It’s been confirmed that we will be attending Great Ormond Street Hospital in the New Year for our initial consultation. YES!!!!!
Initially it’s a one day visit to meet his consultant to discuss plans for investigation etc, then we will go back for between 2-4 weeks for gastro and Neuro investigations before returning here until we get the results.
So what does this mean for Jax ?
We (His parents & Neuro & his gastro) believe that everything is down to his undiagnosed rare Neuro condition. This test will confirm or deny that. If it’s not and it can be fixed brilliant. If it is…. Then we all agree that you can’t fix what you don’t know. So the plan would be train us up on his PN. And get us home where we can try and live a normal life hoping that one day we will get a diagnosis.
What does it mean to you…. I STRONGLY believe that Jax isn’t the only one in the world that has his condition. So share share share raise awareness. So someone somewhere can help!!!!!
And in other Little Wee Man new – Jackson’s jej track is prolapsing. Today I’ve been trained by Dr A to cauterise it to try and keep it under control.