Monday, November 30, 2009


Today is Ben's 2nd day on his antibiotic. I got a phone call from Steve telling me that he is having an allerigic reaction to it. Not great news because he is allergic to everything under the sun. This is pretty much the last oral antibiotic that he has been able to take. Now Steve has to take him in daily to the ER for IM shots. His neurologist wants me to take him to the allergist when I get home to see if his allergies have more to do with the colors/dyes/flavors of the antibiotics vs. the medicine itself. Stay tuned!


(this picture was taken in the ER...doesn't he look MISERABLE?)
I leave town for a week and Ben gets sick. Yesterday I got a phone call from Steve telling me that Ben developed a high fever. (1o2.5) He took him to the ER to see if they could figure out what was going on. The chest x-ray didn't come out (probably because they don't know how to position him like I do), there was never any viral panel done (WHAT?), and his white blood cell count was elevated. I can't believe with a runny nose that they didn't test for RSV. Steve has kept him on the vent to give him some extra support and he is currently on cipro and toby nebs. So far he's stable. I'm praying that he will hold out until I can fly back on Friday.

Tuesday, November 24, 2009


(post bath pictures)

Friday, November 20, 2009

Date Day

Today I took Ben on a date...
to Dartmouth.
I love date days.
It's our time to spend together.
Today we saw the pulmonologist.
I told her that Ben is OFF the vent.
We had x-rays taken
to see his left side.
It looks good.
Not great, but good enough.
I told her that I'll vent Ben as needed.
That sort of fits our life style perfectly.
She was happy with that.
He also got his second H1N1 dose.
That was his least favorite part.

To make up for it,
I gave him LOTS of kisses...
and then we went for ice cream.
(I gave him the first lick!)

Wednesday, November 18, 2009


Ben lost his 11th tooth today. He's only 7 yrs. He started losing his teeth at 3 years of age. I am actually happy because I like his toothless grin. It's cute. So today I was cleaning his tongue with some gauze. I must have bumped that tooth because it popped right out. His teeth have always fallen out that way. There isn't much of a root to hold it in place. I love this second picture. He's totally in awe of his most awesome accomplishment today. 11 teeth down...7 more to go.
Goodnight tooth...
Hello Toothfairy!

Tuesday, November 17, 2009


Today I took Ben up to Dartmouth because Kayla had her rheumatology appointment. He always love to go when it's not HIS turn to be seen. So I got him cleaned, dressed and fed. Then we drove to pick up Kayla and as I'm pulling up to the curb to get her, she's giving me this weird look. "I KNOW!" I say as she hops in the car. It was making this really loud noise every time the tire on the right back side rotated. We drove to the shop to have them take a look. While we were waiting, I climbed in the back with Ben (he was on the vent today) to help him in case he needed to be suctioned. When I looked at him, I could tell something wasn't right. His whole body was tremoring, including his tongue. I have never seen this sort of activity before. It was a bit alarming. I took him off the vent for a minute to see if that would help. It didn't. I tried different things to see if I could break the cycle. Nothing worked. I called Dr. Filiano, his neurologist. He told me to give him his night dose of phenobarb. It took about 20 minutes for it to kick in and that finally kicked him out of the tremors. We continued on our way to the hospital and Ben ended up being seen by Dr. Filiano. He is always so good to fit us in as needed. He increased Ben's two seizure medications, we'll see if this works.
This picture is right before we were heading out the door. He wasn't too happy with me as you can see.
Not sure how well you'll be able to see the tremors in his tongue. I actually had a better video but deleted it by accident. The car was too dark to take a picture of his whole body tremors and they were so fine that I'm not sure the video would have picked them up. They were the type that you could feel more than see. It felt as if his whole body was midly vibrating.

Sunday, November 15, 2009

Snug as a BUG...

Not sure if Ben is coming down with something or not because THIS is how he looked ALL day. Ben's not a napper. The only time he sleeps a lot is when he isn't feeling well. Regardless...there is nothing sweeter than a sleeping child. I LOVE this boy!

