Emotional Rollercoaster

Is the best way I can describe the past month....

I will start with the good emotions:

Happiness: I have no idea what we have done but Avery's fluid issues have seemed to resolved themselves for the time being.  His weight has been pretty good and his urine output has been better than it has in weeks.  We have done nothing different at all.  He hasn't even need a dose of IV lasix (Thank God), especially since everyone is so freaked out about it.  I mean I know it is a big deal but he did very well with it and is being watched very closely.  His labs that I drew yesterday were great.  I am just so happy he is good right now.  I can only hope and pray that it lasts.

Another thing that makes me smile is that the boys will be riding the school bus together.  Just makes my heart smile :) Although Avery will only be going 2 days a week, he will still ride with Isaiah.  They will also be going to two different schools.  It works out and I am so happy they get to be together.

We had a good weekend rafting.  I cannot say how therapeutic it is for Rick and myself to do normal things with other couples.  Plus, we really need our time away.  It was such a beautiful place and the rafting was CRAZY.  Our raft flipped over (all 8 of us) but we survived and honestly that made it so worth it.  I am just happy we are surrounded by such good people. 

Ok now onto the bad feeling.......

Sadness: My good friend Debbie from Canada lost her daughter Jaiden on Friday.  It is so heartbreaking and no parent should have to go through this especially twice.  They are such great people and wonderful advocates for their children.  They need your prayers to be able to get through this difficult time.  Rick suggested I go see her in the next couple of weeks as a birthday gift and I thought that was so good of him.  We share a bond like no other and I want to be there for her, if only for a weekend. 

Fear: that my boy is slipping away from us.  Sure he is doing great right now but the level of his care has changed so dramatically.  Anything could take his precious life at this point and it tears me and Rick apart.  Who would have ever thought that our dinner conversation would consist of us planning our baby boy's funeral.  But it does and THAT is our reality and it sucks big time. 

Confusion: the whole Make a Wish trip this Fall.  I am leaning towards not going.  Who am I doing it for us or the boys? Rick, me and Nessa can go on a trip anytime.  Let's face it, Isaiah hates being away from his tv for 5 minutes let alone getting on an airplane where he has NO idea where the heck he is going. He will be retching his guts out for a couple of days.  Then you have Avery who could very quickly go into a respiratory crisis either in the security line or on the airplane.  We would end up bagging him as we enter the plane.  Now does that sound like fun, I think not.!!!! He would be perfectly happy going to an Elmo show and so would Isaiah.  I don't want to make his situation worse b/c we felt like we needed to go on a family trip b/c the reality is that is not for our family. So while it sucks I feel that it is best for Avery and Isaiah. 

I think this about sums up my feelings over the past couple of weeks.  You know we are heading into Mitochondrial Awareness month and I find it so sad that in the past year we have lost about a dozen kids that I know just from online and in-person interactions.  We just really need to find a cure for this horrible disease b/c it just destroys lives including ours :(