Jonah, Jonah, Jonah!

I have spent the past week in shock and emotional distress. This weekend was a great release of so much of  that and finding the realization that I can't change a damn thing, no matter how much I wish I could.

We spent Saturday morning hiking as a family. (oxygen tank and all) Then the afternoon rushed by with a birthday party of a good friend and then swimming lessons in the evening. Today, was a lazy Sunday for the most part.  Seems like Sunday's are starting to be the longer day of the weekend with us not attending our usual 9-12 church.  We were going to bring Jonah and try it out this  Sunday, but when I took him in for what I thought was an allergic reaction to his face, (not an allergic reaction, just the signs of a steroid kiddo) we learned that his VRP from last weekend did come back with Rhino which may just be lingering from the last VRP. But we thought it would be best just to keep him safe and just keep him with us. However we did sneak out to fly a kite and peek at the adorable new spring babies at the farm.  So cute!!!

Jonah's Pulmo called me on Monday to check up on the crazy goon, and also to share a possible idea of an overlooked diagnosis. T-cell deficantcy. I slid the idea through my scanner of knowledge and came up not knowing anything about T-cells... Only red and white, so I  went about the day not thinking of it again. 

Thursday, I got a call from J's ped. She had been looking through/ studying Jonah's past medical history (by this time I suspect it's the size of all Harry Potter books combined) she found something that struck her fancy. She found that in April of 2008 (during "big scary time" in Jonah's life) that there was a note in J's file, that Jonah had a  T-cell deficiantcy, but it was also noted that the work up was done while patient was sick and to have child have a further work up done when he was healthy... Neither of these doctors had even spoken to each other on this topic, both ran it by me first. With no clue that they were both on the same page.

I had two extreme emotions, the first, I felt eternally grateful that I had these amazing hard working, love their patients kind of doctors working for my son, and two, scared to death that they both have come up with this very likely and rare diagnosis. What did it mean? I had to ask.  The answer: well, not one that I want to believe. I am doing my best just to focus on today but with all the what ifs fluttering in my head it makes this task so hard.  I find myself  constantly repeating that this has  NOT been proven, it is merely a possibility.

Jonah is on a large dose of steroids he needs to ween from before he can go in for the work up. Oh, and he needs to be healthy...... that's a pretty large order considering his track record... will "Jonah Healthy" due?  Cause that's as good as it's going to get.