Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Welcome to the group, I am also fairly new to the group and my granddaughter is only 3 months old, so we are also playing the waiting game. This group has been a tremendous help to me, I hope you find it to be helpful to you also. God Bless you and your little one! > > Hi, I just joined the group. I have an infant that was diagnosed with polymicrogyria. We found out a few months ago so I've had some time to process and go through an emotional roller coaster. I was really happy to see this group and get connected with others going through the same thing. My baby is doing well so far. I guess the hardest part is the waiting game and the unknown. > I look forward to being involved and meeting others! > > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 I have tried to put all that sadness energy into positive plans to help Nisha achieve the most she can but that sad reality does come to surface sometimes less as she achieves more.Diane To: polymicrogyria From: hjlsanders@... Date: Tue, 10 Jan 2012 18:27:59 +0000 Subject: Re: Hi, New to the group Thanks! I'll definiately check out the FB group as well. It's nice to know there is support out there for something you don't hear about everyday. I haven't told most people, only immediate family. We needed time to process everything and weren't ready for all our friends and family to ask us questions. I could barely think about it without coming to tears. Now I try to look at it differently. I have a beautiful happy child that brings us so much joy! > > > > > > Hi, I just joined the group. I have an infant that was diagnosed with > > polymicrogyria. We found out a few months ago so I've had some time to > > process and go through an emotional roller coaster. I was really happy to > > see this group and get connected with others going through the same thing. > > My baby is doing well so far. I guess the hardest part is the waiting game > > and the unknown. > > > I look forward to being involved and meeting others! > > > > > > Thanks! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 While I don't know your exact circumstances, I feel as if I can totally understand. And everyday is different -- some are better than others. So glad you're finding the joy in the midst of the trials. If it's any constellation, the FB is " closed' and supposedly the posts are not visible to anyone but group members. The intention is for it to be a safe place for all members to share, learn and grow. Looking forward to seeing you there > > I have tried to put all that sadness energy into positive plans to help > Nisha achieve the most she can but that sad reality does come to surface > sometimes less as she achieves more.Diane > > To: polymicrogyria > From: hjlsanders@... > Date: Tue, 10 Jan 2012 18:27:59 +0000 > Subject: Re: Hi, New to the group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks! I'll definiately check out the FB group as well. It's nice to know > there is support out there for something you don't hear about everyday. I > haven't told most people, only immediate family. We needed time to process > everything and weren't ready for all our friends and family to ask us > questions. I could barely think about it without coming to tears. Now I try > to look at it differently. I have a beautiful happy child that brings us so > much joy! > > > > > > > > > > > > > > Hi, I just joined the group. I have an infant that was diagnosed with > > > > polymicrogyria. We found out a few months ago so I've had some time to > > > > process and go through an emotional roller coaster. I was really happy > to > > > > see this group and get connected with others going through the same > thing. > > > > My baby is doing well so far. I guess the hardest part is the waiting > game > > > > and the unknown. > > > > > I look forward to being involved and meeting others! > > > > > > > > > > Thanks! > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Hi and welcome. I dont really use the yahoo groups a lot but I wanted to say welcome. I have a baby girl..almost 6months old she has PMG..we found out when she was about 3weeks. Its been an adventure with lots of ups and downs for sure but I think we all learn how to handle things the best we can. My daughter also is super happy most of the time so I think the helps! Its is nice to have other parents to talk to though! