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Archive for May, 2009

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!!

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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!

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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..

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