Now we have settled back in to normal life we need to focus our attention of arranging some more fundraising events.  We did really well raising the amount we did to get us to America but unfortunately the costs do not stop there.  As much as we would like to just be able to provide everything that Dominic needs we just are unable to do so.  We are now raising funds for the following items:

• Post op aftercare – Private physio & Hydro therapy sessions and the hire of a warm swimming pool or hydro pool – anyone that knows of a clean warm pool we can use please let us know!
• Equipment – in the St Louis hospital a total gym was used to help strengthen Dom’s legs. If anyone has any contacts in the fitness world do please get in touch in case there is a gym we can use or to help raise funds for a total gym at home.  We are currently using an alternative form of leg press involving wood flooring and our legs, kindly devised by Jack & Robyn!
• Electric Swivel Car seat – Due to Gary’s bad back we are struggling to get Dom in and out of the car.  To alleviate this we need to upgrade our Motobility car and then get adaptations made to fit this amazing car seat that lowers down so Dom can step onto it and then it swivels and slots back into the back seat – All this will cost at least £8k.
• Power wheelchair – Despite Doms op he will still need a Power wheelchair to get around.  We are still hopeful that he will be able to use a walker within the home or classroom but for longer distances to have any form of independence he will need to be in a chair.  After researching all the options the most suitable one for Dom is approx £18k.  This should last him right through primary school so you do get your moneys’ worth!

So as you can see we have our work cut out for us.  Any suggestions or offers of help would be greatly appreciated.  By popular demand we will be having another quiz night if Pete agrees to doing one and we are looking for a higher and more challenging venue for another abseil, can be anywhere in London or West Sussex any ideas welcome!  We have a beer tasting event planned and a poker night and this Saturday we have a stand at the East Grinstead Me, Baby & toddler show where we will be raffling off a Plan Toy Eco dolls house with Furniture for £5 per ticket and runner up prize of £50 Clever cloggs voucher.  The dolls house and stand has been kindly donated to us by T4Toys which is a fantastci independent toyshop in East Grinstead, they have also arranged this annual popular event www.mbtshow.co.uk  So anyone that is in West Sussex do come along and see us on the stand will be lovely to see you there.

Thank you for your continued support for Dominic!

Gary & Sarah

You can contact us at dominicsfund@gmail.com or by calling 07736176535

As the old cliche goes as one chapter ends another unfolds. It has been an amazing six weeks and it seems surreal that tomorrow I have to go back to work. It has been awesome both in what we have been through and in the fact that really how often do you get to spend six un-interrupted weeks with your wife and kids. Although at times it has driven me mad it has also been truly great it has been far easier than I thought it would be. They are both good boys once you get past the tantrums and tears and for the last few days we have had such a laugh its unbelievable ( even with Joshy being a bit ill ). Sarah has been fantastic in organising everything and my role has been relatively easy.

In particular I have managed to get away with doing absolutely nothing for the past few days apart from having fun with the boys, watching football , Judge Judy and drinking beer, and the odd bit of ironing so no matter how much I complain I know that really I am quite lucky.

What I did find totally mind blowing was that Dr Park sent us a message via Facebook. I mean how many Neuro Surgeons in the UK would do that !!!!! What a man !!

Dominic had a great time at school and they seem so positive and willing to take on anything that we both feel fantastically optimistic about him there. Also met some of the other parents who seem very nice.

This weekend we had a couple of long bike rides and met loads of people around the town who had seen Dominic in the paper either before or after the Op or who had donated money. Again the goodwill and the spirit of community and helping one of their own just moves you so much we are really glad we moved here.

The flight home was largely uneventful and both boys got a bit of sleep. Never would I have ever thought I would be looking forward to seeing the dull and dreary skies of Blighty !! Actually we returned to glorious sunshine and it was quite a nice day and almost as warm as the 80 degrees when we left St Louis. Still it was good to be back in the UK even with the chaos that is Heathrow and the queues of traffic on the M25. Sue was a star and arranged for our car to be at the airport so that was great. When we actually arrived home the boys were very excited (as were we) !! Its not that the US was bad in fact all the people we met were very friendly, extremely polite, just nice people. The service everywhere we  went was fantastic (apart from the stroppy barmaid in our hotel funny enough!!). The streets were clean wherever you went, the facilities and attractions excellent and most of them free !!  The facilities in the hospital were absolutely amazing and the staff so helpful, attentive, courteous and just kind that you felt sorry for their poor NHS counterparts we have encountered in the past and will encounter again .  The hotel room was spacious and had all mod cons and the staff in the hotel in the main great. Still despite all that there is nothing which can beat being in your own home, so it was great to arrive.

