Kate is in Year 1 at school and aged 6. She lost her two front teeth before Christmas and has two others missing at the bottom at the moment as well!
She was excited to be being picked up early from school to go to the appointment at 'Hospital in London'. She doesn't seem to remember the last visit at all and it was like it was all new to her. Whereas for me, the thought of it and the journey, though we went a slightly different route as we don't need a pram now, so can use the tube, was familiar and odd emotionally. Especially so, as we neared the hospital. A feeling of uncomfortable familiarity is how I'd describe it, though once inside the friendliness of it and seeing it all the same, the waiting rooms, play areas etc put me at ease and the horrible feeling subsided.
Our appointment was in exactly the same room as last time, and the day she was diagnosed... and I found out she didn't have a 'nothing' wrong, but that she had a serious condition that needed major surgery.
As expected as the waiting room was full, we had a bit of a wait. I thank my lucky stars. It put things in perspective when you see others in there with much worse conditions, syndromes where craniosynostosis is a small part of their problems, and babies probably waiting for surgery or those with the stitches across their heads and I noticed an older girl (probably 8-10) who had quite noticeable asymmetry.
A long hour and a half wait, but Kate didn't seem to mind. We played at a play table with various toys, lego, read some books, coloured and enjoyed some 121 time together.
As expected also, the check-up was generally a chat, to check she has no problems, which she doesn't. In fact, Kate is remarkably bright and healthy, and doing well at school. We discussed slight asymmetry that is unnoticeable to most, including family. I mentioned her scar, which is widening as her head grows and she said it could be camouflaged later if really necessary. I doubt it will be.
They said she might only have one more appointment, for age 8 and then be discharged but I thought it was to age 12, and when she checked she said they'd revised discharge age again and it IS back to 12 so we probably will have 2 more visits to GOSH.
We were the last to leave the Cranio department, and the hospital seemed deserted. Kate used to love these cars, so I let her have a quick spin in the now empty space before heading for some tea and home. I left to get her from school at 2.30pm and we got home at something like 8pm. All in all a 5 1/2 hour round trip!
A copy letter came from the consultant, that goes to her Doctor locally and to Jane Leitch (Consultant we are under at Sutton/St Helier Eye Hospital) shortly after, that I've put with ALL the other paperwork/letters.
If you are on any similar journey, please don't hesitate to contact me with any questions, comments or concerns WendyHutchings@gmail.com
