So i’m off to Birmingham Children’s hospital tomorrow, to take Alfie to one of his yearly appointments for his condition. After seeing Alfies local dermatologist, who I really like, although Alfie seems scared of him as he had a massive unreasonable meltdown down when he saw Dr Bala and had to be taken back into the play room, I was told that Alfie needs a new sun cream as he seems to blister more when hes wearing the cream rather than without it. So after 2 years of the same sun cream it turns out that that could be the reason he’s blistering *sigh* it just feels like yet another set back.
I’ve already been told that I will probably never find out what’s wrong with Alfie, they say Rothmund Thomson Syndrome but that hasn’t even been properly confirmed. He’s had x-rays, Skin samples, Ultrasounds, that many blood tests that I’ve lost count, he has to have his eyes tested for cataracts, again.. it’s all very frustrating to know after all of that, after Alfie being pinned to the bed by his arms and legs to have blood taken from the heals of his feet but there not being enough blood so they have to tightly squeeze his feet so the blood flows, all the time he’s screaming and tears are flowing from his face, me having to hold him tightly while he has a chunk of skin cut from his forearm, all of this, and over 50 dermatologists have seen him, I’ve been in touch with a hospital in America who have experience in his condition and his toes nail falling off and splitting, his skin is a constant rash, his eyes water from a little bit of light and MORE horrible experiences that I can’t even remember and still no one knows what is wrong with him.
All of this has happened in the short space of his 2 year life. It’s very upsetting and tomorrow at his appointment i’m hoping for some answers but all I ever hear is “it’s all trial and error” surely someone must know what’s wrong?
Anyway, here’s a short insight to my week.