Dominic seems to have got straight back onto the clock, in fact for the first few days both boys were sleeping until 930 in the morning, however now Joshua has taken to waking up at 300 in the morning and wanting to get up saying “Its not night time”. He also seems very worried each time Sarah leaves him as if he thinks we might be going away and leaving him again !! Sarah and I also cant seem to shake off the jet lag entirely and although I have been getting lots of sleep feel continually tired and drained.

Dominic has gone back to Ingfield and they appeared impressed with the changes in Dominic since the Op. He loved going back to school and seeing Roger and Ramona and all his friends at school. He has had some physio at home since we came back and we have been doing his stretching and getting him in his stander, walker and bike as much as possible. It is early days but he is getting stronger already and he managed a couple of faltering steps on the walker already which would have been unthinkable before.  He is now eating well and looking forward to going to St Mary’s tomorrow.

Although the Op is out of the way there are still loads of things to sort out such as a wheel chair, a new seat for his car (or a new car), a power wheel chair, direct payments, numerous appointments with various specialists and we are both due to return to work soon.  It has all been exhausting and there will be no let up it seems but it has all been well worth it.

We have a had a long and frustrating weekend.  It has been labor day weekend here in St Louis which meant no Physio for 3 days.  I have been really bad with the weekends here since we came out and get very frustrated because there are no physio sessions.  Yes it is nice to have down time but not after 4 weeks and to have a long 3 day weekend the week we go has been very frustrating but we have kept up with the physio at home and his stretches and the physio Dept did lend us the bike for the weekend so we have pretty much kept him in it for 3 days!  We said goodbye to Robyn and Auntie Ness Noss & Gary on Saturday which was sad but has been great to have so many visitors as it has helped break up the trip.  Dr Park and his team were so accomodating with Robyn and she had some very honest conversations with Joan and Dr Park and it was the icing on the cake for her to witness a surgery so close on Friday that she was nearer the patient than the anethestist I think!  It really helped having her here as not only did Dom get extra physio at home but we could get a clear plan of action together about what we need to achieve over the coming months and what kit we need.  It was also reassuring to have a professional confirm that you have made the right decision and for her to see that this is a superb surgery for the right child and weighed up against the benefits, having seen a surgery first hand is relatively risk free except for the obvious risks of any operation with a GA.  We miss dobbin a lot and are really grateful to Steve, Abbie & Jack for lending her to us for a week especially on first week of school. 

Anyway we took the boys swimming today again and Dom stayed on his back kicking beautifully for ages all by himself!!  He was soo pleased with himself.  He would never have been able to do this before SDR as he would have tensed and rolled over onto his front face down.  So not only was he kicking but working on that trunk control to stay balanced.  Really looking forward to getting into a warm pool though!.

It only took 5 weeks but Gary and I finally managed a night out on our own tonight thanks to Gary’s mum babysitting.  We had a lovely dinner and was great to be on our own to talk through the last few weeks and laugh about our boys and some of the wonderful changes we have seen in them both during this trip.  They are both going back with more vocabulary, confidence and addiction to cheese, apple juice and chocolate brownies.  I personally cannot wait to go home and not have cheese put on absolutely everything!  I just want some salad or veg with NO CHEESE!!!!!!!!!

We have our final physio session tomorrow with Lorie which will be sad.  It is also her last day at the hospital so a shame some of the other families wont get chance to work with her.  She has been great with Dom.  The session will be filmed for their records and all his post op measurements will be done which will be interesting to see.  I will endeavour to update the blog tomorrow with the outcome but you may not hear from us until we get home on Thursday.  We will try and keep the blog updated over the coming months but this will obvisouly become less frequent as we get back into normal life but a massive thank you to everyone who has taken the time to visit our site over the past few weeks and read how we have been doing it has been lovely to see how many people care and are interested in how Dominic got through it all.  Thanks for watching!! xxx

The last few days have been really good as Dominic responded really to Robyn being around and started eating, really working hard in physio and Robyn was doing physio with him at home whilst he played and he had a great time. Josh has also been very funny as on occasions he cannot seem to manage more than three steps without walking into something or falling over. His speech is coming on really well and he has the energy of around three kids but hey ho cant complain. Robyn, Vanessa and Gary have all been great with the boys and good fun to be around for us too. It has really helped break up the stay by having people come over to us and it has not seemed like six weeks at all. Robyn was treated very well by all at the hospital and really seemed to enjoy herself get a lot from and contribute a lot to the sessions and things like looking at equipment. She also likes to shop so Sarah obviously had to take her to some of the Malls. Dr Park also arranged for her to see a Rhizotomy surgery which she said was amazing.

We met with Dr Park this week and that was very positive about Dominic , although he was slightly cheesed that the Dr’s in the UK appear to doubt his credentials and he reeled off a long list of qualifications, boards he sits on and publications he has written in. But for a very clever and very busy man he soon came back down to earth and posed for some lovely photos with Dominic. He did state we will have to come back next year for him to review Dominic but it wont be for so long next time.

