Five Weeks Into Treatment, Childhood Nephrotic Syndrome

Well, we are five weeks into treatment already! D’Lo is truly a champ…our little soldier! For those of you who don’t know D’Lo, you probably just see the cute, round face of a four year old. For those that do know him, you can clearly recognize the effects the steriod treatments are having on his appearance. He is much bigger, head to toe, but particularly his cheeks and torso. As much difficulty as I am having adjusting to his new look…I know it will be equally strange once he’s done with the prednisone and begins to shrink again, which is what the doctor said will happen.
The other side effects also still have a firm grip on our baby boy…insomnia (which means I don’t sleep either), moodiness (the good is great, but the bad is terrible), and he’s constantly hungry (which I know is also contributing to his new body type).
The saddest part for me, I think, is his inability to acclimate to his new size and center of gravity, at the same rate in which he is changing. Ever since he could stand on his own two feet, he has been a very active climber, jumper, and risk-taker. Now there is more weight to carry with him and his motions not only don’t feel the same, they don’t always have the same results – as evidenced by the horrific look on his face when he gets the wind severely knocked out of him as he tries to land a jump. It is pitiful.
The trade off? Of course, it’s worth it. His urine looks great, no protien leaking. His face may be bigger but his eyes are not swollen. He is still doing great in his recovery. His immune system is compromised as a result of the steroids but as long as we can keep him from getting sick, he will be considered in remission and a “normal” kid.

I am thankful for a great pediatrician, and thankful for constant access to a pediatric nephrologist…mostly though, my appreciation is for the Merciful God that daily allows little arms around my neck and children’s laughter in my ear…

Keep the prayers coming, Warriors!