Been chasing all over the place today. Tabitha had a 9:30am appointment in Bristol, then had to go to playgroup over an hour away from the hospital. I ended up blindly following my Sat Nav – never a good thing to do in Bristol – and ended up having to pull over right in front of the Clifton Suspension bridge hunting for money for the bridge toll! We made it on time though in the end.

 The appointment was fine, no further problems with Tabitha, but as usual there was an awful lot of “We just don’t know so we can’t really say”. So far, we have heard this from the Surgeons, the Gastro Team, the Respiratory team, the Endocrine team, the cranio-facial team, the Orthopaedic team……and the list goes on. It’s very frustrating to have no answers. You kind of think that when your child has a diagnosis, people will have an idea of what to expect, but no. They remain in the dark.

Ellie is getting very tired now she is at school. We have a meeting in two weeks to decide if she can start full time or not. I’m in 2 minds. I think we need to talk it over with the Teacher before we make a final choice. Anyway, because she is getting so tired we have taken to puting her to bed about an hour earlier. It’s weird now in the evenings. We keep thinking it is later than it actually is because the girls have been down so long!