A fireman!
Fireman Sam is her hero of the moment. Firefighter Penny is pretty cool too.
Helicopter pilot is also a possible career option. Tom Thomas is amazing apparently, but fireman Sam has the edge.
Could be worse, she could want to be a pig! The Peppa obsession is officially over. Thank goodness.
2015 Turner Syndrome Conference
Wow.....for those of you who attend, or have previously, then that single word will suffice.
To be among people who are mostly strangers, but yet feel like family, and to meet people for the first time but feel like you've had a connection for years, is a fantastic feeling.
To listen to professionals who are experts in their field, and passionate about Turner Syndrome is refreshing. To see girls, young and old, who look and feel at home is heart warming.
I learnt so much. I took notes. I devised an action plan. We booked our room for next year!
So what did we actually learn?
Ear health is one of the priorities. So Mr 'I'm desperate to discharge your daughter as I don't understand the seriousness of TS and ear issues' WATCH OUT!
Blood pressure - it won't be high because they are anxious, it will most likely be high because of their TS. Getting someone to realise that it's actually important to monitor Grace's blood pressure will be a start.
Being deficient of oestrogen due to non functioning ovaries, and being dairy free means I need to get a wriggle on with calcium supplements for little G. Eventually when she receives oestrogen artificially then bone health should hopefully be less of a worry.
Anxiety is a big thing for our girls. Grace suffers already, more so than just being an average clingy toddler. The involvement of a psychologist later in childhood is a perfectly acceptable ask, if not a vital lifeline (for the counties who's services aren't cut..).
Play therapy is more than just a well-meaning member of staff waving bubbles, teddies, and Lego frantically at your child in a desperate bid to distract them during an appointment. It can be as much as weekly visits to the hospital just to play and become familiar, comfortable even with the surroundings. Cue my to do list....
I remembered to be thankful for free NHS prescriptions (our girls need a LOT of medication and injections).
I also learnt that care for Turner Syndrome varies GREATLY according to what county you live in. Country even. Also that NHS red tape and issues with medication manufacturing costs are a total arse. To hear stories of mothers who are having to battle tirelessly with GPs over the prescription of drugs that are vital to instigate puberty, regulate hormones and generally promote good health is simply heart breaking.
I could go on, but that would mean consulting my notepad as my brain is at bursting point. Parents evening, the after effects of moos ear infection, and an emotionally draining yet totally empowering weekend are all catching up with me!
Next week.....
Hospital. Twice. Uck. Screaming in bucket loads. Half term. Hurrah. Thankful for small things. Enough said!
