Wearing green for World Cerebral Palsy Day.

I can’t believe it is the last day of physio here in Bristol tomorrow – we are officially Post SDR!!!! What a journey…not quite sure how to even start articulating that one! Feeling very grateful for the time we have had here post – op but also very, very excited about going home, sleeping and then continuing with the hard work with our own team of physiotherapists in Oxford.

We did it! ‘We’ as in Us, made this happen for him and Thomas is free, his body is free…how will we ever thank you for what you have helped us do for our son? How? I’m not sure we can but please, please know that you did this, you made this happen for him through all your love and support. Forever grateful x

Thank you Comper Foundation School (SSMSJ) for your beautiful, beautiful card. When Dylan gave it to Thomas he couldn’t believe it was for him, his reaction was something I shall always treasure, his heart was genuinely touched. Home soon.

Having the spasticity from his little body removed exposes his muscle weakness and this has been significant, particularly in his butt muscles, his glutes, so the physiotherapists have been doing everything they can these past two weeks to fire up those muscles. Today,  14 days post op we finally witnessed them kicking in and working. When you see this happening for him it is so exciting and makes EVERYTHING worthwhile. Why? Because having the SDR surgery removes the spasticity permanently and so this tightness will no longer hinder his progress.

It’s our last day tomorrow before we return to Oxford. We shall have two weeks at home before he starts a 3 week intensive session at Footsteps where 6 weeks post op the timing will hopefully be perfect for Thomas to see for himself what is now possible.

with so much love x

A lovely heart nurturing weekend with family from both sides. Lots of resting, fresh air and good food. I managed to also sneak in a swim and a pint of Guinness so all ready for the third and final week of physio here in Beautiful Brizzle.

Since being discharged on Monday and moving to a lovely apartment by the river everything has felt much lighter – a beautiful sanctuary to retreat to at the end of each long day of physio!

It was wonderful to have my eldest brother Tim with us for a few days to help navigate the streets of Bristol as we are now going in for physio twice a day as outpatients. We found a nice route through some gardens and so far the weather has been kind to make this feel very therapeutic. I can’t wait to share this space ( and journey) with PB and Michael next week- my other two bros.

Regarding progress- he is recovering and coping with everything amazingly well! Now the spasticity has gone obviously his muscles need strengthening and this will take time and a great deal of hard work. Attention at this early stage is focused on the re-education and re- learning of the normal movement patterns i.e lying to sitting, rolling, sit to stand, floor to standing etc. He can now side sit much more comfortably but walking independently with his walker is still tricky but it will come.

Daddy and Dylan will be back with us tonight and so one more day of physio before we can enjoy a weekend exploring Beautiful Brizzle.

Physio isn’t starting properly until Monday and so we have enjoyed a few visitors and little trips out. Genuinely feeling excited about next week to see how the surgery has helped Thomas. Wonderful to see Thomas back to his smiley, cheeky self and my goodness, Dylan is the best medicine for us all!

‘These boots are made for walking.
And that’s just what they’ll do.
One of these days these boots are gonna walk ALL THANKS TO YOU!’

In physio this morning Thomas not only stood up from his wheelchair he also managed to walk, oh yes, WALK along the parallel bars, TURN, and walk back again!!!!! Sadly no video evidence as it was daddy’s shift and daddy doesn’t know how to use his new phone but there will be many more opportunities to get it on camera over the next two weeks ( because it will be me with him 🙂 ). LOVIN’ Day 4!!

48hrs post op and he no longer has to lie flat on his back! He is doing sooooo well and being unbelievably brave!
And:
heart rate monitor disconnected;
cannulas out;
beginning to eat something and break a smile;
Dylan on his way to join us.

All progress!

Physio starts tomorrow…