George's SDR Diary

25th November 2012

Well George is doing fantastic. He has done therapy every day this week. His physio Kelly came round and had him doing half kneel to standing for the first time, bridging and he even took steps for her. He is doing really well with his walking, taking up to 40 steps at a time. We are now starting to make him walk to get to the table for meals, to the sofa and he is acepting it more and more - well done George! His private therapist Sam is starting on Saturday so hopefully between us all we really push him forward now.

14th November 2012

Well we are home!!! George has been a little superstar for the whole of this trip and has been very, very brave. Sadly within 2 hours of landing at Heathrow George had a seizure and was taken to hospital in Buckinghamshire for the night. He is fine and has recovered well. They say he was exhausted from the travelling and that is what brought it on. We were so gutted for him after such a successful trip but thankful he is fine. We were all shattered as it meant no sleep for nearly 2 days but we are now home and can look forward. Therapy starting on Monday and George's new treadmill arrives so lets see what we can get him doing :-)

2nd November 2012

George has done so well at physio today. After some protesting he did some really nice walking. If only he would believe in himself a bit more!!! Sadly I missed recording this lovely moving as I accidently hit the button twice and cancelled it.....opps. Oh well he will just have to do it all again on Monday :-) Now it is the weekend and we can chill out a little.
Last night we had a little halloween party at the hotel for all the SDR kiddies here at the hotel which was fantastic. Fun was had by all the kid's and their families. Brilliant!!

25th October 2012

George has had 2 really good, long nights sleep which has helped all of us to catch up a little. He is being a little superstar in his therapy too. We have had him standing with lovely flat feet and straight legs, he has done some high kneeling and crawling. He has been going on a trike each day and getting faster and faster all the time. Yesterday we took receipt of his first ever walker. We are going to try him on it in therapy this afternoon so watch this space!!!

23rd OCTOBER 2012

George has now had surgery on his hamstrings and heel chords and it went really, really well. He went down for surgery at 08.45 and it was complete by 10.15. Back on the ward he asked for food and within half hour had drank 2 lots of apple juice.had 2 bowls of cereal followed swiftly by a spagetti bolognaise, yoghurt and peaches. Needless to say they let us come home that afternoon which was really nice. So all the invasive operations are now complete and we are settled back in the hotel with just therapy to do each day.

18th October 2012

George has had a more settled night last night. There was no one in the room from lunchtime yesterday so he got some good rest. He will come off some of his med's today and they have just come to measure him for his splints.  Mummy slept at the hotel last night as I was soooo tired and feeling poorly. Daddy settled him well and sleeps better in hospitals so they have had an ok night together. I am off to the hospital now to see my boys :-)

17th October 2012

Today was a really tough day. George was awake on and off most of the night and with all the machines making noise constantly Gary and I were awake with him all the night. It was tough as a baby was in our room which we wasn't expecting and the poor little thing was crying so much it really disturbed George. He was also sick a couple of times and starting to have some spasms :-( As the day went on George had periods of time very settled and then was in pain. They roll him every 6 hours and between 4 to 6 hours is when he gets uncomfortable and is sick. They started him on Valium for the spasms, he is taking anti sickness drugs, pain killers, epilepsy drugs and still has the epidural......so really druged up and out of it :-(

16th October 2012

George had SDR surgery today. It was the longest most awful day of my life. He was in surgery for about 5 hours and the waiting was awful. The great thing for us is that they call you every hour from the operating room to tell you what has been done so far and how George is coping. This was a huge, huge bonus and really helped during those long hours of waiting. When we got to see George in recovery he was upset and very dopey. They moved him up to a room shortly afterwards to settle.

12th October 2012

Wow, we are now in Buckinghamshire at my parents ready for our flight to St Louis tomorrow lunch time. We are so excited about the journey ahead but also a little scared of the unknown. George has a pre op on Monday and his surgery is on Tuesday. I will update once I know the time of his surgery.

Thank you again to absolutely everyone who has made this happen, we are so, so thankful to each and everyone of you.

14th August 2012

Feeling really good today - surgery now all paid for, flights booked and the seats we requested have been confirmed by the airline, hotel booked and holiday insurance paid. So all the big things are out the way, time to relax and look forward to our trip. 9 weeks today George's life will change forever!!!

31st July 2012

Today was a very good day - we got George's surgery date.........Tuesday 16th October. So we will be in America in 10 weeks time having George's life changing surgery. This is fantastic. Now time to book hotel, flights and get everything arranged for our trip. Will keep you posted people.

12th June 2012

Today is a very special day......we hit our target of £55,000!!! This is just unbelieveable considering we have been fundraising for just 15 weeks. The support we have had from so many people and all the wonderful events people have done for us has got us to this stage. We still have some money coming in and we also still have some events planned. We are going to continue with these as any extra funds raised will be a huge bonus. George will require all his therapy - physio, Footsteps and Brainwave for many years and so all funds will be used for this continued care. To be honest if I can rest for a few years knowing Georges' needs have been taken care of I would be one VERY happy mummy. This is just fantastic and we cannot thank everyone enough. Now we just have to wait for the hospital in America to give us our dates so we can book everything......time to be patient!!!

10th May 2012

Had a meeting today with George's physiotherapist and management to discuss what after care they will give us after George has had surgery. I have to say they are going to give us more than I was expecting but it is still no where near enough for what is required. We have agreed a plan for the first year and we will be gettting a private therapist to fill in the gaps. Gary and I are prepared to try and do some therapy ourselves but to ensure that George is progressing well we think it is important to get a proffesional to do some of this care.

24th February 2012

So our journey begins. Today we have had an e-mail from Dr Park's team confirming that George has been accepted for SDR Surgery. Now we have the task of fundraising £55,000 to make this dream a reality. With all the help of our amazing friends and family we know this will be possible. So watch this space!!