As some leave though others arrive and my mum came back from Miami on Thursday and is with us until we return home. So it is now the five of us and only four more days (two more sessions of physio) then back to the UK.

Good day today.  Dominic had a great physio session this morning with Lori and Robyn.  He worked really hard on his treadmill in his new lighting up Buzz lightyear trainers and did some good sitting and throwing balls.  Has been great having our Physio ‘Dobbin’ (josh’s version of her name) here, poor thing I am having a field day having her 24/7 to bounce ideas and questions off her rather than cramming it all into a 1 hour appt.  Dobbin got to see Joan Pugsli after therapy today to get more of an insight into the process here but I think Joan had as many if not more questions for her, so from what i gather it was a very productive chat.  We whizzed back to the hotel to pick up Josh, Gary and Ness and her Gary and we went off to go on our helicopter ride.  Ness and I went up with the boys in the copter.  Dom loved it especially the headphones and microphone.  I think he deafened the pilot with his singing.  One of the most obvious changes since the op was his fluency with his speaking.  He has figured out that it is now so much easier to speak and get his words out that he does not shut up now and is constantly singing or coming out with really complicated sentences.  The Gary’s and Dobbin then went up the arch in the tiniest of pods to get a birds eye view of St Louis.  We found a great restaurant for a late lazy lunch and then came home for a swim.  All in all a very positive good day with lots of ideas and plans whirling around our heads!  Tomorrow we see Dr Park for our follow up appt so will be interesting to see what he thinks about Dominics recovery.  Can’t believe we come home a week tomorrow.  Will be lovely to have our own home back, get our stuff out of storage from when we had the adaptations done and start living in our new home and Dominic is so excited to be starting St Mary’s, so a very exciting time ahead.  Have attached a couple of photos from the past couple of days xx

Sorry not done a blog for a couple of days had a couple of late nights.. Dom been doing OK.  Still struggling with the eating but he tried harder in Physio on Friday when he went with Gary after a disasterous session on Thursday.  The strength in his legs is slowly building but will need a lot of patience and fun exercise to get them to a point that he can weight bear.  We had an early session on Friday so Dom took Ruby on a hot date to the Magic house which was great and we all parents included had a fab time.  Paula (Ruby’s Mum) was enjoying playing cashier in the toy supermarket a bit too much!!  We then all had dinner out with Paula and her family which Dominic managed to miss the entire thing as he fell asleep on the way there! 

Saturday we had a quiet day and went to the Farmers market here which was huge and brought loads of yummy fruit I had to carry the two most enormous watermelons to the car – I felt like I was in Dirty Dancing!  We then picked up our latest visitor, the wonderful Robyn from the airport.  Within an hour of arriving she had managed to get Dom to eat a plate of spaghetti and 2 chocolate puddings.  That in itself was worth her being here in that one hour.  Gary , Ruby’s dad and Carlton the shuttle driver here escaped last night and went to a Cameo concert here in locally.  Don’t ask me I think they were way before my time  but evidently they were quite big in their day and sang ‘Word Up’ amongst others.  I finally let Robyn go to bed at 10pm and then at half past midnight all hell broke lose, and you have never heard such loud fire alarms in your life!  Got Dom into his buggy and had to wake Josh up!!! He is such a teenager how he slept through that noise I have no idea.  So we all had to evacuate the hotel in our PJs, Josh got to see a real nee naw and Robyn, Paula and I got to look at some firemen for an hour.  Gary and Andy rocked up more than worse for wear from the concert just as we were making our way back up to our rooms.  Knights in shining armour I am not so sure!  Poor Robyn didn’t know what was going on.  She was so tired bless her.  I think she spent a few minutes bashing the alarm clock next to her bed before she realised that it was not morning and time for work but the middle of the night.

Today we went to the festival of Nations in a local park which was hot busy but cool.  Food from every country to sample and then we went to cool off in the fountains on the way home.  We have just had dinner with a couple of other UK families that are also here for SDR but staying at a different hotel.  Really lovely people and interesting to hear other stories and experiences. Very enjoyable day!  Back to work tomorrow off to buy new shoes for his new splints and then Appt with a wheelchair company and then physio and of course the arrival of Auntie Ness Noss and Gary  which dom is very excited about.  He has been really good wearing his new Arm splint  and the difference to the positioning of his right wrist is great he has even been sucking that thumb and he couldn’t even get the his right fingers near his mouth before the op.  Will do some updated Physio vids this week, keep the messages coming Dom really loves us reading them out ! Cannot believe it is our last full week here xx 

PS big thank you to Grandpa John and Grandpops for spendign the day painting our cupboards at home and also Happy Birthday Daddy (my Daddy) for Tuesday will call you on the day., We all love you lots and hope you have a great day! x