Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 First of all... Thank you so much for responding to my postings. You've been a big help and it means a lot to us to know that there are people out there who are willing to help and impart knowledge. Secondly, we have good news! It's looking like Alyssa will be released from Hospital For Sick Children next week! She'll only be there like 1.5 weeks total! :-) They say that out-patient therapy should do the trick and she's gained weight there... a total of 45 grams! :-) You all know how it feels to hear your child has gained weight! *laugh!* and I felt like she just won the Nobel Prize or something... ;-) Alyssa DOES have hypoglycemia. But they think all she needs is to be woke up around 2 or 3 and given a bottle. That should do the trick. They also think she won't need much in the way of diet manipulation. So we're VERY fortunate there. However, we know there's a lot to learn and a lot still yet to be experienced and we'd like to have more info on this convention in Chicago, because we think it'd be good for us to meet other parents with RSS kids and it's better to know what's going on... Forewarned is forearmed. We'd also like to add... our thoughts and prayers are with all of you and your children. WE might be fortunate in some senses, but we know we still have a long way to go and can only imagine what some of you are going through. We are SO glad that we found this list and discovered that there ARE people that can be helpful just to be helpful, not helpful to just have a chance to " look at the - Silver baby " . Thank you so VERY much. And we're very much looking forward to hopefully meeting some of you in July and continuing to correspond and post with you. Thank you! and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 - this is great news!!! And yes, make sure to wake her up and give her a bottle. I can't remember how old she is, but it has been recommended that for the small RSS/SGA child that is under a year old, definitely continue to try giving them a nighttime bottle. If that doesn't work, use polycose in their bedtime milk. After one year of age, put a tablespoon of cornstarch in their bedtime milk. It will add 4-6 hours to their glycogen storage, thereby preventing nighttime hypoglycemia. For more info, ask MAGIC for their document #127-A and #127-C. Re the MAGIC convention, you can check their website at www.magicfoundation.org. > First of all... Thank you so much for responding to my postings. > You've been a big help and it means a lot to us to know that there > are people out there who are willing to help and impart knowledge. > > Secondly, we have good news! It's looking like Alyssa will be > released from Hospital For Sick Children next week! She'll only be > there like 1.5 weeks total! :-) They say that out-patient therapy > should do the trick and she's gained weight there... a total of 45 > grams! :-) You all know how it feels to hear your child has gained > weight! *laugh!* and I felt like she just won the Nobel Prize > or something... ;-) > > Alyssa DOES have hypoglycemia. But they think all she needs is to be > woke up around 2 or 3 and given a bottle. That should do the trick. > They also think she won't need much in the way of diet manipulation. > So we're VERY fortunate there. However, we know there's a lot to > learn and a lot still yet to be experienced and we'd like to have > more info on this convention in Chicago, because we think it'd be > good for us to meet other parents with RSS kids and it's better to > know what's going on... Forewarned is forearmed. > > We'd also like to add... our thoughts and prayers are with all of you > and your children. WE might be fortunate in some senses, but we know > we still have a long way to go and can only imagine what some of you > are going through. We are SO glad that we found this list and > discovered that there ARE people that can be helpful just to be > helpful, not helpful to just have a chance to " look at the - > Silver baby " . Thank you so VERY much. And we're very much looking > forward to hopefully meeting some of you in July and continuing to > correspond and post with you. > > Thank you! > and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 - this is great news!!! And yes, make sure to wake her up and give her a bottle. I can't remember how old she is, but it has been recommended that for the small RSS/SGA child that is under a year old, definitely continue to try giving them a nighttime bottle. If that doesn't work, use polycose in their bedtime milk. After one year of age, put a tablespoon of cornstarch in their bedtime milk. It will add 4-6 hours to their glycogen storage, thereby preventing nighttime hypoglycemia. For more info, ask MAGIC for their document #127-A and #127-C. Re the MAGIC convention, you can check their website at www.magicfoundation.org. > First of all... Thank you so much for responding to my postings. > You've been a big help and it means a lot to us to know that there > are people out there who are willing to help and impart knowledge. > > Secondly, we have good news! It's looking like Alyssa will be > released from Hospital For Sick Children next week! She'll only be > there like 1.5 weeks total! :-) They say that out-patient therapy > should do the trick and she's gained weight there... a total of 45 > grams! :-) You all know how it feels to hear your child has gained > weight! *laugh!* and I felt like she just won the Nobel Prize > or something... ;-) > > Alyssa DOES have hypoglycemia. But they think all she needs is to be > woke up around 2 or 3 and given a bottle. That should do the trick. > They also think she won't need much in the way of diet manipulation. > So we're VERY fortunate there. However, we know there's a lot to > learn and a lot still yet to be experienced and we'd like to have > more info on this convention in Chicago, because we think it'd be > good for us to meet other parents with RSS kids and it's better to > know what's going on... Forewarned is forearmed. > > We'd also like to add... our thoughts and prayers are with all of you > and your children. WE might be fortunate in some senses, but we know > we still have a long way to go and can only imagine what some of you > are going through. We are SO glad that we found this list and > discovered that there ARE people that can be helpful just to be > helpful, not helpful to just have a chance to " look at the - > Silver baby " . Thank you so VERY much. And we're very much looking > forward to hopefully meeting some of you in July and continuing to > correspond and post with you. > > Thank you! > and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 - this is great news!!! And yes, make sure to wake her up and give her a bottle. I can't remember how old she is, but it has been recommended that for the small RSS/SGA child that is under a year old, definitely continue to try giving them a nighttime bottle. If that doesn't work, use polycose in their bedtime milk. After one year of age, put a tablespoon of cornstarch in their bedtime milk. It will add 4-6 hours to their glycogen storage, thereby preventing nighttime hypoglycemia. For more info, ask MAGIC for their document #127-A and #127-C. Re the MAGIC convention, you can check their website at www.magicfoundation.org. > First of all... Thank you so much for responding to my postings. > You've been a big help and it means a lot to us to know that there > are people out there who are willing to help and impart knowledge. > > Secondly, we have good news! It's looking like Alyssa will be > released from Hospital For Sick Children next week! She'll only be > there like 1.5 weeks total! :-) They say that out-patient therapy > should do the trick and she's gained weight there... a total of 45 > grams! :-) You all know how it feels to hear your child has gained > weight! *laugh!* and I felt like she just won the Nobel Prize > or something... ;-) > > Alyssa DOES have hypoglycemia. But they think all she needs is to be > woke up around 2 or 3 and given a bottle. That should do the trick. > They also think she won't need much in the way of diet manipulation. > So we're VERY fortunate there. However, we know there's a lot to > learn and a lot still yet to be experienced and we'd like to have > more info on this convention in Chicago, because we think it'd be > good for us to meet other parents with RSS kids and it's better to > know what's going on... Forewarned is forearmed. > > We'd also like to add... our thoughts and prayers are with all of you > and your children. WE might be fortunate in some senses, but we know > we still have a long way to go and can only imagine what some of you > are going through. We are SO glad that we found this list and > discovered that there ARE people that can be helpful just to be > helpful, not helpful to just have a chance to " look at the - > Silver baby " . Thank you so VERY much. And we're very much looking > forward to hopefully meeting some of you in July and continuing to > correspond and post with you. > > Thank you! > and Quote Link to comment Share on other sites More sharing options...
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