Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Josie: I'm so glad you were able to plan a mini-escape. Even though I can't be with you physically I'm am definitely there in spirit. I relish the description you provided of all the lush surroundings - it's so nice to know for sure that exists still when all I see is white snow and/or slushy roads...and very bitter cold weather. Good to know bounced right back into health once her trip to see her big sis came around. I can't say I'd blame her - I know my own cold would seem non-existent if I knew I was getting away. Hope you continue to feel 30ish. Just as an aside, you sound no older than 20 something to me.. Have a good one pal, Abby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 Since my Darrell Lea Sunday afternoon, I went and bought some dried banana and choc chips. I have lost close to 40 kilos so I feel very good with the band at the moment. Sure would love to get down another 10...and maybe in time who knows. Stay well everyone, Dorothey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 Lovely to hear from you Dorothy - hope all is going well and a Darrell Lea afternoon sounds lush! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 Hi there , I felt a tad flat, so yes it was just what I needed... It worked and I just had an early so all was well. Today here in Canberra, we have had a spring blow out, it is so windy it has blown our spring away I think. Have a good week and hope all is well your way. I think these boards are full of people that can't do the last 10..hey if I am not careful I will be in line to do the last 30 again. cheers, Dorothey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2009 Report Share Posted October 19, 2009 Hi Scarlett's Mommy, Wow. We've all been where you are. I am glad you found us but I am sorry that you have to be here. The development spectrum of PMG is ALL OVER THE place. In my situation, our daughter has regressed significantly since she began having seizures. We recently (over the past 4 days) have reduced her seizures to 0-1 a day and all of a sudden she is looking at us, behaving like a normal 3 year old and learning things. Granted, she will never be whatever " normal " is but in our experience, seizures really " F " them up. And, I always use the " F " word when it comes to seizures. No other word really captures my feelings like the " F " word around seizures. If my daughter ever talks and her first word is the " F " word, I would be thrilled. (smile). Youc an track our journey at www.caringbridge.org/visit/alexandraquandt Welcome. Rochelle ________________________________ To: polymicrogyria Sent: Mon, October 19, 2009 6:34:58 AM Subject: Hi All Hi there. We were just diagnosed with PMG last week and I am having trouble trying to wrap my brain around this whole thing. My daughter, Scarlett, was doing wonderful until she turned 6 mos. That is when she was diagnosed with Infantile Spasms and began regressing. She is now 10 mos. I am wondering if this is how it was for several of you as well? Where everything was just fine until they reached a certain age. And Why? Is it due to the brain development at that time, that the symptoms begin to show? Any input would be greatly appreciated. Thank you, Scarlett's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2009 Report Share Posted October 19, 2009 Hi la, We were diagnosed when was 5 months old. He had breatholding episodes that got the all medical testing started. Finally... after an MRI ...we received the diagnosis of Polymicrogyria. 12 years ago...there wasn't much on the Internet and did not hear the term 'Cerebral Palsy' for another 4 months. I knew that I was starting a different journey than expected with our new son (Welcome to Holland is a great poem to describe this journey). never met many of his milestones. Some kids are just getting diagnosed into their teens... and they have no other thing going on other than seizures. is the love of our life. Each child is so very different in what they can/can't do. is 12....very medically involved and quite possibly the happiest / cutest young man in the world. Celebrate what Scarlet can do...not what she can't. You are her #1 advocate and will be her biggest cheerleader in this wonderful game of 'life'. Blessings, Sharon - Mom to Subject: Hi All To: polymicrogyria Date: Monday, October 19, 2009, 4:34 AM Hi there. We were just diagnosed with PMG last week and I am having trouble trying to wrap my brain around this whole thing. My daughter, Scarlett, was doing wonderful until she turned 6 mos. That is when she was diagnosed with Infantile Spasms and began regressing. She is now 10 mos. I am wondering if this is how it was for several of you as well? Where everything was just fine until they reached a