Heavens almighty!

Came off the phone today having spent maybe 2 hrs on Skype speaking to my family for Mum's birthday, all there, both brothers, both sisters, brother and sister in laws, and all the nieces at Mum and Dad's. A house of 14 for dinner. How delighted mum is!!! How I wish I were celebrating with them.

I've been tidying up the playroom and I'm sitting down with Reuben. He's getting into a bad habit of putting his Passy-Muir speaking valve in his mouth. The PMV is simply a one way valve through which Reuben can breathe through and into his trach, but it does not allow exhaled air to pass, with the result that exhaled air is pushed up past his vocal chords and out of the nose and mouth, thus creating sound. He's on my knee and as with each time I work on communication, his head is up against my mouth so that he can hear me more clearly through his left ear. And it is at this point that I can feel, but I can't quite be sure, some air from his nose and mouth. So I start to think about speech. What sounds would encourage the most air to be pushed out from his nose and mouth. What might be the best sound for him to make to encourage a large exhalation of air. Well, "h", the sound of breathing, I start to think as in "ha, ha, ha", rapid breathing. That forces air out of your mouth. So I sit Reuben on my knees directly facing me with his legs straddled and I start this rapid breathing exercise I've made up just now trying to get him to make an "h" sound. And he does, without his speaking valve. And then I push my luck and cap his trach with my finger without breaking the rhythm of the two of us doing "ha, ha, ha" rapid breathing so that he won't be too aware of me making the change and him thus adapting his breathing from the trach to the mouth. And sure enough, out pops "ha" and in he breathes and these are the first breaths he has taken independently through his mouth for over 2 years. On the 6 failed extubation attempts from the ventilator, there was no passage of air from his nose and mouth. And I push my luck still further: he's really enjoying myself, audibly laughing without the speaking valve and whilst focusing on me, unperturbed that I'm blocking his trach with my finger, or rather he is aware of that, because he keeps imitating me and doing it himself and giggling to himself. What what I mean is that he's forgotten he breathes through his trach and that for me to block it is a bad thing if the object is to breathe. And I want to hear that magic word, his first ever word back in July with the speech valve. And I say "Ma, ma, ma, Mama" and he tries really hard and nothing comes out, and I continue to cap his trach and he looks me straight in the eye and then as if by magic, he breathes and exhales and with that exhalation I hear "Mama".

He rarely wants to imitate what I'm saying to him in words, but further still I push. Jason has since been summoned because I'm hopping mad with excitement and in the same way, I mouth and clearly enunciate "Dada" to him and silent mouthing sounds, deeper breathes, harder exhalation and "Dada".

How has he been so calm within as to rechannel at a moment's notice his exhaled air without the benefit of the PMV through his nose and mouth? The important point is that although a child can learn to cover the hole when exhaling to allow vocalisation and then uncovering when they need to take another breathe, I am continually covering the hole in the above experiment for longer than Reuben would be able to hold his breath! Thus, he must be breathing through his larynx again...