and

[Guest guest]

Hi, and .

I have been meaning to write to you moms for the last few days but things are a

little tough right now. la is doing okay but complaining of " belly " pain

and not sleeping well for two weeks This is the lowest her trough has ever been

so I am wondering about that... Also, it does not help that the Court asked for

me to watch over my teen sister (long irrelevant story).

Anyway, my daughter is in the same rocky boat with Conner and . Studies

are inconclusive at best and there are still a number of reasons why her Ig

levels are so low and T-cell function is so weird. Barbara Ballard (head of the

SCIDS group) once said that the average time it takes to properly " diagnose " an

individual with an immune deficiency can be 8 years! This is way too long and I

know that we can do better. I find it so difficult to do that " masterful

monitoring " or " watchful waiting " thing when my mommy instincts (and forced

medical education) tell me otherwise.

I hope that Conner and are doing okay for the time being. I am thinking

of you and your guys even though I have been rather quiet lately.

Sending well wishes and hopes to you and your dear ones,

(mom to la, low everything and still working through stuff)