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!!

He gained a tiny bit of weight, so no tube.. FOR NOW!::

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!

Deceion made about the feeding tube..

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..

He has officially lost more weight!

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!

Don’t love my baby right now..

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.

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.

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

the future looks bleek :-(

Blog Control Center View My Blog MySpace Blog Blog Home My Subscriptions My Readers My Preferred List ~ Mommy Regina ~ Today Week Total Posts Comments Views Kudos My Controls Post New Blog View Blog Customize Blog Blog Safe Mode Blog Groups Browse Blog Groups Create Blog Group Confirm Blog Posting Here is the display of your blog posting. Click the button below to confirm and post. Date: Jan 30, 2009 more weight loss.. another week bites the dust.. So.. eicca is down to 9kg and i can feel his ribs and even his diapers are getting too big. this is heartbreaking and there are still no answers. He seems so anxious in the high chair.. he has refused everything , but a few bites of fruit each day.. We are slowing making peace with the idea of a stomach feeding tube.. but the drs are still 100% against it.. I wonder why when eicca is just slowly loosing himself.. this is hell. I sit alone in the hospital room day and night and marco tends to our life. Our pets, his job ( our only means of paying bills ) and even our grocery shopping as we must bring in our own food here.. None of that fucking matters as eicca isnt doing well. He just simply isnt doing well at all, and there is no other way to put it. We will talk with the drs on monday, but we can’t really stand to see him loose more.. the drs are all against the stomach tube, but we are seeing no other option besides going back to force feeding him again.. Oh the pain.. today the shrink asked me, who takes care of you?? It was sad, because no one does.. marco is great, but he has been at work most of the time, and i am here, sad and miserable feelign that he is just withering away.. No answers for months. almost a year.. and now i feel worse than ever!! Another weekend trapped here.. at least i go home tomorrow to pay bills.. yippe.. take care

bawled like a baby

No not just every day.. which has been happening lately, but on eicca’s first bday. We had many many people over.. neighbors, friends, lovers (ha ha) etc.. and all was fine.. eicca played much and loved the attention and gifts. then the cake cutting time came.. my friend suggested putting him in the middle of the room in the high chair, so we could all gather around him. We started singing happy bday and fucking hell.-. i lost it.. i just started seriously bawling and couldnt stop. People continued to sing, and i told myself to get a fucking grip, but it just came and came. I heard juha sigh.. or snikker, but it wasnt in a bitchy way.. he was just in awe of me being a mommy.. an overly emotional mommy and i know that melts some people’s heart.. knowing me mostly as an alcoholic bar slut., but still.. i wish i could have stopped the crying. I cant vaguely remember what happened after.. did marco blow out the candle.. fuck if i know.. but i just wanted this written in case i forgot later.. that’s mee..