I know it has been awhile...

It has been so long since I have posted and so much has gone on I have no idea where to start!!  I want to start blogging and sharing the good along with the hard times and right now the good is overflowing!   This winter we were able to stay out of the hospital due to some realizations about Finn's non existant immune system and his need for antibiotic coverage, so he stayed on Omnicef all winter and was started on pulmacort and we kept him completely away from any potential infects.  We have found an amazing CAP worker (a NURSE!) who has been such a blessing.  We have needed help with Finn for a while now and Essence is Gods answer to our prayers!  She fits right in and the kids love her!! 

Finn has become a big brother since I last posted  Liam Matthew joined our family and has become what I have deemed the beginning of a redemptive period in our lives, he has brought some beautiful times into our family.  God has really blessed us!  One of the sweetest things is bathing all three of them at once and watching Cadence and Finn wash Liam and love on him.


We made some of our yearly check up appointments for Finn these past two weeks to prepare for surgery.  We headed to the ENT because Finn has lost all of the hearing in his left ear, after examing Finn and retesting him the doctor stated that he thinks Finn needs his adenoids and tonsils out as well as permanent ear tubes because he has absecess on his adenoids he needs those out because they are 3 times normal size (great thing to tell an anxious mom by the way!)
Cardiology was a breeze!  Finn's dyautonomia is changing from the point of he isn't always symptomatic when his blood pressure is to high or to low,  his blood sugars have started to be ALL over the place but without symptoms.  And his heart looked AMAZING!!  (Can I put a plug in her for the great Dr Greene!!)
Neurology was not so encouraging.  Finn has been having some vision changes but his eye exam was okay.  Also he has been complaining of his head hurting, Dayal (or a-hole as Finn calls her) thinks that they are migraines and now we are faced with what to do with all of the options.

There are some days where aside from Finn having nursing that we forget that there is anything wrong with him and then WHAM, reality smacks us in the face!

 Finn with be having surgery on the 11th of October and we really really covet your prayers for him.  Every time he has to be sedated or under go stress the risk of something happening to my sweetness increases.  I am so anxious about surgery about sedation but I have full confidence in these doctors.

This week Andrew got a new job!!!  His company sent he and I up to Chicago for training and it has been the best week that we have had alone in a long time!

The Energy for life walkathon is in 2 weeks and if you haven't joined our team we would LOVE to have you join us!  I will post a link!     http://www.energyforlifewalk.org/c.aiILIZNMKkK0F/b.6700253/k.8E5D/Join_a_Team/siteapps/teampage/ShowPage.aspx?c=aiILIZNMKkK0F&b=6700253&sid=ktJ1IcOPIeLUIbOKKoH


Will continue to update as we continue on this amazing journey!!