Tomas is back in the hospital. His blood counts are dangerously low and he is having a bone marrow biopsy in the morning. Right now they are thinking it is either his cancer coming back or his immune system has stopped working. We will know more after the biopsy.
Just saw this....hours later so will start praying right now. What were his counts, specifically WBC, platelets and Hb and ANC...I want to see if I can give you a perspective on where Ella's have been? Praying you get some answers soon. Please give him hugs from us!!
When I was around 5 months pregnant an ultrasound revealed a birth defect (duodenal atresia - a blockage between the intestines and stomach) in Tomas which also meant he had a high chance of being a Down Syndrome baby. About a month before he was born I had an amnio that showed he did indeed have DS. He was born on January 16, 2009 and had his first surgery when he was 32 hours old. After that, test result after test result rolled in. In the first month my family learned he had three holes in his heart, his liver was not working, and he had Transient Myeloproliferative disorder (a type of leukemia which resolves in the first few months of life). The second month revealed laryngomalacia (a collapsing larynx), primary and secondary aspiration, and severe reflux. He was switched to tube feedings and had his second surgery to correct the reflux that was causing him to suffocate. The TMD resolved when he was 4 months old, his liver started working when he was 5 months old, and the holes in his heart have closed without intervention. After that we found out his left lung is partially collapsed, he has a stomach hernia and a liver hernia and multiple bowel hernias, and was recently diagnosed with neutropenia. He had another 2 surgeries. He is on J-tube feedings, requires oxygen support, needs to be on a pulse oximeter monitor, and has 10 specialists who follow him. He is exactly what I never knew I wanted. He has taken our family and carried all of us to a place where every smile matters, where the days breathe with possibilities, and joy reigns supreme.
"The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. The
real choice is between love and unlove, between courage and cowardice, between trust and fear. And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not. "
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Sending love and unending prayers.Will be anxiously awaiting an update.
ReplyDeleteI'm on my way to church for the closing of the school year. will be sending this Mass for Tomas! Keep us posted please????
ReplyDeleteMany thoughts and prayers are heading your way!! Keep us posted!
ReplyDeleteOooh no - praying for you!
ReplyDeleteJust saw this....hours later so will start praying right now. What were his counts, specifically WBC, platelets and Hb and ANC...I want to see if I can give you a perspective on where Ella's have been? Praying you get some answers soon. Please give him hugs from us!!
ReplyDelete