FISHER CATS

Tuesday Steve called me and asked if we wanted to go to a Fisher Cats game. It's a minor league baseball team that plays in Manchester, NH. He was given 5 tickets to a box suite. How could I say no? I drove down and met my mom at the Massachusetts border to pick up Kaleb and Stevie and we met Steve and Kayla at the ball field. It was a really fun night. Lots of food, fun and togetherness. As fun as it was, we missed having Benjamin with us. The Fisher Cat's Mascot came up to see the kids in the suite.

The girls filling their bellies.

Stevie and her crazy faces.
Kaleb enjoying his time at the game.
I think this is the fourth time I've seen my husband in 8 weeks.

Stevie watching the game from the outside seats.

Kaleb intensly watching.

The highlight of the night was Kaleb retrieving a foul ball.

Stevie was hoping to catch a foul ball but wasn't as lucky.On the way out of the park...the kids spotted THIS guy. His hair was unbelievable. It's the biggest afro I've ever seen in my life. I think the girls were mortified when we asked him to pose with them. It was a great night. It felt good to be back together again.

SET BACK

Ben failed his trach trial today.

He just wasn't ready.

Turns out we WON'T be leaving.

Atleast not tomorrow.

COUNTING DOWN...

Sorry I've been lazy in my updates...I guess you can consider NO news GOOD news. Ben is over the acute phase of his illness and now weaning from the vent. He's done progressively well that I anticipate a Monday departure. It's all up to him. I continue to give him all the cheerleading he needs to encourage him down that path.

Along with the encouragement comes LOTS of snuggles and LOTS of kisses. A few bribes here and there don't hurt either. I promised him a trip to see the fishies in Boston if he gets better in the next couple of days. His eyes got nice and big, he seemed to like that idea. Nothing like a good field trip to cure you. I hope to take a few of those this week with the kids since it's their school vacation.

THE RIDE HOME

My new (old) van acted up on the way home yesterday. The exhaust pipe fell off. I was too inpatient to wait for Steve to drive an hour to rescue me so I enlisted the help of my c0-pilot, (Kaleb)

Here's the lovely pipe - hanging
This was my first attempt at lifting the pipe off the ground. These lasted about 10 miles before the friction splayed them. What else to use? Hmmmm.....
How about some THAI WRAPS? Typically used for wrapping hands while punching bags...I found they came in handy for lifting pipes off the ground.
*****
As crazy as our day was...Kaleb and I LAUGHED all the way home. We were a "Motley Crew". We even got pulled over by the police, who was apparently concerned that I wasn't aware of our hanging pipe. Seriously? 3 hours later, we finally made it home.

BROTHERLY LOVE

GET WELL SOON BENNY!
LOVE, KALEB

HAPPY BIRTHDAY STEVE!

Thanks for making me laugh...

EVERYDAY!

(I LOVE YOU)

Birthday Cake coming soon....

PINK CHEEKS

See these CUTE, KISSABLE, PINK cheeks?

The pictures do not do it justice - but they are PINK!

Ben's having a rough day.
He's needing more vent support.
I'm worried that he's spiking another fever.

If he does, they'll be taking more cultures...

blood, urine, trach, etc.

This is not unexpected with RSV...

just not welcome. :(

PICC LINE

Ben had a PICC line put in this morning. It's a longer dwelling IV. He's such a hard stick and has needed lots of blood draws. Having this line will cut down on the amount of sticks that he has to get. Ben had a really rough night and morning of constant coughing. He was given morphine and versed for the procedure and so thankfully is finally able to rest.

FEVER BOY

Only Ben could make wearing a facecloth

LOOK GOOD!

RSV POSITIVE

RSV is a NASTY bug for kids like Ben.

He could use your prayers.

Still spiking high temps.

Thank you!

HOME LONG ENOUGH...

...to have some birthday cake,

before getting a first class trip

back to the PICU.
Our home away from home.
(sigh)

NEEDING SUMMER

PLEASE...I need summer here - STAT!

This poor boy can't take another illness.

He's brewing something...AGAIN!

His little body is tired.

And so is his mother.

TIRED

It's always interesting to me the emotions that come rolling out once I jump back in to everyday, normal life. Mostly because I'm tired, physcially, mentally and emotionally spent. It's what I like to call the 'let down' from the hospital. I put on my brave face and swallow all the stress and emotions of the situation, until I come home. Being surrounded by sick children is just not normal. Sitting in an Intensive Care Unit for 26 days straight is just not normal. Seeing your child COVERED with needle marks because he is such a hard stick is not normal. Wondering how much longer your son can go through these illnesses is just not normal. But, I also know how privelaged I am to be caring for such an incredible little boy and I would do it again and again and again. SO... when I first come home, sometimes I cry. Sometimes I don't want to show my face in public for a little while. It can all be overwhelming. People that I run into have 'heard' about our big adventure, but might not know details and so they ask. Then I tell the story....again. Depending on my mood at the moment, I might smile or I might cry. I'm what you would call unpredictable. I'm also tired. (did I mention that already?) This whole trip has finally caught up with me. I'm plain exhausted - to the point that I feel physically ill. It happens. It's even better when people LET you know how tired you look. THAT'S my favorite. "You look TIRED". Thankyou, because those dark circles under my eyes didn't tell me that already. Just another reminder. That's why I appreciate this picture - it's one that Stevie took. She was a little off on her camera work...but I didn't mind. She mostly left out my tired eyes. It's also captures how I feel. I'm happy to be home. I'm happy that Ben is still with us. I'm happy to be with my family again. I'm happy to be making them dinners and doing their laundry. Things that are taken for granted each day. But I'm also hiding for a bit, atleast until I can get my crazy emotions under control. Just call me Willow.

JUST BECAUSE

Just because I like this picture...

and partly because I think everyone is tired of me talking about my hospital life. So I guess I won't go into detail about how I AGAIN spent my day in the emergency room, or how Ben's sodium level was dangerously low. Instead, I'll share with you that this cute daughter of mine is such a joy to my life. I love that she is so happy and carefree most of the minutes in her day. I love that she is a peacemaker and that she can never hug her daddy enough. I love that she has a special way with animals and that she adores them. I love that she can laugh at her mistakes instead of getting annoyed. I love that she gets up HAPPY in the morning. It certainly helps me to be happier. I don't, however, love that her knees are swollen again due to JRA and that she couldn't run track today because they were so painful.

HOME

(pictures by Stevie and Kayla)

We are HOME!
We are WARM!
(thanks a bunch Aunt Shirley)
We are HEALTHY!
We are HOME!

DEAR BEN...

HAPPY 7TH BIRTHDAY!
*****

LOVE, MOMMY

HAPPY DAY!

Please excuse our blogging absence...

We were busy PARTYING!

It was a FUN day!
A new hat, (thanks Amy)
a new friend,(thanks PICU)
and a new departure date! (Sunday)

IT AIN'T NO JOKE!

I was hoping for HAPPY

news this morning.

Ben's x-ray looks WORSE

after weaning him yesterday.

I was hoping the Doctor was

playing an "April Fools Day" joke.

(nope)

His vent settings will stay the same,

no progress will be made today.

It was a little discouraging.

This means that Ben

will be HERE on Saturday.

The day he turns 7!

I'm heading home to see my family.

I'll be back again tomorrow.

(sigh)