Thursday, January 8, 2015

Tonight I left my little boy

While the rest of us went out to do something fun as a family. It was heartbreaking. My world is changing, and I am not sure where to go. 

My son was diagnosed with Alpha 1 deficiency a week ago. He already had primary immunodeficiency, which tests show has gotten much worse.

We found out that my son, my perfect baby, has no immune response. He is fully vaxed (on a delayed schedule) but has no protection because his immune system is so compromised. He has no  titers.

We found that he has no cell memory for previous illness, so if he gets something he can get it over and over. He will never develop immunities. 

We found out that his liiver isn't functioning well, and may fail. He may need a transplant. 

We were told yesterday that because of his fragile state, he is home bound. He can't go to preschool any more. He can't play with his friends. He can't go to iJump, Mcdonalds, Leos playland. He can't go to Walmart. This was hard news. But we were OK. It will be OK. We know it will. 

But not tonight. Tonight reality set in. Today is my beautiful daughter's 18th birthday.  We had a party for her at a local trampoline place. I had to leave him. It hit me. No preschool. He loves preschool. No outings to the park. He loves the park. No friends. No parties. My heart feels a little broken today. My baby could die at any time, easily. Because of that, I can't allow him to truly live.

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