IT'S MITOCHONDRIAL DISEASE AWARENESS WEEK

It is so important to spread awareness of this disease, the more people know the early kids are diagnosed and funds can be raised to find a cure for this disease.  Isaiah was diagnosed at 5 months of age when very little was known about this disease.  Because of an increased awareness they/we were able to find the mutation by the time Avery came around.  This is huge for our family and especially Janessa.  We can break the cycle.  So please help get the word out so the more children and adults can be diagnosed and treated.  For more information please visit umdf.org,

------------------------------------------------------------------------------------------------------------

I was able to attend the Mito walk with Avery and Janessa on Sunday.  Unfortanately, Isaiah was doing his typical weekend retching so he hung out with dad all day.  It was a beautiful day at Castle Island.  Avery did awesome.  He just loves being outside.  Janessa was a big help too.  She was bummed that we didn't bring Milo as there were so many dogs there.  Honestly, I could picture the scenario of Milo running wild and me chasing him down with Avery's wheelchair while Janessa is screaming.  So I opted to leave him at home, lol. 

While we were at the walk Rick was working hard :) I have to say I am totally impressed. Let's just say the mechanics is not one of his strongest suits. Well he gets a big pat on the back b/c he put together Isaiah's new bike.  Even the physical therapist was shocked and impressed, lol.  Needless to say I was very happy to see it and very impressed with Rick.  Isaiah just needs a different head rest and he will be racing down the street in it. 

 

Today was one of those days that I know I will look back on and say "wow, how did I do it?"........Both boys had appts with the Mito dr.  It is ALOT of work to get both boys packed in a car especially b/c we don't have a handicapped accessible van.  No wonder why I have a hernia?  So I finally get them packed in with suctions, O2 tanks, pulse ox machines, wheelchairs and the kitchen sink, WHEN........

Avery starts vomitting his guts out.  He started turning blue and just looked real bad.  We checked his O2 and it was hanging at 79% (very bad).  Once we got him stable there was no way he was going to tolerate the appt.  So off I go with Isaiah.  It was actually good b/c I was able to get things done in terms of med. changes for his migraines.  We start heading home and low and behold Isaiah starts retching his guts out.

Well this is all perfect timing and the boys should get Oscars for their performances b/c we had a meeting at 2p with Nurse case management.  They work for the state and decided how many nursing hours the boys get.  Avery gets 120 hrs a wk and Isaiah gets 70 hrs.  Because Avery gets the max hrs, the state is really scutinizes it.  Clearly Avery needs the hrs.  He is total nursing care and just ALOT of work.  But you HAVE to prove that there is a nursing need.  Basically, you have to give both arms to prove that your child is justified for the hrs.  Today was BAD with the boys.  Avery was desatting into the 80s and required lots of deep suctioning all the while Isaiah is near him retching his guts out and needing suctioning. It was really pathetic.  My poor nurse worked her tail off.  And still, they could cut the boys hrs.  It is absolutely crazy that people that have no clue about our lives will sit their and make a huge decision and it has such a great affect on our lives.  Heck I don't even think they will give my extra hrs. for the week of my surgery.  Maybe if I dropped the boys off at the hospital for that wk and sent them the bill they would change their minds.  Seriously!!!!! This is all thanks to Obama care and it will only get worse.

So far now I sit with my glass of wine and hope and pray that Avery is not brewing something.  He has been off for sometime and today was the worst.  This is all the nature of the Mito beast.  So if you could spare some prayers that the boys keep their nursing hrs. and Avery stays well I would appreciate it.