Fishing Pole likes rare - pt 1

I've been putting off talking about this for a while.  Putting it out here seems to make it more real.  Sure I've told ppl IRL but even then I can talk about it nonchalantly and not really express how it's affecting me..

Let's go back to the beginning, shall we.

Fishing Pole turned 6 this year. 

He still wears pull ups due to incontinence.

He was briefly potty trained from age 4 to 4 1/2.  To me, 4yrs old is old to be just potty training but I know some of his biological siblings also had potty accidents so I figured between that & all the hospital stuff he's been thru- whatever!  At 4 1/2 , he messed up his lead to his pacemaker and we made a trip to the Big Hospital for an adjustment.. It was during that trip that he had his first accident.  I remember standing beside him while he got his chest xray to check the lead & he said "Mommy, I have to go potty!" so I said okay, just a sec (they were getting ready to shoot the xray) and he peed all over the floor.

Things went downhill from there.  Several of his drs tried to say it was behavioral.

He started kindergarten in pull ups.  And we'll probably be starting 1st grade in the fall in pull ups.

Last year I decided, this is not behavioral.. Let's go to urology and see what they can figure out.  We waited months for our appt only to have it canceled due to the dr being sick.  Months more for the reschedule and finally we went in March. The only advantage to this new appt is that it was at a closer hospital and we didn't have to drive hours to the Big Hospital. 

Now quite honestly, I assumed I'd go in there and have them find nothing & tell me that it's behavioral because that's what everyone else has told me.  But we all know what happens when you assume..

Just prior to the appt, we had an ultrasound & xray . Then we headed upstairs.

We saw the nurse practitioner and her team (4 ladies in total).  Fishing Pole does not have a shy bone in his body so just whipped his pants down and laid back on the table with hands behind his head.  I'm sitting at the foot of the bed having flashbacks to Daddy Chaos' vasectomy in which I had much the same view.   LOL.

The NP did a full exam, poked and probed at his little winkie.. Immediately she noticed a few things which naturally she wanted to show me and then left to get the surgeon to come look as well.  I admit to laughing when my cool laid back boy was alarmed that the surgeon was a BOY.  He was not at all sure a boy could look at his junk.. Who cares if this room full of girls does though.. LMAO.

We learned a few things at that appt --
- the xray showed spina bifida occult defect
- he has severe dorsal curvature of his pen*s
- he has an accessory urethra .

The surgeon came in, looked things over and announced my boy needed some major surgery on his little boy parts.  He didn't make me feel better when he also announced that his defects are rare and in his 20yrs of practice at the biggest children's hospital in the state, he's only done 3 such surgeries.

We laugh at rare.. If something is rare, my kid is going to have it. lol. When the nurses and I commented on that Dr Wienie said that actually it kinda made since.  Fishing Pole's congenital issues (heart defects, winkie defects, spine defects) all are midline and are formed at essentially the same time frame.  Yet another experience that makes me want to smack the idiot woman that birthed him.  Damn drugs.


We left that appt with another appt the following month at the Big Hospital for some pre-op testing. I left that appt in shock that I was just told of two new issues with the possibility of more (spina bifida?).  To say I was shell shocked would be putting it mildly.



xoxo,