He's probably getting about 10-12 oz of formula a day, with little or no solid food, and the rest BM. We wanted to hold off on solids for at least a year, but when it became apparent that she was not making enough, we tried to introduce them. No go. His stomach is probably a minefield from all the drugs. He was keeping things down for about 30-45 minutes and then puking them back up again. His ped wanted a swallow study, but we declined. I doubt there is anything wrong structurally... he just isn't ready because his gut is still so messed up. So he probably won't get many solids for quite some time. He does some cheerios and he seems to handle squash okay... but it's not a meal by any means... cheerios are mostly for distraction!
She still says she wants to wean him at a year, and I am not arguing. If they make it to a year, he's gotten more than more kids do.
Right now she occasionally has a bite of this or that with eggs in it. He rarely reacts to her having just a small amount... a bite of cookie, a scoop of ice cream. And getting just a few things here and there help her stear clear for the most part.
The reason we take him to the doctor often is basically (at this point)for documentation. Can you imagine if he hadn't been seeing so many doctors before, and we just showed up at a hospital with a child with NO SKIN? Yeah, we would have been in jail. So now we go just to GET IT IN WRITING that we are doing all we can for him and that his skin ailments are a normal (ha ha ha) result of his medical problems. Right now he sees his chiro once a week and that is it. Down from twice a week with the chiro, once with his ped, twice with his dermatologist, and once with his immunologist. WEEKLY.
Charlie has seen naturopaths... and chiropractors.. and hematologists, oncologists, epidemiologists, allergists, immunologists, every dermatologist in the Tampa Bay area... if it ends with -ist, he's probably seen one!
Right now, we KNOW- Severe eczema, staph allergy (staph is everywhere, including being naturally produced by the body... this makes him allergic to his own skin), severe egg allergy, penicillin allergy, cephlasporin allergy, Macrolides allergy, latex allergy (and all it's accompanying foods... avocado, banana, etc), primary immunodeficiency, sun sensitivity... probably something I'm forgetting because it's very late
We/his doctors SUSPECT- Delta Storage Pool Deficiency. Although as each day goes by, I think less and less that he has that. But we won't know until he's older.
He's been diagnosed/undiagnosed with- leukemia, Wiskott-Aldrich, Job syndrome, Hermansky-Pudlak syndrome (though that's still on the back burner), and G-d knows what else.
Our daily routine is- Bleach EVERYTHING. All hard surfaces. EVERY DAY. All soft surfaces in plastic encasements that get sprayed with bleach solution. Bleach the baby ONCE a day (diluted bleach bath... we just cut out his morning bleach bath, and he's got some spots, but we're hoping to be able to keep it out), soak the baby in olive oil once a day (just cut back to once a day). Wash all the linens in hot, dry on high, and then throw in the freezer. Wash his diapers twice on hot, bleach once a week or so. Slather him in vaseline (yes, I know all the horror stories, but it's the only thing that works), elta, Elocon, and triamcinolone numerous times a day. He gets atarax once a day, and right now that is his ONLY oral med (OMG I am so thrilled... only ONE oral med ONCE a day!!!) because he is always in some state of histamine reaction, because of the staph. He has only been on oral steroids ONCE and I NEVER want to do it again. But it was a requirement of one of his tests.
That's the short part of it. I could probably type an eight page booklet if you were bored and wanted to read it
We've dealt with this since birth. And for 6 months had no diagnosis whatsoever. We've been told more than once that he was probably going to die. But, he never did! He's been hospitalized, medicated, tested, biopsied, studied... we've blown through our savings, taken out a third mortgage, borrowed money from everyone, taken charity from strangers. Eventually he ended up on Medicaid because his insurance company dropped him. That was tough because he doesn't qualify if we list myself as his parent. Although legally I am not his parent. But if I want ths rights, we need to accept the responsibiliies, right? But eventually (and with the social worker insisting!) we listed my partner as a single parent (which she legally is) to get him medical coverage. We get WIC for his formula, which costs about $2 per fluid ounce. They pay for half of it.
Having a sickish kid sucks, but he is the best kid I could hope for. He's worth everything and then ten times more. And he's healthy today, which is all I can ask for.
If you want to see his pictures, the password is chuzzle (click on his name in my sig)
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His skin looks so much better. So good. I am so happy for you and him; he must be much more comfortable.
