Just wanted to give a quick update and ask for prayers. Dawson is still doing really good but the seizures are getting more numerous and harder. When the seizures returned weeks ago, they were so mild that there is hardly any way you could see them. Of course WE could, but if you didn't know what to look for you would have missed them completely. Unfortunately now that is not the case. He is back to having seizures almost every time he wakes during the day or night.
I think he can feel them coming because when he wakes up he rolls up onto his stomach in kind of a ball, digs at his eyes, and then he will start to have seizures. This morning he and i woke up at the same time and he was already in " seizure position" and we were kind of laying face to face. It broke my heart as I laid there and watched him have seizure after seizure. I quit counting at 30 because it was just too painful for me to watch. I couldn't help but wonder, What is he going through? Do they hurt? how does it feel? and of course the proverbial WHY?????
So we once again ask for prayer as we seek seizure freedom for this guy. We did talk to his neuro today and right now the order is to continue going up on his Lamictal and stay the same on the Topamax for now.
The good news is that he continues to do really well. He has been in a really great mood all week. He is eating really well. He runs around the house yelling and laughing and talking up a storm. We just really really need these stupid seizures to go away!!!
Our love to all
Jeff and Allison
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I wish I had the answers for you guys on the why's,I really do.There is a handful of us that began this journey together,be it miles apart and because of that bond,when you hurt,we hurt.I do know,that when I "met" you guys,well over a year ago,you were filled with such faith in His plan and I know now,that same faith will see you through this time.Our prayers remain the same:seizure freedom.once again for Dawson.Stay strong guy.You will find your way again.Dawson will find his way through this again.
It's just awful to watch your child have the seizures. There is very little quite like it. Hope you guys can get through this and find soem relief soon.
that broke my heart to read that! i don't count them at all anymore...it's just WAY to painful. pretty much if he has one cluster the day is blown. guess that comes from dealing with this for almost 2.5 years now. i soo want all of these kids to be seizure free!!! and i hope that i learn the WHY of it all before my dying day. hang in there you guys, you will be in our prayers...he can beat this again!!
Oh guys...I am just SO sorry. I hate that I can relate on such an intimate level.
I think the only positive I can give you...is that I really think it's a good thing that they can sense the seizures are coming. It helps us know how to care for them better...and through them. I'm convinced that Trevor would be sporting stitches if he didn't always give me ques that they were coming. Actually...that's partly why I'm SO curious about the whole seizure alert dog thing too.
Anyway...I'm just so so sorry. And praying hard.
xoxo
...danielle
I'm sorry to hear Dawson is having more! It breaks my heart...it's just not right. Not right for any of these kids. I am praying for his seizure freedom again!
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