So who is Wilson!?
Many of you will have come to this website as you may have heard we are fund-raising for Wilson to have SDR surgery, this is not available on the NHS and we have a massive target to achieve for Wilson to be able to get this life changing surgery along with the physio and equipment etc. that is essential for at least 3 years post surgery. We are raising money through the amazing charity Just4Children and if you would like to donate or fundraise for Wilson please click here
Wilson was born on the 28th January 2016 when I (mummy!) was just 30 weeks and 6 days pregnant. No one expected him to come this early at all so I never got any steroid injections or anything to help his early arrival (in fact when I was in the ambulance on the way to the hospital I was more concerned that there was a washing still in the machine that needed to be put on to dry – I think I was in denial that I was even in labour!!) I was rushed to hospital in an ambulance and things got a bit scary when they couldn’t find his heartbeat when they got there, it turned out he was just hiding in a funny position and needed to come out by emergency c section straight away!
Wilson had a bit of a hard time when he was born and had MANY difficulties to face, he came out extremely bruised and needed a lot of help with his breathing. He was also on antibiotics for suspected sepsis. You can read a bit more about Wilsons NICU stay on our blog post about World Prematurity Day
They done a few scans on Wilsons brain when he was in special care which did show some shadows but no one seemed too concerned and believed these were just from his bruising and we were told not to worry – so we didn’t!
When Wilson came home after 5 and a half weeks in NICU all seemed fine, we were just happy to have our little boy home with me, his daddy and his big sister Ava who is just less than a year older than him, so we could finally enjoy life as a family of 4.
He suffered from what we believed to be an extreme case of silent reflux, this can be fairly common with premature babies and we tried various different thickeners and medication and even different formula in case it was a cows milk intolerance he had. We had countless sleepless nights but it wasn’t until Wilson was around 9 months old that we thought there could be something else that wasn’t quite right.. Although he had the best laugh and the most infectious smile, he still wasn’t sitting up on his own or even rolling over. He couldn’t play with his toys and his hands were just constantly clenched, he also had strange spasm like movements that we knew weren’t normal baby movements so at a routine paediatrician appointment we expressed all our concerns. We were told to wait until he was 9 months corrected age (so 9 months from his due date, the 1st April 2016) and then to call back if he still wasn’t sitting up etc. Nothing had changed so we made that call and we were referred to a physiotherapist, an occupational therapist and a speech and language therapist. We were also referred to a neurologist for these funny movements he was doing.
It took a while for appointments to come through but on the 25th January 2017 just a few days before his 1st birthday Wilson got his first specialist seating from his occupational therapist – the jenx corner chair. This was such a happy day for the whole family because it was the first time Wilson was actually able to sit up on his own fully supported! It came with a huge table and the more time Wilson spent in this chair, the more his hands started to unclench and he discovered playing with toys!
We also started having appointments with his physiotherapist and she told us that Wilson had low tone in his trunk (which would be a reason for his reflux!) and high tone in his arms and legs. High tone means really stiff and low tone means the opposite.
On the 14th February 2017 Wilson had his first EEG to check if these spasm like movements were a type of epilepsy called infantile spasms. Luckily it came back clear and we could rule out that but we still weren’t sure what these movements were!
At the end of February something really strange happened, Wilson changed, he regressed and no one knew why, he wouldn’t focus, play or smile and we were in hospital and had many tests but everything came back clear.
When any child regresses it causes for serious concern so we had another EEG which also came back clear so they decided to rush through an MRI scan. Luckily after a couple of weeks he was back to his normal self and we still don’t know what happened over those couple of weeks but his MRI scan did show up why Wilson had many problems regarding his development. He had something called PVL, I wont go in to to much detail about what that is exactly but you can read more about this here, they decided from the findings on his MRI scan that these movements were something called “dystonic movements”
The damage to Wilsons brain was caused by him being premature, coming out so bruised and needing oxygen. We have been told that for the amount of damage he has, he is actually doing incredibly well and all the professionals involved in Wilsons care are all so amazed and proud of his achievements!
His diagnosis of PVL has lead to a diagnosis of cerebral palsy effecting all 4 limbs with spasticity and dystonia.
Since all this has happened Wilson has surprised everyone with all his achievements, you will be able to see from his instagram page and blog posts exactly how much he has done!
He can now have a conversation, eat and drink well, play with his toys and flick through books himself, he can balance better than he used to in a sitting position, he can push himself back on the floor… the list seems to go on! For someone who has cerebral palsy effecting all 4 limbs its incredible really. Keep following us and you will be able to see for yourself!
Wilson has faced many challenges in his life so far and will no doubt face many more, we are all so proud of all his achievements and how far he has come. We look forward to sharing his journey with you all.