Tuesday - Daniel's 'American-Hospital-Operation bear'

Today was our last free day before the operation on Thursday. We took the hotel shuttle bus down to Union Station and then hopped on the Metro (brilliantly wheelchair accessible) to The Galleria Mall, specifically the 'Build a Bear' Workshop. We had promised Daniel that he could make a new teddy bear to take into hospital with him (and of course Lucy had to make one too). We had the shop completely to ourselves almost the whole time we were there, and had a lovely relaxed hour while the children chose their bears, recorded messages that they speak when you press their hands, stuffed them, brushed them and dressed them, as well as doing a birth certificate. Daniel was so sweet; because he is allowed to take one teddy down to theatre when he goes for his op, he deliberately chose a 'bear that sleeps', and dressed it in pyjamas, because he wants it to go to sleep when he goes to sleep for his anaesthetic!

We went to The Cheesecake Factory for some lunch, having heard so much about it from other UK families and then started our way back home again. We caught the Metro no problem, but then had to wait over an hour at Union Station for the hotel shuttle to come and collect us, with us all getting rather cold and very frustrated (and both Rich and my Dad declaring that they were going out tomorrow to hire a car!) Anyway, we got back eventually and spent some time in the apartment chilling out, before giving the children some tea, and getting them early to bed, still clutching their bears!

For the benefit of all those that contributed to the Help Daniel Find His Feet fund, I just wanted to make it clear that although the fund has paid for all the hospital costs, plus the flights and accommodation for the four of us (my Mum and Dad have paid their own), we are of course paying all our own living expenses out here. I did not want anyone to think we were spending the fund on building bears!

Tomorrow we have the main physiotherapy assessment for a couple of hours in the morning, where they will video Daniel's existing movement pre-surgery, as a baseline. We then intend to rest him in the afternoon and have another early night. He is first up for surgery on Thursday, so we have to be at the hospital by 5.45 am! He is due to go into surgery at 7.15am St Louis time (1.15pm in the UK), so we would be very grateful for anyone who can spare him a thought at that time. He should be in surgery for 3-4 hours.

Monday - our first meeting with Dr Park!

Today we made our way to The St Louis Children's Hospital for the first time. Once again, we had a slight feeling of unreality, seeing the entrance that we had seen in so many photos! We had time for a quick snap but really wanted to get inside quickly because the weather could not have been more different from over the weekend - today was barely above freezing and with quite a significant wind chill. We had been warned that St Louis can have temperature swings of up to 20 degrees in a day, and we certainly experienced that first hand!

We were quite early for our appointment (those that know us well will find that hard to believe, but it's true), and Daniel spent ages in the lobby fixated with an 'audio-kinetic sculpture', which has balls going round and round a complex structure and making sounds. He absolutely loved it, and is saying he is going to go and see it every time we go to the hospital.

We went up to the Neurosurgery department and had a string of appointments, starting with watching a rather brutal video, which outlined the surgery, including all the risks involved, plus some statistics. Once we had got past that though everyone we met was really lovely, and all talked a lot to Daniel, not simply to us. Of course the highlight was meeting Dr Park, the man himself. Daniel was keen to show him what he could do, and Dr Park was very confident in his prediction that the surgery should help Daniel significantly, completely removing the spasticity in his legs. He also reiterated his original prognosis that in a couple of years Daniel should be walking with crutches, and that he should start walking short distances with a frame within 2 weeks of surgery. We were so thrilled at this, and of course greatly reassured by the fact that he still believed this having now met Daniel in clinic (there was always a bit of worry  that since the original assessment was done by video that things would change when he actually saw Daniel in person).

The only downside of the morning was that they do believe that Daniel will need the second operation to have his hamstrings lengthened, which has been provisionally scheduled for early December. We were hoping to avoid that, but were realistic about the fact that the vast majority of children of Daniel's age would need their hamstrings and / or heelcords lengthening, due to the contractures (muscles shortening) caused by 6 years of spasticity. Children who have SDR done at a younger age, eg 2 or 3, are often able to avoid the second procedure because the damage has not yet been done, but it is usually needed for older children if they are to get the best results from the SDR op. Anyway, at the moment we can't think beyond the first (and main) operation on Thursday, so we will worry about the hamstrings later.

We finally got to the end of all our appointments after 2pm, and took Daniel to the hospital cafe for lunch (the cafe is absolutely amazing, as hospital cafes go, but I will write more about that another day). We had some quality junk food (it's amazing how much of that we have had already, and we have only been here a few days!)

After lunch we phoned for the hotel shuttle bus to come and collect us, and by the time it arrived both Sophia and family, and Susanna and family had also arrived in the hospital lobby, after their daily physio session. That meant the shuttle had to accommodate 10 people, plus 3 wheelchairs and a walker, which was a bit of a squeeze, but we managed it, and it was nice to catch up with them on the way back.

