Finn Fighters

I have spent a lot of the past month or so trying to wrack my brain about what I want to blog about.  These past few months have been a so exhausting both physically and mentally.  As many of you may already know we are expecting baby Schulz number three...  (that was a HUGE shock)  The diagnosis of my sweet boy and the shock of a very unplanned pregnancy has left me in zombie land not knowing what to do next or have the energy to do the next thing.  Slowly but surely I am plodding along making "peace" with what is happening in out lives.  (I put peace in quotes because I am not sure that I will ever be at peace with Finn's diagnosis, it is not fair, not right that he should suffer.)  A lot of mito kids have earned there wings this winter, the reality of this disease is so so sad, one can only hope that a cure will be found and fast.
Finn has stayed out of the hospital which has been wonderful but his sweet life has not been without struggle.  This week we are meeting with his immunologist regarding this constant infection that he is fighting, he has been on antibiotics for over 3 months and is fine on them but off of them he starts to sink.  IVIG has been thrown on the table along with routine IV infusions to give his body what it is missing...  We have also realized that Finn is no longer gaining weight. For a kid who is on about 2500 calories a day being fed by a g tube that is not good.  We aren't sure what we are going to do next, Finn's amazing nutritionist is working with the Drs in Atlanta to figure out a plan but in the meantime we wait.

So all in all there has been a lot for us to digest and arrange and just plain ole manage at this point.  BUT we went and enjoyed the amazing weather that we have been having!!  Here are two shots of the kids feeding the ducks at Freedom park.

Also I wanted to announce that this years date for the Energy for Life walk has been set!!!  October 15th!  I am co chairing the event again this year and we would love your help, attendance and support as we fight for Finn and all of the other sweet ones who are affected with mitochondrial disease.  Last year we raised almost $80, 000 that went towards research for mitochondrial disease, this year we are really hoping to blow that number out of the water, this disease needs a cure!!