Pictures and an Update

I was going through all of the pictures on my camera and decided to post some that I never got around to doing. Enjoy!

Max in his super cute Christmas outfit
Max with his nephrology fellow, Dr. Ben. He and Max are best buds :o)
This is Max with his primary nephrologist
Max with Santa Clause at the Nephrology/Dialysis Christmas party
I am posting this because people have asked what a vesticostomy looks like. Well this is it. This is what Max peed from for the first 8 months of his life.
Max was all smiles while we sat and waited 4.5 hours for surgery #10 to take place
My first picture that proves that Max can pee like a big boy. SO EXCITING!!!
Mommy's favorite part of the house... Max's room. Why is it mommy's favorite? Because it's clean :o)

Want to send out a HUGE congratulations to my brother and my new future sister-in-law. We love you and wish you both the best in your life together.


Max had a cystogram today and everything went well. This test was to measure the volume of his bladder, show the reflux, and to check for leaks in his bladder. It was confirmed that Max still has grade 5 reflux into his kidneys. The radiologist was very pleased to see that when Max peed, all over the radiology tech, that he completely emptied his bladder. He was also pleased that the dye in the kidneys drained back into the bladder once it was empty. After the test, we had our followup appointment with his urologist. He had us clamp his SP tube so that we can start the bladder cycling. We have to drain his bladder every three hours so see how much urine he is producing. So far we have gotten only a half an mL. We also have to weigh his diapers now, and those are getting quite heavy with urine. So, in my opinion, he is completely emptying his bladder when he pees. That's just my thought though ;o) Max will have a follow up cystogram and urodynamics test done in four weeks to check for any changes.

His urologist is also working on getting his second urinary tract surgery to take place in about 8 weeks. That puts us about mid March. That surgery will consist of reimplantation of his ureters, placing a mitrafanoff (a hole that he will cath himself through), and possibly a bladder reconstruction. "Possibly" is being emphasized because we still aren't sure whether or not this is going to have to take place. A little birdie told me that Max's urologist is "cautiously optimistic that his bladder will stretch." We are not getting too excited about this yet, but it is VERY encouraging to know that a nationally recognized urologist said that. So, we are holding onto hope that his bladder will stretch with the bladder cycling. The urology nurse said that if he doesn't need the reconstruction that a transplant can take place anywhere from 3-4 months post surgery. So we will see what happens.

Max started his speech and physical therapy. Both therapists seem happy with how he is and feel that once they work on a few specifics that he will take off. He has the skills for eating, we just have to show him how to. He is also showing interest in sitting up on his own, so he therapist showed us things to work on over the week so that we can get his core muscles in tip top shape for sitting up. It's all very exciting.

The past week has been very CRAZY and VERY stressful, but we feel that we are moving in the right direction both from a urological and a developmental standpoint. We are hanging in there and just hoping and praying for the best.

Have a great weekend everyone!