Thursday, July 2, 2009

Following that last post has been kind of tricky for me. In a way, I thought it could be educational. You know, to either compare notes...or to see first hand what I've been trying to describe for months. On the other hand, I haven't really wanted to post since. It almost felt like I did something wrong. Like I was putting him on display or something. I've never thought that when I see similar videos of other kids. I guess it just strikes a funky chord when it's my baby. Like that should be private. But, I'd like it maybe help someone I'm going to leave it up.

Plus, I dove head first into a slideshow project...that I've been working on for over a year (since Austin was six months old). I've been through three different programs working on it. Either I can't get it the way I want it...or I can't get it successfully saved. One time, I actually got it finished (forgot to save my changes) and my computer shut down. I don't think I attempted to work on it again for six more months. Anyway, now, after trying yet another program, I have it completely perfect...and I can't save it to my computer...or to a disc...or to a DVD. I'm at a total loss here!

Thankfully, it's saved as a project, so maybe I can get my mom over here to help me! She's always rescuing me when it comes to computer glitches, etc.!!

In Austin news...

We continue to tread water here. Nothing has changed. Klonopin does not look promising. I've seen several of those face first dives...two a day maybe. That is obviously not good. He lands sprawled out on his belly...even gets red marks through his helmet. It leaves him confused...and crying. Which ultimately leads to me tightening up the Austin freedom leash...and so forth.
Clusters are still a part of everyday. I'm finally starting get a good handle on predicting them. Like a lot of kids, he almost always has one when he wakes. That's pretty much a given. Now, I'm noticing that he will almost always have one in his high chair. Rarely fails. I don't get that at all. Then there's the weirdly timed ones...the ones that just come out of nowhere. I know that when he suddenly gets's coming over him. He's finally starting to sit down while he's having them too (most of the time). It's weird though. If he has something in his hand, he'll get extremely focused on it. Manipulating it. Or functioning it. If he's empty handed, he'll just rub the carpet (or me) really he's seeking some sort of stimulation. This is definitely different for him. He used to just blankly stare off (still does on occasion). Anyway...

Just trying to keep moving forward...which is tough when I know there are so many things that are holding us back.

I hope everyone has a great 4th of July weekend! We are planning an outing on the lake (YEAH!) for Friday (not even attempting Saturday!). Providing that there are no more hiccups getting the boat ready to go!


blogzilly said...

I don't think you should feel weird about the all. Now granted, I tend to put everything out there and probably could learn a thing or too about restraint, so maybe I am not the best advice giver.

But I think the more we all share, the better all the kids will be. Maybe not even ours, but future people will find info quicker and more easily, and there will be data a flowing.

Sucks about the continued falls...I hate hearing about that. Really do.

Sophie's Story by Elaine said...

You sound just like me when I was putting together Sophie's first year montage. Took me FOREVER and several programs. I haven't tried it again since.

I know what you mean about the display thing. It's hard but yet it is good for other parents trying to navigate through IS to see.

I know I've said this a million times over but Austin reminds me so much of Sophie. She use to have drop seizures in her high chair. Truly SUCKS. Makes trying to have a decent meal together hard.

I hope you have a great 4th weekend. Enjoy the lake.

baby trevor's mommy said...

It's weird for me...because somehow posting videos of Trevy's seizures feel so "right". Like it's just right for me. But when my brother & his family were in town last felt so "wrong". Like Trevy has on display. And I was uncomfortable every single minute of the visit.
I've actually been self analyzing all day. And I think I've boiled it down to this. When I post videos of Trevy's seizures...the people that are most likely to see them are those whose lives have been touched by seizures. And they get it. And feel it. Deeply. Like me. It even bothers me less when we're in public and Trevy has a cluster. Because nonbody really notices. And I'm okay with that. But somehow...when I'm around people (like family/friends/people who I cross paths with often) that I feel should notice...and don't. Somehow that's what feels "wrong". It's probably totally a personal issue...that I need to deal with. I don't know. But I understand what you're saying...just from a different angle.

Re: Austin's behaviour during clusters. Trevor used to do the staring thing too. And then I noticed lip smacking pre-cluster. And for a long time now he does what I call "picking". He'll pull at my clothing...his clothing...rub the carpet...or continuously rub whatever is in his hands. If he has nothing in his hands then he'll pull at his own fingers. Over and over and over and over again. A long time ago...after reading about Complex Partials I became convinced that some of Trevy's seizures are Complex Partial. The EEG has never given a clear picture. But when I describe everything to Dr. Neuro...she really can't argue with my case. And I think the only real reason why I hold onto because I feel like it's just one more flag that Trevor has foci. And if he has foci then it could mean surgery is an option. And we all know I'm not lettin' go of that ticket any time soon! *smile*

Anyway...I thought you might find it interesting that Trevor has similar actions during his clusters.

I'm sorry sweetie. I hate clusters. And I can't imagine how hard it is on your heart to be dealing with the falls as well. I wish you could just move up here right now...and let me at least keep you company. And hug you and your little man!


Colby said...

I for one am SO glad to see you parents post your seizure videos...That is actually what got me connected to these blogs in the first place! Dummy me, I had never thought of anyone writing about their children...Probably because blogging wasn't INVENTED 24years ago! But I typed in "drop seizures" into You Tube one day, and "Voila!!!" It has been SUCH a blessing to me over these past 4 months! You ALL are a blessing to me...

Now, back to the videos, it is GOOD for us to see the little (or big) differences and similarities in these seizures...It has been such an education for me, even though I have seen many a seizuring child throughout Colby's school years....But not I.S. babies....

Actually, I am trying to get a video of Colby together for y'all to see...I have part of it on a video tape and part on my brand new digital camera, so I have got to get both transferred somehow...Maybe the camera footage tacked on to the videotape, then transfer that to a DVD, then onto You Tube for y'all to watch? (I am SO non-tech!!!)

Anyway, I think it was a GREAT post...Try to put those doubts away! Thank you for doing it....

Try and have a good holiday weekend!


JSmith5780 said...

Incase you are still having video issues... I use One True Media online. I find it fairly easy. Even the free version has lot so flittle fun things you can add in. PLus it's got lots of music already uploaded. Or you can pay to upgrade, I think $40/year and you have lots of fun options. Then you can post online or download in high quality form and burn to a dvd. On my blog, go to Feb 7 or Sept 2 and see the kids videos, just to give you an idea.