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 I'm sure we all can remember those first days after diagnosis. I just always try to remain positive and optimistic. It's great to have this group since so many things you read are downright scary! Just some food for thought. My Emmalee is 2 1/2 now. We were told she will never walk or talk. She doesn't walk....she runs! And climbs and dances!!! So each child is different and while she doesn't talk we have hope. Seizures are few. She has other medical issues as well and is developmentally delayed but has made great strides in just the last 6 months. Cognitively she is amazing! Your best next step is early intervention. Getting started with therapy early is key to success. Feel free to contact me any time!! . Day or night! ~Jodi > While I don't know your exact circumstances, I feel as if I can totally > understand. And everyday is different -- some are better than others. So > glad you're finding the joy in the midst of the trials. If it's any > constellation, the FB is " closed' and supposedly the posts are not visible > to anyone but group members. The intention is for it to be a safe place for > all members to share, learn and grow. Looking forward to seeing you there > > > > > > > I have tried to put all that sadness energy into positive plans to help > > Nisha achieve the most she can but that sad reality does come to surface > > sometimes less as she achieves more.Diane > > > > To: polymicrogyria > > From: hjlsanders@... > > Date: Tue, 10 Jan 2012 18:27:59 +0000 > > Subject: Re: Hi, New to the group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks! I'll definiately check out the FB group as well. It's nice to know > > there is support out there for something you don't hear about everyday. I > > haven't told most people, only immediate family. We needed time to process > > everything and weren't ready for all our friends and family to ask us > > questions. I could barely think about it without coming to tears. Now I try > > to look at it differently. I have a beautiful happy child that brings us so > > much joy! > > > > > > > > > > > > > > > > > > > > > > Hi, I just joined the group. I have an infant that was diagnosed with > > > > > > polymicrogyria. We found out a few months ago so I've had some time to > > > > > > process and go through an emotional roller coaster. I was really happy > > to > > > > > > see this group and get connected with others going through the same > > thing. > > > > > > My baby is doing well so far. I guess the hardest part is the waiting > > game > > > > > > and the unknown. > > > > > > > I look forward to being involved and meeting others! > > > > > > > > > > > > > > Thanks! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 My daughter actually has a larger than normal head. We all have large heads in our family. Sent from my iPhone > > > My son also has a small head. When he was about 1.5 years old to age 2 it stopped growing and was considered microcephaly but then it grew another 2 cm and still has a small head but I don't think he is considered microcephaly anymore. > To: polymicrogyria > From: skrasyk@... > Date: Tue, 10 Jan 2012 19:49:44 +0000 > Subject: Re: Hi, New to the group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks, it is nice to know that it is a symptom of PMG. At two, is your daughter meeting all her milestones, sitting up, crawling, walking talking? > > > > > >>> > >>>> > >>> > >>>> Hi and welcome. I dont really use the yahoo groups a lot but I wanted to > >>> > >>>> say welcome. I have a baby girl..almost 6months old she has PMG..we found > >>> > >>>> out when she was about 3weeks. Its been an adventure with lots of ups and > >>> > >>>> downs for sure but I think we all learn how to handle things the best we > >>> > >>>> can. My daughter also is super happy most of the time so I think the helps! > >>> > >>>> Its is nice to have other parents to talk to though! > >>> > >>>> > >>> > >>>> > >>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 I actually have twin granddaughters and when you look at Brie, who has PMG and then look at Audrey, who does not, Audrey's head looks really large because Brie's is so small. They are both beautiful and the light of my life. > > > >>> > > > >>>> > > > >>> > > > >>>> Hi and welcome. I dont really use the yahoo groups a lot but I wanted to > > > >>> > > > >>>> say welcome. I have a baby girl..almost 6months old she has PMG..we found > > > >>> > > > >>>> out when she was about 3weeks. Its been an adventure with lots of ups and > > > >>> > > > >>>> downs for sure but I think we all learn how to handle things the best we > > > >>> > > > >>>> can. My daughter also is super happy most of the time so I think the helps! > > > >>> > > > >>>> Its is nice to have other parents to talk to though! > > > >>> > > > >>>> > > > >>> > > > >>>> > > > >>> > > > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 My son has bilateral frontoparietal PMG. He's almost 22 months old. His head is much larger than average(macrocephaly). He is walking and saying a few words and doing well overall. The waiting game is THE WORST. It gets easier, I think, as they get older and more determined in their movements and develop more of a personality. I still wish there was a magic ball out there that could answer all of our questions:) Have you started any therapies? I think it's key to try to start as early as possible with therapy. Our neuro was good about getting us set up with the right people to get started. Good luck with everything! Mel Rush > ** > > > > I actually have twin granddaughters and when you look at Brie, who has PMG > and then look at Audrey, who does not, Audrey's head looks really large > because Brie's is so small. They are both beautiful and the light of my > life. > > > > > > > > >>> > > > > > >>>> > > > > > >>> > > > > > >>>> Hi and welcome. I dont really use the yahoo groups a lot but I > wanted to > > > > > >>> > > > > > >>>> say welcome. I have a baby girl..almost 6months old she has PMG..we > found > > > > > >>> > > > > > >>>> out when she was about 3weeks. Its been an adventure with lots of > ups and > > > > > >>> > > > > > >>>> downs for sure but I think we all learn how to handle things the > best we > > > > > >>> > > > > > >>>> can. My daughter also is super happy most of the time so I think > the helps! > > > > > >>> > > > > > >>>> Its is nice to have other parents to talk to though! > > > > > >>> > > > > > >>>> > > > > > >>> > > > > > >>>> > > > > > >>> > > > > > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 My daughter had a normal sized head (if not a little large)! And HI!! Sent from my iPhone > The doctors have said that my granddaughters brain " stopped growing " . She has a small head (compared to most 3 months old). Does anyone know if that is part of the polymicogyria or a totally diffent diagnosis? She has been diagnosed with polymicrogyria. > > > > > > Hi and welcome. I dont really use the yahoo groups a lot but I wanted to > > say welcome. I have a baby girl..almost 6months old she has PMG..we found > > out when she was about 3weeks. Its been an adventure with lots of ups and > > downs for sure but I think we all learn how to handle things the best we > > can. My daughter also is super happy most of the time so I think the helps! > > Its is nice to have other parents to talk to though! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 I remember the first year. I was 20 and my daughter was 10 months old at the diagnosis (which was cerebral palsy - PMG wasn't even on the radar yet due to imaging technology). We had know something was " wrong " since she was 2 months. She never used her right hand but the doctors ignored us. She will be 15 March 1st. It's worth it. Every moment. I promise that even though you will walk through some horrible places, you will come through. My daughter has limitations, but they are minor and now that we've cured her epilepsy, she will lie on her own and even have children if she wants to. It's an amazing thing to watch them blow the doctors out of the water! Sent from my iPhone > Welcome! I remember the first few difficult months like they were > yesterday. Hang in there and give yourself time to adjust. Know that > everyone is here to support you and that things often turn out much better > than the picture the doctors may paint in the beginning. My Callie recently > turned two and is making great progress! Hopefully her story and others > here can provide encouragement and hope. > > ((hugs)) > > > Callie's story: > http://calliebloggie.blogspot.com/ > > > > > >> ** >> >> >> Hi, I just joined the group. I have an infant that was diagnosed with >> polymicrogyria. We found out a few months ago so I've had some time to >> process and go through an emotional roller coaster. I was really happy to >> see this group and get connected with others going through the same thing. >> My baby is doing well so far. I guess the hardest part is the waiting game >> and the unknown. >> I look forward to being involved and meeting others! >> >> Thanks! >> >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 My little one also has a very large head. He