We picked up a hire car yesterday and I now have the freedom of the roads of St Louis. The car is great to drive automatic, very smooth and the price of petrol is $2.19 per gallon. I think in the UK we pay about £13.00 or roughly $17.00. So far not been any problems apart from the usual problems in finding a reliable navigator and having two whining children in the back. ( They were OK when we were taking the shuttle bus !!!!!????) Also took me ages to work out how to use the petrol pump but at those prices didn’t mind taking my time . It is not all bad as it gives us a lot more freedom and managed to go to a big Mall yesterday and took my mum to the airport today.

Dom had physio again today and had a pretty bad session as he did not want to work. I was not there but it must have been bad as even Mad Mike apparently got fed up with him. We both know it is a long road ahead but feel that these sessions are so important and get a bit disappointed when he doesnt work hard in physio. We also tried him swimming yesterday which would be great for him and normally he loves it but the pool is too cold and he gets freezing after a few minutes so unfortunately that is out for the rest of the holiday unless we find a heated pool. After physio we went out for the day and had a pretty OK day but it is just so HOT it is hard to find things to do. Even so Josh has been hilarious his speech is coming on. He is our IT guru and can work anything electrical and he has the energy of about 10 kids. Dom has physio in the morning followed by a hot date tomorrow with his girlfriend Ruby so should be another fun day.

Dom finally managed to get in the pool today.  The water was really cold so he didn’t last very long.  He has lost quite a bit of weight since his op so I think he felt the cold more than we expected.  This made him tense up a bit in the water.  He did well though with his eating today and managed to get some lunch in him before his Physio this afternoon.  He worked really hard for Lori today.  She got him in the harness again over the treadmill and he did some kicking the football as he was stepping on there and kept saying each kick was a goal for Omari ( his cousin!).  He then walked in the harness to the bike and had a quick bike ride to the roof garden.  We had a long swim with the boys when we got back so we are a bit whacked tonight so early to bed for us all!  Have a safe flight Ness Noss and Gary Rose see you soon! xx

Had pretty quiet day today, I had a migraine so stayed in bed all day and Gary and Mum took charge.  Dom has been doing some great sitting and is asking to sit up on the floor which is great to hear him want to do more.  We had a late physio today at 5pm with Mad Mike and Dominic worked really hard.  We got introduced to the total gym which he did reaslly well considering his first time.  His quads are practically non existent so I think this piece of kit is going to be vital for Dom to build up his muscles.  Until there is more power in his quads, his standing, walking and moving from sit to stand will be impacted.  Mr J how about your next challenge being finding us a total gym!!! Good news though he can swim from tomorrow so first thing we will get him down into the pool and see how he goes.  He has physio at 2pm so don’t want to tire him out but not sure we can keep him out of there any longer.  Again I think because he enjoys it so much swimming is going to be a key part of his post op physio programme so if anyone knows of any hydrotherapists out there that fancy some weekend private work and any ideas of some warm pools near us then please let us know!  Have posted a couple of vids of Josh playing in the fountains yesterday and also Dom on the total gym doing his leg presses with his little chicken legs as Gary has taken to calling them!

Today was a more relaxing day. We had no therapy today and as Sue was leaving we took it easy in the morning. It was sad to see her go as although she is a dedicated sun worshipper and has to have her daily quota she is excellent with the boys and not too bad company ( for a mother in law !!!). We had a walk around Union Square, then went to the fountains which are great fun even though I didn’t go in. Came home, had dinner then a few drinks with the departing family. Both the boys stayed up and had great fun as all the other kids were around. Back to work on physio tomorrow and more exercises. Even weak though Domininc’s sitting has improved amazingly and he sat for about 20 minutes unaided which would have been unthinkable before the Op. His speech has also improved although now sometimes it is hard to shut him up !!

Not done a blog for a couple of days as we have been getting accustomed to having 2 kids again!  Friday we had a quiet day in the hotel preparing for the arrival of Joshua and Rachel (mum in law also referred to as Mum going forward).  I don’t think I allowed myself to think about Josh for the past 2 weeks so when Friday came I couldn’t stop thinking about him and was so excited to have him with me again!  We made the decision that I would go to the airport and my mum would go to Physio with Dom as they clashed.  Dom did really well at Physio and was in a better mood from Thursday when he screamed through the whole session.  He did some walking on the treadmill and then again on the red bike which he loves.  It is really going to help that he has one at home and really loves going on it.  It is a going to be a key part of his rehab when he gets home.  Alot of people are talking about getting the Total gyms that they use here for leg presses etc at home so if anyone knows any contacts in the fitness industry we going to need to get one when we go back so will add that to the list of fundraising!  We have ordered a walker here and also he has been fitted for hand, arm and leg splints which should arrive in the next couple of weeks.  We have been given the details for the wheelchair people they use over here so we are going to try and set up an appointment with them as their offices are only 30 mins drive from here.  We will only get something here if it is spectacularly better than the UK due to maintenance issues. But worth talking to them to see what they have available here.  Despite the op as predicted he will always need to have a powered wheelchair as he is unlikely to be able to walk down a street independently so that is our next challenge.  But he continues to get stronger despite not having any appetite at all.  We are now trying the less fuss approach in the hope he will start eating something of substance.  Even chips are not doing the trick which is a miracle.