Thursday, November 12, 2009

Dartmouth Day

We're feeling mighty light today. NOTICE anything? Or should I say the LACK of a somethin' somethin'? Ben's off his vent. We took him off last night and so far so good. I was happy not to lug it to Dartmouth and we even stopped by the PICU to brag about it. I'm keeping him covered up because we certainly do NOT want to bring any extra friends home with us. They even gave us a pager at his doctor appointment so that we could go somewhere secluded and NOT be around the general public. That was very considerate of them. So as I type, we are waiting for the page to head down for his appointment. He's seeing his orthopedist today. I don't anticipate any big changes for him. He is however, due for full body x-rays to see how things are growing/changing. I'm worried about his left arm still, the one that is chronically swollen due to his chronic dislocation in his elbow. I'll update if there is anything new. Off we go! :)

Tuesday, November 10, 2009

Tired Boy

My morning routine with Ben takes me close to an hour. I give him his meds, do his teeth, face, lip and eye care, change his diaper, get him dressed and move him downstairs to the main floor.
It's hard work for his little body. By the time I put him in his beanbag and hook him back up to the vent, this is usually what happens.
Back to sleep. :)

Sunday, November 8, 2009

Ben's Corner...part 2

I took more pictures to give you a better look at how his corner is set up. It's tight...but for now, it works.
Above you can see his feeding bag and pump hanging, the vent is just on the other side of Ben's can see the purple top and all the tubing. On the shelf right above the vent is where we keep all of his daily ritual stuff, like teeth, face, lip and eye care. On top of those shelves are his can see the big syringes poking out of the top of the bucket. To the right is one of his suction machines, that one is connected to his vent. To the right of that is his pulse oximeter. This lets us know Ben's heart rate and oxygen saturations. On the shelf above it to the right is a box of Ben's extra medications. I refill all his syringes and smaller containers from this. We keep gloves, sharps container and extra chucks there too.
I like this view because you can see how I set up his bed. Because of the lack of space in our room, I organized the bed so that he would have all of this storage space for all of his equipment and supplies. Only two drawers hold clothing items, the rest...medical stuff. AND, this isn't all. I have about four more of these drawers in my room not shown here full of more medical stuff, and the majority of my closet space belongs to Ben too. The mattress that he sleeps on is a hospital grade one. It is a pressure control mattress, allowing Ben to shift all through the night preventing bed sores. It's worked great so far. You can see at the bottom left of the picture a piece of our bed. That's how much walking space there is between my bed and Ben's. This picture shows the end of the bed. Above you can see a new flat screen tv that we purchased (early Christmas gift) because it's really, really hard to get Ben down to our basement where the tv is and my kids always look forward to our Friday night family movie nights. It's the only time the tv goes on during the week. So, we bought it so that Ben and I can be part of family movie night again. There you have it, Ben's corner. I know...exciting! ;)

Thursday, November 5, 2009

Guess Who's BACK?

And CUTER than ever???
Welcome home cute boy!!!

Monday, November 2, 2009

Chillin' at the Billin's

I LOVE my friend Becky Billin.
She takes such great care of Ben.
She couldn't resist taking these pictures today.
They made me LAUGH!
THIS is why he likes to go to their house...
he has COMPLETE control of the remote.
That just doesn't happen at our house.
Funny boy.
His sister's are still very sick.
Still spiking fevers of 102,

with chesty coughs and runny noses.
It would NOT be good if Ben caught this.

Hopefully we'll be together soon...
I'm having serious withdrawls.

Sunday, November 1, 2009

Ben's Corner

I actually took these pictures the first night Ben came home. He shares a room with Steve and I so that we can keep an eye on him during the night. Our bedroom is really not that big and so we've had to do some consolidating and organizing to be able to fit all of his equipment and STUFF in our modest room. Steve worked really, really hard getting his corner ready while we were in the hospital. He did a great job.
These pictures don't quite show ALL of his stuff, but it gives you a pretty good idea of what it looks like. Right now Ben is with my good friend B.B. so that he does NOT catch the's going around my house right now. When he is back, I'll take some updated pictures with more shots of his corner.