The Chase

Sometimes life can feel a little bit like you're on a treadmill, struggling to keep up. That feeling of constantly chasing. I've had that this past month. 
When you're the parent of a child that has a condition that isn't common, and thus doesn't always have a huge amount of knowledge or info out in the pubic domain, YOU become the expert. You become the one chasing for this and pushing for that.

Generally, a vast amount of G's care runs like clockwork...her Ear, Nose and Throat clinic send us a new appointment within a week of her most recent appointment, as do her Opthalmology clinic, her eye consultant, her general paeditrician and usually her endocrine consultants for her growth.
HOWEVER, anything extra, anything that has cropped up or anything that may not be on the radar of her current consultants, can result in me constantly needing to chase people.

Currently I have been needing to chase a 24 hour blood pressure monitor since G's blood pressure was consistently higher than average back in March/April/May of LAST YEAR. Last year! 5 year olds don't generally struggle with high blood pressure, but 5 year olds with Turner Syndrome can...meaning I have needed to chase.

G's heart check is due in March. Usually we have the appointment months in advance as a consultant from a specialist hospital travels up to run the clinic. But no appointment. Most 5 year olds don't need a heart check, but a 5 year old with Turner Syndrome does. G's checks are currently annual as although one heart condition rectified itself (hallelujah!), a slight abnormaility was noted last year. An abnormailty which needs regular checks. Thus I have needed to chase.

And as for the ugly monster that is anxiety, my goodness we can't seem to get the better of that yet.
THANKFULLY after several phonecalls, voicemails and a plea to various other paeditrician's sececretaries to get someone - ANYONE -to get in touch with me, I finally got a call to discuss our concerns. Our paeditrician is great, she will generally follow my lead and will do anything for us. It just sometimes has to be MY lead. So:

1. 24 hour blood pressure monitor booked (it best work this time!).
2. Cardiac consultant contacted to chase up the heartscan/echo.
3. Referral made to community paediatrician regarding anxiety, and also various traits which G displays.

I also put a plea in to school regarding G's anxiety, and many other 'little' things which actually all add together and on some days can become overwhelming for little G. We are hoping these will be addressed with time, but knowing the education system myself I do know that it may not be imminently due to budgets and other constraints. On the radar at least. 

Gosh, my head has felt like it has been ready to explode. It usually does - that meme that is doing the rounds on social media rings true: my mind is like my internet browser - I've got 18 tabs open, 4 of them are frozen and I have no idea where that music is coming from! 

So how is our beautiful G?

She is good! Growing so well thanks to the magic growing juice. I'm constantly on ebay getting bigger clothes.

Feb and March are pretty heavy in terms of of hospital appointments, but that's the norm for us.

 Our brave babe finally had THAT blood test, and thankfully the results came back as normal.

Tummy aches are a huge problem at the moment, but we are likely looking at it now as a physical manifestation of anxiety. 

She still adores little H, they are thick as thieves sometimes. Especially the time they both drew all over G's bedsheet in green pen..., 

Yes we have our ups and downs, our major meltdowns, but actually that is also the norm for us. 

Nobody need judge their lives on what is the norm for others. Everyone's normal is different <3