My grandson Rex has finally gotten an initial diagnosis after 19 months. It has been a very long road for Holly and her husband Tylor as well as Abby and Evie. Work schedules and time off for numerous weekly doctor appointments, tests, and procedures. If anyone can help, it would greatly be appreciated. I am copying Holly's post on what immunology told her today. Thank you and prayers are needed!

622 days. 15 doctors across 9 different specialities. 2 surgeries with a 3rd in 2 weeks. 2 swallow studies. 1 sedated MRI. 1 hospital admission. More ER visits, blood draws, stool studies, appointments, and sleepless nights than I can count. WE FINALLY HAVE A DIAGNOSIS. This morning Rex was diagnosed with specific antibody deficiency. This is an immune deficiency where his body does not adequately make or retain antibodies to polysaccharide based bacteria. His doctor told me as he gets older his ability to make and retain these antibodies may diminish further and may progress into a more severe immune deficiency called CVID. Approximately 1 in 25,000 have this disorder. There is still a lot that is unknown about this deficiency and what causes it. In the mean time his doctor has submitted a request to insurance to start igg replacement therapy. He will recieve transfusions every 2-4 weeks for the rest of his life to give him an artificial immune system. One of the main things we are doing now (aside from trying to keep him from being sick) is following up with his ENT and pulmonologist to ensure these illnesses do not cause permanent lung damage or hearing loss. This diagnosis doesn't answer all of our questions regarding his medical mysteries but definitely covers a big piece of the puzzle. I share all of this for a few reasons.

1. Please pray insurance covers these infusions for him. Each infusion costs tens of thousands of dollars.

2. If you've ever considered donating plasma, please do. These infusions are made from plasma donations.

3. If you as a parent feel there is something wrong with your child. SPEAK UP. I can not tell you how many people/doctors told me " he looks fine", "he'll grow out of it", "it's just a cold", "he's not even that sick", etc.