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feeding tube is out!
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<blockquote data-quote="Jena" data-source="post: 402747" data-attributes="member: 4514"><p>hi</p><p> </p><p>so..... difficult child ate partial meals all day yesterday. was a very hard day for her. i was a bit beat up last night, she needed extra support last night so i stayed in the room with her.</p><p> </p><p>so deal was if she completed a meal with-o extreme fear and crying tube would come out!</p><p> </p><p>so today she completed a bowl of cereal two pieces of toast with butter and jelly and a large orange juice.</p><p> </p><p>tube came out! </p><p> </p><p>we're happy yet apprehensive. we've been here before. staying super positive for her sake ofcourse. doctor's said we have two choices we can either give her today and tmrw and hopefully she'll eat her meals. she doesnt' have to complete yet she has to make a good effort with ease. if so we can either send you home to n.y. and put her in the day treatment program.</p><p> </p><p>ummm winds up food phobia kids normally just go home after they complete three meals. it's that easily cured. didn't know that. that was shocking to me.</p><p> </p><p>they said because difficult child has so many other issues that it's not as easily cured she's a "unique" case. hmm how many times in 12 years have i heard that??? <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite1" alt=":)" title="Smile :)" loading="lazy" data-shortname=":)" /></p><p> </p><p>so i said ofcourse day treatment program. so we're keeping our fingers crossed she doesn't slide back and that she keeps eating. if not by monday tube will be put in again and personally that's when i'll probably melt down.</p><p> </p><p>doctor's keep telling me how are you holding up you sure your ok, you aren't upset you seem fine. nurses have been telling us how great you are with her so calm and so supportive. i said i decompartentalize super well, it's my MO. i box it, go in car at end of hospital day and i cry if i need to than meditate than go to bed and do it all over again.</p><p> </p><p>the doctor's said you have found your center here, haven't you? i said yes i have. there's been alot of stress from n.y. but it hits i get upset and i release almost immediately. not like a home.</p><p> </p><p>i said there are no dishes to do, dogs to walk, husband to stay up with. i've come back into my center here bigtime. this trip with her, has strengthened me in a way that i didnt' think it could. i knew i was strong before yet this is something that's hard to put into words.</p><p> </p><p>im not a religious person, i'm more spiritual. yet i gotta tell you the truth my faith's been renewed since here. i visit the chapel almost everyday to sit quietly meditate pray etc.</p><p> </p><p>i'm humbled and feel lucky when i see these cancer ridden kids walking through the hallway smiling at me, or i do an art project with them. </p><p> </p><p>life really has a way of fallling in line when you can sit with a child getting a chemo drip who is smiling and excited about the color red marker. </p><p> </p><p>don't get me wrong i have my moments, i do cry on occassion yet my inner self is slowly renewing.</p><p> </p><p>just had to share the difficult child news. alot better than my ny drama <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite1" alt=":)" title="Smile :)" loading="lazy" data-shortname=":)" /></p><p> </p><p>her'es hoping she keeps eating. yet whatever is to be will be.</p></blockquote><p></p>
[QUOTE="Jena, post: 402747, member: 4514"] hi so..... difficult child ate partial meals all day yesterday. was a very hard day for her. i was a bit beat up last night, she needed extra support last night so i stayed in the room with her. so deal was if she completed a meal with-o extreme fear and crying tube would come out! so today she completed a bowl of cereal two pieces of toast with butter and jelly and a large orange juice. tube came out! we're happy yet apprehensive. we've been here before. staying super positive for her sake ofcourse. doctor's said we have two choices we can either give her today and tmrw and hopefully she'll eat her meals. she doesnt' have to complete yet she has to make a good effort with ease. if so we can either send you home to n.y. and put her in the day treatment program. ummm winds up food phobia kids normally just go home after they complete three meals. it's that easily cured. didn't know that. that was shocking to me. they said because difficult child has so many other issues that it's not as easily cured she's a "unique" case. hmm how many times in 12 years have i heard that??? :) so i said ofcourse day treatment program. so we're keeping our fingers crossed she doesn't slide back and that she keeps eating. if not by monday tube will be put in again and personally that's when i'll probably melt down. doctor's keep telling me how are you holding up you sure your ok, you aren't upset you seem fine. nurses have been telling us how great you are with her so calm and so supportive. i said i decompartentalize super well, it's my MO. i box it, go in car at end of hospital day and i cry if i need to than meditate than go to bed and do it all over again. the doctor's said you have found your center here, haven't you? i said yes i have. there's been alot of stress from n.y. but it hits i get upset and i release almost immediately. not like a home. i said there are no dishes to do, dogs to walk, husband to stay up with. i've come back into my center here bigtime. this trip with her, has strengthened me in a way that i didnt' think it could. i knew i was strong before yet this is something that's hard to put into words. im not a religious person, i'm more spiritual. yet i gotta tell you the truth my faith's been renewed since here. i visit the chapel almost everyday to sit quietly meditate pray etc. i'm humbled and feel lucky when i see these cancer ridden kids walking through the hallway smiling at me, or i do an art project with them. life really has a way of fallling in line when you can sit with a child getting a chemo drip who is smiling and excited about the color red marker. don't get me wrong i have my moments, i do cry on occassion yet my inner self is slowly renewing. just had to share the difficult child news. alot better than my ny drama :) her'es hoping she keeps eating. yet whatever is to be will be. [/QUOTE]
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