To Help You Understand....& to Show Off ;)

Well it is official - the snow has arrived!! It leaves me feeling even more house bound than I already am! So maybe this means I will have a tad bit more time to post some blogs?

I wanted to post some videos, especially for those who haven't had a chance to meet little Ty yet. This way you can get a little taste of how cute he is in person - although videos and pictures don't do him justice!

Some of the videos show normal/typical baby movement - the boys just hanging out! Some of the videos show Ty's seizures/movements. I am posting these so people can better understand...so when I talk about his seizures people have a better idea of what I mean. There are also quite a few moms who have children with similar medical conditions who have asked to see his movements, and it may help some other moms out there to see what we deal with on a daily basis.

But I also want to stress that Ty's seizures/spasms do not define him. They are not WHO he is. They are only a part of him. I don't like to exploit these nasty things - but I really want people to get a better idea of what Ty goes through, and also Aidan (since both experience the same seizures, although Aidan's are more pronounced and frequent). You can also go back and view some videos of Aidan's seizures - they are in January and February blogs from this year.

Ty - 6 Days Old
In this one both boys are just waking up (4 am!) and both are waking up hungry!!! Aidan is stretching and slowly waking himself up, and Ty is next to him getting MAD and fussy because he wants his food now! Put down the camera Mommy ha! (Typical movements!)


Ty - 8 Days Old
Here Ty is sleeping. You will be able to see little facial tics, or him tensing up in his face. When this happens it may look like he is sleeping, and he is, but actually he is not getting "restful" sleep. Aidan is the same way. Over time though Aidan got more and more restful sleep and would stop moving while sleeping.


Daddy, Aidan (14 months) and Ty (9 days)
Daddy holding both his boys. Ty tries to suck his thumb towards the end because he is hungry (go figure!) and if you look closely you can see two of Aidan's seizures - he turns to the side and pulls his arm up to his face. They are quick ones! And when I say mention that they are having a rough time (on Facebook or other blogs) - it means the boys are doing that movement/spasm back to back - sometimes in their sleep, often for MANY hours.


Ty - 9 Days Old
Ty is pretty content here! You can still notice a rhythmic movement of his head, but it doesn't seem to bother him!


Ty - 14 Days Old
This is the common seizure/movement that both the boys have. Pulling the hand up towards the face, and turning the head towards the hand. And like I said above, Aidan used to do it in his sleep, too, but now he sleeps peacefully. When Ty is doing it in his sleep, he is actually not getting good rest.


Ty - 15 Days Old
Normal, typical baby movements from Ty! He is even a little fussy I'd have to say! He's getting hungry again!


Like I said earlier, I don't like to post pictures of my boys and their seizures, but at the same time I want people to understand what I mean when I mention them. Ty's movements, when they are very pronounced, cause him problems when he is nursing. His head jerks to the side and doesn't stay latched, and he gets very frustrated. I try my best to keep him on, but it is almost impossible. Meanwhile, he is HUNGRY and just wants to eat but the dang spasms won't let him! It is exhausting, and this is what most of my nights consist of - me desperately trying to keep Ty latched and fed. We fight the jerks, and usually prevail. It just takes a while. Once Ty does get latched and comfortable, the movements usually stop or slow down.

With Aidan, I know what his triggers are. I am pretty good at stopping them from becoming non-stop clusters. I am still trying to figure out what Ty's triggers are. It is a learning process, and it takes A LOT of patience. But I know things will get better - I know firsthand because I have seen how far Aidan has come. We have adapted so well to his seizures and movements. We know we can't change him or do much about them, so we have learned to adapt the best we can!

Once again, I am posting this so people can better understand our boys - although these videos and their movements are just a small part of who they are! I hope these videos help other Mommies out there who are in similar situations! And as always, feel free to ask me anything!

I hope everyone is staying warm, and staying healthy! Aidan is currently fighting a little flu bug, but the rest of us seem to be doing well so far. We are praying for healthy days!! With this early flu season and now SNOW, we have an inkling that it is going to be a long winter!