Archives

Read Our Story!

2yrs; Day 1061 – from Corey

hello everyone,
good afternoon/evening its corey but not just any corey, its Corey Marie Beattie, does it get any better than that? i don’t think so!

we’ve got a busy week.
today was an eye doctor visit and i might get eye drops so that i can read better.

tomorrow we go swimming in the pool for my exercises

friday we have kids surprise, which means mom plans a secret surprise and we don’t know anything about it till we get there.
what mom really loves is waiting for us to figure it out and watch our faces when we get where ever we are going but as of now none of us have any idea what it could be.

finally this weekend me and mom are going to go see her sister, Louise. that makes me feel good because we have so much fun, she is crazy like Marie, maybe even a little bit crazier, if you can imagine that, then that is my aunt.

dont you love staying busy? i know that now that i am getting better when we can certainly pick up the old busy schedule that we used to have! i love keeping busy because it makes me feel like i’m living my life not just staying home

well i hope that all of you, whoever is reading this, has a good night xoxo

2yrs; Day 1060 – from Corey

Hi Everyone its corey

thanks to everyone who was helped me the best way they can. just so everyone knows, this battle is not over and I still have a little bit better to get.

the people on the care page help by always writing positive thoughts and that helps me because no one wants to be near a Debbie downer. they rather have positive Polly

everyone has a positive and a negative attitude, but the positive one is in fact, contagious, because no one really wants to be around a Debbie downer.. so I hope that whoever reads this, you are spending your week being positive, not negative! xoxo

2yrs; Day 1058 – Corey’s process

Hi Everyone,

Corey’s entries are a significant sign of progress as well as being entertaining! Some of you have asked how she writes and how much of what she writes comes from her. Her entries are 100% Corey. We sit at the table, I read the entry from the evening before along with all your responses. She is usually inspired by something someone writes or she will ask me,
C-“what should I write”?
M-do you want to write about your day?
C-what did I do?
I repeat the days events. Corey quietly listens then begins to type on the computer
C-who am I writing again?
M-all the people that have been following your recovery.
She pauses and begins.

I honestly love watching her and reading as she types because I never know what she will write. She sometimes repeats the same sentence and I will the dublicates; that is the only time I touch the keyboard. Sometimes she will lose her train of thought. She asks me to reread what she has written then she leans in to continue writing. Her spelling has been 95% accurate with very little reliance on spell check. Her punctuation skills are off…she loves comma’s and exclamation points! I do not interject any verbal ques as she types but I will pose thought starters. I do help her separate her thoughts into paragraphs to help the fluency and remind her of the grammatical structure of writing.

What amazes me is the depth of her writing as well as her humor. She cannot always tell you what she is thinking but she can write paragraphs that are insightful one minute and make you laugh out loud the next. I truly believe her journaling has begun to help with her cognitive healing. Corey still has severe short term memory loss but when she is in the moment, she has great clarity, initiates conversation and interjects appropriate humor during our interactions. The down side; the second our conversation is complete, she has no comprehension of what we were discussing. The up side…she’s communicating!

I have appreciated Corey taking over the carepage the last few weeks. In between eating bon bon’s I have been fighting more appeals. In the last two weeks I have appealed the denial of coverage for 4 of Corey’s medications, continuation of nursing hours until she ages out at 21 and rehab coverage for PT/OT. It is my hope that sharing how we “cope” with our daily lives, our experience will help another person that may be facing their own personal challenge.

If you were unaware, a denial does not me NO. Every insurance company has an appeal process. There are typically 4 levels before your request is truly denied. Most people accept the initial denial, allowing the insurance company to make their profits. Very few take advantage of the tiered system not knowing that if you do, typically you will win the approval you’re seeking.

The progression of approval is not for the faint of heart. You must abide by the calendar restrictions for filing as well as the documentation requirements to support your claim. For instance, one of the medication denials we were challenging was for a drug called Provigil. Some drugs need reauthorization every 6 months. Despite the past approvals, she was denied coverage for this round.

This medication was originally created for shift work disorder, sleep apnea and pain associated with multiple sclorosis. There was a nation wide study funded by NIH (national institute of health – the mothership of medicine) showing that Provigil administered with Amantadine can “wake up” a Traumatic Brain Injury patient. In order to challenge the first three denials, I called NIH to get a copy of the study and submitted the documentation in level 4. In addition we were fortunate that Dr Long of Bryn Mawr hospital supported our challenge, calling the insurance company to educate the Medical Director on how the drug is used on the brain injury unit at Bryn Mawr. We were approved in level 4 with two days left before Corey ran out of her prescription renewal. I’m happy to say all Corey’s medications are now approved. This process took just under a month.

Rehab coverage is next on the list. Corey is making great gains physically; the down side to that is the insurance company is beginning to look at “how much more does she really need”? Once again we battle the difference of their goal vs. our goal (stability vs improved function) If a patient receives long term supported living services (generally 0-3 hours typical rehab post acute care) there is little recovery.

Long term care with intensive rehab has documented significant improvement on all measures; physical, cognitive, emotional and behavioral. Corey is the poster child for the findings of this approach. A report published in April of 2013 in the National Rehabiliation Journal shared statistical evidence that consistent Long Term Rehabilitation showed no regression in function. Statistics showed LTR increased steady gains across the board from Mild to Severe injuries. This report is helping our continued fight as we now submit functional improvement reports every 4 visits for PT/OT. I’m not happy with the limitations on the sessions but fortunately Corey does show something new each session.

