A year on…

So this week marks a whole year on from our Clinical Commissioning Group granting the funding for Mike, to start therapy with the Midlands Psychology Specialist Feeding Service and Consultant Clinical Psychologist in Paediatrics, Clarissa Martin. This time last year, our little boy of two was tube fed; he barely slept and he couldn’t walk or communicate and was the size of a six month old baby. As parents, we’d hit a low of sadness for our little boy who only weeks before, the paediatrician had said, “no matter what we do, we can’t fix Michael.”

It’s hard really to track back on the year as it’s been tough. The feeding intervention for Mike is probably no “easier” than tube feeding, but the results for Mike in terms of eating good food consistently and the application of behavioural techniques, have been exceptional. His communication has improved so much, that he now has lots of words and is able to play and speak to others. He began walking around five months in to the intervention and this month, we have a meeting set up with big brother’s school, as Mike will be starting there in September. This is the stuff that dreams are made of, and that this time last year had never even crossed our minds.

Mike has developed so much because of this intervention and we now understand him so much more. The heart breaking reality is that Congenital CMV has had a lasting effect on Mike and that’s mainly evident in terms of his sensory system and a speech delay. As a result he has poor balance and can really struggle to relax or concentrate. Eating continues to be a heightened sensory experience for him, so although he eats a perfectly balanced diet EVERY day, it’s far from what we’d consider conventional but my heart is still working hard towards him one day sitting down and eating what we are having, with us.

We feel very fortunate that our local NHS paid for this treatment, Mike was the first child in the city to go to the Midlands Psychology, Specialist Feeding Service and Mike’s success, is testament to their 100% success rate. I really hope other children locally can follow in Mike’s footsteps and benefit from this treatment.

In terms of Mike’s feeding, we are this week on a go slow. He has some autistic traits, so we follow a pattern whereby at times he forgets skills he’s learnt and doesn’t use them anymore. So a few weeks ago fed himself sandwiches no problem, but this week he’s avoiding even looking at them and only opening his mouth, biting, chewing and swallowing under tight application of the behavioural techniques we’ve been taught. It takes the greatest of patience but I’ve been taught ways of handling that, thanks to our wonderful psychologist, Clarissa.

Where I see the most change in Mike, is how he’s grown in to a cheeky little boy. He has a life full of laughs and these days now he eats, he has the energy to play, play and play. I’d say his special talent is certainly making people happy. His life is full of fun and exploration. We’ve seen a huge reduction in hospital appointments and the chance to finally be like any other two to three year old, lots of the time.

If it hadn’t have been for our MP, John Leech helping me with the final push in my application for funding to the Clinical Commissioning Group, Mike may have ended up being completely tube fed and have missed out on this exceptional, evidence based treatment. A year on, I understand the constraints of the CCG more and feel even more thankful that they made the decision in our favour. I made clear to our MP, John and the CCG from the outset that this treatment would not only improve Mike’s quality of life, but it would prove exceptionally cost effective for the NHS. It has achieved both aims. 

In the months before the CCG commissioned this specialist treatment, our local hospital had resorted to tube feeds, as Mike was so underweight and poorly. My focus during that time was caring for my baby and keeping home life as calm as possible, for our then four year old. I felt like there was no fight left in me, I was utterly heartbroken.

It was during this time that our MP, John and his team really stood out to me. It was obvious they cared and wanted the right outcome. They took the reins without me even having to ask; they made the phones calls and wrote the letters and emails. John even took time away from parliament work, at one point to ensure we were being listened to.

In our darkest hours I was touched by the fact John and his team had simply listened without hesitation, to everything I’d told them about Mike, and why this treatment was right for him. They weren’t going to settle until Mike got what his mummy had fought so very hard for. Without John, I don’t know what we would have done and I write this at a time that terrifies me to think he may not be re-elected again this Thursday after everything he has done.

On Friday, 1st May 2015 we were invited to the unveiling of a massive billboard with Mike, our MP John Leech, and I on; with the opportunity to meet the Deputy Prime Minister, Nick Clegg. We were really proud that we could show our support and say thanks to John, for listening to me, accepting that mum always knows best (haha!) and supporting me to get my son what he deserves. It’s a lonely place being a special needs mum and his support is something we will remain forever grateful for.

When we met Nick Clegg, I was shoved out of the way by a mass of photographers as my little Mike ran to the Deputy Prime Minister and John, shouting “mama match meeee!” (“you can’t catch me!”) and high fiving. I didn’t feel disgruntled at the photographer that trampled on me to capture the lovely moment, I stood back completely lost for words with the biggest sense of satisfaction and pride. That little man of mine will go far!