November 7, 2020

I successfully surprised Alex today with a birthday parade. He’s been really grumpy lately and I wasn’t sure if he was going to like it. The New Haven Police Department led the parade with their sirens and speakers. Family and friends decorated their cars and sent gifts. We had a (socially distanced, mask wearing) birthday

October 1, 2020

My son Alex was admitted to the hospital again yesterday. During his dialysis treatment, he spiked a fever, had chills, a headache and some vomiting. His fever broke last night and is on antibiotics to fight whatever infection he has. I left the hospital around midnight to get back home to his little brothers and

August 6, 2020

Alex was unexpectedly admitted to the hospital yesterday due to catheter malfunction. Doctor believes that Alex had a growth spurt so the limbs of the catheter are not reaching where they should. They will attempt to rewire or replace but keep it on the same side. My uncle stayed with him overnight so I could

July 29, 2020

It has been close to 11 months since Alexander was first admitted to the hospital for respiratory and kidney failure due to the rare genetic disease X-Linked Alport Syndrome. We have put our faith in our medical community, our friends and our family. While we have not yet had a match for a living donor,

June 27, 2020

Just picked up our supplies for the online TRiO Summer Academy at CCSU. THIS is how you set up a student for success. Math. English. Art. Web Design. Technology and a stock of supplies provided. Clear schedule with agenda. Scheduled hours for daily tutoring. We enjoyed unpacking our goodies. This is the first time in

May 18, 2020

UPDATE: It’s been a while since we posted an update. I like to think in our situation that no news is good news. We welcome the calm after so many emotional hospital visits at the beginning of this year. Alex had some trouble with his catheter again recently but x-rays showed that placement is as

April 1, 2020

#PleaseShare #FindADonorForAlex #AlexsKidneyChampions Update: This week we started dialysis at CCMC. We have our own room and a great nurse. We had an extra day of dialysis yesterday because we were over our fluid restriction. Alex loves soup. Today we are doing his monthly labs. We have had two people reach out to us who

March 27, 2020

Update: Alex is home. We will continue 1-1 supervision. Our care coordinator made a referral for a home health aide. Hopefully we are approved and someone is willing to come out. The additional support would be much appreciated. We will start dialysis at the new center on Monday.

March 26, 2020 9:14 pm

Update: Alex continues to be under observation. We had to wait a few hours to get a room as the hospital has many patients. He needs to be in a room fitted for a dialysis machine so it took a while to move the patient, clean it and bring us up. Alexander is under strict

March 26, 2020 1:52 pm

I don’t know how to string these words together without completely falling apart. Alex has been admitted to the hospital and is under observation for an air embolism as a result of him opening the arterial line of his catheter while at home this morning. Intervention will be cpr if he goes into cardiac arrest.