Story #14 - Chomp!

Big day in the Haley household! Caleb fed himself IN FRONT OF ME!  Oh yes, he's somehow decided that it's ok for me to not feed him, so he doesn't need to sneak around behind my back, shoveling puffs into his mouth!

I wish that he could just get those puffs to actually land in his mouth instead of remaining stuck to his palm, or on his chin, or stuck to his chest... That coordination part will come soon enough- he's making awesome progress!

Yay!

I had a big day at work today and it went pretty well.  Now that it's done, I'm feeling a lot of stress off my shoulders.  I'm looking forward to relaxing a bit tonight...oh, and I owe Ben for taking baby duty two nights in a row so I could get some rest beforehand, so I'll be paying my debt with some rought nights I'm sure. I guess last night was pretty awful- Caleb woke up coughing before we even went to sleep and then seemed to have a REALLY hard time getting back to sleep, or he just kept waking up.  Ben said he finally fed him at 3:00 but he really was up almost the entire night before that. 

And there I was...sleeping. What a horrible Mommy.

I'll be paying my dues, don't you worry.  And don't you forget that I pulled night duty for six months before I went back to work! ;) Haha, you know I need my mommy-guilt fighting self-justification...

The littles did really well today with Jessica.  Caleb is back to eating pretty well again as opposed to his weird chomping-on-the-bottle habit that had started this weekend.  And Grace is napping well again! I'm not sure if it's just us or if she was going through a phase, but I guess we'll find out next weekend.

Unfortunately, we got some rough news from the neurologist today.  He called to let us know that he had Caleb's MRI reviewed by two very good pediatric neuro-radiologists at Phoenix Children's and they came back feeling that the MRI was definitely not normal.  So we're back to that negative place, thinking about why it's not normal and what that means for little dude.  It's showing that there's too much fluid around his brain, that the volume of white matter is too low, and that his corpus calosum is too thin.  I asked if this could be caused by genetic or chromosomal abnormalities (which we still need to go get his blood drawn for those tests...but I hate the idea of subjecting him to that AGAIN...), but he feels that it is likely due to either an event in utero or some sort of chronic condition.  Ugh. Talk about the guilt setting in for me. I'm trying not to be in that place and just live in the moment, relishing the amazing things that he's doing and the progress he's making, but those words are hard to erase from my memory.

I also asked the neurologist (who we really like by the way- he'll be following Caleb now, which I'm very pleased with) if this was something that was "fixable".  He said that absolutely, until we have a definitive "diagnosis", everything is improveable! So that's where I'm trying to live right now.  Understanding the hope that is inherent in a situation like this, but accepting where Caleb is and what his capabilities are right now.  He's not "normal" per say- he's developmentally delayed and he has some abnormalities in his brain that are minimally defined...but he is making progress.  Nothing can truly define these children's capabilities in the future.  What we know is that he has some limits right now.  We'll push him appropriately. We'll make sure that he has the stimuli and the therapy he needs to develop in the best possible way that he can. And then we'll cherish those baby steps, literally and figuratively.  We'll celebrate the wins and his success compared to himself, not compared to any chart or any other baby...twin included.  And then we'll revel in the miracles that come along the way.

This may not be what I envisioned for my son right now. This may not be what others would consider success.  But it's the hand that my little man was dealt, and it's the hand that we were dealt as a family. And there are so many beautiful possibilities therein.

I mean, just look at this face.  What a wonderful life.

Classic Caleb Face.  What? Are you looking at me? Please, no more paparazzi...

And the Grace Face to match...

Priceless.

Mom. I'm eating here. Get the flash out of my face.

Oh yeah, rocking the food-grab!

And actually having some success with the food placement!

And rocking the baby mum-mum...

...and the sippy cup!

All shampoo'd!

:)