EEG

So due to new technology I was able to obtain Aidens EEG results online, Which is awesome!!!! But I have found this is also a Huge mistake!!! I cannot decipher what the eeg finding are... So after 2 messages to the Dr and an email the nurse finally called me back. What it does show is that there is definite improvement in his EEG! It does still show abnormal and that there is activity that can cause seizures, but he isn't having silent seizures ( ones we cant see) and there has been improvement and even findings of normal brain activity!!!! what this all means ... Well the nurse stated that she has sent a note to the Dr to please comment on the findings and to compare the findings and she will call me back hopefully tomorrow... this is why getting the results online is horrible because of course its a horrible waiting game. But for now this is great news!!! and hopefully this will give our little miracle baby the chance to develop, to what point we still don't know but I continue to stick with our motto... We will not let anyone tell us what Aiden will not be able to do, but instead give him all the tools to do all he can.

I will of corse as soon as I have any more news update everyone on what all this good news means for squishy!!!

Also dont forget the benefit for Aiden is this Sunday!!! Me and squishy will be there so anyone wanting to love on him is more than welcome!!! Thank you in advance to everyone who has and continues to support me and my family in this crazy ride our lives have taken!!!

Nervous about our apt tomorrow

So we have an apt tomorrow morning for Aiden to have another eeg to see what Aidens brain waves are doung, if he is having any silent seizures. I am so nervous to see how the test is going to go first off .. he is not going to like them messing with him. And of corse I'm nervous to hear the results. Please pray for good news for our little squishy he deserves the very best... id love to hear that his brain is working normally , but I know this is not a possibility. Its just so hard, to know babies can be born with horrible things and even with heart and other problems, and can be fixed and have a chance at a "normal " life but the brain is so serious and cannot be replaced or "fixed" it jusgt sucks ...

So pray for my little man tomorrow! !!

OHSU apt

Soooo we finally had our apt at dornbeckers with the new neurologist. It went amazing!!!!

They spent 2 solid hrs with us and even brought in a pediatrician to also assess and collaborate. The diagnosis has not changed and I wont lie I've somewhat let myself sit in denial for the last 2 months that Aiden has been seizure free. So it was a little hard to have all the things you already know spoken out in the air. But the new neurologist is very very personable and said he is very happy with what we have done so far and how well Aiden is doing. Which is great to hear!

Some of the hard things to hear is that many of the things Aiden is not yet doing, and some of the things he is does show that things are not connecting correctly in the brain. He may have problems with his sight, basically the connection in his brain isn't processing the information he sees correctly. These are all things at this point I secretly know but have been in denial about.

At this point though he did say that we will do another eeg, and based on what that tells us about his brain pattern, if he's having any silent seizures were not seeing, and to put it bluntly, how messed up his brain pattern is we can start trying to work on getting that as normal as possble so Aiden can develop as much as possible. This to me is such amazing great news!!!! To not have the attitude that there's nothing more we can do, or to just stay stagnant with his treatment waiting for the seizures to come back.. my whole goal for my little squishy is give him everything in this world to do all that he is capable to do... and I finally feel like his doctor is thinking ahead and helping me to accomplish this. He also referred us to the ohsu therapy program so maby we can get him some more therapy or maby even more specialized therapy.

So although its still a hard thing to deal with I am thankful we are making some progress! And with as happy as little squishy is with his smiles and coos it just makes my every day and I am thankful for that and can't wait to see what else he's going to do....

Getting so big

Part of our therapy is trying to get him strengthening his neck and turning his head around he's doing so good!

Some days its great to watch every little progress we make but its hard to see sometimes how far behind he is... and with the other kids how much you take for granted ... we also are working at getting him to look and watch an object....

August 19

So my mind and heart has been filled with such happiness and sadness all at the same time. There is a family right here in Vancouver that had a beautiful little girl who was diagnosed with the same thing Aiden has, unfortunately for them she struggled much more and passed away the other day. Please pray for healing for this family .....

It breaks my heart and puts me in such fear that this may someday be our road. The thing with ths horrible diagnosis is that things can change so quickly, and although Aiden is doing amazing that can change so quickly. So it is always like a big weight on my shoulders and mind

On a happier note it is just amazing how good Aiden is doing! Our days filled with crying have changed to some crying but hours of him awake and smiling and cooing like crazy! It makes it hard to get anything done! Lol I just can't miss a coo or smile! Also therapy is going pretty well he's tolerating it more and is starting to get stronger so I pray he continues to be seizure free and we can continue seeing him do all kinds of things!!!

So please again pray for the family that lost theit beautiful angel so they can heal from this horrible loss, they are in my thought ....

Our first captured smile!

My little man is getting so big! He's really starting to smile and coo and it is the most amazing thing ever! Just 3 short months ago I wasn't sure if we would ever get to see or hear those things. Every day he amazes me.

We started therapy Wednesday and he protested a little, but also smiled for the lady ... I look forward now every week to seeing what he's gonna do!

So there is a video of all the wonderful kids from the ohtahara support group, aidenj is one of them and it is the most amazing thing to see all theseg sweet kids!

https://sites.google.com/a/ohtahara.org/ohtahara2/video-library

Check it out andg bring awareness to this syndrome

Small update

So things r going pretty well... Aiden is still seizure free!!!! Thank god!!! Its amazing he is starting to get excited and kick his legs and coo and it makes my whole day!!! Its great to get to talk to him and have hgim react!!! I am so very very excited to start his therapy but am nervous to see how its gon a work... with his fussiness and crying its gonna be difficult to get anything done...

So he's still having issues w pooping, throwing up and crying. The dr says he has colic... we are going to try soy formula to see if that helps with the trowing up... I am hoping and hoping this will correct the problem.

Other than that he's doing amazing and I thank god every moment we are seizure free! !!

He is also growing like a weed!!! He is officially in 6 m old clothing and about to grow out of them! His outfit from the forth of july is already to small!