osteopathy

today, isaac received an osteopathic treatment. it was interesting. my mother's cousin and his wife live up in tacoma, washington. they are both doctors. corinne, the wife, is an osteopath obgyn doctor. she recommended a DO (doctor of osteopathy) here in Portland. and she also mentioned she would be attending a retreat here in portland this weekend, and that maybe she could get us to come and have isaac evaluated. so she called this morning saying we could come over. i hopped in the car with omar and isaac and headed east on 84 to this retreat that overlooked the columbia river. it was gorgeous, even on a dour rainy day like today.

corinne and the doctor who she recommended we see (paul) listened to the isaac story. then corinne brought us into this really big room with big windows and a blazing fireplace. it was filled with massage tables. it was quiet and relaxing. felt like you could only talk in whispers. we laid isaac down on the table. she placed her hands on his back, between the ribs, behind his neck, the lower part of his scalp, the top of his head. she applied some pressure on his cheeks right above the jaw near his nose. he didn't seem to like that too much. whatever she was doing seemed very subtle. paul showed up and wrapped his hands around isaac's middle. another DO did something (and this was when isaac was sitting up) where touched isaac's solar plexus and his face and somehow that made isaac breathe easier. hey! now there was something! isaac's got some blockages.

the idea is he's experienced some trauma in his short life. the birth, because of the long labor, is considered traumatic. the intense uterine contractions ramming his skull down into my pelvis and squeezing/pushing his sacrum for well over 15 hours (i'm talking about the every 3 minute type contractions i had the night before he was born) probably is a good candidate for physical trauma. also, i think he's experienced a bit of trauma associated with the pneumonia, in terms of his lungs not fully recovering so far and his body having to adjust to his inability to breathe deeply. i'm not clear what sort of effects this has on him. but i think it makes his whole midriff pretty tight. for instance, paul attempted to raise isaac's arms above his head. it wasn't something isaac wanted to do and couldn't do easily. i remember before he was sick, isaac had the most endearing little stretch where he'd arch his back and stretch his arms over his head. and he hasn't done that in nearly 2 months. so perhaps his lung duress has caused his back and shoulders to tense up in some way... or maybe it's his diaphram that's contracted inwards... as you can see i don't quite know what i'm talking about.

what i like about osteopathy is it considers the body as a whole, especially in terms of fluidity. the idea is that the body can heal itself. but in order for this to happen, the fluid in your body needs to get to the places that are sick. and if you have blockages, then problems occur. i thought that this was an interesting website that describes osteopathy more at length: http://www.osteodoc.com/index.htm

we shall see what sort of long term effects this will have on isaac. but, so far, i appreciate the concept!

dr ochs

This week we went to Seattle, and met with immunologist Dr. Hans Ochs. I liked him. He was a smaller fellow who has a very amiable way about him. He didn't seem like he was in a hurry or that he had to get down to business and be very serious. Instead, he had bright eyes which showed his genuine interest in immunology and in Isaac and in explaining what he felt was happening. He tells how it is. I'm glad he didn't talk down to us or anything... Also, I like him because he's not the bearer of bad news. Not yet, so far.

SO, Dr Ochs has told us there appears to be nothing unusual with Isaac's DNA. The strangeness he saw in the promoter region for the gene that tells the cell how to make CD40L, it turns out, appears in people with normal immune systems. Well, this was encouraging to hear as a defect in the DNA is pretty much set in stone, not too much hope of outgrowing a DNA defect.

ANYWAY, they drew some blood this week from both me and Isaac. They wanted to run this test that would that would see how much of this CD40L our T-cells were expressing. Remember, that CD40L is what allows T-cells to tell B-cells to make necessary antibody. Isaac's CD40L expression was 9% of normal when they tested his blood last November. Fifteen percent is the minimum amount needed to have an adequately functioning immune system. They were testing my blood to see how much I expressed. If it were around 50-70% then it might indicate that I have an X chromosome's not functioning properly. But I guess I was normal, which is somewhere between 90-100%. YAY!!! And Isaac's CD40L expression was somewhere near 35% of normal, which is WAAAAY above 9%.

