I have not updated in a while as a lot has been going on. It has been a mix of progress and taking steps back, but thankfully the good has outweighed the bad.
Therapy has been going exceptionally well with harry finally walking in the last two weeks, both his physio and occupational therapist are very happy with how he is doing. Speech has been challenging and has been little progress if anything Harry is resisting it with all his mite and still flat refusing to cooperate with it. But hopefully with some perseverance we will move forward soon and be able to gain some form of communication with him.
The seizures which started at the start of March have unfortunately continued with five days being the longest break he has got from them. A few of them have been scary and upsetting but for the most part Harry just sleeps it off and gets on with life. A EEG preformed last week should hopefully point to something that can be done to manage them better. A neurologist appointment scheduled for the 1st should also provide some answers.
unfortunately yesterday I was reminded how cruel and judgemental strangers can be whilst waiting at the airport. Comments such as "what's wrong with his head?" and "it looks terrible and I should have it fixed" are unhelpful, hurtful and go to show just how little awareness there is out there when it comes to Cranisynostosis. I could only hope that by sharing what Harry goes through I could change how the world views deformities and all that goes along with them. But sadly there will always be people like this. So instead I wish for tolerance from all people of the differences each other faces in various forms, be it physically, mentally or medically.