July 20, 2014

Long time, no see...

I can't believe that it's been over two years since I last posted on here!

Here is a little recap of what's been going on in our lives over the past couple of years:

Max is now SIX years old and will be starting first grade in 3 short weeks!!  I cannot believe that he is old enough to be going to grade school.


Max unfortunately had another episode of rejection in October of 2012.  He once again had both cellular and antibody mediated rejection.  Thankfully, we found it early and were able to stop it with some heavy duty steroids and IVIG. 

In June 2013, Max had his "big" bladder surgery!  We are so happy that he ended up not needing the augmentation that we thought he was going to need!  Max's vesicostomy was finally closed and he had a mitrofanoff placed.  During this surgery, his remaining native kidney was also removed to decrease his risk of infection.  Max pulled through the surgery like a champ and after a week in the hospital, he was discharged.  After  6 weeks, we started the process of trying to stretch his bladder.  We were so excited to learn that it worked!! Max now has what is considered to be a "normal sized bladder" for a child his age! We now catheterize him through his mitrofanoff every 3 hours to prevent any urine from refluxing into his transplanted kidney.  We should be able to start trying to potty train him soon- yippee!!!

Three months after his bladder surgery, we found out that Max's urologist was leaving Cincinnati Children's.  We are fortunate that he was able to perform Max's surgery and was with us for all of his follow up testing.  He informed us that he feels that Max will not need any further surgery on his bladder.  We have met our new urologist once so far, and he is great as well!  We are looking forward to working with him- primarily to get this boy out of diapers!

Right now we are working on getting some height and weight on him.  He is only in the 2nd percentile for his height, so we have started him back on growth hormone in hopes to get him taller.  I am also in the beginning stages of starting him on a blenderized diet that we will put through his g-tube overnight to get some more calories in him. Fingers crossed that we get him growing!

Overall, from a health standpoint, Max is doing great!  He gets labs once a month (unless something is off) and sees his nephrologist every other month.  

Max is still very much into his trains and playing outside.  He played soccer last fall, but ended up not being too much of a fan!  He loves to argue with his sister over anything and everything, but the kid has a big heart and we are so proud of him.  He has grown so much over the past 2 years and we look forward to what the future holds for him!
. . .

In other news, Max has a new sibling!  Well, he is 14 months old, but new since the last time I posted :)

This is Levi Lawrence Livingston.  He was born on May 20, 2013 and has completed our family.  He is very easy going and just a happy kid.  We are so blessed to have him!


Miss Cora will be 3 in September.  She can be the sweetest little girl, but don't let her beautiful baby blues fool you- she can stand up for herself and will let you know if she doesn't like something!  She loves everything princess right now, but isn't afraid to get her hands dirty either :)



I think that's it for now!  I will try my best to post more frequently this time around  :) 

Thanks for stopping by!

Love, 
Tim, Beth, Max, Cora and Levi
  








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