Thursday, February 16, 2012

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!

Thursday, February 9, 2012

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 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

Monday, February 6, 2012

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…….

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 5th and did her report and the company billed it right away….well on Monday the 9th 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

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.

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 17th 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….

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

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....