SO YAY! Yay for Isaac. Yay for us. Yay for me in that it means if I have other kids, I wouldn't be passing an immune defect a long. But we're not out of the woods yet. We are still treating him as though he has some immune deficiency since we are not sure what's going on just yet. We will be testing other proteins expressed by his T-cells , making sure at least they are within a normal range. Then we will need to infect him with a benign virus (a virus that attacks bacteria) to see how his T and B cells interact. Meanwhile, we will continue to give him the synagis shots, the immunoglobulin infusion, and the antibiotic prophylaxis -- at least until he passes those other tests.

Well, what of the pneumocystis? what of his lungs? These are still questions to be answered. Dr. Ochs wondered if he had pneumonia caused by pneumocystis at all? He said the lab work only said that Isaac tested positive for pneumocystis, and that it didn't indicate how much was present in his lungs. Pneumocystis is everywhere, and at some point we all need to fight it off. It could be that Isaac did catch some virus which could have had some immune suppression side effects, and the pneumocystis was there taking advantage (it is an opportunistic type bug). It could be that Isaac's ability to generate this CD40L was just really immature. Dr. Ochs did mention cells found in cord blood express very little CD40L. And as a baby matures, he can express more and more. This coincides, too, with the fact it takes babies up to six months to be able to create all the antibodies they need on their own. And right around Isaac got sick with the urinary tract infection (2.5 months old) is supposedly when the antibodies he received from me during pregnancy begins to deplete (they are actually absorbed into his body) and when his body should start to generate his own. At this time, I've heard, is when babies are at their most vulnerable -- when he's not quite generating enough antibody, and doesn't have enough left over from mom.

So, bottom line, we don't know what the hell has happened to Isaac. And he could still have some immuno-deficiency. We are not sure. These tests will reveal much, I suspect. Infecting him with that benign virus will be the real test, I think. And I've a feeling he will be fine.

And in the meantime, we gotta get his lungs fixed. Hopefully, we can figure out what happened. Or, more importantly, he will just get better. And it won't really matter if we ever find out what happened. He is starting to eat more, which is very encouraging especially since we've been talking about getting a tube inserted directly into his stomach.

Well, I feel optimistic. Yay! Robert feels optimistic. Isaac's doing alright. He sits so well. And today, he moved from a sitting up position to a crawling position. He rocked back and forth a little. Then he sucked on my knee which was conveniently right there. And then he fell on his stomach. ehehe He's a little cutey-patooty. He even feels heavier to me. We might just have a practically healthy baby on our hands. c'mon Isaac's lungs!!

auld lang syne

can you say that? anyway, happy new year to y'all!

our house is cleaner. robert and i seem to be getting on quite well. and isaac's sitting up!

i mean he's not a complete pro at sitting and he does manage to sit longer if he's propped up by his boppy pillow. but he really seems to love sitting alot especially when he's surrounded by all his toys. yeah, toys are now really interesting to him!

he's distracted by the world. it sure can be an interesting place for a little guy who's just opening his eyes. in fact, it can be quite difficult to feed him during the daytime just because he wants to play so much.

well, i've been wanting to resume breastfeeding again, and it's not been happening. he usually cries or turns away when i present him the boob. i'm not accustomed to such a response to my boobs, let me tell you!!! every other guy's always taken a great interest! i try to remind him of this, but he's not getting it. :-) he does seem to take it when he's tired, though, for a little bit. so i guess that's something. in the meantime, we just need to feed him by bottle with fortified breastmilk to keep him gaining weight, which we hope he is.... i don't think enough, but hopefully, some weight gain is occurring.

i spent the night at my Lily Pad last night all by my lonesome. it was AWESOME! nobody to contend with but me. no baby to worry about. wow, if only i could be like that all the time -- the not worrying part, i mean. i do feel quite abit more rested today. and that can be nothing but good.

robert's writing an arrangement for a pink martini song, and it sounds like it is going quite well. yay, robert!

oh, and isaac LOVES zoe!!! especially when robert is playing with her. he just laughs and laughs and laughs when zoe gets all excited to fetch something. it's awesome.