Brushing Teeth

PICTURES BY STEVIE

Stevie's my best helper when it comes to Ben.

I often walk in the room to find her

helping Ben with his hygiene.

Today she was helping him clean his teeth.

(atleast the ones that are left)

He doesn't use a regular toothbrush...

Just a mouth swab and some mouthwash.

(although today she shared her toothpaste)

I think the "crest with scope" was just a little strong for his taste.
Minty fresh mouth, just right for kissing!
Ben's lucky to have such a great sister take care of him. :)

Ben wishes you...

Sweet dreams and a

MERRY CHRISTMAS!

Missed you...

Dearest Benjamin, I miss you when you are not here. Last night you slept over at B's house. She's like your second mom and takes such great care of you. Last night was especially lonely. I didn't sleep well at all. My room was too quiet without you here. I missed the sound of your humidification running. I missed seeing the lights and hearing the alarms from your pulse oximeter. I missed listening to the humming of your feeding pump as it runs through the night. I missed the occasional suctioning that you so often need. I missed the chance to visit with you in the quiet hours of the night. I just plain missed you. Today you are home. My day is better because you are in it. Tonight I may not get a lot of sleep knowing that you will have needs to fill, but I know I'll sleep better knowing you are here. I love you Benjamin!

SOMETIMES...

...I try...

...but I just can't resist.

Sleepy Santa

See?

See what my brothers and sisters

do when my mom isn't looking?

Atleast my head will be nice and warm tonight.

Blessings

Life continues to bless us. As most of you know, Ben is up to 50lbs. and still growing. (who knew that growing on love could be so fattening) I never thought I would see the day when my little boy would be too heavy to lift. Most days I still manage, but there are days where I am just too tired. Some days I don't have an option. Our Dartmouth dates (that's what I like to call them) are getting harder. Not only do I have to lift Ben, but I have to lift his wheelchair out of the van all by myself. I would guess that it is close to 100lbs. Even harder is physically lifting it up and into the van alone. Recently we received word of a 'handicap' van. It's through a program called, "Good News Garage". We applied for the van and will have it as our own in about a week. Donations are a wonderful thing. Maybe someday we will be able to donate it to another worthy family. For now, are excited that we will be able to wheel Ben right up into the van and tie down his chair. No more transfers to his carseat. The lift is electric which will make it easy on me. The van still fits our family and so that is a blessing as well.

We are grateful, we are humbled, we are blessed...
Our new van. :)
This is the lift in the 'closed' position.
Rear view shot.
The older kid's bench seat.

Cousins

This is Moriah.

She and Ben are 'Kindred Spirits'.

Whenever our families are together,

you'll find these two together.

I Love...

...His Sweet Feet.

Happy Thanksgiving

I'm thankful for YOU!

Colors

I LOOK GOOD IN RED!

...atleast that's what he'd say if he could speak.
Peace out...

We're FREE!

We just spoke with Dr. Filiano. He's getting rid of the ambien all together and sticking with his clonidine for now. He hates for us to be here another night. We might give it another go in a few weeks, but for now I need to go home because I have sick children waiting for me. Guess the night bonding between Ben and I will continue...that's a good thing, right? :)

Another Night

Another night gone...not a lot of improvement from the first night.
Ben's blood pressure continued to be 70/30 throughout the night.
we had to tip his bed towards his head again,
gave him many IV boluses,
held his feeds,
lots of neb treatments to stimulate
and more oxygen to get him through the night.
Not sure what today will bring.
We're waiting for Dr. Filiano to arrive.
Here is the VERY protected IV
that is extremely important to this stay.
It took them 20 attempts
to finally get this one.
I've seen the battle wounds all over his body.

NOW he sleeps...

The Stink Eye!

Dr. Filiano just came in and informed us that we'll be stayin' another night - FANTASTIC! Cuz really, one night is just not long enough. The food, the cot, the lack of sleep - LOVE IT! Can't get enought of it. :) The picture above speaks clearly of what Ben thinks about that idea...he's giving Dr. Filiano the 'stink eye'!

Through the Night...

If I could sum up our nights sleep in one word, it would be

BLAH!

This is how Ben started the night, around 11pm.
But THIS is what he looked like MOST of the night.