certain age. And Why? Is it due to the brain development at that time, that the symptoms begin to show? Any input would be greatly appreciated. Thank you, Scarlett's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2009 Report Share Posted October 19, 2009 Very well said Sharon Sent via BlackBerry by AT & T Hi All To: polymicrogyria Date: Monday, October 19, 2009, 4:34 AM Hi there. We were just diagnosed with PMG last week and I am having trouble trying to wrap my brain around this whole thing. My daughter, Scarlett, was doing wonderful until she turned 6 mos. That is when she was diagnosed with Infantile Spasms and began regressing. She is now 10 mos. I am wondering if this is how it was for several of you as well? Where everything was just fine until they reached a certain age. And Why? Is it due to the brain development at that time, that the symptoms begin to show? Any input would be greatly appreciated. Thank you, Scarlett's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2009 Report Share Posted October 19, 2009 Dear la, I am saddenned to hear of your child's diagnosis. I would also like to welcome you to the group. The parents of this support group and the PMG support groups on facebook have really helped me more than anyone else, including the doctors. When you feel alone, overwhelmed, and frusted- please know we are with you and on this journey together!! Please ask any questions you have do not hesitate to ask!! Sincerely, Joy: Mother of TJ Joy: almost 2: Perisylvian PMG with spinal abnormalities www.caringbridge.com/visit/tjjoy Subject: Hi All To: polymicrogyria Date: Monday, October 19, 2009, 7:34 AM Hi there. We were just diagnosed with PMG last week and I am having trouble trying to wrap my brain around this whole thing. My daughter, Scarlett, was doing wonderful until she turned 6 mos. That is when she was diagnosed with Infantile Spasms and began regressing. She is now 10 mos. I am wondering if this is how it was for several of you as well? Where everything was just fine until they reached a certain age. And Why? Is it due to the brain development at that time, that the symptoms begin to show? Any input would be greatly appreciated. Thank you, Scarlett's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 do you have any more info on the annual conference dr dobyns attends? is it something we parents can attend? Subject: Re: Hi All To: polymicrogyria Date: Monday, October 19, 2009, 11:21 PM Hi la, I am so glad you found this group, the support and knowledge here is amazing! My daughter just turned 6, she has spastic quad CP, microcephaly, seizure disorder and is globally delayed. For the most part she was the typical baby from birth until 3 months of age. Out of the blue at 3 months of age she had 2 long seizures and lost all of her development, even breathing was questionable for a short while. I remember the feeling of not being able to wrap my brain around the information overload that I was recieving. It was a terrible time but things have gotten better! My daughter has a very abnormal brain and this is why she started to have the seizures. We have gone through a bunch of genetic testing with Dr Dobyns in Chicago and the Walsh Lab in Boston. Dr Dobyns is the polymicrogyria expert in the US. He comes to the yearly Foundation for Children with Microcephaly Conventions. And the FCM includes families with polymicrogyria and other brain abnormalities. The answer for why this happened cant always be found but he tries his best and is a wealth if informtion. I struggled for a very long time, still do some days, over the whys but have learned that holding myself back with that question will not help my daughter. I focus on her needs and how I can help her achieve the most useful progress. I feel lucky to have heard about Early Intervention right away and my daughter started therapy at five months of age through Early On and also through the local childrens outpatient therapy center. When she was 3 years and started that school program I was not happy and started seraching for something better. I found two programs Conductive Education and Intense PT with Suit Therapy. Both of these programs are the reason my daughter has made the huge amounts of progress she has in the last 3 years. These are two programs that I suggest all families investigate whos children have a motor disorder, such as CP. Therapies are the key to giving our children the best possible chance in life. My daughter was on a very dark path, trapped in her body and wanting out...she found her way out, learned to help feed herself, learned to sit up on the floor and in a chair and has the passion to walk...maybe someday she will achieve that. Listen to your daughter and your gutt to fight for what she needs. The hardest part of all of this