Pumkin carvin w the family

We are so blessed to have our little squishy here to be a part of this!

Trying to patiently wait!

Uhhh so I said I wouldnt do it this time, but I got an email showing that Aidens test results were in, so stupid me looked! Now im stressing out and anxious hear from the doctor. He mentions Aidens fit he had but I have no idea what any of it means... This one is even harder to understand... Uhhh curse modern technology!!!

EEG

So friday Aiden had his EEG, it went as well as expected. He ended up getting so pissed he had one of his episodes, which I hate to see but was sadly excited they hopefully got his brainwaves and a video, so at least the doctor can witness what hes doing and can tell us once and for all if they are seizures! After his fit throwing he did give the nurses his aiden charm laughing and smiling and giving his pouts. Such a little charmer! He also did so good and went to sleep (what they needed him to do) and he did his twitches again, which again im excited they got to capture them so we can know for sure wether they are seizures or not... So all in all it went very good and now we just sig and wait to hear from the doctor. Always a waiting game lol.

On a happier note also we had our first big family outing to the pumkin patch. He was so good ! He ended up falling asleep and missing most of it but he was so stinkin cute doing it! He even got to play in the corn bin with his big sisters and sit on his first tractor! Lol

Were also starting to become a little mobile! Ahhh watch out ! Hes starting to push himself around on his back by kicking and pushing his feet... So matt time is a little more interesting I push myself into the wall and off the matt and face into my toys!

Well off we go to do some tummy time!  And I will update everyone when I get the results of his EEG test when I get them!

Can't believe I haven't posted yet

So we had Aidens first real on purpose laugh! Sophy was playing with him( mauling) him and at first I didn't quite get what I was hearing. But music to my ears! It's posted on my Facebook if you haven't already seen it. Then we went days with nothing even with my attempts to get him to do it again, so I and I started thinking it was a one time fluke. But last night while he was supposed to be sleeping I was loving on him and he did it again!!! I was laughing and tearing up all in the same moment! I've found it's actually in response to him being extremely ticklish around his chin neck area! Lol so great!

So we have officially hit the 3 month mark for no seizures!!!! Whhoooohooo!!! Turned 6 months and started laughing all in the same month! Time is flying right by and I wish I could stop it! So we do have an apt tomorrow for another EEG to see if the jerks he is having show up as infantile spasms..... I'm extremely nervous ... But hopeful, the neuro got to see them at our last apt and even took the time to go over his EEG and see if it was showing the pattern of infantile spasms, which it wasn't so I'm hopeful that nothing has changed. So I will update when I get the results which will be a while based on last time.... But I think I will wait till the doctor calls and if I can stay offline. Lol

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!!!