Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Definitely Inspires!!! That's so great... Weir Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme. New Brunswick, Canada Weir homepage: http://ca.geocities.com/weirfamilyrogers CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca update on Lucas This is sort of a brag letter, I hope it inspires rather than causes others to measure. My 25 mo old Charger Lucas is just doing WONDERFULLY! He is hearing with his new Cochlear Implant, he turns to claps 100% of the time, and to " NO " much of the time. He marvels in the dog howling, and now likes to bang on doors, pots and pans, etc, which he never did before. He can stand up from the floor and walk across the house, but is too unsteady to walk in public. He knows the way to grandmas house as he cries and signs grandma whenever we pass by her street. He signs in great detail, telling me what he did during the day, such as he saw " black bug " , or went to " excercize play " (health club daycare). He goes to sleep at 8:30 or 9 PM and will stay quiet in his crib " reading " books until nearly 8 AM. He eats and drinks everything (though not enough), and will use his Voice to get a flintstone Vitamin. He is funny, and loving. Things may not be like other kids, as we have meds, appts, tests, supplemental Gtube feeding, therapies, etc and of course I worry that behavioral issues will arise later, or his heart will cause more problems, but for now he is such a joy and I just wanted to share!! Lacey, mom to Lucas and wife to __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Lacey - That is awesome! It's wonderful to share the joys. If all we shared were the troubles, that wouldn't be much fun. There are times when I am so amazed at how well Aubrie is doing, considering. Those times bring such immense joy. I'm glad to know that you are feeling that with Lucas as well. I hope you continue to find many reasons to rejoice. Michele W Aubrie's mom 6 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Lacey, We are always thrilled to hear of the positive things happening in the lives of our kids with CHARGE. That is awesome that Lucas is able to hear and is learning sign. It sounds like he has a good understanding of concepts, has eye contact, and understands about no. All those are wonderful indicators for how well he will do down the line. I would put the behavior worries to the way back burner. It sounds like he is really doing well. Kim > This is sort of a brag letter, I hope it inspires rather than causes others to > measure. > > My 25 mo old Charger Lucas is just doing WONDERFULLY! He is hearing with his > new Cochlear Implant, he turns to claps 100% of the time, and to " NO " much of > the time. He marvels in the dog howling, and now likes to bang on doors, pots > and pans, etc, which he never did before. He can stand up from the floor and > walk across the house, but is too unsteady to walk in public. He knows the > way to grandmas house as he cries and signs grandma whenever we pass by her > street. He signs in great detail, telling me what he did during the day, such > as he saw " black bug " , or went to " excercize play " (health club daycare). He > goes to sleep at 8:30 or 9 PM and will stay quiet in his crib " reading " books > until nearly 8 AM. He eats and drinks everything (though not enough), and > will use his Voice to get a flintstone Vitamin. He is funny, and loving. > Things may not be like other kids, as we have meds, appts, tests, supplemental > Gtube feeding, therapies, etc and of course I worry that > behavioral issues will arise later, or his heart will cause more problems, but > for now he is such a joy and I just wanted to share!! > Lacey, mom to Lucas and wife to > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Lacey, We are always thrilled to hear of the positive things happening in the lives of our kids with CHARGE. That is awesome that Lucas is able to hear and is learning sign. It sounds like he has a good understanding of concepts, has eye contact, and understands about no. All those are wonderful indicators for how well he will do down the line. I would put the behavior worries to the way back burner. It sounds like he is really doing well. Kim > This is sort of a brag letter, I hope it inspires rather than causes others to > measure. > > My 25 mo old Charger Lucas is just doing WONDERFULLY! He is hearing with his > new Cochlear Implant, he turns to claps 100% of the time, and to " NO " much of > the time. He marvels in the dog howling, and now likes to bang on doors, pots > and pans, etc, which he never did before. He can stand up from the floor and > walk across the house, but is too unsteady to walk in public. He knows the > way to grandmas house as he cries and signs grandma whenever we pass by her > street. He signs in great detail, telling me what he did during the day, such > as he saw " black bug " , or went to " excercize play " (health club daycare). He > goes to sleep at 8:30 or 9 PM and will stay quiet in his crib " reading " books > until nearly 8 AM. He eats and drinks everything (though not enough), and > will use his Voice to get a flintstone Vitamin. He is funny, and loving. > Things may not be like other kids, as we have meds, appts, tests, supplemental > Gtube feeding, therapies, etc and of course I worry that > behavioral issues will arise later, or his heart will cause more problems, but > for now he is such a joy and I just wanted to share!! > Lacey, mom to Lucas and wife to > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Lacey, I think you will fine that people on this list don't " measure " . Each family has their joys and successes at all different levels. I can only speak for myself, but I love to read about progress no matter how great or how small. I wish this list had been around when our ( almost 20) was little. We were very much alone with all the medical problems and hearing issues. Thanks for sharing.Give Lucas a big hug and pat your self and your husband on the back. Lynn Mom to Tom25, ( 20 on 9-7-2004) and wife to Doug. update on Lucas This is sort of a brag letter, I hope it inspires rather than causes others to measure. My 25 mo old Charger Lucas is just doing WONDERFULLY! He is hearing with his new Cochlear Implant, he turns to claps 100% of the time, and to " NO " much of the time. He marvels in the dog howling, and now likes to bang on doors, pots and pans, etc, which he never did before. He can stand up from the floor and walk across the house, but is too unsteady to walk in public. He knows the way to grandmas house as he cries and signs grandma whenever we pass by her street. He signs in great detail, telling me what he did during the day, such as he saw " black bug " , or went to " excercize play " (health club daycare). He goes to sleep at 8:30 or 9 PM and will stay quiet in his crib " reading " books until nearly 8 AM. He eats and drinks everything (though not enough), and will use his Voice to get a flintstone Vitamin. He is funny, and loving. Things may not be like other kids, as we have meds, appts, tests, supplemental Gtube feeding, therapies, etc and of course I worry that behavioral issues will arise later, or his heart will cause more problems, but for now he is such a joy and I just wanted to share!! Lacey, mom to Lucas and wife to __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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