25 July – Paediatrician appointment
Unfortunately, our paediatrician was away (jetting around the world, apparently). I’d hoped we would see his fellow, who is a lovely doctor and knows Lil Z well. However, instead we saw a different paediatrician, who did a decent job despite not knowing Lil Z. QB and I gave accounts of how pleased we were with her development and how we’ve managed without a major seizure for several months now. There were only two areas of concern:
- Scoliosis – it is a big problem for girls with Retts and several professionals have said they’ve noticed a slight curve in Lil Z’s spine. The doctor referred us for a baseline x-ray so that they can begin to track if/when it worsens.
- Eyelashes – her lower eyelashes on her right eye are beginning to grow inward again. They aren’t causing as much irritation as before, but after seeing what a difference having them repaired made to her happiness, I don’t want it to get to that level again. I raised the issue with our GP several weeks ago and she wrote to the eye surgeon, but I haven’t had a response. The paediatrician said he would write to him as well to request a re-assessment.
18 JULY – FLEXOR SPASM SEIZURE
Lil Z had a seizure around 9pm – I was lucky to have walked into the girls’ bedroom and noticed. The seizure went for around 4-5 minutes (that we saw) and stopped before we needed to give her Midaz. Afterward she was unsettled, but went back to sleep within half an hour.