Hello everyone, life just doesnt get easier. We returned from a much needed trip to the states, and that was nice etc, but Eicca isnt eating.He didnt eat well the whole trip, but learned how to walk, which is great. The passed few days now have been extremely trying, and I am looking longinly forward to the feeding tube and or day care helping him out.

He got accepted to the one close by so he can start in August and the play picnics will start then as well. Should either one of them not help sufficiently, then the fucking tube is going in, period! I for one am utterly sick of the fighting, refusal and now my favorite spitting out of food. I’ve fucking had it, and welcome any kind of relief to be honest, be that in day care or any other form.

So, until then we are still in limbo.. but this time, I am playing more hard ball. Eicca has a stricter bed time routine, including a timer to announce it’s sleepy time, and we started implementing a short time out for when he rips his bib off, which he is starting to do more and more often.. not a good sign thus.. But he needs some discipline.

Lastly, we decided not to only offer him pudding anymore. I for one am sick of investing in the pudding factory it seems. He can have yogurt and other fruits etc, but unless its the last meal of the day and he hasnt eaten a thing, then no pudding will be offered.  He will simply starve, and I know we havent allowed that before, but feeding him only pudding ( which he even most of the time refuses ) is in my opinion just delaying the inevitable.-. tube for another few weeks or months.

Now we will feed him what we feel should be given, he will refuse, he will loose weight and he will get that fucking feeding tube.. nuff said. thanks for listening!


12th of August

So the date is set.. we have regretted this decision not to put the tube as he has not eaten in 4 days,. Not a bite, not a sip of anything. I have started to syringe juice and milk into his mouth.

Honestly we have had the anti.depressants thrown around, but when things are okay, i dont feel depressed. It’s just when they are shit that things feel like shit.

I honestly dont believe there is real help for us. I have no clue if feeding therapy somewhere in the world would be available or even help, or if we are looking at a 15 year old with a tube.

Frankly though my dears i dont give a flying fuck if he is 15 with a tube. He will be happy, healthy, growing and handling his tube himself.. right now we just need there to be growth.. development and have progress.

He is lighter than he was last December. Time has stood still, and that can’t be right.

thank you all for the support!!

But it is fucking coming. I am at this nearly 16 months.. all day every day, and i am so tired. I can’t get him to eat OR DRINK a thing all day.. i try to let him play with food, i try to be the best mom i can be, but i am so angry and stressed and i can see him not getting any bigger and it’s just horrible. I feel sick. I dread the trip in a way.. i have to deal with all this feeding stress alone.. my grandpa cant’ help, my mom is great, but totally useless in this case, my big man is busy working on HIS things, so stays behind for a few weeks, so it’s just me.. it’s always just me and i am so tired of it.

I dare to say i want him in day care, but i think i have to. To be a BETTER mom to him, i cant deal with his little non eating face all day.. i just cant’. He’s only sweet sleeping in my arms or playing with the dog, but my heart breaks looking at him.. because he doent want to eat. He fucking can..

He runs over to me pushing his walker as he isnt walking on his own yet.. and he is 16 months old.. but he runs over to me and smiles and dances to the killers playing on the radio and continues running ( burning calories ) on his way.. it’s heartbreaking.. i need help!

So, we have a date set. On May the 18th my son, who we hoped, dreamed and prayed for will be getting his stomach feeding tube, or g.tube as they say.

After months of struggling and with him actually loosing weight the last few times at the doctors we have INSISTED it is just time.

The only down fall is that our trip to see my grandpa, my 82 year old grandpa who I adore and my parents who are coming to sf from maui, will now have to be canceled as our tube placement is just a few weeks before the leaving date.

We really feel at this time, that with him being such an amazing human being. So, happy and so social-.on our first vacation, that was to Boston in April, he waved hi to everyone on the street and brought smiles to Bostonians everywhere.

He just was a nightmare to feed. We’d go hours, then try in public, like the new england aquarium or the cheer’s bar just to get a few bite in him, while everyone delighted in how gorgeous ‘she’ is. We’d correct them, say it’s a boy, and try to distract him more to get a few bites in him..

The idea crossed my mind.. me, alone in sf while big man stays here finishing his studies, how on earth will i feed this child? How will i keep him from dehydrating and from getting sick? I cant i just cant.

Then we weighed him, he lost more weight so the drs said they dont totally agree with our decision as we have not YET given Eicca the chance to be hungry on his own. He has to ‘find’ his hunger.–.as fucking if. As fucking IF he needs to find it, when it has been lost since birth, for fuck’s sake..

I can go on and on, but reading back on my history and the history of other hopeful moms all i can say is that we ARE so blessed.

2 years ago, on May day, Beltane, we built a small fire and wished for this baby. I wished for this boy for years and by golly he is here, he is amazing and he will be a tube fed baby,but he will not be any different than any other baby.

thank you for listening..

So.. eicca has lost weight 😦 We checked today before we leave for Boston and he is down to 9kg. It’s sad and horrible to think that when we get back in 3 weeks he could really need that tube, but we are happy it is there for us to keep him healthy. THank you for the support!

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!

Will this shit ever end?

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.