Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Amy, What I have learned in the last year is that the doctors give you the worst case senaro and that way when it does get better you are happy and not disappointed.Heck when I was pregnant with Eva they told me she was going to die before birth so I dont stress when they give me bad news to much. I guess they are afraid you will sue them if they tell you something that may not happen. But when Eva was born and we were told she would not be able to eat I was scared she would never eat by mouth. But here she is eatting 3rd baby foods. Just keep working on it and dont get upset if one day he is just not in the mood for the bottle or food it happens. Hugs, Crystal and Eva (10 month charger) > > I know there are a million messages a day, so this one probably just got lost...but I would LOVE anyone's input on this issue. I was pretty thrilled that he passed the study...I was convinced (per doctors perhaps) that he might not be able to for a very long time. Is that common with CHARGE? > > Thanks everyone! > *And as an update, yesterday he did let me put the spoon back in his mouth and he did accept some food. I had tears in my eyes b/c I was smiling and laughing with joy so hard!!! > > Note: forwarded message attached. > > > Amy McKinley > Mom to MIGHTY MAX (CHARGE, 8 months old, 6 months corrected) > maxupdate.blogspot.com > > --------------------------------- > Yahoo! Mail > Bring photos to life! New PhotoMail makes sharing a breeze. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Amy, What I have learned in the last year is that the doctors give you the worst case senaro and that way when it does get better you are happy and not disappointed.Heck when I was pregnant with Eva they told me she was going to die before birth so I dont stress when they give me bad news to much. I guess they are afraid you will sue them if they tell you something that may not happen. But when Eva was born and we were told she would not be able to eat I was scared she would never eat by mouth. But here she is eatting 3rd baby foods. Just keep working on it and dont get upset if one day he is just not in the mood for the bottle or food it happens. Hugs, Crystal and Eva (10 month charger) > > I know there are a million messages a day, so this one probably just got lost...but I would LOVE anyone's input on this issue. I was pretty thrilled that he passed the study...I was convinced (per doctors perhaps) that he might not be able to for a very long time. Is that common with CHARGE? > > Thanks everyone! > *And as an update, yesterday he did let me put the spoon back in his mouth and he did accept some food. I had tears in my eyes b/c I was smiling and laughing with joy so hard!!! > > Note: forwarded message attached. > > > Amy McKinley > Mom to MIGHTY MAX (CHARGE, 8 months old, 6 months corrected) > maxupdate.blogspot.com > > --------------------------------- > Yahoo! Mail > Bring photos to life! New PhotoMail makes sharing a breeze. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Amy, What I have learned in the last year is that the doctors give you the worst case senaro and that way when it does get better you are happy and not disappointed.Heck when I was pregnant with Eva they told me she was going to die before birth so I dont stress when they give me bad news to much. I guess they are afraid you will sue them if they tell you something that may not happen. But when Eva was born and we were told she would not be able to eat I was scared she would never eat by mouth. But here she is eatting 3rd baby foods. Just keep working on it and dont get upset if one day he is just not in the mood for the bottle or food it happens. Hugs, Crystal and Eva (10 month charger) > > I know there are a million messages a day, so this one probably just got lost...but I would LOVE anyone's input on this issue. I was pretty thrilled that he passed the study...I was convinced (per doctors perhaps) that he might not be able to for a very long time. Is that common with CHARGE? > > Thanks everyone! > *And as an update, yesterday he did let me put the spoon back in his mouth and he did accept some food. I had tears in my eyes b/c I was smiling and laughing with joy so hard!!! > > Note: forwarded message attached. > > > Amy McKinley > Mom to MIGHTY MAX (CHARGE, 8 months old, 6 months corrected) > maxupdate.blogspot.com > > --------------------------------- > Yahoo! Mail > Bring photos to life! New PhotoMail makes sharing a breeze. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Amy- Remind me of your question. I'm sorry if I missed this earlier. I gather that Max passed his swallow study and now you are wondering how to proceed with getting him to eat? Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Fwd: SWALLOW STUDY I know there are a million messages a day, so this one probably just got lost...but I would LOVE anyone's input on this issue. I was pretty thrilled that he passed the study...I was convinced (per doctors perhaps) that he might not be able to for a very long time. Is that common with CHARGE? Thanks everyone! *And as an update, yesterday he did let me put the spoon back in his mouth and he did accept some food. I had tears in my eyes b/c I was smiling and laughing with joy so hard!!! Note: forwarded message attached. Amy McKinley Mom to MIGHTY MAX (CHARGE, 8 months old, 6 months corrected) maxupdate.blogspot.com --------------------------------- Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Amy- Remind me of your question. I'm sorry if I missed this earlier. I gather that Max passed his swallow study and now you are wondering how to proceed with getting him to eat? Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Fwd: SWALLOW STUDY I know there are a million messages a day, so this one probably just got lost...but I would LOVE anyone's input on this issue. I was pretty thrilled that he passed the study...I was convinced (per doctors perhaps) that he might not be able to for a very long time. Is that common with CHARGE? Thanks everyone! *And as an update, yesterday he did let me put the spoon back in his mouth and he did accept some food. I had tears in my eyes b/c I was smiling and laughing with joy so hard!!! Note: forwarded message attached. Amy McKinley Mom to MIGHTY MAX (CHARGE, 8 months old, 6 months corrected) maxupdate.blogspot.com --------------------------------- Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Hi Amy- I noticed your post end with " forwarded message attached " . I believe this list serve does not allow attachments to prevent the accidental proliferation of viruses. Could you copy and paste the forwarded message? As for the swallow study - I have found in 's life that the studies give us a baseline, but do not at all tell us what is possible. His swallowing tests are very good - and he takes very little by mouth. His hearing tests are very poor, and he uses his residual hearing extraordinarily well. Your intuition will be your very best guide ) And I learned that the more I practiced relying on my intuition, the better I became at reading it, and heeding it when it spoke to me unasked. ) Smiles ~! Yuka Fwd: SWALLOW STUDY > I know there are a million messages a day, so this one probably just got lost...but I would LOVE anyone's input on this issue. I was pretty thrilled that he passed the study...I was convinced (per doctors perhaps) that he might not be able to for a very long time. Is that common with CHARGE? > > Thanks everyone! > *And as an update, yesterday he did let me put the spoon back in his mouth and he did accept some food. I had tears in my eyes b/c I was smiling and laughing with joy so hard!!! > > Note: forwarded message attached. > > > Amy McKinley > Mom to MIGHTY MAX (CHARGE, 8 months old, 6 months corrected) > maxupdate.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Hi Amy- I noticed your post end with " forwarded message attached " . I believe this list serve does not allow attachments to prevent the accidental proliferation of viruses. Could you copy and paste the forwarded message? As for the swallow study - I have found in 's life that the studies give us a baseline, but do not at all tell us what is possible. His swallowing tests are very good - and he takes very little by mouth. His hearing tests are very poor, and he uses his residual hearing extraordinarily well. Your intuition will be your very best guide ) And I learned that the more I practiced relying on my intuition, the better I became at reading it, and heeding it when it spoke to me unasked. ) Smiles ~! Yuka Fwd: SWALLOW STUDY > I know there are a million messages a day, so this one probably just got lost...but I would LOVE anyone's input on this issue. I was pretty thrilled that he passed the study...I was convinced (per doctors perhaps) that he might not be able to for a very long time. Is that common with CHARGE? > > Thanks everyone! > *And as an update, yesterday he did let me put the spoon back in his mouth and he did accept some food. I had tears in my eyes b/c I was smiling and laughing with joy so hard!!! > > Note: forwarded message attached. > > > Amy McKinley > Mom to MIGHTY MAX (CHARGE, 8 months old, 6 months corrected) > maxupdate.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Hi Amy, Congrats on Max's progress! I think it is so specific to each child that it's hard to say what will happen with one will happen with another--but it's all we have to go on. Swallowing issues are very common in CHARGE--passing the swallow study could mean different things. Did they say he had no swallowing issues at all or that he didn't aspirate but did have lack of coordination? The latter is what I hear the most. It is joyful for sure when our kids make progress. I can relate to your joyful tears--may you have many more! , mom to Zachary 4.5 years and Carmen 20 months (CHARGE) > > I know there are a million messages a day, so this one probably just got lost...but I would LOVE anyone's input on this issue. I was pretty thrilled that he passed the study...I was convinced (per doctors perhaps) that he might not be able to for a very long time. Is that common with CHARGE? > > Thanks everyone! > *And as an update, yesterday he did let me put the spoon back in his mouth and he did accept some food. I had tears in my eyes b/c I was smiling and laughing with joy so hard!!! > > Note: forwarded message attached. > > > Amy McKinley > Mom to MIGHTY MAX (CHARGE, 8 months old, 6 months corrected) > maxupdate.blogspot.com > > --------------------------------- > Yahoo! Mail > Bring photos to life! New PhotoMail makes sharing a breeze. > > Quote Link to comment Share on other sites More sharing options...
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