~XXX~ BLAKE HAS HAD SDR SURGERY ~XXX~

We are excited and thrilled to tell the world that Blake had his SDR Surgery on 20th December 2011, and returned home 17th January 2012. 

Although we were on the list for January 2012, a spur of the moment realisation that we were un-able to be away from Blake's brother and sister for a month, led us to contact St Louis Childrens Hospital to ask if they had an earlier appointment.  The answer was "yes we have the 20th December due to a cancelation!" so we accepted the date within 5 minutes of making the desicion to ask!!!

Although we desperately wanted to tell everyone that we were going, for home security reasons we thought it would be best to NOT advertise that our home would be empty for 5 weeks. We hope people can understand that we just didn't need another worry on top of what we were already going through!

We arrived at the Residence Inn St Louis on Friday 17th December. Blake had a pre-op assesment on monday 19th December where he was filmed and measured on his movements and muscle ranges (or lack there-of). Surgery was on tuesday 20th December at 7.30am, and he spent that evening in Paediatric Intensive Care. On 21st he was moved to the 12th floor on 100% bedrest with the bed elevated to a maximum 30%, and there he stayed all day, and all the following day too. 

On friday 23rd December Blake was finally allowed to sit up and was put (painfully) into a wheelchair for the 1st time; he lasted 1/2 an hour before asking to get back into bed! On xmas eve he had 2 physio sessions and Luke and I were also taught how to lift him safely.  On christmas morning he had 9am physio for 1 hr and then he was discharged back to the hotel! He, Beth and Bryce opened a few little pressies (father xmas came to our uk home to deliver their main pressies ;-) ) and we all had a frozen Birdseye pasta dinner...no roast turkey for us!!!
 

From boxing day onwards Blake had a daily 1hr physio session where he re-learnt to weightbear, to stand and to walk. It wasn't always easy, there was pain, and at times tears, but he never actually refused any pysio and he worked very hard for 3 gruelling weeks. The hospital was wonderful, and the staff amazing. His main physiotherapists were Erica and Mike who we loved to bits, and Dr Park was lovely and very dedicated to his profession and the wellbeing of cerebral Palsy sufferers. 

What can we say about Blake's progress.........

Within 3 hrs of surgery he was moving his feet MUCH better, had more range of movement and with ease! His legs are much loser and we can actually sit him on the toilet without having to prise his legs open (which left my rings indented on his inner-thighs). He has strength in his OWN muscles, and it's no longer the spacicity keeping him standing. He can stand with FLAT FEET!!! His splints have been reduced from knee-length ones with a 20 degree pitched heel (which is why he needed shoes to balance and stand) to a weeny pair which stop at his ankles, have no heel pitch and allow him for the 1st time to try and build strength in his ankles. 

He started walking with his frame again to begin with, then proceeded at exactly 2 weeks post to walk with his walking canes. He started to take some steps without them, and then on thursday 12th January our baby boy walked BAREFOOT for the first time in his life UNAIDED!!!!!! And not only that, he walked the ENTIRE length of the hotel corridoor....some 45 METRES! To say we cried is an understatement!

Whilst Blake has made immense imrovement he has been left with muscles contractures (shortenings) due to 3 1/2 years of tightness which need to be vigerously stretched morning and night to (hopefully) avoid orthopaedic intervention.  He needs daily therapy to build muscles he has not previously been able to work, and time to master walking outside the home.  Blake needs to gain the balance, strength and endurance necessary for everyday ambulation.  Whilst this will take a great deal of time and effort, we are certain that on the foundation he has now been given Blake's long-term mobility prognosis is bright.

We will continue the hard work needed to make Blake as strong as possible, to encourage him when he faulters, and celebrate his successes. There is still a long road ahead for our little man, and our family, but we now have the foundations to make a real difference to his future.
 

So we would like to say thank you to every single person that has helped us, and supported us on this special journey, for without every one of you this would never have been possible :-D 

Dr Park believes Blake will walk indpendently in all environments, and we believe this will be sooner than we ever dreamed possible.

Thank you is not nearly enough to cover the grattitude we feel to everyone here in the uk for your unrelenting support, and to our new friends in America who have been instrumental in bringing out the best in our little boy, and giving him the best chance possible of an active and mobile future.

THANK YOU, WITH LOVE
Luke, Debbie, Beth, Bryce & Blake
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                 TO SEE BLAKES AMAZING SDR JOURNEY AND FOOTAGE OF HIS FIRST EVER UNAIDED STEPS PLEASE VISIT

                                                                http://www.youtube.com/watch?v=4ZATAeoVoFM 

 

 

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