Mummy and Daddy have treated me to a very special few days this weekend, as a treat, because they said I was such a good boy at my second XP clinic at St Thomas`s Hospital on Friday. It was such a long day; Daddy woke me at 5.30am (Daddy said it was quite a change for him to be waking me) and I never got to bed until after 8.00pm. I had a busy day of appointments with lots of wonderful special doctors and nurses who all know lots about XP. I saw a Geneticist, Dermatologist, Neurologist, Opthamaligist, had my body photographed, had blood taken to check my vitamin D levels and had to take my clothes off several times (if I am honest I didnt mind too much, although Mummy said she doesnt think I will be so keen when I am older!)
I was so brave and got so manay stickers that I actually learned how to say the word “sticker” while there!
Mummy and Daddy said that all the doctors were extremely pleased with me so we had a litte tea party on Saturday with my friends next door to celebrate. Mummy must have been very pleased as I got to eat lots of yummy cake and things I dont normally have…and I even got seconds!!
And this evening…….I had my first outdoor play in the garden without my visor and protective clothing!! Daddy kept checking with our light meter and at 7.00pm, he gave me the thumbs up that the reading was Zero! We all had sooooooooooooo much fun playing outside with fun glow sticks and flashing balls and I got to make my first mud pie which I enjoyed rubbing all over my bare hands and face!
I have gone to bed a very tired, and happy boy after a nice warm bath to get off my first garden dirt. Mummy and Daddy looked pretty happy too x x