A little over a year later

     After Elliot was diagnosed with Nephrotic Syndrome it seemed like everything was going great.  He was handling his wean off the prednisone fantastic and he was off them officially by September.  We were so excited and thought man so glad this officially over.  I can even remember leaving my Nephrotic support group because I thought we were all done.  The day after Christmas Elliot was complaining about his ears hurting so we took him to urgent care.  He had a double ear infection which caused him to begin leaking protein again.  His doctor put us on a schedule and honestly it was a terrible winter, spring, and summer.  Elliot never got off his prednisone.  It took him 6 weeks to become negative and he was on a very high dosage.  He was on prednisone everyday for 9 months which can be worrisome since it is linked to bone loss and things like that.
    We met with Elliot's doctor at the end of July where she discussed some new medication options with us.  She felt that Elliot would respond better to a medication called Prograf.  We were also told that Elliot is considered steroid dependent since we have been unable to wean him off for 9 months.  Prograf is a great medication for a lot of children with Nephrotic Syndrome.  The only thing that makes it scary is that it is a guessing game with it.  They have a different dosage per child and requires weekly blood work.  Also our doctor warned us about the fact that this drug increases the chances of lymphoma and skin cancer.  She has never had a patient develop this from the drug but needed to inform us about it.
    You know when your baby is born you look at them and their perfect little face.  You imagine their life and how amazing they will be.  You never imagine that they'll get sick.  That they'll become dependent on steroids to keep their kidneys functioning correctly.  You never imagine you will be forced to look into a medication that could possibly give your child cancer as an option to keep him healthy.  You never imagine stressing over waiting for the return of blood work results.  Hoping everything is good and that his counts stay high.
    It has been a rough year.  It has been a year where I wondered why elliot?  Why is my sweet boy the one who is sick?  Why couldn't this have just gone away?  But then I look at him and how strong he is.  I look at how he never ever feels limited or held down by his illness.  Elliot is incredible.  He is five years old and so smart.  He loves life and inspires me to be strong.  Even when he is getting his blood drawn and so scared he is incredible.  I love being his mom and am so grateful for his doctor.