Back at the hotel we collapsed with a cuppa, and heard all about Lucy's lovely day with Grandma and Grandpa. They had done a bit of school work (in case anyone from school reads this!) and had then gone down to the famous Gateway Arch and the museum, as well as having a walk along the banks o the mighty Mississippi. Lucy was full of her exploits and saying she wants to take Daniel there really soon.

Tomorrow we have a day off (we're planning shopping!) before the main physio pre-op assessment on Wednesday.

Thank you so much for all the messages on here and the Facebook page. It means a great deal to us that people are thinking about Daniel and supporting him and us all.

Sunday at the zoo....

We've had a lovely trip to St Louis Zoo today (the second largest zoo in the USA, as Daniel keeps telling us!) It is set in the enormous Forest Park and (amazingly) is free, as are most of the attractions here. Contrary to the normal situation, Daniel seemed to be quite rested after his night's sleep and was full of beans, but Lucy is still whacked from the journey, and did a fair bit of moaning!

The zoo was great, and with the weather still being pleasantly warm, it was very comfortable to wander round. It also had an old fashioned carousel, which Lucy loved.

Meanwhile Daniel was busy with the map and desperate to see his favourite animals....

All in all, the zoo provided a very welcome distraction for a few hours! Once back at the apartment reality did bite though, as tomorrow we start our hospital appointments. We have about five appointments back to back, with the big one being our first meeting with Dr Park, the man we have come halfway across the world to see. Rich and I are both feeling very nervous about it, not helped by a rather disastrous children's bathtime. At home Daniel has a bath lift and seat, and also a shower chair. Here we have none of that and he desperately struggled to sit in the bath, not managing to relax at all, even with Rich gripping him tightly. We are not looking forward to 5 weeks of struggling with that. Mind you, I believe that after surgery they are not allowed to have a bath for 10 days, so every cloud has a silver lining........

We're in St Louis!

It feels slightly unreal to actually be here in St Louis, after all the months of intensive fundraising, list writing and general preparations. Daniel and Lucy had a lovely send off from school on Wednesday, and we were once again overwhelmed by people's kindness, good wishes and support, with many card, presents, hugs and a very special book with pictures and messages for Daniel from the rest of Year 2. After driving up to Manchester on Thursday we flew out yesterday; we knew it would be a long and tedious journey, and it did not disappoint! It started well, as both children literally squealed with excitement at take off, and Daniel shouted 'Woohoo!'

However, about 4 hours later, and with another four and a half hours to go (not to mention the second flight) his enthusiasm had waned rather. We had almost 2 hours of bad turbulance, and the poor little chap ended up making full use of the onboard sick bags! Our initial flight from Manchester to Washington left 40 minutes late, so we knew we would have a very tight turnaround in Washington, and we had to more or less run through the airport in an hour (including going through immigration, customs, security, collecting our bags, and rechecking our bags), to catch the second flight by the skin of our teeth! Daniel suddenly perked up on the second flight, and continually wanted to play the 'Let's design a racing car' game, as well as wanting long discussions on what the time would be at home now, what the time was in Washington, and what the time was in St Louis! We touched down in St Louis at around 6.15pm local time, and finally made it to the hotel at just after 8pm ( 2am UK time). At this point the children briefly had a final burst of energy and started unpacking their toys, before we finally got them into bed and they fell asleep before we had even left the room.

Unsurprisingly, we have all felt a bit worse for wear today. However, we awoke to a beautiful balmy day, with temperatures in the 70s - we are not used to T-shirt weather in November. From our room we have a view of downtown St Louis, and you can even see a little bit of the famous arch!

Downtown St Louis, from our window

At breakfast we had the pleasure of meeting Molly, George and Sophia (and their families). All three had their SDR surgery almost 4 weeks ago, and are due to fly home in the next few days. They were all so positive about their time here, and the progress their children have made. Of course we hope we will be equally positive in 4 weeks time! It was quite strange meeting them at last (particularly Molly, who does not live far from us, in Broadway), after following their blogs over the last few weeks, but it was so lovely to hear their stories. Needless to say, they were also mines of information about the good things to do here (and where is and is not wheelchair accessible).


After breakfast we took the hotel shuttle to Shnuck's, the grocery store, to do a food shop. Then after coming back for lunch we have just chilled out in the apartment, and finally got round to unpacking, while the children played. I think Lucy is missing school already, since she had all the teddies and dollies lined up on the bed, declared they were Class 1, and was teaching them sounds!

Class 1!

So, now it's coming up to 9pm here. My target is to get to 9.30 before I allow myself to collapse into bed. I am hoping that tonight I will not be wide awake at 2.30am, like last night, with my body clock telling me it's time to get up, despite being totally exhausted!

