Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 - So good news and bad news -- and a plan for the future. Overall -- good, it seems. Will school continue to see her even when in hospital -- assuming she's up to it? What a lil' bundle of energy to be ready to learn and learn and learn even in the midst of all this illness! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I hope she gets better and I will be praying for her!! Crystal and Eva (11 month charger) > > went to see her pulmonologist yesterday and we had another chest x-ray done. She still has some atelectasis, but it is much better than last Thursday. That is the good news. The bad news is that she went one night without needing any O2 and then last night needed it again. If she starts to get worse without the pulmozyme, then we are going to have to put her back in the hospital and she will have to stay there until she no longer needs the pulmozyme. She had only missed 3 doses when we went for the x-ray. Lets just hope she continues to improve. We have now decided that anytime she needs the pulmozyme, we are going to keep her in the hospital until we are sure she no longer needs it. > > Her teacher came out and started working with her yesterday. That went really well and she was signing new words last night from the one hour session she had. Her pulmonologist said that he will not release her to return to school until she gets her central line out, so she is out for a couple more weeks. > > > Mom to 3 yrs CHARGE > > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I hope she gets better and I will be praying for her!! Crystal and Eva (11 month charger) > > went to see her pulmonologist yesterday and we had another chest x-ray done. She still has some atelectasis, but it is much better than last Thursday. That is the good news. The bad news is that she went one night without needing any O2 and then last night needed it again. If she starts to get worse without the pulmozyme, then we are going to have to put her back in the hospital and she will have to stay there until she no longer needs the pulmozyme. She had only missed 3 doses when we went for the x-ray. Lets just hope she continues to improve. We have now decided that anytime she needs the pulmozyme, we are going to keep her in the hospital until we are sure she no longer needs it. > > Her teacher came out and started working with her yesterday. That went really well and she was signing new words last night from the one hour session she had. Her pulmonologist said that he will not release her to return to school until she gets her central line out, so she is out for a couple more weeks. > > > Mom to 3 yrs CHARGE > > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 - Don't quote me...but I think the school is required to have her therapy at home while she is out of school. I know you mentioned that her teacher came by your house, but I would double check to see if she can get all of her services at home. I have a friend here in Chicago who has a child who is getting all of his services at home due to medical fragility and I think your situation would apply even though it will be short term. Hope she is feeling better soon. Jody - mom to Ethan (3.5 yrs- ChARGE) and (6.5 yrs) Lee wrote: went to see her pulmonologist yesterday and we had another chest x-ray done. She still has some atelectasis, but it is much better than last Thursday. That is the good news. The bad news is that she went one night without needing any O2 and then last night needed it again. If she starts to get worse without the pulmozyme, then we are going to have to put her back in the hospital and she will have to stay there until she no longer needs the pulmozyme. She had only missed 3 doses when we went for the x-ray. Lets just hope she continues to improve. We have now decided that anytime she needs the pulmozyme, we are going to keep her in the hospital until we are sure she no longer needs it. Her teacher came out and started working with her yesterday. That went really well and she was signing new words last night from the one hour session she had. Her pulmonologist said that he will not release her to return to school until she gets her central line out, so she is out for a couple more weeks. Mom to 3 yrs CHARGE --------------------------------- New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 - Don't quote me...but I think the school is required to have her therapy at home while she is out of school. I know you mentioned that her teacher came by your house, but I would double check to see if she can get all of her services at home. I have a friend here in Chicago who has a child who is getting all of his services at home due to medical fragility and I think your situation would apply even though it will be short term. Hope she is feeling better soon. Jody - mom to Ethan (3.5 yrs- ChARGE) and (6.5 yrs) Lee wrote: went to see her pulmonologist yesterday and we had another chest x-ray done. She still has some atelectasis, but it is much better than last Thursday. That is the good news. The bad news is that she went one night without needing any O2 and then last night needed it again. If she starts to get worse without the pulmozyme, then we are going to have to put her back in the hospital and she will have to stay there until she no longer needs the pulmozyme. She had only missed 3 doses when we went for the x-ray. Lets just hope she continues to improve. We have now decided that anytime she needs the pulmozyme, we are going to keep her in the hospital until we are sure she no longer needs it. Her teacher came out and started working with her yesterday. That went really well and she was signing new words last night from the one hour session she had. Her pulmonologist said that he will not release her to return to school until she gets her central line out, so she is out for a couple more weeks. Mom to 3 yrs CHARGE --------------------------------- New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 jody i agree with you there ive had home help and hosptial help and school corodinated it hope baley improves ellen > > - Don't quote me...but I think the school is required to have her > therapy at home while she is out of school. I know you mentioned that her > teacher came by your house, but I would double check to see if she can get > all of her services at home. I have a friend here in Chicago who has a > child who is getting all of his services