Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 What fabulous news!!! Now that igh is home, Josh and Jen will still need loads of support from everyone. Sometimes the community or whatever rallies around during the hospitalization but figures things are all good when the child comes home. It is really just the beginning of new challenges. Be sure Josh and Jen keep on the nursing thing. It can be so frustrating when services aren't provided as promised -- but they may as well learn now how to speak up and advocate for themselves and igh. Oh-- maybe they are good at accepting help, but if not, let them know that it is a gift to you if they will allow you to help and let you know how to best help. One thing that I'll never forget -- when Aubrie was newborn a local pastor came to visit at the request of our friends. He told me that it was a gift to others if I allow them to help because they then had the satisfaction of helping me and contributing to Aubrie's care instead of standing by helplessly not knowing what to do. About knowing faces and having a hard time keeping track of who's who online -- I find that very challenging as well. I'll love it when technology improves to where we can attach a photo with our signature line. But even a picture isn't enough -- we're also missing voice, inflection, gestures... all those things that bring your personality to communication. So know that it's hard for everyone and no one takes offense when we ask for reminders of things we think we should have remembered. Michele W Aubrie's mom 7 yrs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 Christene, Please tell Josh & Jen congratulations...they will be much happier at home, I'm sure. We found that after the long hospital stay, Kennedy really flourished at home and did a lot more. Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 yeahaaa i got that nystagness tuff its quite wierd ill be focused but not for long sometimes great that everythings doing so well for now stupid nurses we once ahd a nurse doing oru tpn and she couldnt come one night so they sent out this woman who couldnt even do that bloody stuff so of course i had to go to hosptial dont let it get to that stage thats the worst ellen > > Christene, > Please tell Josh & Jen congratulations...they will be much happier at > home, I'm sure. We found that after the long hospital stay, Kennedy really > flourished at home and did a lot more. > > > > > Home: lisaweir@... > Work: lisa.weir@... > Phone: > Web: http://ca.geocities.com/weirfamilyrogers > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 Thanks for the update. I am so glad she is home where mom can be mom and feed her however she needs fed. Seems like with the reflux and the aspiration controlled and a way to get in adequate nutrition that she will thrive. Kim > Hello everyone. Josh asked me to let everyone know that igh came home > today. She looks really good. She is so alert and wants to see everything > that is going on! I am not sure of all the technical terms (ellen, I am sure > you will fill me in on them... hehe) Her G-tube is in and they tightened her > esophagus. igh is doing SO much better just with that being done. She is > not refluxing half as much and her breathing is so much less labored. She has > to wait a few weeks until they put a " button " ?? in place of the elevated tube > she has now. I guess that will be the permenant one. Jenn is doing so well > with her feeds. To tell you the truth we (us and my mother-in-law) were a > little concerned because Josh and Jen are younger (she is 18) and we weren't > sure if they would handle all the " stuff " and take care of Kenzie. But they, > especially Jen, are doing so great! I really am impressed. I guess you don't > realize what you can handle until you have to. Well, just wanted to > update you all. Oh yeah, thank you to all of the people that gave me the > heads up about the visiting nurses. I inquired about that in the hospital on > Sunday. They still had to finalize the visits even though igh was due > home in less than 2 days. By the way, today (Tuesday) the nurse was to be at > the house for 2:00 to make sure all the hook-ups were right and to assist in > the feed, and she was a no show. Josh tried contacting them for a couple of > hours to finally reach someone at 3:15. The nurse said she was never told > that she had that appointment and she would be there shortly. I had to leave > at 4:00 and she hadn't shown up yet. Good thing Jen was paying attention at > the hospital.. Poor igh was starving!! Well, thank you all again and I > look forward to hearing about your children and all teh advances they are > achieving!! (There are so many e-mails that I forget who is who!) I am so > much better with faces. Maybe some day. Thanks for listening! > Christene(aunt to igh) > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 , Thank you for the suggestion about asking how I can help. I didn't think of it that way. They had a bit of confusion with the nurses not wshowing up when they were supposed to, but it should be getting better now. It is nice to know I am not the only one confused with all the poeple on this site! It is so awesome that the support is so large! Thank you again. Christene Aunt to igh-2 1/2 months Michele Westmaas wrote: What fabulous news!!! Now that igh is home, Josh and Jen will still need loads of support from everyone. Sometimes the community or whatever rallies around during the hospitalization but figures things are all good when the child comes home. It is really just the beginning of new challenges. Be sure Josh and Jen keep on the nursing thing. It can be so frustrating when services aren't provided as promised -- but they may as well learn now how to