We are hoping to do a touristy attraction tomorrow, before we get down to business on Monday, and our hospital appointments start!

Cheltenham East Fire Station Open Day

We all had a great time on Saturday afternoon as Cheltenham East Fire Station held their annual open day, in aid of both Daniel's fund and The Firefighters Charity. The fire - fighters put on various demos, including a chip pan fire and how they cut the roof off a car (which Daniel thought was extremely 'cool'). Visitors could also admire the fire engines, and their equipment, enjoy a hot dog, and there was a silent auction, including some truly amazing prizes. A massive thank you to all our friends down at Cheltenham East - we will keep in touch!

Daniel's operation is now only two and a half weeks away! He seems pretty calm about it all (although he has already started bargaining with regard to how many teddies he can take with him) but the nerves are certainly kicking in for me! There is also still a rather long jobs list to get through before then........

Run Chris, Run (and run some more.........)

On Sunday Chris O'Riordan completed his challenge of running three half-marathons on consecutive Sundays. He tacked Cricklade, Oxford and Birmingham half-marathons and managed to decrease his time with each one, running Cricklade in 1 hr 49 min 31 sec, Oxford in 1hr 48 min 19 sec, and Birmingham in a triumphant 1hr 46 min 57 sec! It is a fantastic achievement, and Chris has raised a fabulous £1400 for Daniel.  Thank you to both Chris and his wife Lauren, who has been a big support to Daniel since he was at nursery, and continues to be so. Thank you also to Chris's lovely girls (featured in the middle photo below), who have tirelessly supported him!

 

 

 

 

Cricklade (7 October)

Oxford (14 October)

 

Birmingham (21 October)

Getting close now.......

It's hard to believe that Daniel's surgery is less than 4 weeks away now. We have been busy making our preparations for the trip (and still have plenty to do in that respect). Daniel himself is a little apprehensive about it all, unsurprisingly, but he is also excited. He has been getting extremely tired over the last couple of weeks, despite the best efforts of everyone who works with him to keep him rested etc. He desperately needs this week of half term to relax and recoup his energy, in readiness for the challenge ahead. We have now appointed the private physio who will be working with him a little bit before we go (and we hope a lot after we return). The NHS is only able to provide a burst of physio for a short time after we return, but most of the physio input over the next couple of years will need to be done privately, and this is why we are so thrilled that our fundraising has gone past our original target. The physio is vital to a child's making the most of the operation, so it means a lot to us to know we have the funds in place to give Daniel the physio input he needs.

Meanwhile, other people have continued to be busy fundraising on Daniel's behalf, for which we are indebted to them. The last 7 days have been a particular frenzy of fundraising activities!

Last Sunday (14 October) we had 3 events happening simultaneously....

Firstly Matt and Simon from Billy Shears Hairdressers set off from Cheltenham before dawn (and in the freezing cold) to cycle down to Bristol. It took them just under 5 hours (I believe they might have got a tiny bit lost deliberately challenged themselves by taking a diversion). Once there, Matt girded his loins and did a bungee jump, all in aid of Daniel!! Neither Simon nor Matt had ever met Daniel before we started fundraising (in fact Matt met him for the first time only a couple of weeks ago), and we have been overwhelmed by the effort they have put into extracting sponsorship from all their clients, raising over £1500! Thank you so much to you both.

I will add a photo of Matt's bungee jump when I have one, but see here for the article and photo that appeared in the Echo about their fundraising for Daniel.

As Matt was taking his life in his hands and jumping off a crane only attached by a bit of elastic, Anne and Paul were taking on the Cardiff Half Marathon, both sporting their 'Help Daniel Find His Feet' wristbands! They both completed it with fantastic times, and have raised lots for Daniel (I will add the final total once it's in). Here they are, feeling victorious....

 

And......at the very same time as Anne and Paul were doing their stuff in Cardiff, Chris O'Riordan was in Oxford tackling the second of his '3 half marathons on 3 consecutive Sundays'. Chris has so far completed Cricklade and Oxford half-marathons in the last 2 weeks, and we wish him the best of luck for Birmingham tomorrow! I will add all the photos of Chris after tomorrow, but he has already raised over £1200 for Daniel!

And finally, on Wednesday Michael Cartwright completed his cycle to work (Cheltenham to Newbury). Michael has tried many things to get out of this cycle ride over the last couple of months- a broken bike chain, a nasty knee injury, and even a new baby, but on Wednesday morning he got up, looked out of the window, decided it looked like a dry day, so set off! What Michael's quick look out of the window hadn't told him was that there were gale force winds outside! Nevertheless he battled on and arrived at work just under 4 hours after setting off - quite a commute!