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!

Therapy

So Aiden had his evaluation today and it was pretty much as I had thought... in most areas he's testing at 1 month old so he's about 2 months behind. It is truly amazing how far we have come because before this would have crippled me. But I have no other choice but to be optomistic, 2 months is easily made up, and with him being seizure free I totally think this tis possible especially with the little steps he is already making! So next is to figure out the puking and fussiness and crying so we can actually get things accomplished in therapy. We could be starting therapy within the next 2 weeks!

God works in such mysterious ways!

Its been a rough couple of days filled with a baby that can't be comforted, and being puked on several times a day. And having the realization that my dreams for life will now not be possible.. then in a moment that my little squishy is finally somewhat content he coos and I'm reminded it is the little moments that can change everything. Such a small thing, many times taken for granted but for us and our special squishy one little step to cross off the list of "will never happen" its just so amazing!

Quick update

So things are going pretty well, we have been off the prednisone and our crankiness is much better but not gone... since we've been off the prednisone we had a total of 5 seizures but since that week we havnt had any! Aidens been awake and getting so big! He is a wooping 17lbs and wearing 6 month old clothing!!! We've also started a new thing were I puke on mom! Not quite sure what causing it but its not fun... I swear I have trippled the laundry because its a huge puke that comes out his nose and just pours out... the dr however isn't concered since he's still gaining weight...

Next week we have one of our therapy evaluations and I'm curious to see where he scores, but we already know he's probably at least a month plus behind being as he really spent his first month sleeping.

Other than that we have a month off of softball, so we have been having a garage sale, weather pending. So that is taking up much of our time ...

I will update again after our therapy appointment