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!