Thursday, June 14, 2012

Its official/Doctors names/Weirded out….

Going to Mayo is finally official:
The scheduler had to schedule it out to July 11-12 
(remember: July 11th….important for weirded out), 
he was able to get all 4 appts scheduled into 2 days.

 Corb will be seeing:
Dr. Stead….Peds Neuro
(Squire (Matt) M. Stead, M.D., Ph.D.)
Dr. Lee….Neuro surgeon
(Kendall H. Lee, M.D., Ph.D.)

Nurse for videotaping, and the education consultant

Ok onto weirded out….a while back me and Corb’s fortune cookie said: 

Well I marked it on my calendar….when I grabbed the 
calendar to see if the dates the scheduler had would work for us
POP there’s the little blue star I mark for 3 months later
JULY 11!!!!

I was so shocked I almost couldn’t talk to the soon as I got off the phone,
 it hit me like a ton of bricks, I started excited, weirded out crying lol
it’s one of those things that was just meant to be

Monday, June 11, 2012

Walmart trip

Corb was gaggy and snorty ALL day still

Saturday, June 9, 2012

Another sick bad day

He's been up doing this since 11pm
It's 4pm and he's still SUPER gaggy (even with Zofran UGH)

This happens over and over, sick days, pain days, Dystonic days and major changes in sleeping patterns....over and over

Friday, June 8, 2012

What a roller coatser, Corb has had many rough days

He had a seizure on Monday, May 28th

Then on Sunday, June 3rd he had a very rough pain day….it always seems like it’s his tummy that is upset (like cramps and gas)

Then on Mon, June 4th he was so tired he could hardly hold up his head....I got a little smile at least

Then came yesterday Thu, June 7th, WOW he’s never had a spazy day like that bad ever

The day started off with him a bit hyper but manageable….he was Corbin talk’in a LOT 

As the day progresses all the more spazy he got, then it turned into one of his full on crazy spazy nasty days

Here he is at midnight, even after I tried giving him some of his Valium (never tried it before and it didn’t help AT all)

He was actually awake until 10:00am, Fri 8th (26ish straight hours of being awake)

He was pretty calm and totally exhausted….I was taking a video of him to show how sleepy he was when he began throwing-up

While I sit and cry because I just don’t know why? I just don’t know? what am I doing wrong? the pain he goes through is clearly his tummy but WHY? how do I help?

And these crazy extreme spazy Dystonic days I’m at least going in the right direction to get help….Mayo here we come :-D I know I can’t “fix” Corbin’s brain but I’m sure gonna do all I can to make his life better.

I know this rollercoaster life is one of those things, you deal with what it is, because it is….but he doesn’t deserve to live like this….it takes a *LOT* out of him OVER and OVER, YEAR after YEAR….

Here’s him still sleeping at 9pm (just about 11 straight hrs)

I'm going to go try to change him without startling him awake, I don’t want to cause a seizure....I don’t know for sure but it seems when we’ve woken him up and tried to keep him awake, shortly after he falls back to sleep he has a seizure

If he stays sleeping I’m climbing into bed and crossing my fingers he sleeps a little while longer :-D

Friday, June 1, 2012


Our turn out was very low but it was a success! (Mayo here we come)

I had my surgery (vaginal hysterectomy); unfortunately I’ve had some minor complications….I ended up at the ER in so much pain, the pain was incredible, it was worse than a kidney stone, it ended up being the gas that they pump into you during surgery (it still hurts bad) I decided to go to my Doc yesterday to check things out, and cause it has started to hurt to pee, so just to make sure I don’t have an infection she started me on an antibiotic….and now today because I think I’m super woman, hate being taken care of, hate asking for help and don’t want to seem like a big baby, I have over done it and now the surgery part hurts like hell too!!!!! :-(

Anyway onto Mayo, I have started to prepare for the trip….because Corb has started to have seizures I decided to call and ask the Mayo Neuro we’re going to go see if he could just suggest a seizure Doc for Corb, that way maybe I can get both things taken care of at the same time (and of course I also need the Neuro to know about the seizures)….well GREAT news, he deals with seizures too (but if needed he will suggest a seizure specialist) Yay Us!!!!

I spoke with the normal scheduler, we discussed Monday June 18th, as late in the day as possible, she’s having the Neuro’s personal scheduler get back to me because the Neuro may want Corb to see other specialists on the DBS committee (this Neuro is amazing, he personally called me back when I wanted to know if he’d see Corb again, he even remembered us). If all goes well we’ll be able to just leave early on Monday for the first apt, for sure sleep over Mon and then go from there!

                                                         I love him SOOOO much
 Daddy, Momma and Corbin's hands of love heart