Happy Winter Solstice

Hey all! Here's to hoping you are all healthy this winter. Drink them fluids and take your vites. :-)

So, lessee some updates:

1) We talked with Hans Ochs the seattle-based immunologist who has been looking into the underlying immune problems Isaac has. Here is the general gist:

• the gene for producing the CD40 ligand (CD40L) seems to be intact; in fact, some of his T cells are able to express this CD40L. to review, his T cells need to be able to communicate to B cells to tell them to make different types of antibody. this communcation occurs because of the CD40L. when this protein is missing, the communication does not occur and the B cells never make those antibodies necessary for protection. this problem is called hyper IgM. the reason it is called hyper IgM is because B cells make a disproportionately large percentage of the IgM antibody compared to the other types (IgA, IgD, IgG, IgE). i think IgM does not require the T cell to tell the B cell to make it.
• the promoter for this gene, however, seems to have a mutation. the promoter is a region on the DNA whose function may or may not (because i'm not entirely certain) is to turn on the gene. a doctor gave the analogy that it's kind of like a light switch. and Isaac's flickering. because he's able to express the CD40L sometimes. perhaps just not enough, right now, to properly defend himself.
• there is one other case . and, no, i did not ask what happened to this other case. it is a question we have on our queue for when we talk to Dr. Ochs again.
• sooooo, because this case is so unique... there may be a possibility he'll outgrow his immuno-deficiency ???? we just don't know.
• they are testing my blood next to see if isaac inherited it from me. i guess he's not looked at my blood at all, and in fact, they may have misplaced it because they didnt' realize my last name was not Taylor. if i test positive, then they'll check Shell's, then Grandma's. If they have it, then my uncles and brother will be checked. and i'm not sure what exactly will be determined. only time will tell.

2) we met with the pulmonologist on friday. we discussed his rapid breathing, crackly lungs, etc... an xray was taken and it still looked cloudy but there were more clearer spots so that is a good sign. he said isaac's lungs were pretty expanded all the time. normally, your lungs expand when you inhale and relax when you exhale. well, his are inflamed and stretched out already. this accounts for his effort to breathe and high respitory rate. so we doubled his steroid intake. and we are giving him a steroid inhaler. already, it seems his breathing is easier. but it is still rapid.

3) today, i spent 7 hours at the hospital getting isaac set up with his second round of IVIG and synegis shot. IVIG is an infusion of antibodies that have been collected from a wide array of peoples' donated blood. supposedly he is quite well protected from lots of viruses, as protected as most adults. the synegis gives him live antibody meant specifically to protect him from the RSV virus. these shots and infusions need to be given monthly as his body will absorb the antibodies over time. and they are quite pricey, like over $1000 for each. our co-pay for these medicines is 20% and while that is a big break... well, it's still spendy.

today he weighed a bit less -- 14 lbs 2 ozs. he's been quite a finicky eater as of late. we're thinking maybe he has heartburn. so we're trying this anti-heartburn med to see if this has an effect.

i'm almost starting to think maybe we should let him be and let his body heal himself... but i just don't know. i guess for now we're staying the course the doctors have prescribed and so we shall see.

what else? isaac's sitting on my lap now. i think he likes my computer. his hands are exploring everywhere. really cool to see. his hands are cold, and i'm wondering why the heat's not on. i think this winter thing is really start to set in with its colder temperatures. i'm glad the days will start to get longer again. for isaac, until a day ago, the days have only been getting shorter.

oh what else??? i've written quite enough. this is it for now.