Update on Neurology Apt

I know this is a little bit delayed, but we had our Neurologist apt last week to go over Aiden's eeg and find out what it means and where we go from here.

First to just say the whole feel of OHSU compared to Emanual is amazing! They had a volunteer sitting in the waiting room at ohsu doing beads with the kids... It just feels so much more kid orientated and friendly.

Our Neurologist is very happy with Aiden's last eeg and what he said was that all he had was the written report from the last eeg Aiden had at Emanual, but even on that eeg it showed improvement from the one prior. It angers me that we were never told this! His last Neurologist did not even bother to mention anything regarding Aidens last eeg... not to mention that there was improvement ! So he said we have had more improvement since his last eeg and his background activity that was once very disorganized is now normalized!!!! it is what he would expect to see from a baby Aiden's age!!! This is such an amazing feeling!!! He still sees seizure "causing" activity throughout Aidens brain so he is by no means healthy and "normal" but this is such a great thing! This just means that Aiden will have an opportunity to develop!!! To what extent we do not know but it at least gives us hope!

This also does not change his diagnosis... which I wont lie I was kind of hoping he would bring us in and say "oh I'm so sorry but I think hes been misdiagnosed!" but don't we all hope that when something this scary and serious happens! So what does this all mean? Well we continue what we are doing with meds and treatment (therapy ect) and hope that we just continue to see improvement and maby some lessening of the seizure causing activity? At one point he does want to try to wean Aiden down to 1 seizure med (currently hes on 2) but I was just not quite ready to do that yet for fear that the seizures will come back. The one med he wants to wean him off of is one hes been on since birth. The doctor says the 2 meds hes on can cause problems with each other and our main goal is to not have him sedated so he can develop as much as possible. So he did say we can wait until hes maby farther down the road of being seizure free before we start this. It makes me excited for him to ask my opinion and for him not to just throw medicine at Aiden, which has been a problem in the past with over sedating him and causing us to have to be admitted to the hospital.

So for now things are I believe as amazing as they can be!!! We continue to pray that Aiden just continues doing so well, and still take it day by day. It is kind of funny though because you get so caught up in the "day by day" that you don't plan for the future at all, I just realized the other day that Halloween is coming up and I get to dress Aiden up!!!!! I am so excited to be able to get to this point, 4 months ago I didn't know if we would ever get to do this, or be able to dress him up for the holidays!!! It brings some excitement into our very scary, sometimes hopeless world!!!

So be ready for all the mass pictures of Aiden in his Halloween costume!!!