira was too scared to let her touch her. Luckily Oliver and his family came along too to see Keira and that bit of peer pressure worked in our favour.

Keira was pretty scared of how much I think she thought it would hurt so really resisted every time Beth tried to move her. She wailed when Beth tried to turn her despite the fact that we were all 100% certain Beth did not hurt her. Eventually Beth's persistence, Oliver's goading and our reasoning finally won her over, well that and the fact that we weren't taking no for an answer.

when we finally got her out of bed she was an interesting sight.

Once she was out of bed we decided to take her to the rooftop garden because it was a nice day and it was good to get some fresh air

She was still a bit out of sorts and so we didn't push it too far, Beth recommended that we should have her out of bed for at least 30 mins but less than an hour so we stopped by the Library and went back to our room after about 30 mins.

This is the roof garden even though it's October the temperature was still in the 70's

Maria finished at 7:30 pm on Tuesday night and was replaced by Jessica who saw us through to 7:30 am on Wednesday morning, she was then replaced by Abbie. Everytime one of the nurses checked in on us they asked if we needed anything, we can't fault the level of care we've received here, everyone has been fantastic and if they can't help you they'll find someone who can.

At about 10:40 am Dr Park and his team came by to say hello and see how Keira was doing, he was pleased how she'd done with her BP stabilising and her general level of comfort so was happy to discharge her from PICU.

At about 11:15 am Abbie informed us that there was a room available on the 12th floor ( the Inpatient Unit) and we would be moved up imminently. by noon we were on the 12th floor and in our room.

The room itself was quite nice, it was set up for one person with its own toilet and shower. There was a large sofa area built into the window wall which transformed into a bed area that Sally and I could sleep on, it would have been ok for one person but two has been a bit of a squeeze, even with my racing snake physique!

Keira was taken into surgery at 08:12am. Sally and I were then shown to a private waiting room. The room was 10' by 12' with a sofa a tv and a phone.

09:00 am Ann phoned from the operating theatre to say that Dr Park had just begun the surgery and she would call back in an hour to give us an update.

10:00 am Ann called again to say Dr Park was about to begin severing the nerves. This was the point of no return, dry mouth, sweaty palms again! Ann promised to call back in the next 60 to 90 minutes.

11:00 am Ann called once more to say Dr Park had finished and was closing up and would come to see us in the next 30 to 45 minutes. We would be taken to see Keira then in the next 30 to 45 mins after that in the recovery room.

11:35 am Dr Park glides into the waiting room, shook our hands and says, "The surgery went very well, I'm pleased with her" (these should always be the first words out of any surgeons mouth, don't start explaining the highs and lows of the procedure, don't ask how we are, The surgery went very well!! that's what we want to hear first and foremost) he told us that he was pleased that he was able to carry out the surgery despite his concerns over her congestion the previous day.

Dr Park then explained that there were three other surgeons in the room observing. One from the UK, one from Spain and one from Brazil. He's been carrying out this surgery for over two decades and only now are people starting to take notice. We feel very lucky that we have been able to help our little girl have a chance of a normal life and we want others to have that too. Hopefully more surgeons and health authorities will take notice and investigate this treatment. Once he'd answered some questions he tells us that he will see lots of us in the next couple of days, wishes us well and leaves.

12:10 pm phone rings again and we're told that Keira is in the recovery room and we can go see her, almost 4 hours to the minute. 4 hours that will change her life forever.

If you're feeling drained by all this, imagine where we are, and it's only just gone noon.

We go straight into the recovery room where we're met by Dr Rushing and Ann, the nurse who's been keeping us informed of her progress. Keira has been brought round to make sure she's ok then been allowed to drift back to sleep. Together we all go to the lifts to take her to the 7th floor which houses the PICU (Paediatric Intensive Care Unit). We go up and in. Sally and I are feeling a bit numb but very positive. This is the culmination of over a years effort to get to here. The plan is to keep her under observation here for 24 hours before releasing her to the ward.

The whole time Keiras' cough kept being brought up as an issue Sally and I knew it wasn't as bad as everyone else thought and we just wanted to move away from it. We were about to find out what the real issue was.

When we went to the PICU Keira was unconscious and she was expected to sleep for a lot of the next 24 hours. In the PICU there's one nurse for every two patients. Our first nurse was Maria who explained the rules of the unit and how they were monitoring Keira. Keira was attached to a machine that measured Heart rate, breaths per minute (resps), Blood pressure and her O2 saturation. These were OK except for the O2 saturation which was at high 80%'s when it should have been high 90% and her BP which was quite volatile, this seems to be a genetic thing as when Keira was born Sally's blood pressure was like the lottery, you never knew what number was coming next!!

To try and stabilise her BP they infused her with almost a litre of saline in 24 hours. In 1 hour her BP was taken 4 times and gave the following readings!

82/49

79/52

104/64

86/43

eventually after about 20 hours it stabilised and we all calmed down.

The bigger issue was the O2 sats which were directly related to her congestion, to try and clear this congestion the respiratory specialist tried an albuterol treatment, this didn't sort out the problem so after a couple of hours they tried an epinephrine treatment again no success so albuterol was tried two more times. before finally accepting that this was something we would have to tolerate and control with a steroid delivered through a nebuliser every 6 hours.

Keiras slight cough remained as a slight cough, however when you're horizontal the whole time it's near impossible to clear it and of course the convulsions on a fresh surgical incision are quite painful. The pain of course has been making Keira cry uncontrolably which has been reducing her air flow and making her cough! Catch 22!!

So all of a sudden we realised why everyone was so bothered by the cough !

The PICU isn't exactly designed as a place for overnight visitors and in fact the rules state that visitors cannot sleep in the rooms. Through a combinnation of Keiras' age and the fact that we were almost 5000 miles from home earned us a blind eye from the staff. Which we were grateful for but it was possibly the most uncomfortable nights sleep either Sally or I have ever had.