The singular and persistent day to day concern is Nate's yet-to-be-diagnosed digestive tract troubles, which have contributed to a plummeting body weight and intermittent vomiting and diarrhea.  Nathaniel currently weighs in at a lean 22 pounds, down from the 26 pounds that he brought with him a couple months ago.  The four pounds may not seem like much, but it drops Nate's body weight from the 90th percentile for his age to less than the 10th.  And while children who undergo transplant typically stop growing for at least a year, Nate's decreasing mass is a concern since it potentially leads to further medical complications.  Therefore, patience is a primary ingredient of each of our meals as we have reinforced our resolve to restore some semblance of an appetite into this once voracious eater.

These days, however, if you visited before or after mealtime, you'd think that this was just your average, chaotic family of four.  Ryan has quickly learned that a mild cry is not nearly enough to garner any serious attention, so the apartment often resonates with the sounds of our two little tenors.   Nate's interest and interactions with his brother are increasing, to the extent that Nate demands equal sharing of medications and dressing changes with his sibling.   Nathaniel is also wearing out a special gift from the Songs of Love Foundation (go to Nate's Song Page to hear the song created especially for Nate), so his obsession with Elmo has diminished to a degree.

We have all been glad to receive recent visits with some family and old friends.   Heidi and Wayne, good friends from our days together in physical therapy school and one time travel partners, came to spend a long weekend and expose our inability to play ueker or golf.  Greg's brother and sister-in-law, Chris and Lisa, spent the past week honing our computer skills and trying to fortify all of our diets.  

The reality is, as we hopefully wind down our stay in Durham, that Nate is a happy child who has gained some specific knowledge from his time here.  He knows syringes and masks and alcohol prep pads, for example.  He knows his role during IV care, dressing changes and mouth care, and how to keep himself entertained in confined spaces.  He knows by sight which of his oral medications are most vile, and he knows how to store a half slice of bologna and nine cheerios in his left cheek without losing the resonance of his persevorating demands for ELMO.   He is able to perfectly impersonate the beep of an IV pump, and he knows how to time his most blood curling screams to the critical moment when his brother latches on to nurse.  He does not let a little vomit ruin a decent meal, and he knows that a decent meal always ends with a Peppermint Patty.  Thankfully, he knows how to kiss and hug.  He knows the threshold of our doorway is not crossed without a mask donned, and he knows to impulsively wash his hands with anti-bacterial cleansers.  He knows patience.   And he seems to know that we can't wait to show him to the home that he doesn't know near well enough.

Thanks for being with us through this all, for sharing this part of lives.  Keep the faith.

Nate, sporting his new shirt, and Ryan, sporting very little head control.  See Nate's photo album for more current pictures.

Nate and good friend Heidi, doing a little bit of butterfly hunting on a humid afternoon.

Nate will use his greatest charms to avoid eating these days.  Note the logo on the bib.

The good news is that after a few days, as suddenly and with as little explanation as it's arrival, Nathaniel's diarrhea and fever resolved.  Go figure.  Home we went, and we couldn't have been happier.   We had our own beds, our own dog and our own elbow room.  The house, scrubbed sterile by some industrious friends and family, was soon littered with every conceivable suitcase and toy.  Ryan's Aunt Lisa and Uncle Chris went so far as to prepare a very cool nursery for Ryan, however he still seems perfectly willing to poop or spit up in any room in the house at this point.

With his characteristic sense for the dramatic, Nate does seem determined to keep some excitement in our daily lives.  This week he's providing it with the results of his blood tests.  His platelets, the cells which are manufactured in the bone marrow and which are responsible for creating clots, have declined significantly over the course of the past couple weeks.  A normal platelet level varies to some degree in each of us and is typically between 150 to 400.  And while it is not unusual for the level to vary markedly in a transplant patient, Nathaniel's level has dropped from 150 to about 100, which is a variance in the wrong direction.  We believe that his medications may be responsible for the decrease, but in case we didn't have enough to worry about, a declining platelet level is also often the first sign of relapse.  And that's the last time we'll have any mention of that awful word.

So with the exception of many common toddler-hood challenges,  Nathaniel is doing fantastic.  His rash is hardly visible, his hair is slowly returning and, thanks to that miraculous nutritional supplement, mayonnaise,  he's starting to gain some weight back.   Our lofty principles for day to day child-rearing, which we anticipated clinging to for at least a couple years, are quickly being sacrificed in our pursuit of a restoration of Nate's health.  Since long periods of time sitting still are a requirement for his medications, television is now a staple, instead of the very rare treat that we had hoped.  Fresh fruits and vegetables have been exchanged for any item with a high sugar or fat content and a shelf life of at least two decades.  We're sure, though, that Nate will see our logic when we attempt to cleanse his life of Twinkies and Barnie in the future.  Kids are very reasonable that way, aren't they?

We'd like to offer our thanks, again, for your support and warm welcome home, and we will continue to keep you all informed of Nathaniel's progress.  If you find that a week or two goes by without an update, it's probably because we're having too much fun with our sons, so please don't worry.  Although Nate's saga is not yet complete, he's persevered through much and we're confident that he'll handle whatever comes his way.  For us, it's only worry and fear that we have to live with.  As parents, we knew that was part of the package anyways, and we're perfectly willing to live with some fear, as long as Nate is able to live without the cancer.  Keep the faith.

Celebrating the victory of the first one hundred days   See Nate's Photo Album for more recent pictures..

Nate and Ryan, dressed for the trip home. If it weren't for the mustache and eyebrows, who could tell them apart?

Home again, with dog, Duke, and the jungle that once was a backyard.