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Archive for February, 2009

Yep, the worst mommy on earth.. just got him all in his winter suit, and stuck a few spoons of fruit in him, ready to go then he pukes everywhere.. where i used to have compassion and feel sad for him, i am not just angry and find myself yelling at him. At a 13 month old, i truely have no heart i guess. I think i am so worn down and beat down there is just no hope for any of us. As for other drs, we tried to get a consult at childresn’s hospital boston, but they wanted 712 dollars for a fucking consult. No fucking wonder america is so fucked up.. no we just stay here in misery and hell.. that’s life.. back to the shit, i am ignoring my oh so wanted child.. what a cunt i am!

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I am utterly convinced there are no lights at the end of this tunnel. Eicca is still refusing nearly every feed and we are back to feeding him something, usually behind the computer while he watches videos. It wont work forever, and then we are back to where we have always been.. like december in holland, him screaming while we held down his arms and shoved food into his mouth.

Last friday he was so interested in my cheese sandwich that he ate some of the cheese. The joy that filled my heart and eyes.. was indescribable.. then he vomited it all out. Like the cheese got stuck or something just didnt work.

To me, the g.tube is inevitable. I am at peace with that.He is starting to cruise, but doesnt sleep much all day and certainly doesnt eat, so where the fuck is he getting the calories from.. just explain that to me?

Tomorrow yet another big meeting with the drs. I will not go. I have nothing to say to them. After they have said that a tube is child abuse, i have no more words. We are obviously not on the same page. I dont want my child to be a 17lb 16month old.. and they are content with him.. learning to get hungry and try to find that hunger.. as they keep repeating.

Well.. after all this time.. he just isnt getting it. Either he isnt getting hungry, or doesnt have the capacity, or some other mystery, but i still feel so isolated and spend most of my days crying.

The days we do go out, it’s only after I have force fed him something so he wont freeze when we leave the house. Our marriage is suffering.. everything suffers and it isnt fair and it has to end. IT FUCKING HAS TO END SOMEDAY!

I see enough of you are reading my blog.. so thank you for that.. i hope you found the strength that i have run out of.

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home and none the wiser..

after being there 3 weeks, we have been home since friday and it’s just as bad, if not worse than it was there. We just cant get him to open his mouth at all. In a way i am in some peaceful place, because we will be monitored, but in another way, i am a mess. He took one spoon of pudding today.. that’s it! It’s 13:15 and that’s fucking it! Today the speech therapist will come at 16 to see how he is doing, but it is totally pathetic. Last week we had him eating at least a pudding and yogurt each feed with some chips, but since we got home nothing. I suppose we have to bear this, but I just cant’ see it EVER getting better. We just dont’ have the good days in reserve to accept the bad days.. so that sucks.

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week 3—

This week started ok.. he ate some pudding over the weekend, but today was another big meeting with the drs, and they are just fucking thrilled with his progress. I dont get it.. maybe i am looking through a dark tunnel for so long i cant see the light, but i dont see a small cup of pudding a day being progress.

They see that he WANTS to eat it progress.. but evenutally he will run outta weight to loose and then what??

They are so totally against the stomach tube.. but yet offer no other options than to stay here.. and stew in my own filthy clothes for 3 weeks now and what.. rot??

We will meet again on wed, but it was my idea to maybe put him in day care a few hrs a day.. not just for a break, but also for him to see other kids eat and to play with others. We will discuss more about that later.. but we are not against it. Especially since eicca is so social already, it will only enhance his social skills and hopefully improve his eating skills.

So, thats about it.. lets see how it goes.. they all have hope and guarentee it will not be 6 months before he is eating well on his own. They talk about this boy who had a stomach tube and him and his mom lived here for 6 mo in the hospital.. kill me now.. but he did leave and never came back!! And eicca isnt half as bad as him they say.. i just wonder if eicca just is hardwired differently.. just not getting hungry enough.. i dunno..

okay thanks for the support and listening. I have totally neglected amy, i know.. so please write me if you read this.. cause i will get back to you.. and others.. you know who you are that i am neglecting and i am sorry!

Lots of love, and take care
regina

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