Surgery will happen...

Howdy ya'll

It looks like surgery is going to happen! He's going to be getting an MRI done in August (likely sedation will happen, since he squirms around A LOT), and after the appointment to talk about it and discuss how and what will happen, surgery will likely happen in September.

What Jonathan has is called Spina Bifida Occulta, also known as hidden spina bifida. We still don't know how it happened (his genetics appointment isn't until July, and it is likely genetic from what the neurosurgeon said), but we do know now that it is the least troublesome form of it and easiest to correct. The fact that he has excellent movement in his legs and no problems with his bladder or bowels is a great sign, but the surgery is needed to prevent problems from appearing later as it is degenerative; as he grows the nerve endings and the tethering is stretched and damaged, which then affects his legs, bowels and bladder. He had his baseline test on his bladder (peed on the resident and the urologist! Who knew that catheters weren't fun??? LOL), and things look good from their end right now; his bladder is a little small, but they aren't sure if that is because he is small or if it is because of the tethered cord problems.

He also had his first date yesterday! We met up with another NICU graduate, Aimee and her daughter Sayde, and had lunch to celebrate her anniversary and birthday (Aimee's). As Sean puts it, they shared a bottle and went to bed. It was great seeing them, and it's going to be a bummer when they head back to their base in Texas in May when Dustin comes back from Iraq (she's been staying with her family in Fort Edward/Glens Falls while he deployed). Thank goodness for Facebook and technology!

After his stressful day yesterday he is snoozing today, but won't snooze anywhere but on me (makes typing comfortably interesting).

Thanks for the the good thoughts, prayers, and wishes! He's a little fighter (LOL, just like his mommy, so it's been said...), and he'll be fine. Just have to take things a day at a time. :-)

The meaning of "Tommy-Gun Johnny"...

There is a story behind the blog title:

Carol came up to visit after he came home, and we were talking about signing him up with a Facebook page, since all of the Adwoffers and everyone loves seeing info on him. She said we would have to sign him into MobWars and we could give him a tough guy nickname, and thus "Tommy-gun Johnny" was born.
Since the whole JJ nickname doesn't seem to fit him, we may have to see if this one works!

The joys of parenthood

...and yes, I really mean joys.

While I worry about Jonathan and how things will work out (a little), I also am enjoying my time with him. Even with the lack of unbroken sleep, each day I fall a little more in love with my son. Each day brings a new little accomplishment or joy that even BJ smiles at. He's smiling more, and he holds his head up REALLY well. He is scooting about with his legs when lying on Sean or I (and four inches on the floor when he did his tummy time yesterday!), and he recognizes us. As soon as we pick him up when he's crying (which isn't often, by the way), he calms down with Sean and I (and Mary, too). He's sleeping more at night (but not all the way through yet), and he's so alert and focusing on stuff. Just this morning, Sean had him on his chest while playing his gameboy and Jonathan turned around into a little ball like a cat and looked at the gameboy screen with Sean. I so wish I had caught a picture! He grabs onto stuff and puts his binky in his mouth by himself (so much easier on me!).
I just am enjoying seeing him explore his new little world!