A New Year

So where to start.... Life is such a roller coaster that it can be a hard ride.  Life as a working mother can be very enjoyable and tiring all in one.  The dinners, the cleaning, medications, baths, playing all squeezed into one evening sometimes makes me want to be a transformer that can turn back time for even an hour just to make it all a bit smoother, lol.  Adam is now on 3 medications which just in itself is like a full time job to think about.  Sometimes even my hair hurts because my poor brain is so full.  I am really lucky that Adam is an awesome mannered little man and loves to help me in the. house because then even my chores are fun times.  I love my job so it makes me having to leave Adam much easier, having a wicked day home doesn't hurt either.  We've had extreme money stress this January and other hectic things that has me wondering what in world 2011 is going to hold.  If the year that we have so much hope and promise for started so negatively then how in the world is the rest of the year going to be great.  We just have to keep our heads up and move forward and hope for the best as this year is going to be one hell of a ride.  Adam had his second heart catheterization and it left a lot of questions instead of some hopeful answers.  His pulmonary pressures are a little bit better since the first one which was done when he was first diagnosed with no medicine.  Now he's on 2 medications with minimum change.  They tried out some other medications while in the Cath Lab to see how he would react and not much change came from that either.  The one thing he did respond to was oxygen.... which has them wondering what else is happening in that little body that we haven't figured out yet.  He's slowed down quite a bit which is disheartening for me to see and has peeked the interest of Adam's Dr's as we're trying to piece together the puzzle that is his body.  Adam's case will be presented at the Cardiologist Conference in Edmonton next month for all the local Dr's to discuss whether they would close Adam's ASD.  That will not be the deciding factor,  Adam is going International.  His case is being presented at the International Cardiologist Conference because with him not having much change in his pressures Dr Adatia wants to see what other Dr's in the world would do.  That's in March so we have even more of the waiting game.  In some ways it's nice to wait, it's nice to not have Adam with his chest opened up recovering for days, weeks, etc and having a huge scar.  In other ways we know that day is coming regardless, it has to be done before the rest of his heart gets sick and we have no idea what road we are truly on right now.  Adam looks healthy, runs around, plays, talks and yet is a very sick boy inside.  It's a hard way to live when I see other children in the same wards as us that look so frail, sick, and sad so it seems like we shouldn't even be there.  After this heart cath I came to a realization, Adam's case is going International which is  a huge deal.  He does deserve to be there, he is a sick little man his just hides behind a mask of himself.  I always said the day he slows down is the day I worry, well the weekend before he went in was the first time I worried.  I watched him slow down over 2 weeks and started to wonder what was happening in that little man of mine, in which from the Cath point of view he's doing alright.  All we can do now is wait, hope, and be thankful that Adam can do lots things, has a fantastic disposition and is a happy boy.