tag:blogger.com,1999:blog-2584570468185542765.post163219213582319823..comments2022-03-27T06:30:56.890-05:00Comments on Austin's IS Journey: One year ago...Hollihttp://www.blogger.com/profile/00535016211470087504noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-2584570468185542765.post-58155036044532772812009-05-19T14:37:00.000-05:002009-05-19T14:37:00.000-05:00Danielle -It's strange isn't it? I can almost rem...Danielle -It's strange isn't it? I can almost remember that week in it's entirety...but I can't remember what I wore yesterday! Times like these, I'm swollowed up by all those memories, but like you said, I'm growing through it. We're trucking on...a few (emotional) setbacks along the way, but still going forward! <br /><br />Jamie -I'm okay! I really am! It's just been a crazy week...lots and lots going through my head. I'm grateful everyday for Austin's progress, but just like you, scared of things I may never see. Fearful, but still hopeful! <br /><br />Jen -I've still got a lot of hope. I guess it doesn't always show though. I'm getting all of this out of my system!! It's been building up for a while. I'll blow it off and keep on going! Btw, I like the ABC logo!Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-44710880606606404252009-05-19T13:37:00.000-05:002009-05-19T13:37:00.000-05:00We all know that lost hopeless feeling. All is can...We all know that lost hopeless feeling. All is can say 5.5 years later is it does get easier.<br /><br />I hope Clonopin helps Austin.JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-23299910882966813362009-05-19T13:13:00.000-05:002009-05-19T13:13:00.000-05:00Ok Girlfriend you are going nuts..breathe....breat...Ok Girlfriend you are going nuts..breathe....breathe..I very much remember going into the neuro with madies for her first of many EEGs with the feeling of "yeah, seizures? no way!" and with the infantile spasm diagnosis that we received I was in shock..talk about numb...I can tell the story a million times how a week later we were pumping her with ACTH and how we thought that was the miracle cure...then Spasms returned I just broke down...<br />I just try to remeber as well that EEG that told us the spasms were gone and when we finally found a good med that gave her the most fredom from her seizures that we had ever seen in a YEAR...<br />Gosh all this can bring me to tears...Its insane how our kids have to be on SOooo many drugs...I hate it hate it! Madie is still really delayed...and i look at Austin and say he is doing so many good things...standing, feeding himself...all things that madie has to work on...that I fear each day I will never see her do!!<br />keep your chin up...HANG in there! take a spa break...take a wine break....(my favorite) Our kids can handle more than you think!!<br />Clonopin?? Well Madie is a better gal off that stuff...BUT its been known to work so I am not here to discourage you from it by no means!<br />((((( HUGS)))))<br />OH madie is on Her Valproric Acid-Depakote and Zonegran. :)Jamiehttps://www.blogger.com/profile/08806816819294256310noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-44332144471865668802009-05-19T13:09:00.000-05:002009-05-19T13:09:00.000-05:00In many ways...I remember those days of Trev's...In many ways...I remember those days of Trev's diagnosis to treatment...in more detail than I do anything else in my life. More so than my wedding. The kids births. Toby losing his first tooth. <br /><br />I remember frantically calling the pedi ALL day...and finally saying I'm taking him to the ER before I got a call back.<br /><br />I remember the (stupid) EEG tech telling me that Trevor was going to fine...and in college someday like her daughter. Even as the head of neurology said we needed to see him immediately after the EEG. I wonder what she thinks when she sees us now? I still think potty words when I see her...<br /><br />I remember the pit in my stomach as we were giving him that first ACTH injection. <br /><br />It's all clear as day. <br /><br />I think it's normal & healthy for us to mourn that our children are "not right"... We have to be able to grieve that. And I'm SO darn sick of hearing people say they go through the same thing with their healthy children...could lose their healthy children at any moment...blah blah blah....grrrrrrrrrrr! I have two "healthy" children...and it IS NOT the same! I suppose it helps me to release the sadness. At least I can feel...and am not numb. <br /><br />I don't know...you know I suck at advice. I'm much better at being all gloomy & sad. *smile* <br /><br />I do know...that just like those first few months were crushing. We grew through it. Our hearts get stronger without us even knowing it. <br /><br />(((((((hugs)))))))))<br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.com