Progress is a funny thing...

Someone recently asked me if I remembered way back when I wrote a blog.  It couldnt have been that long since I wrote one.  It was just the other day wasnt it?  What do you mean it was April?  Ouch.  It has been a while.  Anyway, my apologies I'll try to do better next time.

Progress is a funny thing.  I said that already didnt I?  Most of the time progress happens slowly; so slowly you can barely even notice that it is happening.  My children only grow one of two inches per year.  It takes years for them to learn numbers, letters and colors and then take that information and learn to read and write and then even more years to go to college and learn a career and get a job.

Although if you look at the big picture progress appears to be a painfully slow moving snail-like thing sometimes it can be very fast and abrupt and nearly instantaneous.  This is the case with Noah lately.  Noah is nearly two years old and has been home from the hospital for 20 months.  In that time he has done a really fantastic job of adapting to his condition.  He has learned to make noise and around the trach and sign words that he couldn't say.  His progress has been slow but continuous.  We have had a Passy-Muir Speaking Valve (PMV) that we have tried to get him to use.  For those of you who aren't up on your tracheostomy lingo a PMV is a small device that attaches to the end of his trach that allows air in for him to breathe but wont allow it out so that it goes up his airway and out his mouth and nose (like normal).  This allows him to speak since speech is a process of exhaling air and vibrating your vocal cords. 

Noah hated his PMV. 

That's an understatement.  He hated his PMV with a purple passion.

If we put it on him he would hold his breath til he nearly turned blue and then when he couldn't hold it anymore he would start screaming and crying.  This would go on as long as we kept it on.  As soon as we took it off everything would be fine again.  As parents we really wanted him to wear the valve because it really would help his speech development and get us one step closer to capping the trach and ultimately getting it removed.  It represents progress.  His reaction to the PMV was so severe that we began to question if he would ever tolerate it and if he wouldn't tolerate the PMV how would he ever tolerate a cap over the trach that would force him to breathe in and out through his nose and mouth.  I never realized that breathing normally was going to be a challenge.  We even began considering modifying the PMV by drilling a hole in the side of it so that it would allow some air to exhale through it and some through his nose and mouth in hopes that maybe he would tolerate it.  We were desperate for some sort of progress that would help him speak and breathe better.

About once every two or three weeks we would try to put the PMV on him because we are into torture and screaming.  The reaction was always as described above.  No progress.  While we were at the beach a couple of weeks ago someone asked about how he was tolerating (or not tolerating) the PMV.  I felt like a demonstration was in order.  I wanted to show them how severe his disklike of the PMV really was.  I took it out of the case and put it on his trach and braced for the screaming fit that was coming.

I waited.

Waited a little more..

And a little more...

He wasn't screaming or turning blue.  He was just standing there.  Then he started making a few small noises.  Then it happened.  He made a zurbit, you know, a rasberry, mouth fart whatever you want to call it.  He had been trying to do them already with the HME on but since all of the air comes out through his neck it just comes out as a puff of air.  With the PMV on it all of a sudden came out of his mouth.  He giggled.  Then he did it again.  Then he started making noise all kinds of noise.  He just started doing a continuous stream of sound.  He had never been able to do that before. 

He still wasn't screaming.  He actually seemed to be enjoying it.

You could almost see him realizing that he could do something new. 

Over the past two or three weeks since the beach he has worn the PMV nearly continuously when he is awake.  In that short time his speech has improved noticeably.  He already has several new words and sounds that didn't exist previously.  He has had to learn volume control.  The first few days that he wore it he talked very loud.  He had to use so much air to make noise around the trach and he was doing the same with the PMV and it came out very loud.  He is learning to talk a little softer now but he does like to scream a little just because he can now.

Noah insists on wearing the PMV now.  That is a huge change.  He now brings the PMV to us if he wakes up from nap and we don't put it on him immediately.  That is amazing considering that he used to run from us crying if we were to show it to him. 

Progress is a funny thing but I am enjoying the heck out of it and I cant wait to see whats next.