Thursday, January 15, 2009

Day 229 - Jan 15, 2009

Today was another good day. Kevin's appetite has returned full force and he ended up eating dinner 4 times in 3 hours. We did go down to the house for a few hours today too and it was really nice.

He did all of his therapies again and is just popping out with more and more words. He is also sitting on the end of the bed (or the edge of his chair) for minutes at a time and we are working on his balance while sitting there.

We also have him stand to transfer from bed to chair every time and I try so hard to get him to stand still for a few minutes, but he always wants to move. Take a step or two - just move. He never could stand still, lol.

And he is becoming accustomed to what he looks like, but I must say he isn't seeing the 'real' thing. His head will be extremely sunken on the left side (until we can have plastics step in and fix it), but because he has CSF built up over the flap, it almost looks normal. This is what he believes he looks like and I am going to let him believe that. I was happy to see him remove his head bandage tonight to show my sister while we were Skyping though.

We have also seen a huge increase in how much he is using his right leg now. He is even able to pull it up to put his own sneaker on and he now finds it funny to kick everyone in the butt with it when they turn around. He can definitely take a step with it, but when it comes time to put weight on it to take a step with his left leg, he does drop a few inches. It's going to take time and lots of practice to make it strong again.

We also had a visit from the attending neurosurgeon (not the young resident) this afternoon. I went in this morning and told my doctor that I was going to be calling my congressman today if the resident showed up again. Lucky for all of us the top dog came in. We are going to give it until Monday to see what happens with the CSF and if it continues to go down, we will reprogram the valve again to a lesser drainage rate. At this point I don't believe we will have another surgery, but that could change in the blink of an eye.

I think that's about it for tonight. I did take some pictures today, but frankly - I am just too lazy to download them tonight. It is now 1am and Kevin just fell asleep a few minutes ago. I want to do the same so maybe tomorrow night...

Before I forget though...Petra - are you ok? You mentioned needing extensive treatments for you health and I am just hoping you are not too sick? It's none of my business so if you don't want to answer - you don't have to...


Miss Em said...


Kevin 'ate dinner 4 times in 3 hours'. Did you need a wheelbarrow in order to move his stomach around? Damn, if I ate like that they would need a fork-lift for my short wide backside just so I could stand up and walk out the door.

'He alway wants to move'. What are you doing, jangling the m-van keys and saying you want to drive?
Hey, Tampa, look out Kevin's heading for 'Big Blue'!
I know I BAD but, hey, I couldn't help it. Besides I would love to have this dream come true.

'Accustoned to what he looks like'.
I'm with you why burst his bubble. He'll figure it out and that's about the time the plastic surgeon will be ready to begin his job of fixing the problems.

Right legs working---GREAT. YAH-HOOOOOOOO.
Butt-kicks. I think I'll just back out of the room. Thanks anyway.
Leslie, your right. Exercise and strength traing will defineitly help to make the use of the right leg more efficient.

Sometime 'P-B Mom' those snarling growls do work and get the problems removed and the more capable on the job. Now, they know that the BS and the Incapable WILL NOT BE TOLERATED.

PICTURES!!! You got pictures. HOD-DAMN!!!! When you've got the time so do I. Can hardly wait to have the opportunity of seeing that Kevin is getting better and giving everyone the business of being a mischievous young man whose now bored and feeling his oats.

Prayers of Thank-you and Laughter of Happiness for this young mischievous, bored man.

Miss Em
Austell, Ga.

Alison said...

Whoo! So glad to hear that you all had another great day, and I'm EXTRA GLAD to hear that you got the top doc in there rather than the resident. You tell 'em, and they'll listen.

Hoping that you don't have to go through anymore surgeries anytime soon and that therapy keeps going well!

Long-time RN said...

Amazing to hear Kevin is making these steps in progress. Truly wonderful.

Glad the top neuro was in to see Kevin, and the shunt is continues fuctioning.

Blessing to you all!

Leslie said...

Great News!! Sounds like Kevin is making progress in leaps and bounds! WOHOOO!!!!
{{{{{{{Hugs to all of you}}}}}}}}

Jodi said...

YAY YAY YAY!! Another great day! I love it when you guys have a good day! Awesome news! I can't WAIT to see the pictures!

Great job Kevin! Keep up the positive attitude and appetite!

Here is to another great day for all of you!

Healing and positive thoughts for Kevin.
Strength for Leslie and Breezy.
Safe thoughts for all military personnel and strength for their families.
Andrew's Aunt Jodi

Lorraine said...

Hey Guys
Wonderful news! Keep it up Kevin fight like Rocky. Believe me you wouldnt want to be home and outside today it is -5% this morning. the old river will be freezing. Keep strong guys, keep fighting, and one day at a time.

Take care,
Rick, Lorraine and "Howard the duck"

Anonymous said...

Taking baby steps is just not in his vocabulary huh! WOW. What great news.

I am so glad to hear the progress. Pretty soon he will be running down the hall! If he keeps this up, your gonna have to sell the mini van and buy a car cuz he won't need that van!

Take care and by the way, it was -7 this morning here at home! YUCK LES!!!!!!

Love ya

Vicki C said...

Oh.. glad to here of the improvments.. and so proud of you momma..for fighting for whats best for your child!

The Rock said...

That Kevin is something else ! He amazes me ! I am so happy that he remembers more words now . You are all such amazing people and I am so happy that I came across your Blog so many Month ago .
You asked me ; what is wrong .
I have Hepatitis C , been diagnosed in 2001. I got it from a Blood transfusion many Decades ago. So, the Dr's. think I should try the Interferon ( its like Chemo ) again. I have been on it 3 Years ago and never did go in remission . So , I am not really sure now to do it again ! I been thinking about how sick INTERFERON made me and I really don't want to do it again, but my Husband thinks I should do it again .
But don't you worry about me now, I am fine , just hate to make decisions ! ( Hey, I am a Libra , they have trouble deciding )
God bless you all and keep Kevin movin'

Jessica said...

A good appetite is another great sign! More words and greater range of motion are great improvements, too. Do you think it's the surgery that brought on these latest improvements? Whatever it was, woo hoo!

I hope he doesn't need another surgery, other than the plastic surgery on the plate. Especially if he's started to feel better about the way he looks.

You're in my thoughts and prayers!