Frusterated

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 scheduler....as 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

Walmart trip

Corb was gaggy and snorty ALL day still

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still sick....fell asleep around 11pm

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Another sick bad day

He's been up doing this since 11pm

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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

What a roller coatser, Corb has had many rough days

He had a seizure on Monday, May 28th

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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)

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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 

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

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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)

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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

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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

Fundraiser/Surgery/Mayo

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

Corbin's Dollars for Dystonia - Chipin

Corbin's Dollars for Dystonia

First Wal-Mart outing in the stroller and low tech eye gaze

We had to air up the stroller tires….watch Corb’s face expressions, he’s so FUNNY….I spend every day, all day looking at him: I know every look, every sound and every move 

So happy to be at Wal-Mart 

He was so nice and comfy in his red chair stroller (everyone loved it too :-D lol)

After Wal-Mart

I was showing Corb this Sponge Bob balloon in the store and his tracking was 

Soooo fast (I almost couldn’t believe it) we asked Daddy if it was on clearance could we have it….$1.50 SOLD….I had the string wrapped around his arm/fingers he was so interested, he laid on his bed forever without any crazy movements or gagging LOL

I spent so much time and energy into the Dynavox EyeMax that I slacked on the picture cards I started making (was hoping we didn’t need them, was hoping that he could just use the device) but anyway, all I did was find pics on-line of his fav cartoons and took pics of real stuff from home and pasted the pics to index cards and laminated them with ”Duck Tape” Laminate shelf liner paper and then I used a piece of Plexi-Glass with Velcro strips (each side has Velcro, the soft stuff on side and the rough on the other)

Ok so now to the AMAZING part, (please keep in mind, we have NEVER went over these new cards yet), tonight right before bed we played with the new cards….7 out of the 8 times, he picked the right picture….so cute, the one he got wrong, when I said no that’s Sandy, not whoever it was, he chuckled

PLEASE-o-PLEASE let him understand what pics are and to be able to make the right choice each time Please!

Do with what you have!

Corbin's wheelchair is very dangerous for him and since the seating rep won't call me back about our Rover Stroller prior authorization....I decided to deal with it myself

Sooooo....I used the Rover Stroller frame that was donated to Corb back when someone stole the little wheelchair from the yard....the chair that it comes with it, is WAY to big....so I found a way to jimmy rig his red chair to the frame :-D  

(please excuse the messy floor, duck tape is actually hard to work with lol)

Rover Stroller-drilling

 Rover Stroller-bolting

 Rover Stroller-bolted

 Rover Stroller-totally done 1

 Rover Stroller-Totally done 2 

(the buckle is to hold the frame closed for easy storage) 

 Rover Stroller-totally done 3

 Rover Stroller-Coloring w-Duck tape 1 (I'm the Duck Tape Queen)

 Rover Stroller-Coloring w-Duck tape 2

Rover Stroller-Left arm padding
(arm rests are swimming floaties, zip tied to the frame)

 Rover Stroller-Right arm padding

Rover Stroller-Heal padding

 Rover Stroller-just chill'in 1

 Rover Stroller-just a chill'in 2

 Rover Stroller-just a spaz'in

 Rover Stroller-Just a chill'in watching Sponge Bob

 Rover Stroller-Done

  Rover stroller-Safty buckle on red chair 1

(this buckle is to secure the red chair to the frame)

  Rover stroller-Safty buckle on red chair 2

Life has taken a turn….

As most of you know we “were” planning on moving to Texas as soon as school was out….well that has changed….things just didn't work out for this year....we’re hopeful we’ll get to go next year.

Since we have to stay, I will just continue to go down the path that I started here….as much as I would rather move to be by Dani and my little buddy Ashley (and his special doctors)….I will say, I'm proud; I have worked my butt off trying to get all these services here that Corbin is eligible for and after 6 ½ years I finally did it!!!!

Here's a preview of what's going to be happening…….

Therapy: 

In November, Corb was denied for more therapy sessions….but as far as the company understood, in our state you get 30 sessions each year, without a Prior Authorization….so the speech therapist came on Thursday January 5^th and did her report and the company billed it right away….well on Monday the 9^th while we were out doing errands the occupational therapist called asking if we were gonna be home for her appointment….she was waiting outside….needless to say, I guess he got approved for more sessions lol

Waiver/request form: 

I'm hopeful that I'll be able to help change our screwed up system….I created a form that will make it easier for the doctors or therapists to request items for the waiver to cover….Corbin's worker sent the forms into the state to see what they think….she’s gonna set up an appointment with me soon, so we can go over the forms to see if state had decided it needed something more....I'm more then happy to tweak it to make sure it covers everything that’s requires. 

