Was that a sneeze? Or did you say something. If it was something was it even English? If it was English, what was it? Come again? Hypogammaglobinemiasupercalafragaliaticsosis‚ĶUm-diddle-diddle-um-diddleye. Um, yea, again? Hypogammaglobinemia. I couldn’t make that word up if I tried.

The first time I heard this word was on my birthday and I thought it was so sort of sick joke as the doctor kept repeating and spelling it over and over. She was telling me my son was diagnosed with hypogammaglobinemia. That was four years ago.

Hubs kept telling me nothing was wrong with Bug and I was just overreacting. But mommy instinct knew better. At 18 months old I knew most kids his age were running around, climbing on chairs and devouring everything including crumbs on the floor. Instead our sweet independent little boy was sitting on the couch lethargic, feverish and devoid of appetite and personality.

I started keeping notes. He had fevers 6 out of 7 days a week. They ranged from 99 to 103 degrees. I repeatedly kept taking him in to the doctor; week after week. He kept losing weight but was otherwise “ok” by medical standards. Every test was ran and nothing raised red flags. They kept telling me it was the common cold.

Finally, his doctor agreed something wasn’t normal. At her suggestion I was to bring Bug to the doctor every time his fever was over 100. Every time. So we spent the next few months at the doctors continuously. She documented every appt and all tests ran.

Then one day it happened. The day that would change our life as a family.

Monday morning Bug woke up with a 101 fever and cough. I called in as normal and was told the soonest opening was the next morning. No biggie. Tuesday morning dawns and his fever is down to 99 and his cough are gone. I almost cancel the appointment but decide to keep it so she could document it. We walk in, check in and wait to be called. By now the nurses are alert to what’s going on and usually just pull us into a small room, preform his vitals and quickly asses if there are any tests that need to be ran. If everything seems like a cold, they send us on our way. But today was different.

And tomorrow I’ll continue how we arrived at a diagnosis that changed our lives and saved his.

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