tag:blogger.com,1999:blog-1738070699265994888.post3281289657071013457..comments2024-02-19T02:07:53.121-08:00Comments on Agenesis Corpus Callosum: Wait and See.......Sandie-Matthew's Momhttp://www.blogger.com/profile/11713990436763822654noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-1738070699265994888.post-59442487287328735192009-05-12T14:24:00.000-07:002009-05-12T14:24:00.000-07:00Trecia,
Thank you so much for sharing your very ...Trecia, <br /><br />Thank you so much for sharing your very real feelings. <br /><br />I know that coming to terms with receiving the diagnosis of ACC is different for each person. Everyone has to figure out and deal with it in their own, unique way.<br /><br />When my child, Matthew, was first diagnosed I wanted information one day and then wanted to shut it all out the next. I thought I wanted to read and e-mail with a parent or two back then that I found online but when I began to see the intense problems some children were facing I couldn't deal with it. I had to take it one step at a time with Matthew while continuing to work with his team of doctors and specialists.<br /><br />It was also suspected in utero that Matthew may possibly have hydrocephalus because a ventricle in his brain was what the doctors called normal to borderline in terms of being enlarged. I have since learned from talking with other parents who have a child with ACC that that very same thing has been suspected with their children as well. Some babies and children with ACC do end up having a diagnosis of hydrocephalus.<br /><br />I learned from Matthew's doctors that while sometimes babies with ACC do have hydrocephalus they can also appear to have it, while in utero, because of the slightly enlarged ventricle size. <br /><br />It was explained to me by Matthew's doctors that when the corpus callosum is missing there is extra space in the brain as a result and that the ventricles can become slightly enlarged due to that extra space as if trying to fill in the space. It doesn't always mean it's hydrocephalus though and I'm so glad it wasn't in Joel's case. :) <br /><br />Like Joel, Matthew was (and still is) happy all the time. He doesn't cry...and doesn't even seem to understand it when he sees another child cry. He has been this way since he was very little. He would see a child crying and watch with curiousity, then turn to look at me as if to say...huh? I would try to explain it to him and why the child was crying but he didn't seem to understand it. I don't think he understands even today when someone cries. Actually, if he ever sees or hears me cry, he will start laughing. It's kind of funny though because I will be crying but kind of laughing a little. <br /><br />If Matthew ever cries, I know that something is VERY wrong.<br /><br />He didn't really cry as a baby either. Well, except for when he had colic and then he grew out of that and just did NOT cry.<br /><br />Thank you again for your openess and willingness to share. :) <br /><br />SandieSandie-Matthew's Momhttps://www.blogger.com/profile/11713990436763822654noreply@blogger.comtag:blogger.com,1999:blog-1738070699265994888.post-18049418565703015472009-05-12T07:56:00.000-07:002009-05-12T07:56:00.000-07:00Oh yes "wait and see" we've heard that since Joel ...Oh yes "wait and see" we've heard that since Joel was first diagnosed at 16 wks gestation with hydrocephalus. That didn't come to pass. "wait and see" when they told us that Joels head would be too big for a normal delivery and he'd have to be taken early, wrong again normal vag delivery and only 6lb 11 oz. <br /><br />Now we are in the "wait and see" stage for developmental milestones. My daughter Joels Mommy is much more relaxed about the "wait and sees" she's of the opinion that we worried ourselves sick through almost her whole pregnancy and Joels birth and most of that was for naught. She feels like he'll do just fine and we'll cross each bridge as we come to it and she just enjoys his every moment! <br /><br />I on the other hand am a fretter and a worrior from way back and I have a little voice in the back of my head that's saying to me "it's not "normal" that Joel NEVER cries, it's not "normal" that he is so very happy ALL the time, he should be babbling, crawling, sitting independantly yada yada yada" <br /><br />So anyway a novel as usual but thank you for sharing your eventual acceptance of the "wait and see" and showing us that if we are patient our kids will show us just what they are capable of!Treciahttps://www.blogger.com/profile/02103178683453167264noreply@blogger.com