We continue to march on and experience milestones...Pee-pee in the potty for the first time! However, Brennan's most recent bloodwork results from mid-September reveal a slow decline in his kidney function. Namely, his BUN is at 72 and his Phosphorus level is at 6.

For quick reference, the  BUN is a measure of the amount of nitrogen in the blood in the form of urea, and a measurement of renal function. Urea is a by- product from metabolism of proteins by the liver and is removed from the blood by the kidneys. In normal adults this test reveals levels of 7 to 21. The Phosphorus level should be less than 4.

To corral his numbers, we continue with the g-tube feedings approach of dilution whereby he takes in 1.5 liters per day of formula. This, coupled with a daily injection of growth hormone has enabled B to currently weigh 29 lbs (50% for his age bracket) and stand tall at 85cm (solid 10%-meaning that 90% of kids his age are taller).

The Phosphorus issue is a new one and we just started a medication usually reserved for dialysis patients to prevent this from increasing further.

In the big picture, we continue to wait for a potential cadaveric donor but we are acting now to implement Plan B should the need arise. That plan of course, is Johely or I donating one of our kidneys. Since we know we are both ideal matches for Brennan (me- 5 out of 6 genetic markers and Johely 4 out of 6) in the upcoming weeks and months we will initiate testing to substantiate the possibility of either of us surviving with one kidney.

Nearly every doctor, nurse and healthcare professional we have interacted with have advised us to wait for cadaveric donation. They all speak from their experiences. However, we refuse to allow B on dialysis again and we have been on the Transplant list for nearly 1 year. If his numbers continue a slow downward spiral we are ready to step in and supercede any crisis and dialysis.

From an outsider's perspective, aside from his somewhat yellow teeth, one would never know anything was wrong with him. He is like any 2 year old boy complete with smiles, giggles, amusing moments, bumps, bruises and of course temper tantrums. As much as this blog is about B, we try to weave a narrative about all of us into it, particularly the bond that B and Kyle share.

Kyle is such the brave big brother who takes B's shoes off upon coming into the house after returning home from weekend errands entirely of his own volition. B is perfectly happy imitating anything big brother is doing and knocking over his toys when he tries to play with them.

Being a parent can be trying, to be sure. Sprinkled in among the trials and troubles we face are rewarding nuggets. Just the other day we sent Kyle a note in his lunch box telling him how much we love and how proud we are of him. Johely picked him up from school and informed her he received the note and thanked her. Then, silence. Johely peered in the rearview mirror and noticed he was crying. She asked why.

"Mommy it makes me feel good that you and Daddy love me so much."

Never under estimate the love you show to your child, even if it is a simple note in their lunch box. Stay tuned for updates!