Monday, August 31, 2009

His Eyes...

I'm off to Dartmouth tomorrow.
Ben's having more eye issues.
The phenobarb really seems to help,
but I'm wondering if his levels aren't high enough.
He hasn't had these since his last hospital stay
when the dose was increased.
They've just started popping up again.
Hopefully the good Doctor
will be able to help us.
I'm including this video
so that I can show him what they look like.
It's quite disturbing...
video
Wish us luck!

Saturday, August 29, 2009

In Need Of A Smile?

GREAT!
Because I've got a few
I'd like to share with you.






There...is your heart happier?
MINE sure is!
I just LOVE this boy.
His smiles are like precious gems,
They are RARE!
We try and catch them on film when we can,
often I'm not quick enough...
and by the time the camera is ready,
his smile has already gone.
We don't take ANYTHING
for granted with this boy...
not even his smiles.

Thursday, August 27, 2009

Size DOES Matter...

Atleast right now anyway.
There are days that I wish I could transform Ben back into his infant self. Not because he was cuter, but because it would be SO much easier to care for him. My back would be much happier too. I look back at this picture and can't believe how big he has grown.
(and with our genes...we don't grow 'em small)
50lbs! That's how much he weighs now...50lbs with some serious STRETCH in his limbs. The doctors thought for sure his growth would be stunted. It hasn't. For the most part, I haven't minded. It's been fun watching him grow out of size after size knowing that I can still hold and carry him. Right now...I wouldn't mind a shrinking potion. Just temporarily. I ache to pick him up and hold him...but I can't. My heart says YES! But my body tells me "not yet". It's hard to wait. It's just not the same sitting next to him, holding his hand and kissing him on the cheek. I often tell him to be patient with me...because I have to be patient with myself. I know he's anxious, as am I.3 weeks Ben...3 more weeks.

Saturday, August 15, 2009

Ben's Barber Shop

(no before shots...sorry)
You know Ben's hair is getting LONG
when your friend calls to ask
if she can cut his hair.
YES! I tell her.
His sideburns were looking especially long.
(B's neighbor came over and cut it)
They put him in his bath chair,
(clever!)
and cut away...
It's a messy process.
(drool and hair do NOT mix)
AFTER!
Doesn't he look SO cute?
I can never get enough of his beautiful wrinkly head.

She took some shots from every angle.
She told me that she started shooting
(pictures...that is)
and she just couldn't stop.
I know exactly how she feels! :)

Friday, August 14, 2009

While you've been gone...

Dear Ben,
I can think of only one good reason that I'm glad you are not with us. Your poor sister has lice. Thankfully her hair is brown so that I can spot the little buggers easier. I got to thinking tonight. It's a really good thing you aren't with us at this time...even though I MISS you terribly. Think about your beautifuly wrinkled scalp. I bet the lice would have a FIELD DAY on your head. It's like built in caves and ravines. How would we ever find them in such deep places? Until we get this LICE thing under control, I'm grateful that you are itch free over at B's house.
Just know how much I can't WAIT to wrap my arms around you...
and SMOOCH your kissable cheeks about a thousand times.
Until then...stay well and safe.
I LOVE you my strippling warrior! :)

Friday, August 7, 2009

i MISS this boy...

He came to see me in the hospital,
I haven't seen him since.
I'm in recovery mode...
and I can't lift him.
That means I can't take care of him.
(right now)
He's visiting his second mom for a little while.
Thank goodness for her...
but I know he misses me terribly.

Tuesday, August 4, 2009

Bag Buddies

Ben came to visit me in the hospital.
It was very healing to have him with me.
We cuddled for 3 hours.
Steve's first words were:
"Hey look, you're bag buddies!"
as he lifted mine next to Ben's
(oh brother!)