also has ventriculomegaly and is monitored for hydrocephalus. So far so good! We have started PT, and just got into the early start program as well. > > > > > > > >>> > > > > > > > >>>> > > > > > > > >>> > > > > > > > >>>> Hi and welcome. I dont really use the yahoo groups a lot but I > > wanted to > > > > > > > >>> > > > > > > > >>>> say welcome. I have a baby girl..almost 6months old she has PMG..we > > found > > > > > > > >>> > > > > > > > >>>> out when she was about 3weeks. Its been an adventure with lots of > > ups and > > > > > > > >>> > > > > > > > >>>> downs for sure but I think we all learn how to handle things the > > best we > > > > > > > >>> > > > > > > > >>>> can. My daughter also is super happy most of the time so I think > > the helps! > > > > > > > >>> > > > > > > > >>>> Its is nice to have other parents to talk to though! > > > > > > > >>> > > > > > > > >>>> > > > > > > > >>> > > > > > > > >>>> > > > > > > > >>> > > > > > > > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Mine has mild ventriculomegaly, too, and has been monitored for hydro. His large head during pregnancy is what led to his PMG diagnosis. So far it has not shifted to hydrocephalus! He's had 3 mri's since birth and one before. His head size has continued to grow fairly rapidly and is just recently starting to curve (NOT anywhere near a normal growth curve but it isn't shooting straight up anymore...whew!). Hoping it evens out and stops growing so rapidly. Glad you are hooked up with Early Intervention. I think it makes a world of difference!! > ** > > > My little one also has a very large head. He also has ventriculomegaly and > is monitored for hydrocephalus. So far so good! > We have started PT, and just got into the early start program as well. > > > > > > > > > > > >>> > > > > > > > > > >>>> > > > > > > > > > >>> > > > > > > > > > >>>> Hi and welcome. I dont really use the yahoo groups a lot but I > > > wanted to > > > > > > > > > >>> > > > > > > > > > >>>> say welcome. I have a baby girl..almost 6months old she has > PMG..we > > > found > > > > > > > > > >>> > > > > > > > > > >>>> out when she was about 3weeks. Its been an adventure with lots > of > > > ups and > > > > > > > > > >>> > > > > > > > > > >>>> downs for sure but I think we all learn how to handle things the > > > best we > > > > > > > > > >>> > > > > > > > > > >>>> can. My daughter also is super happy most of the time so I think > > > the helps! > > > > > > > > > >>> > > > > > > > > > >>>> Its is nice to have other parents to talk to though! > > > > > > > > > >>> > > > > > > > > > >>>> > > > > > > > > > >>> > > > > > > > > > >>>> > > > > > > > > > >>> > > > > > > > > > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 My little ones diagnosis is PMG with associated ventriculomegaly but she has a small head??? I was told her right side of her brain is a lot smaller than the left as it stopped growing in the womb first indication that anything was wrong was during one of my routine scans was told her ventricles were enlarged but 2 weeks later they said that they were ok but when the seizures started an MRI was performed and that's when we got diagnosis Sent from my BlackBerry® smartphone on O2 Re: Re: Hi, New to the group Mine has mild ventriculomegaly, too, and has been monitored for hydro. His large head during pregnancy is what led to his PMG diagnosis. So far it has not shifted to hydrocephalus! He's had 3 mri's since birth and one before. His head size has continued to grow fairly rapidly and is just recently starting to curve (NOT anywhere near a normal growth curve but it isn't shooting straight up anymore...whew!). Hoping it evens out and stops growing so rapidly. Glad you are hooked up with Early Intervention. I think it makes a world of difference!! > ** > > > My little one also has a very large head. He also has ventriculomegaly and > is monitored for hydrocephalus. So far so good! > We have started PT, and just got into the early start program as well. > > > > > > > > > > > >>> > > > > > > > > > >>>> > > > > > > > > > >>> > > > > > > > > > >>>> Hi and welcome. I dont really use the yahoo groups a lot but I > > > wanted to > > > > > > > > > >>> > > > > > > > > > >>>> say welcome. I have a baby girl..almost 6months old she has > PMG..we > > > found > > > > > > > > > >>> > > > > > > > > > >>>> out when she was about 3weeks. Its been an adventure with lots > of > > > ups and > > > > > > > > > >>> > > > > > > > > > >>>> downs for sure but I think we all learn how to handle things the > > > best