Meet Our Kids

Alexavier Ryan Adams was born June, 15, 2010 a healthy 8 lb 1 oz baby boy. Overall, Alexavier looked healthy. We went in for his 1 week checkup and like all newborns, Alexavier started to lose weight. We told his pediatrician he’s a good baby but way crabbier than his brother was. We went home and continued going back weekly because we knew something was not right. He would be so happy at times then blood curdling scream, painful crying.
We continued weekly visits to his pediatrician for 5 weeks with her suggesting formula change and what I thought would be good for him. During this time, alexavier started to look more like a skeleton with a blue tint sheet blanket as skin and had lost another 2 lbs.
At our last pediatric visit, my husband and I decided we were going to the hospital if she suggested another formula change. At his last pediatric appointment, It was a hot mid July day, when we got there, she told us to bundle him up, add an extra layer because he was looking cold (later we found out this was called Mottled) his pediatrician suggested going to see a nutritionist at a hospital of our choosing because she wasn’t sure he was getting proper nutrition and couldn’t eat correctly.
Not knowing anything about children’s hospitals, we packed our bag, dropped big brother off with grandpa and headed straight to Cardinal Glennon Children’s hospital. They had a room ready for us as his pediatrician already called ahead. We got to his room and needed to get an IV in him. That was horrendous, the staff was amazing, they truly cared, but little to our knowledge, Alexavier was extremely dehydrated and they couldn’t get an IV in until air medic came in. Once they got some blood drawn and fluids started we were wheeled back to his room. I don’t remember timing on this night at all but it seemed like within minutes they were back in and taking him into surgery. Hours later, his surgeon came to get his dad and I. Alexavier was a trooper, he made it through surgery and brought him in just time. They said he wouldn’t have made it one more night, he had E-coli throughout his body.
Alexavier had been born with Posterior urethral valves (PUV) is a condition found only in boys that affects the urethra (the tube which runs from the bladder to the outside). The abnormality affects only male infants and occurs in about 1 in 8,000 births. Alexavier has been Stage 3 CKD majority of his life and just recently moved to stage 4. He’s slowing down some but still going strong at the same time. He loves being outdoors, hiking, camping, being in creeks, floating river and just being adventurous. He’s tried numerous sports but soccer is his favorite, he played good up until 2 yrs. ago when we noticed a drastic change in his speed. We cannot wait to see him with full 100% function and health
Please register to become Alexavier’s lifesaving donor, using the following link to the National Kidney Registry-https://www.kidneyregistry.org/kfork/