Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Amy, Sounds like Brittney has a hard road over the next two weeks. We will be thinking about her and you, too! Keep us posted. Janet Wife to Matt Mom to & (CHaRGEr) 7, nne 2 1/2 Mom to 16 months. Weymouth, Massachusetts, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Amy, I hear you! This fall has been out of control as far as meetings, appts. etc. and I feel awful because I have had to have my daycare parents find alternate care. Because I have my kids to find care for, I always offer them that alternative. Sometimes they take me up, but most times they don't because they do have back up. Janet Wife to Matt Mom to & (CHaRGEr) 7, nne 2 1/2 Mom to 16 months. Weymouth, Massachusetts, USA <A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</ A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Hi Sheryl, Just want to wish you all good luck on wednesday. You are all on my mind ! (monique@...) Mom of Bart (1-8-96, charge) and Siebe (3-9-98/3-9-98, HLHS) surgery time again From: SDoolit272@... Hi all, Wanted to let you know that will be going for surgery on Wednesday. Going to have a few things done while we are there. First, the audiologist is going to do the ABR test. I know this is not always accurate but it is a start since Jess won't respond at all in a sound booth. She wouldn't even go into the office the last time we tried. Then the GI is going to do an endoscopy to make sure everything is healed from her surgery in March. That is the one where she had her esophagus disconnected. Then the ENT is going to check the ears and put tubes in AGAIN if needed, she doesn't let him look in the office. He is also going to check her atresia. One side we know has been closed for the last year but she had sooooo much trouble after he repaired it in 95 he wanted to wait if it wasn't causing trouble. We think the other side has gotten very narrow and it's time to open these up again. He is also going to scope the vocal cords and trachea. She has been having blood in her secretions lately. She pushes on her throat a lot to swallow and spit so we think she has irritated something, so hopefully one of the scopes will tell us where it is coming from. We are hoping to come home on Thursday but knowing and how she loves to take things at her own pace, we never know. Sheryl, Mom to Mitch 13 and 13 CHARGE For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 We'll be keeping in our thoughts this week, hoping that all goes smoothly and that she's headed home on Thursday. Michele, mom to (4) & Berkeley (5 mo.) CHARgE surgery time again From: SDoolit272@... Hi all, Wanted to let you know that will be going for surgery on Wednesday. Going to have a few things done while we are there. First, the audiologist is going to do the ABR test. I know this is not always accurate but it is a start since Jess won't respond at all in a sound booth. She wouldn't even go into the office the last time we tried. Then the GI is going to do an endoscopy to make sure everything is healed from her surgery in March. That is the one where she had her esophagus disconnected. Then the ENT is going to check the ears and put tubes in AGAIN if needed, she doesn't let him look in the office. He is also going to check her atresia. One side we know has been closed for the last year but she had sooooo much trouble after he repaired it in 95 he wanted to wait if it wasn't causing trouble. We think the other side has gotten very narrow and it's time to open these up again. He is also going to scope the vocal cords and trachea. She has been having blood in her secretions lately. She pushes on her throat a lot to swallow and spit so we think she has irritated something, so hopefully one of the scopes will tell us where it is coming from. We are hoping to come home on Thursday but knowing and how she loves to take things at her own pace, we never know. Sheryl, Mom to Mitch 13 and 13 CHARGE For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Janet, And why do these parents not have back up. I don't get it. This mom knew me before she hired me. I give them an alternative as well. But my kids come first. I can't denie Brittney her care becuz this mom doesn't have a back up. Amy mom to brittney 7 CHARgE, megan 4 robert 3 Re: surgery time again > From: JPM4189@... > > Amy, > > I hear you! This fall has been out of control as far as meetings, appts. > etc. and I feel awful because I have had to have my daycare parents find > alternate care. Because I have my kids to find care for, I always offer them > that alternative. Sometimes they take me up, but most times they don't > because they do have back up. > > Janet > > Wife to Matt > Mom to & (CHaRGEr) 7, nne 2 1/2 > Mom to 16 months. > > Weymouth, Massachusetts, USA > > <A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</ > A> > > > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Sheryl Good luck with . I know how much we all dread those hospital stays. You and will be in my prayers. Robin Mom to Ally (14 mths) ChaRge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 Amy, I know what you mean about having back up. I let my prospective parents know up front that I use my husband as back up, and that I will give them as much notice as possible, but the fact is I have children who go to the doctor more frequently than most. I had one young parent who was stationed at our now defunct naval air station in So. Weymouth. She had no one and I felt so bad for her. I charged her the least I could and it was still 1/2 of her check. She had no back up, her family lived in CO. I remember bringing her baby to 's doctor appts. She had originally planned on a hardship discharge but ended up with a transfer to TX where the cost of living is much less than up here in New England. Janet Wife to Matt Mom to & (CHaRGEr) 7, nne 2 1/2 Mom to 16 months. Weymouth, Massachusetts, USA <A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</ A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 Janet, I don't mind taking all the kids to appts if I need to. But there are times when it's impossible to allow kids to go to certain appts. I enjoy the kids but can't always let 'em go with me. Amy Re: surgery time again > From: JPM4189@... > > Amy, > > I know what you mean about having back up. I let my prospective parents know > up front that I use my husband as back up, and that I will give them as much > notice as possible, but the fact is I have children who go to the doctor more > frequently than most. > > I had one young parent who was stationed at our now defunct naval air station > in So. Weymouth. She had no one and I felt so bad for her. I charged her > the least I could and it was still 1/2 of her check. She had no back up, her > family lived in CO. I remember bringing her baby to 's doctor appts. > She had originally planned on a hardship discharge but ended up with a > transfer to TX where the cost of living is much less than up here in New > England. > > Janet > > Wife to Matt > Mom to & (CHaRGEr) 7, nne 2 1/2 > Mom to 16 months. > > Weymouth, Massachusetts, USA > > <A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</ > A> > > > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
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