we > > > > > > > > > >>> > > > > > > > > > >>>> can. My daughter also is super happy most of the time so I think > > > the helps! > > > > > > > > > >>> > > > > > > > > > >>>> Its is nice to have other parents to talk to though! > > > > > > > > > >>> > > > > > > > > > >>>> > > > > > > > > > >>> > > > > > > > > > >>>> > > > > > > > > > >>> > > > > > > > > > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 My daughters left hemisphere was also smaller, but her skull size was normal. She didn't use her right hand - ever. That was our first indication. Sent from my iPhone > My little ones diagnosis is PMG with associated ventriculomegaly but she has a small head??? I was told her right side of her brain is a lot smaller than the left as it stopped growing in the womb first indication that anything was wrong was during one of my routine scans was told her ventricles were enlarged but 2 weeks later they said that they were ok but when the seizures started an MRI was performed and that's when we got diagnosis > Sent from my BlackBerry® smartphone on O2 > > Re: Re: Hi, New to the group > > Mine has mild ventriculomegaly, too, and has been monitored for hydro. His > large head during pregnancy is what led to his PMG diagnosis. So far it > has not shifted to hydrocephalus! He's had 3 mri's since birth and one > before. His head size has continued to grow fairly rapidly and is just > recently starting to curve (NOT anywhere near a normal growth curve but it > isn't shooting straight up anymore...whew!). Hoping it evens out and stops > growing so rapidly. > Glad you are hooked up with Early Intervention. I think it makes a world > of difference!! > > > > > >> ** >> >> >> My little one also has a very large head. He also has ventriculomegaly and >> is monitored for hydrocephalus. So far so good! >> We have started PT, and just got into the early start program as well. >> >> >>>>>> >>>>>>>> >>>>>> >>>>>>>>> >>>>>> >>>>>>>> >>>>>> >>>>>>>>> Hi and welcome. I dont really use the yahoo groups a lot but I >>>> wanted to >>>>>> >>>>>>>> >>>>>> >>>>>>>>> say welcome. I have a baby girl..almost 6months old she has >> PMG..we >>>> found >>>>>> >>>>>>>> >>>>>> >>>>>>>>> out when she was about 3weeks. Its been an adventure with lots >> of >>>> ups and >>>>>> >>>>>>>> >>>>>> >>>>>>>>> downs for sure but I think we all learn how to handle things the >>>> best we >>>>>> >>>>>>>> >>>>>> >>>>>>>>> can. My daughter also is super happy most of the time so I think >>>> the helps! >>>>>> >>>>>>>> >>>>>> >>>>>>>>> Its is nice to have other parents to talk to though! >>>>>> >>>>>>>> >>>>>> >>>>>>>>> >>>>>> >>>>>>>> >>>>>> >>>>>>>>> >>>>>> >>>>>>>> >>>>>> >>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Yes our PMG diagnosis was one of the results which started from detection of ventriculomegaly as well. Mel, do you mind if I ask how old your child is? Our head circs have been quite high and hoping to stop jumping up after his next visit in a couple months. > > > > > > > > > > > >>> > > > > > > > > > > > >>>> > > > > > > > > > > > >>> > > > > > > > > > > > >>>> Hi and welcome. I dont really use the yahoo groups a lot but I > > > > wanted to > > > > > > > > > > > >>> > > > > > > > > > > > >>>> say welcome. I have a baby girl..almost 6months old she has > > PMG..we > > > > found > > > > > > > > > > > >>> > > > > > > > > > > > >>>> out when she was about 3weeks. Its been an adventure with lots > > of > > > > ups and > > > > > > > > > > > >>> > > > > > > > > > > > >>>> downs for sure but I think we all learn how to handle things the > > > > best we > > > > > > > > > > > >>> > > > > > > > > > > > >>>> can. My daughter also is super happy most of the time so I think > > > > the helps! > > > > > > > > > > > >>> > > > > > > > > > > > >>>> Its is nice to have other parents to talk to though! > > > > > > > > > > > >>> > > > > > > > > > > > >>>> > > > > > > > > > > > >>> > > > > > > > > > > > >>>> > > > > > > > > > > > >>> > > > > > > > > > > > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 Yes she does they started at 10months and were hard to get under control at first she had been 17months seizure free just before xmas when she had a few prolonged seizures which ended up being a kidney infection but she's back toi her old self again over the xmas period she has started to pull herself up really well in her cot using the one hand and has started to say mama not directly at me but its progress and were over the moon hopefully 2012 will bring loads more of achievements for us all to celebrate