NICU GraD

Noah completed his second infusion on Monday. So far he has been tolerating the medication without any side effects. We have seen an improvement in just one week, his appetite has increased, he’s gaining weight and he’s more alert. The doctors are very optimistic this drug will work for him and hope the FDA will soon approve it, for now people are able to access this drug through compassionate drug use and clinical trials. 

Today the genetecist said that Noah will be the HERO and will help many kids around the world who are battling this terrible disease. That gives us a lot of hope and reaffirms that we made the right decision doing this clinical trial.

Noah was also discharged from the NICU today. We are so thankful for the amazing nurses, doctors and multidisciplinary team that have been helping Noah, he is so lucky to have a great team cheering him on. Now we continue with outpatient infusion twice a week for the next 6 weeks. 

We are extremely thankful for our WONDERFUL community and everyone that has donated, prayed and reached out to us. Noah is so fortunate to have this incredible community that has come together to help him in his journey. Mrs. Trish Biondeletti and her Chi Sigma Sorority have been more than amazing with their generous donation, we are incredibly thankful for each and everyone of you. Thank you for your PRAYERS and support. 

For now, we appreciate every second we get to spend with Noah. Watching him grow is an honor and we will continue to fight and do everything we can to help him. Our faith is stronger than ever, we don’t know why things happen but we know God has a reason for all things that happen, we may never understand His wisdom but we have to trust His will.

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen.”

‭‭Jeremiah‬ ‭29:11-12‬