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May 14th, 2008, 08:24 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
Welcome to Jm and the VI children forum. I am glad you found us, and hope we can provide some answers, comfort, and support.

The most common reason that children with some sort of DVM or other VI diagnosis get the MRI's done is to make sure that the optic centers in the brain are properly formed and to rule out any other brain structure anomaly that may be causing the DVM. It is very nerve racking and frustrating, but well worth it in the long run. I don't personally have experience with DVM, but my daughter has been visually impaired since birth and she is now 6 years old. We have run the gamet for just about all of the vision and neurological tests available, so please feel free to ask any questions you may have. The ladies here are wonderful and very understanding.

Oh, and I am Jennifer, mommy to Alexis (6 yo) who was born with septo-optic dysplasia; she has severely underdeveloped optic nerves, pituitary deficiencies, and brain structure abnormalities. I hope you enjoy posting with us.
<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
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May 14th, 2008, 02:22 PM
samylaine's Avatar Super Mommy
Join Date: Jul 2006
Posts: 534
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May 14th, 2008, 04:00 PM
Join Date: May 2008
Posts: 2
Thank you,

We have already had a CT scan and an EEG and PH Probe so hopefully this will be our last big test. We had his pre op today and met with the anithesiologist (sp?) and she feels confident that he will do fine but did mention that he may have to stay over night to be monitored due to his history of apnea episodes. I really feel that in the past month he has began to make progress. He seems to make eye contact at times and even this morning he was crying in his crib and I quietly walked into his room and he stopped crying and smiled. Almost made me cry! He does not track objects and his tracking people seems to come and go but overall doing better than a month ago. I do worry that he is not lifting his head when on his stomach and wonder if this is indicating further problems but he does so good in so many other areas. I am glad to have found you guys because most people I try and explain what is going on with him have no idea of what I'm talking about. Thank you for the warm welcome.
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May 15th, 2008, 08:23 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
Well I am glad you found us too. I am so glad that he has been making great progress over the last month. Just a thought about the head lifting. He may not be lifting his head because of the VI. Depending on how much his vision has matured, he may not see very far, and without being able to see things farther out, there is no motivation to explore the surroundings. If he has a favorite toy, I would use that to get him to interact more and promote head lifting. With the limitations in their vision, you have to find other ways to motivate them to interact and explore their environment. For us we used lighted (she has some vision) and musical toys. She would become very curious and excited about the lighted musical toys and that would motivate her to look for them.

good luck with the MRI, keeping my fingers crossed that he doesn't need to stay overnight. Let us know how everyting goes.
<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
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