at home due to medical fragility > and I think your situation would apply even though it will be short term. > Hope she is feeling better soon. > > Jody - mom to Ethan (3.5 yrs- ChARGE) and (6.5 yrs) > Lee wrote: > went to see her pulmonologist yesterday and we had another chest > x-ray done. She still has some atelectasis, but it is much better than last > Thursday. That is the good news. The bad news is that she went one night > without needing any O2 and then last night needed it again. If she starts to > get worse without the pulmozyme, then we are going to have to put her back > in the hospital and she will have to stay there until she no longer needs > the pulmozyme. She had only missed 3 doses when we went for the x-ray. Lets > just hope she continues to improve. We have now decided that anytime she > needs the pulmozyme, we are going to keep her in the hospital until we are > sure she no longer needs it. > > Her teacher came out and started working with her yesterday. That went > really well and she was signing new words last night from the one hour > session she had. Her pulmonologist said that he will not release her to > return to school until she gets her central line out, so she is out for a > couple more weeks. > > > Mom to 3 yrs CHARGE > > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC for low, > low rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 jody i agree with you there ive had home help and hosptial help and school corodinated it hope baley improves ellen > > - Don't quote me...but I think the school is required to have her > therapy at home while she is out of school. I know you mentioned that her > teacher came by your house, but I would double check to see if she can get > all of her services at home. I have a friend here in Chicago who has a > child who is getting all of his services at home due to medical fragility > and I think your situation would apply even though it will be short term. > Hope she is feeling better soon. > > Jody - mom to Ethan (3.5 yrs- ChARGE) and (6.5 yrs) > Lee wrote: > went to see her pulmonologist yesterday and we had another chest > x-ray done. She still has some atelectasis, but it is much better than last > Thursday. That is the good news. The bad news is that she went one night > without needing any O2 and then last night needed it again. If she starts to > get worse without the pulmozyme, then we are going to have to put her back > in the hospital and she will have to stay there until she no longer needs > the pulmozyme. She had only missed 3 doses when we went for the x-ray. Lets > just hope she continues to improve. We have now decided that anytime she > needs the pulmozyme, we are going to keep her in the hospital until we are > sure she no longer needs it. > > Her teacher came out and started working with her yesterday. That went > really well and she was signing new words last night from the one hour > session she had. Her pulmonologist said that he will not release her to > return to school until she gets her central line out, so she is out for a > couple more weeks. > > > Mom to 3 yrs CHARGE > > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC for low, > low rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 jody i agree with you there ive had home help and hosptial help and school corodinated it hope baley improves ellen > > - Don't quote me...but I think the school is required to have her > therapy at home while she is out of school. I know you mentioned that her > teacher came by your house, but I would double check to see if she can get > all of her services at home. I have a friend here in Chicago who has a > child who is getting all of his services at home due to medical fragility > and I think your situation would apply even though it will be short term. > Hope she is feeling better soon. > > Jody - mom to Ethan (3.5 yrs- ChARGE) and (6.5 yrs) > Lee wrote: > went to see her pulmonologist yesterday and we had another chest > x-ray done. She still has some atelectasis, but it is much better than last > Thursday. That is the good news. The bad news is that she went one night > without needing any O2 and then last night needed it again. If she starts to > get worse without the pulmozyme, then we are going to have to put her back > in the hospital and she will have to stay there until she no longer needs > the pulmozyme. She had only missed 3 doses when we went for the x-ray. Lets > just hope she continues to improve. We have now decided that anytime she > needs the pulmozyme, we are going to keep her in the hospital until we are > sure she no longer needs it. > > Her teacher came out and started working with her yesterday. That went > really well and she was signing new words last night from the one hour > session she had. Her pulmonologist said that he will not release her to > return to school until she gets her central line out, so she is out for a > couple more weeks. > > > Mom to 3 yrs CHARGE > > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC for low, > low rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Jody, You are right in that is able to receive services at home. The reason being is that she is home due to a medical necessity. But it also must be known that it might be hard for the therapists as they already have set schedules. You might have to overlap or be inventive. I also would take into consideration that she isn't feeling well and shouldn't be doing too much. Healing is now at the top of the list. You don't want to go backwards but you also don't want to stress her. Hard, isn't it. I am sure they will figure it all out if the teacher has already come to the house. Sounds like they care. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Jody, You are right in that is able to receive services at home. The reason being is that she is home due to a medical necessity. But it also must be known that it might be hard for the therapists as they already have set schedules. You might have to overlap or be inventive. I also would take into consideration that she isn't feeling well and shouldn't be doing too much. Healing is now at the top of the list. You don't want to go backwards but you also don't want to stress her. Hard, isn't it. I am sure they will figure it all out if the teacher has already come to the house. Sounds like they care. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
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