New Loop Officially Thrown....

So our cute boy decided he still doesn't like to breathe at night and even at times while he's awake.  So after his tough surgery at the beginning of the year and the steps to control his reflux we're right back where we started from.  He will be on night time oxygen and he will have a new sleep study (that we pushed to January for financial reasons, with Dr approval of course), new scopes and possible pulmonary testing. 

I've been a bit spent and exhausted today.  In exploring my reasons, when it could really be worse; I think its like this:  you do things thinking they will make something better.  You start living life like things are good.  Then something like this shows you not only is it not but somehow you missed the signs that they weren't.  How can you miss it?  So its like you really try to push yourself into denial because you just don't want to believe it and you think there must be some mistake and yet you are still making the phone calls and making the plans to find out what is wrong, yet its this surreal process of going through the motions but really just wanting your life and the life of your child to be "normal".  To just not worry about this, to live in blissful ignorance.  To just live.  Sometimes that is my greatest wish of all, to just be. 

Truly we've had a good few months run really, fairly uneventful; so I really just need to appreciate that.  But for today and maybe tomorrow I'm going to induldge my emotion as it stands and then just pick up and move forward.  Enjoy the 4 months we have before we have to worry about any tests or further intervention and just be.......

More Simon is Getting Healthier News-Sort of

I spoke to Simon's ENT nurse today because we were supposed to do a follow-up oximeter(sp) a few months ago but the scope and GI stuff made me forget about it.  So we will have that done sometime this week and *crossing fingers* we can return his oxygen concentrator.  He's been sleeping pretty great most nights, he still has moments but overall much better.  Most of his sleep apnea is Central so oxygen really won't do much if his brain forgets to breathe, but he's been sleeping pretty well so hopefully the obstructive portion of the sleep apnea is resolved enough that his dips are more mild and we can just get rid of one more piece of equipment.  Woo hoo!