Trusting advice

Lauren lost a bit more weight and her height has stalled now as well so her diagnostician pediatrician (this is the doctor who "staffed" her medical case with the team of specialists a few months ago to try and give us some answers) has recommended that she be given a feeding tube to provide her with the calories her body needs but is not getting on her own. Obviously this is not something we actually want to have put Lauren through (or myself) but to see that she weighs less than a pound more than she did in October 2009 we know we have to try something else besides oral supplements. It's hard to see that she needs this procedure however because she looks good- she sleeps, plays and is learning. But the chart (don't get me started on charts though) does show no significant growth for several months. Ok.. so now we trust this next round of advice and schedule to meet with a surgeon and GI specialist. Because her weight issues are chronic and not due to recovering from a recent illness or something she will be evaluated for a G-tube instead of the NG-tube, the difference being that the G-tube will go directly into her tummy which lessens the chance that she will pull it out. Having a tube in your nose 24/7 then hooked up w/food at night is not a pleasant thing i imagine so our concerns about doing that were taken seriously and we can hopefully skip that step of the process.

Her appt w/the hemo/onc doctor went well. He is recommending more dosing of the B12 because her MCV humber has come down slightly (this indicates the macrocystosis issue where her red blood cells are too big) and he'd like to see if giving her the B12 injections more often will bring that number down into a normal range. We (the dr.s and andy & i) believe that her lack of appetite and red blood cell problem are related. We hope that someday we can get to the causing agent and address that instead of only treating the symptom of failure to thrive. Here's to hope.

what's happening this week

i am touched by all the comments lauren's blog received yesterday and am reminded of how much she is loved by so many- thank you. and thanks for bearing w/me as i figure this all out (blogging and this new world of caring for lauren). pls feel free to comment or ask questions about anything i'm posting. and forgive spelling errors.

the week ahead- on thursday lauren will see her favorite doctor to receive an update on her blood work. her hemotologist noted an abnormality in her red blood cells back in january (something called macrocystosis) and we're watching her blood carefully for changes.

she will also see her diagnostic pediatrician on thursday for a weight check and a discussion about implementing a feeding tube overnight to help her take in more calories. lauren is a peanut and has had some trouble gaining and maintaining a good weight. this particular doctor was brought in a few months ago to review lauren's medical hx to help find a diagnosis. she has such a varied presentation of medical "issues" (ha!) that it's been difficult to plan ahead for her care. we have been reactive on many fronts. so, this dr. and his team of specialists haven't come up with anything yet but we are hopeful that someday we might have a road map to help give us an idea about what's next but for now we're winging it.

What's happening with Lauren

Ok. So I (lauren's mom, jen) am finally getting with technology and have created a space for lauren's family to communicate how she is doing and what's happening with her life. Bear with me as this is all new to us! And thanks in advance for your care and concern for lauren and her family.