Well, what a week it's been in my house. My Oldest son lost his first tooth. It's half term so absolute chaos with four kids. We had a few updates on the medical front. First of all We were told that we could be referred to genetics for my older son to see if we could find a cause for his unexplained hypoglycaemia which is being treated as ketotic hypoglycaemia And according to the Nhs guidelines, he should have grown out of more than a year ago. He's had a metabolic disease panel done before but I think it's possibly something hormonal or something either so rare or so simple that's been missed. I dunno that's why they're the doctors. We have got good support in place. So we shall see.
I'm also due to see a spinal surgeon in the next few weeks to see what he thinks needs done about my wonky spine and neck. I'm expecting him to say surgery due to how quickly my gp has got me into see him and the words moderate to severe spinal cord compression were used. Which usually means not good. I'm a little nervous because we don't really have an accessible home and if it all goes wrong I might have problems walking. I'm going to trust the process and see what life throws at me.
We said goodbye to our family support worker as Our case is now closed And we finally have a bit of freedom again. It did feel like we were being watched very closely without any need. Everyone was lovely and actually helped a lot To get better a better understanding of the situation. I made sure to give everyone one of the fetal valproate spectrum disorder leaflets from the infactuk website to ensure that they had access to the condition information in case they ever met another FVSD'r in the future.
speaking of FVSD TikTok finally returned my part one video about the scandal so now it's a pinned post on my profile. I'm slowly getting more followers and more and more people are watching it so it's definitely working. This was always going to be a marathon. I'm really excited about next week and meeting more families.