Hello Blog, it's been a very very long time.
Things have been tough, busy and stressful. At its most basic, the reason behind my lack of blogging is downright knackeredness!
Tiddler is doing really well physically, she is now very effectively commando crawling and last week finally learnt to sit up on her own from lying. She is managing to stand supported when wearing her bright pink Piedro boots. The Physio was really pleased and impressed with her progress so that's great and it's reassuring to finally see things moving in the right direction.
We have also seen the Geneticist recently, who is now testing Tiddler's DNA for a "few very common muscle problems"... I didn't ask what... I have googled (i know, I know) but not really much the wiser. We will find out the results in 3 weeks. They were originally focussing somewhat on Ehler's Danlos as we have that in our family but as I do not have EDS they have been head scratching a bit. A diagnosis would be good- good for us, good for family, good for Tiddler's dalliances with "the system". We have already encountered the negative "oh, well she doesn't have a diagnosis does she.... " to requests for more support. It may be though that the quest for a diagnosis is both fruitless and pointless. Tiddler is still Tiddler and a label doesn't change who she is. I have got my head round this now I think.
What my head is struggling with though is the isolation. We just don't fit in. Tiddler behaves differently. Mums look but rarely comment or ask about her. To those that do ask about how she's doing, well I struggle with what to say. Do they really want to hear my answer or are they looking for the polite, typically British "fine thanks". Where do I start? What would I have said in their position? Probably nothing... I am no different to them then.
The main diffiiculties right now with Tiddler are her continued feeding issues, with associated arching and hitting her head when in her feeding chair, general head banging - which I am finding very upsetting- and her extreme under responsiveness to pain. To manage all three is proving draining and very very stressful. We are in the middle of a programme of Occupational Therapy so fingers crossed that this has a quick, positive impact.
In the meantime, I need to get out of the house every day. Tiddler's constant colds, Tonsilitis etc have made this hard and I have felt it! I also need to get myself out on my own. I rarely do this, largely due to feeling so tired, but really must try...