Sent from my BlackBerry® smartphone on O2 Re: Hi, New to the group Thanks, it is nice to know that it is a symptom of PMG. At two, is your daughter meeting all her milestones, sitting up, crawling, walking talking? > > > >> > > > >> Hi and welcome. I dont really use the yahoo groups a lot but I wanted to > > > >> say welcome. I have a baby girl..almost 6months old she has PMG..we found > > > >> out when she was about 3weeks. Its been an adventure with lots of ups and > > > >> downs for sure but I think we all learn how to handle things the best we > > > >> can. My daughter also is super happy most of the time so I think the helps! > > > >> Its is nice to have other parents to talk to though! > > > >> > > > >> > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 Hi Kat, I'm in Grand Rapids, Michigan. Are you close enough to visit? Kara ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Wednesday, January 11, 2012 12:36 AM Subject: Re: Hi, New to the group  Great advice Kara! This group and the facebook group are so great, I'd be lost without them. Thank you for sharing. ps - where abouts are you in location if you don't mind me asking? thanks. ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Wednesday, 11 January 2012 3:18 PM Subject: Re: Hi, New to the group  I feel so much for you. That roller coaster is so rough, especially initially. The waiting game is hard, but then often we don't even know what we are waiting for! Try to enjoy each day with your little one and take it one day at a time. It took me over four months to even research more about our son's condition, the grief was so intense. Be patient with yourself, we are all here standing by to help you in any way we can. Kara ________________________________ To: polymicrogyria Sent: Tuesday, January 10, 2012 12:52 PM Subject: Hi, New to the group  Hi, I just joined the group. I have an infant that was diagnosed with polymicrogyria. We found out a few months ago so I've had some time to process and go through an emotional roller coaster. I was really happy to see this group and get connected with others going through the same thing. My baby is doing well so far. I guess the hardest part is the waiting game and the unknown. I look forward to being involved and meeting others! Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 Hi My daughters right hand (even pre surgery) was only a " helper " hand. She, if forced, could stabilize things with it. As a baby she has it in a fist against her body (posturing) in all pictures. She did great with adaptations on her own and learned a way to do just about everything. Sent from my iPhone > Hi , > > Does your daughter have use of her right hand now? My sons left side is also mostly affected by Pmg. He has cp and refuses to use his right hand. It's always in a fist when he's working hard. He can use his right hand if highly motivated(I hold his left hand back) but he almost always finds an alternative before using that right hand. He will use his head or foot or fight me like crazy to get that left hand free. My son just turned a year in November btw. Thanks as always for your encouraging words. It helps to have this group!! > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > > > > I remember the first year. I was 20 and my daughter was 10 months old at the diagnosis (which was cerebral palsy - PMG wasn't even on the radar yet due to imaging technology). We had know something was " wrong " since she was 2 months. She never used her right hand but the doctors ignored us. She will be 15 March 1st. > > > > It's worth it. Every moment. I promise that even though you will walk through some horrible places, you will come through. My daughter has limitations, but they are minor and now that we've cured her epilepsy, she will lie on her own and even have children if she wants to. It's an amazing thing to watch them blow the doctors out of the water! > > > > > > > > Sent from my iPhone > > > > > > > > > Welcome! I remember the first few difficult months like they were > > > yesterday. Hang in there and give yourself time to adjust. Know that > > > everyone is here to support you and that things often turn out much better > > > than the picture the doctors may paint in the beginning. My Callie recently > > > turned two and is making great progress! Hopefully her story and others > > > here can provide encouragement and hope. > > > > > > ((hugs)) > > > > > > > > > Callie's story: > > > http://calliebloggie.blogspot.com/ > > > > > > > > > > > > > > > > > >> ** > > >> > > >> > > >> Hi, I