Tomorrow kicks off the start of Mitochondrial Disease Awareness Week Sept 19th-25th.  Many children and adults suffer from this disease daily.  This month alone we have lost 2 beautiful young children from this horrible disease.  There is no treatment or cure but through awareness and fundraising researchers are able to find new mutations and medications.  For more information visit www.umdf.org We are attending the MitoWalk in Boston tomorrow.  I can't wait to meet other families and some that I already know.  It's going to be a beautiful day out too :)


In other news, I did see the surgeon yesterday and I do have a hernia.  Ugh!!!! Surgery is scheduled for next month.  I want to get it out of the way before things get crazy with basketball session.  It just really stinks that I have to go through this again and now it will be worse b/c I will have lifting restrictions.  I got off easy the last time but not so much this time around.  I am hoping that I will be able to recover at home rather than in the hospital with Avery. 

Avery is hanging in there.  Thanks to home bipap, he has been doing well respiratory wise.  He is using it both for naps and bedtime and I can really see a difference with him.  He saw immunology and I think they just suck as a whole.  It was a big waste of my time.  I knew they were going to up his dose of IVIG due to his low numbers.  Of course they did and it was supposed to be at my house for today but it was not.  So I had to give him the old dose.  I have never met a department with such poor follow through on things.  I also let them know we never got the order for bloodwork, although they claimed it was sent it.  Whatever... I really wish they would get their act together.  Grrrrr.   I am just hoping we can get his levels up enough so that he has more protection from viruses that could really make him sick.  They also put him a request for him to get the monthly RSV shot.  I doubt number one that they will follow through with that and number two that Avery will be approved.  It is very costly and reserved only for NICU babies and other specific diagnoses.  But it is worth a shot.  I won't hold my breath. 

My hope in the next few wks it to get caught up with things for work and keep Avery as healthy as possible.  I don't know if it will take me longer to kick back from this procedure.  Although knowing myself, I will be back before you know it.