Isn’t the saying “everything happens in 3’s”? Corey’s never followed the rules so why shouldn’t we expect our saying to be “everything happens in 4″s”
I guess I should be thankful it’s not trending towards my lucky number…7! xoxo

2yrs; Day 1055 – from Corey

hi, everyone this is corey,

Feel free to check out a picture of me and caitlin in the photo gallery. It was from today when our mom left us alone in the car; for probably a little bit too long. we were left alone with a squish toy and got creative with our imagination and Caitlin’s cell phone camera. we should probably not be left alone, because mom was moderately surprised when we texted the picture of us to her.

we did not take any pictures of me swimming but i had a great session. I walked so many laps in the pool when i was all done working out i felt like a limp noodle. idk how that can happen to anyone but it did. has that feeling ever happened to any of you??

well, that is all for tonight; i hope that tomorrow night i have something fun to say.
i hope you all sleep well, happy dreams, love corey xoxo

2yrs; Day 1054 – from Corey

Hi Everyone,
Friends of my mom sent me funny messages.

you know the saying “keep calm and carry on”? Well mom’s friend thinks it is supposed to say “keep calm and corey on”; you know just keep on trucking

Another note was “You may be able to break me down temporarily BUT grab a seat and watch me pick up the pieces, rebuild and come back stronger than ever!

I really liked these.
1. they are funny
2. they make me want to keep going to get stronger.

well i hope you all are in for some upside down roller coasters because tagging along with me there is no break. since i did not have a choice in whats happening to me i had to buckle in no matter what. i hope you all are in for the long ride too, xoxo

2yrs; Day 1052 – from Corey

Hi Everyone,

Today is Monday and it was a big day
I rode in a car without a wheelchair!
We went looking for a new car for me because I am kicking my wheelchair to the curb aka bye bye
My new chair fits me perfectly and my old chair was too small
I like this chair more because it folds up in a car and it’s my favorite color purple
If we find a car my chair can stay in the trunk and I can walk in and out of my house without it
I will only need my new chair for long distances and trips
My mom likes it because its one more thing to take away because I’m getting stronger
Next I will use my walker more and then one day I will not even need a chair
The only car I’m not allowed to get is a purple car
maybe I will wear a purple dress while I ride in the car? What do you think of that? xoxo

2yrs; Day 1047 – from Corey

Hi Everyone its corey

Today my headache finally went away and I finally feel better

I can not wait until we go to the pool tomorrow and i will literally become ocean girl.. by swimming in the water

i will continue to live every day just one day at a time, that is what i have been doing and i dont understand why i wouldn’t just keep doing it. Thanks to all of you for writing back to me it gives me the hope that i need to keep trying, xoxo

2yrs; Day 1045 – from Corey

Hi Everyone,

This is Corey I’m back
I have a funny stories to tell you mostly about my mom
My mom was going out to water her plants but told us she was going out to water her pants
I think she has to come to speech therapy with me
Hopefully they can help because we really can not

Me and my sister always laugh at jokes no one else understands

Today I played Scattergories
I really did well
Out of 12 questions I came up with 4 answers all by myself

I really like my chair
it is really comfortable
it is like I’m walking all by myself because I can scoot around
it is fun

I helped Caitlin cook dinner tonight
we made a recipe from a skinny mom blog
it had chicken rotini pasta spinach cottage cheese and spices
it happened to be only 250 calories
it was the best thing ever!
it was fun to cook with my sister

It was a good day and I can’t wait for the rest of the week, xoxo

2yrs; Day 1044 – new wheelchair arrived

Hi Everyone,

Not to disappoint you but this is Marie!

It has been such a pleasure to read your notes to Corey, watch her become inspired by a word or sentence and have her ask to write back “to everyone”. Unfortunately, tonight she was not only tired but had developed a headache as well; she wasn’t up to writing.

We had a very nice weekend. Friday we FINALLY took home her new wheelchair! She is much more comfortable and loves the ability to scoot around on her own. She manipulates the direction with her right hand and propels her self with her right foot. You would think having one oar in the water would be difficult but she’s already getting the hang of it. To brake, she actually uses BOTH hands to lock the left/right brakes. Tomorrow I hope to take a longer video of her zipping around.

Aunt Diane visited us this weekend. Corey couldn’t wait to take her to her new favorite accessories store, Charming Charlie’s. She was ‘strolling’ through the store getting used to maneuvering the chair on her own and at one point I lost her! She took off towards the pink/purple section and I didn’t notice.

I think we might need to rename her…Danica Beattie!

I have a nurse tonight so I’m heading to bed to rest; I’m going to have to step up my game to keep up with Corey!
Happy dreams, xoxo

2yrs; Day 1041 – from Corey

Hi Everyone,

This is Corey
Mom reads the post to me and it makes me happy to have so many people around and write to me.
It gives me hope to keep getting better.
It also makes me feel good that even when bad things happen to me there are lots of people that will stand by me.
It’s nice that everyone has stayed with me this whole time.
All I have to do is keep getting better.

Good night everyone
It is time for me to go to bed
Happy dreams, xoxo