I had planned to write in the blog either weekly or fortnightly but I just wasn't feeling well enough to multitask and I was trying to concentrate on my TikTok videos but I just dont know if it's going anywhere. I'm planning on doing a bit more updates on here over the next few weeks anyway. This blog will hopefully become a resource for families affected with FVSD and go on as an account of what happened.
so good news first BOTH my sons have been accepted to be seen by the genomics team at Sheffield and I'm not leaving that appointment without an agreement that I'm happy with.
I have had a few tests done and my spinal problems have gotten worse and more painful over the last few months. It's a pain that's been there my whole life but I just ignored it and now I'm aware of it it's not pleasant. I'm getting closer to my diagnosis of FVSD but I'm definitely having some kind of identity crisis so I'm trying to get my head on properly before I see any kind of dr and they say all sort of tosh. It's hard because I'm definitely not the same as everyone else but I'm really different too. I guess I'm a wonky potato like my kids.
I'm heavily exploring the hormones at the moment and seeing if there's anything that can be found but I'm having to pay for it privately and it's difficult.
I'm a bit concerned about my oldest daughter atm as she hasn't been herself lately. She's 11, very low ferratin levels and now 2 bony lumps have appeared on her ankles which are growing and we don't know what they are. She's been found to have excessively tight tendons before. Trying to explain to drs that my dna is effectively like that 90s game lights out is exhausting.