just joined the group. I have an infant that was diagnosed with > > >> polymicrogyria. We found out a few months ago so I've had some time to > > >> process and go through an emotional roller coaster. I was really happy to > > >> see this group and get connected with others going through the same thing. > > >> My baby is doing well so far. I guess the hardest part is the waiting game > > >> and the unknown. > > >> I look forward to being involved and meeting others! > > >> > > >> Thanks! > > >> > > >> > > >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 My daughter had her first seizure at 18 months. She went off all medication from 3-5 years then they started again. She didn't get BAD until age 10 when everything went crazy (hello puberty!). Sent from my iPhone > Kim, your baby sounds just like mine... My son (left pmg) is just about one and will fight so hard to avoid using his right arm. Its always fisted, more so when concentrating on something. He uses his feet to play instead of his hand. As soon as I get something in that hand he'll drop it. > > , when did your daughters seizures first start? As far as I know my son has no seizure activity at this time, but its my biggest worry. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 You will know when it's a seizure. Trust me. Even the little ones - you know. If they start THEN you start thinking every time they day dream it's a seizure and you get hyper vigilant. But the first seizure? You know. And if you don't know for sure the doctors will ignore you. So relax and take basic Seizure precautions - which you most likely already do. Sent from my iPhone > Hi ! My son hasn't any seizure activity thus far either. That scares me too. I am insane about every little weird thing he does because I also don't know what to expect, you know what I mean? > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > > > > Kim, your baby sounds just like mine... My son (left pmg) is just about one and will fight so hard to avoid using his right arm. Its always fisted, more so when concentrating on something. He uses his feet to play instead of his hand. As soon as I get something in that hand he'll drop it. > > > > , when did your daughters seizures first start? As far as I know my son has no seizure activity at this time, but its my biggest worry. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2012 Report Share Posted January 15, 2012 Jessii Grana Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2012 Report Share Posted January 16, 2012 Hi , Sorry that you have to come here, but it is a great support. Just ask away and someone will try to answer your questions or just give you moral support. We went through the same with family support. They don't understand because they can't understand. You have to live with a child with dissabilities to understand what is happening in your family life. They are only looking in from the outside and love to give you advice which you would love to throw back at them. They mean well most of the time with their words but sometimes it just hurts. It is better for you to get them involved in your daily life by asking them to come over for a day and see if they can help you with chores and look after while you run errands. This will also be of help to your daughter. If you do it all by yourself you will run yourself down and be of no help to your children. Make sure you in time, take time out for yourself and your husband. I am speaking from experience, by wanting to do everything myself and not letting others help. The result was a breakdown which took years to mend. No fun at all. Take Care, Janice Mum to Kym 18 yrs old. (Ohtahara syndrome & PMG) and 5 siblings and 1 foster child. Re: Hi, New to the group > > Date: 16/01/2012 1:45 am > > Hi, my name is and I just became a part of this group. My daughter is 8 months old, and was diagnosed with polymicrogyria about 2 weeks ago. We've had an emotional 2012... Along with PMG she was diagnosed with Malrotation, and under went surgery on Jan 4. Im still in some shock...and trying to hold it all together while raising her and my 2 1/2 yr old son. My husband and our families are a great support system but none of them have gone through any of this before. It's all still so fresh and I don't really know where to go from here...any advice would be great. Thank you. > > > > Sent from my iPad > > Quote Link to comment Share on other sites More sharing options...
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