So I went to the airport to collect Mum and Josh and managed to get there at 4pm even though they werent due in until 5:36 pm (well thats what I thought!) for some reason I decided to completely make up the the time flight they were on so I stood there as all the passengers got off the 5:36 getting more and more stressed out that they hadnt come through.  I managed to bribe the United airlines office to look on the system and tell me what flight they were actually on, well  scare them with physco hysterical mother tears is probably more the case than bribe.  Anyway it worked and I have to say was quite hysterical at that point and they told me they were due on the plane to land at 6:15.  Any all was well with the world and finally Joshie and mum came through and we got back to the hotel.  Was so great to see him and he did so well and stayed up until nearly 10pm so about 4am UK time.  We had an SDR family BBQ planned last night so we were all out side watching the electrical storm and Josh was ensuring everyone knew he had arrived! and loving the american sirens. Dom was so excited to see them both and then promptly started pulling Joshs hair after 5 mins.  Could be a long 3 weeks!

Today, Saturday we ventured off to the Zoo which was great and saw Elephants, Lions, and great impromptu performance from 3 fighting hippos  was great to see them up close.  Can’t believe we have been such rubbish parents and never taken the boys to a Zoo!  We ended up walking miles so was lovely to come back and cool off with a swim and Dom dangled his feet as he is still not able to go swimming until next Tuesday and then it will be great therapy for him.  My mum going home tomorrow.  Has been great support having her here over that first stage and I think Dom will be shedding a few tears tomorrow.  Quiet day tomorrow planned ready to start a full week of therapy and hopefully lots of progress with his strength!

It was great to be home and slightly weird to be considering a hotel as home. The hotel is very good though a really convenient location. We have all mod cons in the room and it is great to be able to speak with other families and see other children at various stages of the SDR process. All the other famillies are really nice and as I said the hotel is great but I am sure that after another three weeks it will be great to get home to our real home. The other major problem is the heat. Today was not too bad it was around 90 degrees but last week it was 100 every day and they say it is going to go back up. This makes it impossible to do much as it is just too hot. You walk for a minute and you are pouring with sweat and Dominic becomes very lethargic in the heat. You have to go from one air conditioned place to another.  We are also spending a lot of time going to the hospital and that is where the title comes in. Although Dominic is very determined and we are 100% sure SDR was the right thing for him he is now very weak now the spasticity has gone and he cant do some of the things he used to. His sitting has improved and he is using his right hand much better and when supported he does his stepping and his legs do not cross but going forward it is going to take a lot of time and effort to build his strength up. Particularly if as today he has a screaming fit all the way through physio and then whines for most of the rest of the day.  Ah the joys of parenthood !!! Still we had some fun going around the biggest shopping mall you have ever seen in your life (apparently only the second biggest in this State and by American standards quite small) and I managed to escape with my wallet relatively intact.

Todays the day Dominic was discharged.  He had a 90 min physio session first but then we were outta there!! Cannot believe the op and hospital stay are all done and over with.  We were a little nervous about bringing him home as he is still very nervous but that is getting better and better.  I could actually have him on my lap and give him a proper cuddle for the first time in 5 days!  It was very sweet without any prompting we turned the corner in the shuttle and as the hotel driveway came into site he let out an hooray and had the biggest smile on his face.  He spent the rest of the day in the apartment with Daddy and mum and I went off to fill the place with toys to help with encouraging him to practice his kneeling and sitting.   Going to get him out and about tomorrow before his physio in the afternoon as I have a feeling if he had the opportunity he would spend the whole day in comfy hotel bed!!

Posting a few photos Mum took of the roof Garden at the hospital for all the patients to use.  It is really stunning and was a lovely place to escape and sit and read for half hour occasionally.  Also of Dom leaving the hospital with all the balloons.  Will blog again in a couple of days   Thanks everyone for following our story over here it is great to think we have all these people out there supporting us.