Guest guest Posted February 6, 2012 Report Share Posted February 6, 2012 Kathy Hello. I know that your entire family is terrified. I'm sorry that you are here. Is any member on FaceBook? There is a support group on there as well. Please know that right now nothing that you're told is written in stone. My advice to everyone that is thrust into this situation is to take it one day at a time and know being scared is normal. We have all been there. We are all scared, angry and lost at points. It gets easier, I promise. Sent from my iPhone > Ariel Ann is my 4 week old granddaughter; she was just diagnosed with polymicrogyria; evidently she has a very rare form that affects the entire brain. We are waiting for further testing to determine how this is going to affect Ariel. We know that her hearing and sight are good; they have both been tested. We are currently waiting to see if they can get her oxegen sat levels to where they need to be in order for Ariel to eat normally, they are feeding her through a tube because when she was eating from a bottle her sat levels would drop. She is having trouble maintaining her body temperature. We live in the Branson, MO area and Ariel is up at Children's Hospital in St. Louis; it is hard to have her so far away, we are just hoping that they can get her stable enough to come home soon. This is all so new, she was only diagnosed on Friday 2/3, so we are looking for information and support. Thanks in advance for any that you can share. > > Grandma Kathy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2012 Report Share Posted February 6, 2012 Welcome to the group! My daughter is 5 with unilateral PMG. Their is a facebook page for support and sharing too. This is journey sometimes not pretty. Be all the support you can and work on the current start with early intervention. These kids make their own timeline and the brain has wonderful adaptive qualities. Try not to be discouraged by doctors. Read the poem Welcome to Holland. Diane Sent from Samsung Conquerâ„¢ 4G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2012 Report Share Posted February 6, 2012 Hang in there! One thing that I have learned is these kiddos make their own rules. The brain is amazing and so are our kids! My daughter is almost 3 and with early intervention she continues to accomplish so much. We are also from Missouri closer to the Kansas city area. If you ever have questions or just need an ear feel free to contact me anytime. We are all family! ~Jodi mom to a teen, a tween and a toddler!! > Kathy > > Hello. I know that your entire family is terrified. I'm sorry that you are here. Is any member on FaceBook? There is a support group on there as well. Please know that right now nothing that you're told is written in stone. My advice to everyone that is thrust into this situation is to take it one day at a time and know being scared is normal. We have all been there. We are all scared, angry and lost at points. It gets easier, I promise. > > > > Sent from my iPhone > > > > > Ariel Ann is my 4 week old granddaughter; she was just diagnosed with polymicrogyria; evidently she has a very rare form that affects the entire brain. We are waiting for further testing to determine how this is going to affect Ariel. We know that her hearing and sight are good; they have both been tested. We are currently waiting to see if they can get her oxegen sat levels to where they need to be in order for Ariel to eat normally, they are feeding her through a tube because when she was eating from a bottle her sat levels would drop. She is having trouble maintaining her body temperature. We live in the Branson, MO area and Ariel is up at Children's Hospital in St. Louis; it is hard to have her so far away, we are just hoping that they can get her stable enough to come home soon. This is all so new, she was only diagnosed on Friday 2/3, so we are looking for information and support. Thanks in advance for any that you can share. > > > > Grandma Kathy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 Grandma Kathy, The beginning of the journey was definitely the hardest for our family. I grew up in St. Louis and Ariel Ann is at a wonderful facility. My 2 year old son also has PMG affecting the entire brain. This may sound strange, but your family WILL reach a point someday when you will find peace and even joy in your situation. Just wait until you see the big smiles our pmg kids love to give! We live in NW Arkansas and travel to Branson a few times a year and would love to help your family in whatever way we can. > > > > > Ariel Ann is my 4 week old granddaughter; she was just diagnosed with polymicrogyria; evidently she has a very rare form that affects the entire brain. We are waiting for further testing to determine how this is going to affect Ariel. We know that her hearing and sight are good; they have both been tested. We are currently waiting to see if they can get her oxegen sat levels to where they need to be in order for Ariel to eat normally, they are feeding her through a tube because when she was eating from a bottle her sat levels would drop. She is having trouble maintaining her body temperature. We live in the Branson, MO area and Ariel is up at Children's Hospital in St. Louis; it is hard to have her so far away, we are just hoping that they can get her stable enough to come home soon. This is all so new, she was only diagnosed on Friday 2/3, so we are looking for information and support. Thanks in advance for any that you can share. > > > > > > Grandma Kathy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 Hi, My name is Melyn, my son is almost 6 years old. He also has generalized bilateral polymicrogyria affecting the entire brain. I am also a member of the Polymicrogyria group on Facebook and get to that page much more often than I check in here. eats by mouth, but also has a g button for days when he is sick. He continues to have difficulty with his body temperature and O2 sats although it is more random and not necessarily related to when he is eating. Glad you found this group, hope you can join the facebook group too! > > Ariel Ann is my 4 week old granddaughter; she was just diagnosed with polymicrogyria; evidently she has a very rare form that affects the entire brain. We are waiting for further testing to determine how this is going to affect Ariel. We know that her hearing and sight are good; they have both been tested. We are currently waiting to see if they can get her oxegen sat levels to where they need to be in order for Ariel to eat normally, they are feeding her through a tube because when she was eating from a bottle her sat levels would drop. She is having trouble maintaining her body temperature. We live in the Branson, MO area and Ariel is up at Children's Hospital in St. Louis; it is hard to have her so far away, we are just hoping that they can get her stable enough to come home soon. This is all so new, she was only diagnosed on Friday 2/3, so we are looking for information and support. Thanks in advance for any that you can share. > > Grandma Kathy > > Quote Link to comment Share on other sites More sharing options...
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