speak up and advocate for themselves and igh. Oh-- maybe they are good at accepting help, but if not, let them know that it is a gift to you if they will allow you to help and let you know how to best help. One thing that I'll never forget -- when Aubrie was newborn a local pastor came to visit at the request of our friends. He told me that it was a gift to others if I allow them to help because they then had the satisfaction of helping me and contributing to Aubrie's care instead of standing by helplessly not knowing what to do. About knowing faces and having a hard time keeping track of who's who online -- I find that very challenging as well. I'll love it when technology improves to where we can attach a photo with our signature line. But even a picture isn't enough -- we're also missing voice, inflection, gestures... all those things that bring your personality to communication. So know that it's hard for everyone and no one takes offense when we ask for reminders of things we think we should have remembered. Michele W Aubrie's mom 7 yrs > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca, or email info@.... 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 , We did notice that in only a few short days that igh was looking around more and seemed much more alert. Thanks for the support! Christene Weir wrote: Christene, Please tell Josh & Jen congratulations...they will be much happier at home, I'm sure. We found that after the long hospital stay, Kennedy really flourished at home and did a lot more. Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Kim, Jen is much more comforatble at home with igh. She is nervous because she does not hae that continuous care, but has been handling things just fine. The nurse " didn't know " she was suppose to go there the other day so Jen was alone the whole day with igh on day 1 home from the hospital. She did fine though. She set her feed and was able to do the suction and she was proud of herself. We were proud too. Thanks for the support!!! Christene Kim Lauger wrote: Thanks for the update. I am so glad she is home where mom can be mom and feed her however she needs fed. Seems like with the reflux and the aspiration controlled and a way to get in adequate nutrition that she will thrive. Kim > Hello everyone. Josh asked me to let everyone know that igh came home > today. She looks really good. She is so alert and wants to see everything > that is going on! I am not sure of all the technical terms (ellen, I am sure > you will fill me in on them... hehe) Her G-tube is in and they tightened her > esophagus. igh is doing SO much better just with that being done. She is > not refluxing half as much and her breathing is so much less labored. She has > to wait a few weeks until they put a " button " ?? in place of the elevated tube > she has now. I guess that will be the permenant one. Jenn is doing so well > with her feeds. To tell you the truth we (us and my mother-in-law) were a > little concerned because Josh and Jen are younger (she is 18) and we weren't > sure if they would handle all the " stuff " and take care of Kenzie. But they, > especially Jen, are doing so great! I really am impressed. I guess you don't > realize what you can handle until you have to. Well, just wanted to > update you all. Oh yeah, thank you to all of the people that gave me the > heads up about the visiting nurses. I inquired about that in the hospital on > Sunday. They still had to finalize the visits even though igh was due > home in less than 2 days. By the way, today (Tuesday) the nurse was to be at > the house for 2:00 to make sure all the hook-ups were right and to assist in > the feed, and she was a no show. Josh tried contacting them for a couple of > hours to finally reach someone at 3:15. The nurse said she was never told > that she had that appointment and she would be there shortly. I had to leave > at 4:00 and she hadn't shown up yet. Good thing Jen was paying attention at > the hospital.. Poor igh was starving!! Well, thank you all again and I > look forward to hearing about your children and all teh advances they are > achieving!! (There are so many e-mails that I forget who is who!) I am so > much better with faces. Maybe some day. Thanks for listening! > Christene(aunt to igh) > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 ellen, the nurses started off rocky but they seem to be getting on a schedule now. We won't let it get out of control though! Not when igh's life depends on it!! Talk to you soon! Thaks for the words of wisdom! Christene ellen howe wrote: yeahaaa i got that nystagness tuff its quite wierd ill be focused but not for long sometimes great that everythings doing so well for now stupid nurses we once ahd a nurse doing oru tpn and she couldnt come one night so they sent out this woman who couldnt even do that bloody stuff so of course i had to go to hosptial dont let it get to that stage thats the worst ellen > > Christene, > Please tell Josh & Jen congratulations...they will be much happier at > home, I'm sure. We found that after the long hospital stay, Kennedy really > flourished at home and did a lot more. > > > > > Home: lisaweir@... > Work: lisa.weir@... > Phone: > Web: http://ca.geocities.com/weirfamilyrogers > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Christene, It wasn't right, the nurse should've came; however, it probably gave Jen a HUGE boost to her confidence to *know* she can do it all on her own and she did do it. Not to say she shouldn't take the nursing help though, she definitely should take all the help she can get. We never had any -- we managed, but it might've been nice. Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
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