So far we've gotten a few things that were written up the old fashion way: 

Some stuff we’re still waiting for approval:

Asking the therapist to request items for Corb, is like pulling teeth:
I had talked to one of the therapists and told her straight up that whatever she didn't feel comfortable writing for….I’d just ask the Doc to do it (you should have seen the dumbfounded look on her face, I do what my son needs, sorry if it hurt your feelings). The new Doc was more than happy to sign (my forms) for just about everything I asked her too....like:

Medicaid items: 

We’re waiting for the seating and mobility rep to call about his walker and stroller

also the new Doc wrote a script for Corb to have a custom wheelchair seating eval.

PCW: 

Many many months ago I found a new PCW company.…well for the longest time, just about every week I was checking in with them (with no one ever calling me back), because they still weren't able to get Corbin approved for any hours….I took it upon myself to get them 2 hours a day, 7 days a week from the Waiver until the PA paper work was completed….I talked to the scheduler and I asked her to get it fully staffed first, before we make a start date, NEVER heard from them again….well before I picked that company, I tried to get into a different company but they said it was way too much work with us moving away anyway….well since we’re not going I called to see if they would consider it now….the intake nurse was here, everything is set to go….as soon as Sarah heals from Gallbladder surgery she can start.

Dynavox EyeMax: 

I've always wanted a Dynavox EyeMax for my sweet Corbin Lee, but because we've never had any consistent therapists, there wasn't ever anyone to write the reports for insurance....well since we got approved for the 30 sessions that we had hoped for, we gave the go ahead for the device to be sent to us….we had ordered one and put it on hold, hopeful he wouldn't get denied….we are all so excited, it's so awesome we will get the 4-week trial that our insurance will cover….the REP was here on Tuesday Jan 17^th to help me and the speech therapist get it set up

1 week into the trial….sadly, we’ve “had” to come to realize and accept that this device isn’t right for Corbin and personally, it’s actually not what I thought it was…..I guess I was always under the assumption that it was more of an interactive device….something he could pick and make choices from and something fun would pop up, or we could play with him, with what he chose….well, the rep said don’t even use the word “choices” in the report….the device has to use it for communication only, example….Mom my show is over, then he’d have to go to the next page to say, what one he wants all –by himself- 

Dystonia/New Doc:

Corbin was diagnosed with Secondary Dystonia in Dec 2010….Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. The disorder may be hereditary or caused by other factors such as birth-related or other physical trauma, infection, poisoning or reaction to pharmaceutical drugs, particularly neuroleptics. Treatment is difficult and has been limited to minimizing the symptoms of the disorder, since there is no cure available. Because we were going to be moving to Texas, I was going to just wait to discuss treatment options with the new doctors when we got down there, but since we can't go yet, I decided since I really felt a connection with the new Doc at Corb’s PMNR clinic, that I would asked her if she has ever dealt with treating patients with Dystonia, and she has YEAH!

We talked about the fact that he has tried all three of the main medications but I asked her, if since Corb was very young when we tried Sinemet, did she think the side effect of the vomiting might be different now that he’s bigger, well she was happy to try….I planed to start it on Sat Jan 28th but on Fri Jan 29th he had a very bad seizure which ended in him having to be intubated….I’ve made the decision that I’m not starting him on the Sinemet at all and I’m weaning him back off the seizure medication that the Neuro started him on....and I'm just bringing him back to Mayo. 

  

Dystonia medications:

While at Mayo in Dec 2010 the Doc’s had put Corb on the last possible Dystonia treatment before Deep Brain Stimulation, it’s a medication called Artane; you HAVE to try it to move forward, well….

Seizures:

Corbin had only had one seizure ever and that was during the accident; until May 2011, then again Dec 2011 and then the one on Fri Jan 2012….Dani brought it to my attention that Corb started having these seizure approx. 2 months after discontinuing the Artane, there’s no way to know for sure and no way to prove it but I’m feeling very angry, guilty, and sad for my baby….I do everything in my power to help him and sometimes it gets screwed up even worse.

DBS (deep brain stimulation):

Bill and I, through all my bawling had a heart to heart and he asked me if I was really considering bringing Corb back to Mayo to farther discuss the DBS and I said yes I am and he said maybe it “is” time to think about it….my heart dropped, I can’t even start to express how much that meant to me in that very moment….I have felt very alone in this journey and it’s nice to have support….I love you Honey

I already called Mayo and I’m having them send me the list of motels that give discounts to Mayo patients (we will try to get into the Ronald McDonald house, but that’s never a guarantee) so that brings me to my next topic….

Small fundraiser:

I wouldn’t even know where to start but I’m considering looking to some form of small fundraiser so if we do decide to do the DBS we’ll be able to afford staying out of town for many days and all the travel expenses in general….if anyone has any ideas please let me know....corbinleeproject@yahoo.com

Thought of a cute name.... 

Something neat to end with:

We had Chinese for supper on super bowl Sunday….both me and Corb’s Fortune Cookies had the same Fortunes (it’s not the right direction), it’s kinda creepy....