it's back!!

well, masey is the small-talk topic of choice lately, and i can't really blame people. i'd be super nosy about it too!  every time someone asks how he's doing, i feel guilty if i say anything but 'fine' or 'good'. i mean, really, the kid is extremely blessed just to be alive! is it bad luck to bemoan the struggles?

do people really want to know about how he is wasting away before my eyes, and refusing to eat. do they want to know about the surgery he is going to need to repair his paralyzed vocal chord? do they want to know about him choking on liquids and all other foods? about how we have to wait at least a month before he can get into the schedule to have this surgery, and then hope it's before his next course of chemo. otherwise, he will not be able to have it for a few more months. i feel like this is coming across as bratty. i don't mean it that way. i just really don't know how much information people want. so, for all you out there who have asked about masey and i've said 'he's fine', that paragraph is the truthful update. here is one more:

remember this?

yup, masey's sporting the feeding tube again! the blessing/curse has returned!

masey hated his feeding tube the first time around, and putting it in was traumatic (nose bleeding, scratching damaged throat, being held down by strangers, etc) he has dreaded the thought of it ever since. the fear of a feeding tube has often been the only reason this poor guy will gag down his (rather nasty, i might add) medicine.

but he's also lost over 11 kilos since coming home from the hospital (for all you americans out there, throwing a fit about the metrics, 11 kilos is about 24 pounds.) don't believe me? compare:

and these pictures only show his face. lift up his shirt and it's easy to see that this kid is skin.and.bones. he has lost every ounce of baby fat he had, and a lot of muscle mass. this little boy, who was always deceptively heavy and solid, is now anything but. at 115cm (3'9" haha) masey's current bmi is 15.1, which is quite underweight. (especially compared with the 23.4 it was in the hospital)

wow, i kinda got off topic!  back to the real topic of this post, that lovely tube stuck down masey's nose/throat. here's a list of reasons the feeding tube will really help masey, no matter how traumatic it was to insert it today:

• pneumonia. or i guess preventing it. he had pneumonia in the hospital, and with his lowered immune system (thanks to the radiation and chemo) it would be life-threatening to get it now (oh yeah, why does this apply to the feeding tube? because of masey's vocal cord paralysis, he has been aspirating-or inhaling-liquids, which can build up in his lungs and cause pneumonia. throughout his course of treatment-for the next year-masey will take antibiotics weekly to combat this. eliminating the risk for additional liquid in the lungs will go a long way to preventing pneumonia.)
• hydration. any liquids masey drinks must be thickened to more than honey-thick. not only is this nasty to drink as far as texture goes, it is nasty because his drinks are more than half thickening agent, which tastes gross. the tube will keep him hydrated.
• it's an ng tube, not the nj tube he had before. this will help him feel full and rely almost solely on the feeding tube, protecting his throat. 
• nutrition. not much tastes good to masey lately. this will let him get nutrients, and hopefully gain weight and bring his counts up. (the levels of red blood cells, platelets, but most importantly, white blood cells in his blood)

anywho, as much as i would like for this to all go away (masey, too!) i am so grateful that masey is here, and is such a trooper. he's the strongest kid i know, and i kinda like his new addition :)