a LONG overdue update on Finny

We had the frist meeting with the nursing agency that will be providing care for Finn until he no longer needs it.  I was very nervous about meeting and having to come up with everything that we do day to day.  The meeting went PERFECT and we are going to start getting a RN 20 hours a week and on top of that 60 hours of month of respite care!!  The things that this opens up are HUGE!!!  We are only at the tip of the iceburg of how wonderful this is.
Over the past few months we have started seeing infectious disease because of the "funky" skin rashes that Finn has been having and the constant upper respiratory infections that he has had since November.  They drew blood work and we found out that his IgG levels were low and that he had not made any antibodies to the vaccinations that he has recieved, this past Tuesday we had his titer levels redrawn...  another waiting game!  We are headed to Duke in a few weeks to see about starting IVIG on Finn to help his immune system, which means another doctor to explain it all to again...                 


Finny is in a very very stable state recently and we are loving seeing him as Finn and not this angry child who feels horrid and screams all the time.  I feel like we are slowly getting a handle on what he needs! He is starting to follow a rough pattern that helps us figure out when he is going to crash so we can help him early!
Our early intervention program just purchased an Ipad app for Finn to use (Porloquo2go) to help him learn to effectively communicate even when his body and brain are working shitty!!  We start training tomorrow!!

In other family news, we are 33 weeks pregnant with another boy (Liam)  This pregnancy has been just as hard as Finn's if not harder...Cadence and Finn are so excited for baby Liam's  arrival  and we so excited to meet him!!