Things have been very good around here.  It almost feels like we have a "normal" life.  The husband and wife go to work and the kids go to school type of normal.  LOL.  The boys got an early Christmas present.  The 46' flat screen was put in on Sunday.  It's  like a whole new world for them.  The simple things in life really!!  Isaiah is in his glory but is a little perplexed of how he can get into things.  He has found a way but we are one up on him. 

Our next step is to move the outlets behind the tv so he cannot get to them at all.  But the toy chest will do .  for now.  Avery is a whole new lil man.  He can now see the tv from any angle and he is thrilled.  Who would know that the boys were so much into technology.  Typical men!!!!!!!!

Avery has been sounding great respiratory wise.  The only recent issue is he has been having difficulty falling asleep at night.  Something is just a little "off" with him but nothing too concerning.  Honestly, I have been thinking about where he was this summer, fighting for his life and where he is now (a happy tv watching boy) and we are truly blessed.  Avery has come a long way this yr.  He has been through so much and scares the crap out of us alot.  But when he is good, he is good.  I am just so thankful that we got another chance to see more of his great personality.  Just cannot imagine our lives without him.  He is our little Hurricane Avery (conceived on Hurricane Katrina, of course).  While I know he will always be in and out of the hospital, I find such peace knowing that he has such a great quality of life at home.  Especially since he discovered the Christmas tree.  He could sit there for an hr. and just smile at it.  Soooo cute. 

Isaiah....another amazing lil man that has truly come from a long way.  Yet I am faced with a "quality of life" decision for him.  As you all know, we have basically tried everything for his retching cycles.  He is at the point that he has a cycle every 7-10 days that last 3 days.  So it is surely affecting his quality of life, no question.  But the alternatives suck.  He has one more med he could possibly try but it runs the risk of  putingt him in liver failure.  Obviously not a good option.  The other that was suggested by Pallative Care could be a better option for people who truly don't know our wild boy.  Apparently, IV fluids is the gold standard for Cyclic Vomiting (which is what Isaiah has suffered from for yrs).  It doesn't prevent the cycles but can bring him out of them much quicker.  Problem being is you need some type of access.  Number one, I will NOT live in a hospital with Isaiah every 7-10 days to have IV fluids.  He is a whole different animal than Avery.  He would have to been in a "Can't get out bed" which they only have so many in the hospital and that is just not quality of life for him or us.  He HATES to be confined.  Number Two, in order to stay out of the hospital, he would need permanent access which would be a central line (port or a broviac like Avery has).  HUGE PROBLEM.  Isaiah would rip it out in about 2 seconds flat even if he's sick.  Okay, maybe that is being a bit dramatic but it's certainly a huge risk.  The line is placed in a main vein to the heart.  Which means a huge infection risk amongst other things if it will pulled out or infected.  Isaiah is just tooo crazy to risk it in my book.  I would be a constant wreck worrying about line infections.  He is just not that kind of sick boy and I don't want him to be, kwim???

So you see my dilemma?  What would you do????? Quality of life for Avery is much easier to define than for Isaiah.  I have not made any decision and am just trying to get him through every cycle.  But they are getting much more intense and he gets so much sicker with them.  I just don't know what to do.  Just wish they would go away.  If Zay did not have cycles, he would be the happiest, craziest, non complicated mito kid ever.  But obviously that is a total oxymoron, right? Mito and non complicated do NOT go together. 

So that has been on my mind for awhile just have not gotten around to getting it out.  At the end of the day, I am still grateful that the boys are doing well, considering........