Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 yeah that is such good news. and Hailee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 Yeah! Congratulations Chelsea and e! So glad to hear her good news. Cindy, Mom to Seth and Ben (both mito kids) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 Thank you so much for sharing the great news! I am so thrilled for you and Chelsea. I can imagine how happy she must be! It's no nice to hear a good report. mary b Connor's mom - 10 years old - Leigh's/COX God news on Chelsea I have not been online much at all the past 2 weeks, and this time it is because Chelsea is doing very well! She perked up from her lung lining infection just in time for her Very Special Arts Festival at school on the 7th. She shocked and amazed me that day by staying awake the entire time we were at the festival, about 4hrs. Since that, she has decided to cut out naps on non school days, is staying awake nearly the whole day at school (today was all day-6hrs), and only sleeping 8 to 10hrs a nite, compared to 12+ and a nap. She also has way more energy, is tolerating longer work outs and mild sweating. She has also been more active on her own and constantly wiggling! She is soooo happy and smiles all the time! She is being weaned off phenobarb, so I am sure that is most of it. I have been waiting nearly 5 LONG years to get her off this drug. It is so nice to see her turn around for the better after having seen her get worse when she started it. You all are still in my thoughts and prayers. I hope to get caught up on my mail soon, just wanted to share something good for once! e, Chelsea's mom(non specific mito)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 e, I am so glad that Chelsea is doing so great. Sit back and enjoy! We don't get many of these times and you need to savor every minute. I hope it lasts a long, long time! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 e: That is so cool to hear!!!! Isn't it amazing how we look at things differently and rejoice that our children are staying awake longer and sleeping so many hours. Some people might look at us like we have a screw loose. I pray that this will continue and that summer time will be gentle on you all and when next school year comes along she will amaze them all. Good luck. Nerenhausen mom to Leah jayvelde@... wrote: I have not been online much at all the past 2 weeks, and this time it is because Chelsea is doing very well! She perked up from her lung lining infection just in time for her Very Special Arts Festival at school on the 7th. She shocked and amazed me that day by staying awake the entire time we were at the festival, about 4hrs. Since that, she has decided to cut out naps on non school days, is staying awake nearly the whole day at school (today was all day-6hrs), and only sleeping 8 to 10hrs a nite, compared to 12+ and a nap. She also has way more energy, is tolerating longer work outs and mild sweating. She has also been more active on her own and constantly wiggling! She is soooo happy and smiles all the time!She is being weaned off phenobarb, so I am sure that is most of it. I have been waiting nearly 5 LONG years to get her off this drug. It is so nice to see her turn around for the better after having seen her get worse when she started it.You all are still in my thoughts and prayers. I hope to get caught up on my mail soon, just wanted to share something good for once! e, Chelsea's mom(non specific mito) Please contact mito-owner with any problems or questions. This message scanned for viruses by CoreComm Quote Link to comment Share on other sites More sharing options...
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