Guest guest Posted July 7, 2011 Report Share Posted July 7, 2011 Hello, My son, Noah, is now six weeks old and have been diagnosed with bilateral perisylvian polymicrogyria, as well as band heterotopia. He spent the first month in the NICU after being born as he was not able to coordinate his suck and swallow, and was found to have low muscle tone. He has had a g tube for about the past two weeks, and is now home. We are so excited to have him home, as we feel that he will do better in our care. He sees an occupational therapist for the feeding difficulties once a week, and I try my best to do all the exercises she sets forth throughout the week. I have been in contact with the Resource Center, and hope that he will be evaluated for the early intervention services within the next two weeks. Any information as to what to expect and what steps to take will really be much appreciated. The neurologist is not telling us what we can expect to see with our baby, only that time will tell. It is just really difficult given the wide range of issues that may arise. Thank you all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2011 Report Share Posted July 8, 2011 Hi I am so sorry to hear about your son Noah, it is definetly hard to have everything change so suddenly and be faced with such an uncertain future. My girl is 10mths now and has left side PG, she presented with seizures at 11weeks and is on various meds to help control them. She is not holding her head up on her own yet, sees an OT regularly and has many ongoing issues.She is my life and I love her very much and enjoy every minute with her, it makes me smile everytime she achieves something even if its small.. My advice to you is take one day at a time and enjoy your little boy, they are a gift, celebrate every milestone as they happen, they will be different from other children but that makes them even more special and loveable. The docs don't really tell you what to expect, I think that is because every child with this condition writes their own story and it varies alot. Know that you are not alone, write anytime you need to talk. I have found this messageboard very helpful and people are so nice and know what you are going through. Where abouts are you from? All the best Kat ________________________________ To: polymicrogyria Sent: Friday, 8 July 2011 9:24 AM Subject: Intro  Hello, My son, Noah, is now six weeks old and have been diagnosed with bilateral perisylvian polymicrogyria, as well as band heterotopia. He spent the first month in the NICU after being born as he was not able to coordinate his suck and swallow, and was found to have low muscle tone. He has had a g tube for about the past two weeks, and is now home. We are so excited to have him home, as we feel that he will do better in our care. He sees an occupational therapist for the feeding difficulties once a week, and I try my best to do all the exercises she sets forth throughout the week. I have been in contact with the Resource Center, and hope that he will be evaluated for the early intervention services within the next two weeks. Any information as to what to expect and what steps to take will really be much appreciated. The neurologist is not telling us what we can expect to see with our baby, only that time will tell. It is just really difficult given the wide range of issues that may arise. Thank you all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2011 Report Share Posted July 8, 2011 Hi . I know how overwhelming this can be. My son was also diagnosed with bilateral perisylvian polymicrogyria in the NICU. Overtime, he has developed and progressed, but of course, at a MUCH slower rate than his peers. Please feel free to contact me with any questions because we are also in Los Angeles. We are VERY happy with our neurologist and our PT, OT, etc. The best way to reach me is rsmullur@.... Hang in there because it does get a little better everyday. -Rashmi > > > > Hi > > > > I am so sorry to hear about your son Noah, it is definetly hard to have everything change so suddenly and be faced with such an uncertain future. My girl is 10mths now and has left side PG, she presented with seizures at 11weeks and is on various meds to help control them. She is not holding her head up on her own yet, sees an OT regularly and has many ongoing issues.She is my life and I love her very much and enjoy every minute with her, it makes me smile everytime she achieves something even if its small.. > > > > My advice to you is take one day at a time and enjoy your little boy, they are a gift, celebrate every milestone as they happen, they will be different from other children but that makes them even more special and loveable. > > > > > > The docs don't really tell you what to expect, I think that is because every child with this condition writes their own story and it varies alot. Know that you are not alone, write anytime you need to talk. > > > > I have found this messageboard very helpful and people are so nice and know what you are going through. > > > > > > Where abouts are you from? > > All the best > > Kat > > > > > > > > ________________________________ > > From: V <quetzalmonica@> > > To: polymicrogyria > > Sent: Friday, 8 July 2011 9:24 AM > > Subject: Intro > > > > > > Â > > Hello, > > > > My son, Noah, is now six weeks old and have been diagnosed with bilateral perisylvian polymicrogyria, as well as band heterotopia. > > > > He spent the first month in the NICU after being born as he was not able to coordinate his suck and swallow, and was found to have low muscle tone. He has had a g tube for about the past two weeks, and is now home. We are so excited to have him home, as we feel that he will do better in our care. > > > > He sees an occupational therapist for the feeding difficulties once a week, and I try my best to do all the exercises she sets forth throughout the week. I have been in contact with the Resource Center, and hope that he will be evaluated for the early intervention services within the next two weeks. > > > > Any information as to what to expect and what steps to take will really be much appreciated. The neurologist is not telling us what we can expect to see with our baby, only that time will tell. It is just really difficult given the wide range of issues that may arise. > > > > Thank you all, > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2011 Report Share Posted July 8, 2011 Sounds like you have a great approach. Smiles are priceless for sure. All the best and like I say if you need an ear we are here. Its great you know early and sounds like you have a good medical team in LA, which is great. I am in New Zealand, we have a good medical here too, am very lucky. All the best. ________________________________ To: polymicrogyria Sent: Saturday, 9 July 2011 10:39 AM Subject: Re: Intro  Kat, Thank you for your response. I am doing my best to just take everything one day at a time, and enjoy all of the time that I get to spend with Noah. He is such a sweet baby, and has started to smile. I am just hopeful that he continues to grow and improve with time. As for us, we live in Los Angeles, and consider ourselves very lucky that he was diagnosed so early. We are definitely doing our best to take advantage of this time, and will try to do as much as possible for him. > > Hi > > I am so sorry to hear about your son Noah, it is definetly hard to have everything change so suddenly and be faced with such an uncertain future. My girl is 10mths now and has left side PG, she presented with seizures at 11weeks and is on various meds to help control them. She is not holding her head up on her own yet, sees an OT regularly and has many ongoing issues.She is my life and I love her very much and enjoy every minute with her, it makes me smile everytime she achieves something even if its small.. > > My advice to you is take one day at a time and enjoy your little boy, they are a gift, celebrate every milestone as they happen, they will be different from other children but that makes them even more special and loveable. > > > The docs don't really tell you what to expect, I think that is because every child with this condition writes their own story and it varies alot. Know that you are not alone, write anytime you need to talk. > > I have found this messageboard very helpful and people are so nice and know what you are going through. > > > Where abouts are you from? > All the best > Kat > > > > ________________________________ > > To: polymicrogyria > Sent: Friday, 8 July 2011 9:24 AM > Subject: Intro > > >  > Hello, > > My son, Noah, is now six weeks old and have been diagnosed with bilateral perisylvian polymicrogyria, as well as band heterotopia. > > He spent the first month in the NICU after being born as he was not able to coordinate his suck and swallow, and was found to have low muscle tone. He has had a g tube for about the past two weeks, and is now home. We are so excited to have him home, as we feel that he will do better in our care. > > He sees an occupational therapist for the feeding difficulties once a week, and I try my best to do all the exercises she sets forth throughout the week. I have been in contact with the Resource Center, and hope that he will be evaluated for the early intervention services within the next two weeks. > > Any information as to what to expect and what steps to take will really be much appreciated. The neurologist is not telling us what we can expect to see with our baby, only that time will tell. It is just really difficult given the wide range of issues that may arise. > > Thank you all, > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2011 Report Share Posted July 9, 2011 Welcome . I'm not a strong contributor to this site but I know where you are at this point. My son is almost 16 months and we got the news when he was about your sons age. It's a bomb, that's for sure... at least for us it was. Our son, like yours, was in the NICU but for 8 1/2 weeks. He had many problems, primarily lungs. He also couldn't suck/swallow enough to sustain so he had a gtube placed. Which has been a life saver for meds but he now eats like a champ! The list was long for us and we got the same thing from our neuro. Just have to see how it goes. We take it day by day. Ian has OT, PT and now starting speech. We also see an Osteopath. He is doing well, quite delayed in gross motor (just beginning to military crawl but sitting up really strong) and a bit in speech. He is hitting his milestones eventually. He's the most amazing kid. Has spent about a third or half of his life in the hospital for lung issues. But so happy and sweet and determined! I thought I'd share a poem that another friend has on her blog. I didn't read it until this year but I thought it fitting: -------------------- " Welcome to Holland " By Perl Kingsley, 1987. All rights reserved. I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo . The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, " Welcome to Holland. " " Holland?!? " you say. " What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. " But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say " Yes, that's where I was supposed to go. That's what I had planned. " And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. -------------------- I wish you and your little Noah all the best. Please let me know if you ever have a question, would like to just chat, or maybe let off some steam. You can email me direct at me@... > > Hello, > > My son, Noah, is now six weeks old and have been diagnosed with bilateral perisylvian polymicrogyria, as well as band heterotopia. > > He spent the first month in the NICU after being born as he was not able to coordinate his suck and swallow, and was found to have low muscle tone. He has had a g tube for about the past two weeks, and is now home. We are so excited to have him home, as we feel that he will do better in our care. > > He sees an occupational therapist for the feeding difficulties once a week, and I try my best to do all the exercises she sets forth throughout the week. I have been in contact with the Resource Center, and hope that he will be evaluated for the early intervention services within the next two weeks. > > Any information as to what to expect and what steps to take will really be much appreciated. The neurologist is not telling us what we can expect to see with our baby, only that time will tell. It is just really difficult given the wide range of issues that may arise. > > Thank you all, > > > Quote Link to comment Share on other sites More sharing options...
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