It's been almost a year since our family had the pleasure of being part of children in need 2014. Macsen's story was one of the 3 minute tearjerking videos that encourages you to donate. If you haven't had a chance to see it or you need a good cry take a look :
When we were asked to take part we instantly said yes, not just because it's Children in Need, but because we wanted to represent Bobath Wales and let the world know what amazing things they do everyday!
Bobath Wales (officially Bobath Children's Therapy Centre Wales) is a charitable organisation that helps children with Cerebral Palsy. The team is a collection of consultant level Physiotherapists, Occupational Therapists and Speech and Language Therapists. Every single specialist who has worked with Macsen is exceptionally knowledgeable, passionate and generally lovely. Actually that goes for the whole team, after our first visit every singe therapist, marketing person and member of the office knew Macsen and every member of our family by name.
I would describe Bobath Wales as a problem solving service. They get to know the child and family and plan a programme and build a team around the child's needs at that time. For us this has been mainly therapy blocks of ~ 10 sessions over 4 weeks. We've had blocks focusing on feeding, breathing, body shape, hip spasms, pain and as you've seen communication and eyegaze. Here are some examples of how the team have helped us :
Breathing
This video shows how Macsen's breathing was before we visited Bobath. We had previously met many consultant doctors including an ENT surgeon who performed keyhole investigations. We were told that nothing could be done to help and we just have to wait and hope it improve improves...
During the first day of our first visit to Bobath Wales they identified that Macsen was not using his diaphragm correctly. They showed us how to support him to encourage him to engage his diaphragm. We did this for 20 minutes 3 times a day and within 3 days his breathing changed, his ribcage pulled in and his whole body shape changed!
Feeding
Also during our first block we learned how to safely feed Macsen orally. He had recently started NG feeding, but during the block we were able to prove his swallow was safe and move away from tube feeding. We were introduced to a special toothpaste that doesn't produce foam. This was revolutionary for Macsen as he struggles to cope with increased saliva and during tooth brushing he was at serious risk of lung aspiration.
Strength / tone / body shape
Physiotherapy is at the centre of everything that Bobath has done for Macsen. He is very complex due to his stiff limbs and floppy torso. Every time a Bobath therapist handles Macsen we are amazed what they can achieve. With their support he has strengthened his neck, loosened his limbs and has improved his ability and confidence in holding his head.
Throughout the last 12 months Macsen has had awful problems with pain. The pain was so bad that it was hard to straighten him and he just wanted to be rolled in a ball. This left him with a curved back, S shaped spine and shortened leg muscles (unable to straighten). The team have done an amazing job in starting to reverse this and have trained us in how to keep going. We hope this will minimise or negate the need for operations in the coming years.
Pain and Spasms
During two of Macsen's blocks we were unable to work on the developmental areas we had hoped due to his increasing pain and muscle spasms. The team identified this and worked on identifying the root cause of the pain and teaching us how to reduce the impact.
Advice / Training and contacts
The one thing that has always amazed me is the openness of the whole team to learn. Although every therapist has a specialism they have all developed the highest level of skill in each other's discipline. They also welcome specialists from other organisations and other Bobath centres; we have been part of such training sessions and every single person, no matter what rank or level of experience is open to someone else's perspective and experience.
The team also ensure they have keep contact with each child's local NHS team. They produce very detailed programmes to ensure that the child has continuity of care and that the benefit continues well beyond the block.
We also experienced the benefit of their extensive specialist network when Macsen had a very unique digestive problem. We were making slow progress, he was experiencing alot of pain and we were constantly being told there was noone who could help us privately. Within a day of asking Bobath for support they reached out to their network and a number of specialists recommended a consultant in London who was able to identify, advise and operate on the problem within weeks.
Support
We have also had lots of emotions support from Bobath's Family Support Worker who is a CP mum herself! We've also been to lots of fun and useful events including ice-skating, meeting assembly ministers and meeting Santa.
It's hard to believe that Bobath has helped our family in so many ways in Macsen's short lifetime. Every child that has cerebral palsy is so very different and Bobath Wales adapts to support their specific needs. Hopefully you can see from Macsen's story and Bobath is very much more than just eyegaze!
Please make a difference to families like ours and make a small donation to Bobath Wales :