This is Ben's bed, it was tipped down towards his head ALL night. Why? Because his blood pressure was TOO low. 70/30 to be exact. It sent the nurses in a bit of a panic. They stopped his feeds because he was practically on his head with his bed tipped and started him on IV hydration instead. Dr. Filiano had them give him 'recimic epi', a type of nebulizer treatment because it's sort of like a caffine jolt. Makes your heart rate increase. It worked...slightly. Got his blood pressure up to 80/40. Still pretty low. Then they would turn the light on and talk and rub him awake. That would start the coughing, which means that I would end up suctioning him. When I would finally lull him back to sleep, the process started all over again. Now I'm waiting to hear from the doctor's. I'm curious to see if they are going to let us go home. I'll update as soon as I know.

WAAAAAAAA!!!!

(one unhappy boy...)

Ben's being naughty tonight. He's needing oxygen. Could have something to do with the brewing cold that he has combined with some anesthesia. Not a good combination for this child. They came up tonight to take an x-ray. Hopefully he's not growing an infection.

Update

Ben came out of surgery just fine. Found out it took over an hour to get an IV into him. UGH! (that's what took so long) He's a hard stick, very stubborn about giving up his veins. Atleast he was under and didn't feel it. After the dr. took a good look at his bladder area, he decided that Ben can continue to be cathed at night. We are now up on the floor waiting for night to fall upon us. I won't know until morning whether or not the meds were a success. Thanks for checking in...

More Surgery...

Today Ben and I are at Dartmouth. He's getting botox...to his bladder. Don't be jealous. His bladder will ALWAYS look younger than YOURS! :) He's in surgery right now, it seems to be taking longer than I anticipated. Ben won't be needing his foley cathetar after today. They'll give him one for overnight just because of swelling, but after that he'll just leak into his diaper. After the procedure he'll be admitted so that Dr. Filiano can try him on a new medicine to help with his sleeping. Keep your fingers and toes crossed that all goes well and that he will respond to the medicine in a positive way.

Dr. Filiano

This is Ben's Neurologist. His name is Dr. Filiano. He's world renowned. We LOVE him. He's been with Ben since the beginning. He is the "go to guy" when it comes to Ben's complicated issues and we are so grateful to him for that. He has a GREAT sense of humor. He makes us laugh...often. Dr. Filiano also attends in the PICU where Ben is often admitted. It's nice having his doctor there when we need him most. We stopped by to see him yesterday at DHMC. We were in the neighborhood and needed some help with some sleeping issues that Ben is having. He spent 45 minutes with us and numerous phone calls later we're hoping that Ben will be sleeping better.

Ben's making sure Dr. Filiano isn't giving him the "bunny ears"
While visiting with him yesterday he noticed how light Ben's hair looked. He couldn't stop looking at it through the appointment. Come to find out he thinks Ben is depleted in "something", possibly selenium. He snipped a sample and sent it off to the lab. Who would've thought???

My Monkey

I missed my monkey. We were apart for 6 days while I had surgery. Way too long. Good thing he was in excellent hands. I didn't worry about him. I just missed him terribly. Today I got him back. We sat and rocked for hours. My laundry didn't get folded, my floors didn't get swept, and dinner was late getting to the table. I didn't mind though because I got to sit and hold my Benjamin. Life was perfect for a couple of hours.

WELCOME HOME BEN!

MY PUMPKIN

This is my pumpkin. He was in a different patch this year for Halloween. My friend Becky B. had him while I was recovering from surgery. He got to walk in a parade with all the other little Halloweeners. Can't you tell he's thrilled? First year as a pumpkin.

ENJOY!

Pajama Day

Today is pajama day for Ben. Love this little robe that was handed down to us. Ben and I sat in front of our cozy wood pellet stove today - very relaxing!

Ben hanging out with his elephant.

Post Procedure

9 HOURS LATER...

HELLO BEAUTIFUL!

Baclofen Trial

Today was Ben's 2nd "Baclofen Trial". He was put under sedation while they injected baclofen into his spine. This was to see if the medication would help with his contractures. This picture below makes me laugh because this is how he has been all morning. He is ZONKED!

(I think he was in denial of this procedure today)

This is Ben's "wookie". He takes his elephant everywhere.:)
I moved Ben onto the procedure table.
This is Ben getting his sedation.
Here is Ben after he was moved to the PICU downstairs. He'll stay here overnight for observation.
Remember the saga with the dislocated elbow? Dr. Moen - his orthopedic doctor - came by today and looked at Ben's elbow. Because she has now seen it in person, she feels this is an acute dislocation. Because of that Ben will be splinted in the morning because right now his IV (see above) is in his left hand and would be in the way of the splint. They will wait until it can come out before splinting his elbow. I'll take a picture of it tomorrow.

*****

PS: The Baclofen trial failed. It did not loosen him up the way we were hoping. That means no pump for Ben.