for me is that my whole life path and dreams were changed and I had to learn to adjust. I am not sure what the future holds for my daughter because she is ever changing the path of her life. I had to learn to live in the moment, focus on what mattered the most and start dreaming new dreams for us. Take care, and Alyssa Grand Rapids, MI > > Hi there. We were just diagnosed with PMG last week and I am having trouble trying to wrap my brain around this whole thing. My daughter, Scarlett, was doing wonderful until she turned 6 mos. That is when she was diagnosed with Infantile Spasms and began regressing. She is now 10 mos. I am wondering if this is how it was for several of you as well? Where everything was just fine until they reached a certain age. And Why? Is it due to the brain development at that time, that the symptoms begin to show? Any input would be greatly appreciated. Thank you, Scarlett's Mom > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 Hi Everyone, I replied earlier to Jen but want to make sure everyone else knows about the annual conference that Dr. Dobyns and Walsh Labs attends and sees families at. Its held by the Foundation for Children with Microcephaly. Check out their website at www.childrenwithmicro.org I am the organizations state rep for Michigan. The next conference will be held in mid to late June near sdale, AR and it includes families whos children have brain abnormailies like polymicrogyria and lissencephaly. Many families come as an entire family, siblings and grandparents too. Its great to get to know and learn from other families and learn more from the presenters and vendors there. Let me know what questions you all have. Take care, > > > > > > Hi there. We were just diagnosed with PMG last week and I am having trouble trying to wrap my brain around this whole thing. My daughter, Scarlett, was doing wonderful until she turned 6 mos. That is when she was diagnosed with Infantile Spasms and began regressing. She is now 10 mos. I am wondering if this is how it was for several of you as well? Where everything was just fine until they reached a certain age. And Why? Is it due to the brain development at that time, that the symptoms begin to show? Any input would be greatly appreciated. Thank you, Scarlett's Mom > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 I would love to know what date and time etc. Please let me know when you find out. Thanks, la Subject: Re: Hi All To: polymicrogyria Date: Thursday, October 22, 2009, 1:48 PM Hi Everyone, I replied earlier to Jen but want to make sure everyone else knows about the annual conference that Dr. Dobyns and Walsh Labs attends and sees families at. Its held by the Foundation for Children with Microcephaly. Check out their website at www.childrenwithmic ro.org I am the organizations state rep for Michigan. The next conference will be held in mid to late June near sdale, AR and it includes families whos children have brain abnormailies like polymicrogyria and lissencephaly. Many families come as an entire family, siblings and grandparents too. Its great to get to know and learn from other families and learn more from the presenters and vendors there. Let me know what questions you all have. Take care, > > > > > > Hi there. We were just diagnosed with PMG last week and I am having trouble trying to wrap my brain around this whole thing. My daughter, Scarlett, was doing wonderful until she turned 6 mos. That is when she was diagnosed with Infantile Spasms and began regressing. She is now 10 mos. I am wondering if this is how it was for several of you as well? Where everything was just fine until they reached a certain age. And Why? Is it due to the brain development at that time, that the symptoms begin to show? Any input would be greatly appreciated. Thank you, Scarlett's Mom > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 Dear Ladies, I read a lot but don't post very often. One thing I have noticed is that we want to acheive so much with our children. Don't push them too hard as they are still only children. You will beat yourself up if you constantly compare them with normal kids. That just won't happen. They will develop in their own good time and suprise you when you least expect it. Enjoy being with them whilst you do what you have to do. Also let them 'play' and have some time out. Kym is now 18 and we survived . Take time out for yourself otherwise you will burn out. Then you will be no good to anyone. I had a blogger of Kyms life but my daughter accidently deleted it. such a shame and waste of all the work that went into it. Janice, mom to 6 kids (18 - 29 yrs) and 2 foster kids (4yr old and 9 monthold) Quote Link to comment Share on other sites More sharing options...
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