Beyond Infertility

March 3, 2010

You know it’s bad when…

Filed under: Uncategorized — beyondinfertility @ 11:35 am

You know it’s bad when you think a cereb.ral p.als.y diagnosis is preferable to the one you just might be handed.  Everything went extremely well at the ENT.  His ears, nose, and throat all looked perfect.  Whew!  At this juncture, I’ll take anything positive I can get.  The ENT was top-notch.  He displayed genuine empathy.  He actually looked pained for us.  He said he would bet his career that this is something neurological.  Pretty bold statement.  I knew it would only be hours until we met with the pedi.atric orth.o.pedic doctor.  So, time would tell.

Between the two appointments the day went to absolute shit.  Four doctors appointments in two days has a way of making a two year old go absolutely crazy.  He was at his absolute worst behavior.  My mom and I just stared at each other, both knowing that we need a break….desperately.  More on that later.  We also knew that he was only acting this way because of the visits where they make him do the stupid human tricks.  He gets poked, prodded, paraded, and ends them in pain.  Not fun for him or for us.  I’m glad I didn’t know the worst was yet to come.

We got to orthopedic doctor a half an hour (as we were told we had to do) early, but they didn’t get us back into a room for an hour after our appointment.  Then, we waited an additional 45 minutes in actual “box.” As you feel like a caged animal.  Two small children, one little room.  There were no children’s books or toys, despite their office being strictly for peds.  What gives?  I had wisely put him in a pull up on him in the car between appointments.  I had thought he would nap, but that didn’t happen.  Ugggh, no nap!  His pull up was saturated, and so I stupidly put him in underwear.  Half an hour in, without warning he peed.  Great.  Now, he soaked.  I rummage through the Marr.y Po.ppins diaper bag, and thankfully had a spare pull up in there.  I put that on him.

So just as we are all on the brink of insanity, the doctor shows up.  He examines the little guy.  His specialty is in cere.bral pa.lsy.  He looks at us and very matter of factly states, “Nope, not cp.”  Our eyes dart to his with shock.  What the heck is it then?  We ask about a zillion questions, and the very short of it is.  Many of what he is exhibiting is the direct result of maternal substance abuse.  Fuck.  However, there’s more to it than that.  He believes that there is also something neurological on top of that.  There is no telling if what’s going on is fixable or not.  There’s no guarantee that anything out there can make the situation better other than good old fashioned therapy.  Shit.  However, he stated we would have to see the pedi.atric ne.urologist to figure out exactly what is going on.

I think my heart sunk.  I almost died when he said that in utero a part of his brain was damaged due to the chemical abuse he sustained.  That damage isn’t repairable.  With that he stood up and said he was also going to put us in touch with a develo.pmental pe.diatrician.  He said he would do his best to get us follow ups with the specialists as quickly as he can.  He was very kind, but not the sort to sugar coat things.  The thing that made me want to lurch the entire contents of my lunch was when he had sincerely looked in my eyes and said, “I wish this was cp for you.  You can help muscles and bones, but you can’t fix brain damage.”  All I could do was force a slight smile, nod in understanding, and blink a lot.  There would be no tears in front of my son.  No way in hell.

So, last night was hard.  We still sang with enthusiasm to our little Pink for her special day.  She devoured a cupcake, and we did our best to keep hope in our hearts.  We refuse to let go of the idea that there could be something out there that can help.  We will wait for the next appointment before assuming the worst.  We will work diligently on the task handed to us from the therapists.  We will do our best to make sure each day we do our best to help Blue reach his potential.  I won’t give up on him.  I won’t let him down.  Once we get his appointment we will know more, and hopefully get the big picture.

I could use some strength.  Right now I’m pulling all I have from the depths of my heart and soul.

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9 Comments »

  1. Oh honey, I’m so sorry you’re facing such scary news right now. I’m so mad that Blue’s birthmother hurt your baby boy.

    You can get through this, and help your gorgeous boy through this. Sending you many hugs, thinking of you.

    Comment by scarredbellybutton — March 3, 2010 @ 12:41 pm | Reply

  2. I’m sorry. I hope you guys get the answers you need soon.

    Comment by Jessica — March 3, 2010 @ 12:53 pm | Reply

  3. I’m sorry.

    Comment by Heather — March 3, 2010 @ 2:10 pm | Reply

  4. You’ve got the strength – you just need a little rest to restore it.

    The thing about the brain is that no one really knows how it works. So, don’t lose hope – kids are resilient. Maybe he’ll need more from you than you expected, maybe he just has a couple hurdles to scale.

    I hope the neurologist can give you good information, so you can create a plan. Restoring some illusion of control of the situation will probably help too.

    Comment by a — March 3, 2010 @ 2:53 pm | Reply

  5. *hugs*

    Comment by Alex — March 3, 2010 @ 8:13 pm | Reply

  6. The brain is an amazing tool…and I fully believe that even if you can’t repair things in there, you certainly can re-train it. Your determination is exactly what the little boy needs. Take some time to be pissed, too, and please don’t forget about yourself. If you don’t get a break, you won’t be of any use to the kids, either. You continue to amaze me…through your entire journey, I am amazing by you. I’ll have plenty of hope for you when you’re not feeling as hopeful. Hang in there.

    Comment by RenovationGirl — March 3, 2010 @ 9:15 pm | Reply

  7. Oh my gosh.

    You’re doing an amazing job keeping your head above water, my friend.

    Comment by sky — March 3, 2010 @ 9:28 pm | Reply

  8. I’m so sorry.

    Comment by SassyCupcakes — March 4, 2010 @ 2:43 am | Reply

  9. I am so, so sorry. I can’t even imagine how you must be feeling right now.

    Comment by lifelemons — March 4, 2010 @ 3:00 am | Reply


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