well, we're going to put in a port.

i have been waiting to get lab results back before i posted. we have been doing normal level checks and at the last one (after the picc line was pulled) we found that e's level was at 0.6%. when all of this started when he was two days old, he started out at 6%. he was 5.9% a few months later, and then down to 3% at around 1 year old. right before the head bleed he had labs done and he was at 1.1%.

as other hemo parents know, the doctors are always checking inhibitor levels too (well, every six months or so). evan has always come back with a negative inhibitor, but sara (our hemo nurse) is thinking that he has one that just isn't detectable by their measurments.

so michael and i took evan to a consult appointment with the hemotologist on monday where we discussed reasons for the lower levels and what our course of action is. it's speculated that
evan does in fact have an inhibitor, but that it is so small that it is not showing up on their tests.

*side note: for those that arent in the hemo community and don't know what an inhibitor is, it is a protein that the body produces that essentially goes and attacks the factor that his body is making, which makes the amount of factor in his body much lower than it should be.

so the reason for the port is for us to be able to give evan prophy treatment somewhere over the course of the next six months up to a couple of years to try and trick his body into not going and attacking the factor anymore. IF (and i say that as a very big if...but only because i'm learning to stop being too optimistic about this disease) the prophy treatment works, t
hen e's levels should be able to go back to their original levels (somewhere between the 3% and 6%) and we would be able to stop giving him the injections three days a week.

if the levels don't change and we are still showing an indetectable inhibitor, then we predict that we will keep evan on prophy treatment indefinitely.

michael and i are taking e to the surgeon's office tomorrow for his consultation and we may be able to get him in for surgery as early as next week on wednesday. this means we'll be in the hospital for three or four
nights, so we should be home for the weekend. it's going to be a definite challenge trying to make sure noah is taken care of and brought to school and karate while i'm gone with e. this disease really does affect the whole family...and i wish there was some way i could keep home life normal for noah through all of this. but, he's a pretty cool kid and adjusts pretty well (and really loves his grandparents) so he'll probably be affected by it far less than i am worrying that he will be.


so tell me about ports.

it looks like we may be going that route, and i'm curious about how long it took you to learn how to access it. also about the types of tricks you use to keep your little one preoccupied and what the actual surgery is like.

i am completely speculating at this point, as we are still awaiting some lab results, but i am a big fat planner and would like to know the dirt.


for other hemo parents (well, non-hemo ones too)

i just ordered some really cool padding for the bathtub for e to keep him from hurting himself if (well, when really) he hits his head on the tub. i thought i would share the link in case anyone else is interested.

i also bought an inflatabl
e spout cover from babies-r-us. it was a lot softer than the other spout covers. they offered plastic ones that seemed too hard for his head if he were to hit it. it was only $2 too, which was a very nice bonus =)

and i figured i would add a new picture because i am a shameless AW.