Happy New Year

Hello, I just wanted to wish everyone a Happy New Year on Nicole's behalf.  She finally got her new chair yesterday and it's pretty sweet!  This allows for her to do therapy she otherwise wasn't able to do in her old chair which is awesome.

Her spirits have been really good lately as I think the holidays have been a good morale booster being able to get out of the nursing center and around family.  She is quite remarkable how she continues to take everything in stride (you know what I mean...). 

Here's to continued improvement and a fresh new year for all of us, 2013 has been pretty tough.

Thanks again to everyone who's helped out in any way.  We truly are grateful for your support.

Cheers!!

Chris and Nicole

New Home

Hello, Chris here again updating for Nicole.  Everything happened really fast but Nicole is now at Martha T Berry in Mt. Clemens.  While we will miss the warm caring staff at Regency Manor, we feel like this new place is a better fit for Nicole.  There are some people close to her age there that have gone through similar experiences or are dealing with similar results from whatever ailment they had.  Nice thing is she is still going to get therapy that she desperately needs.  My mom and I have been talking and we are thinking of purchasing a used van that we can convert for wheelchair access so we can take her out of there (safely) on occasion to change up her daily monotony.  I think we have enough money left from your donations yo where she can still bridge the gap until Medicare picks up the tab again on her therapy.  I hope that is ok with everyone who has donated.  The van is something that we probably couldn't afford without these funds so thank you all again so much :)  When we find it (my Mom's hairdresser alerted us to one that's been driven by an elderly man and is in good shape) I will post pics.   I think we'd just need to outfit it with a lift and it'll be good to go.

As far as Nicole herself, she's still making steady but slow progress.  Our goals have been tempered but there's still hope.  The next step is getting her to be able to get out of bed on her own and into her chair.  If anyone knows of someone donating a mobile wheelchair btw, she could definitely use an upgrade.  The one she has now is ok but not all that...  I was hoping Medicaid would approve a new one but instead of a mobile unit, they approved a fixed chair (one that she'll use for her therapy, it's not for tooling around but stationary). 

Thats all I can think of for now.  I'll try and attach some pics from her new digs when I get a chance :)

Thanks again,

Nicole and Chris

Transitioning

Hello everyone, just wanted to update for Nicole.  She finally got her custom foot brace!  We had been (and still are)  doing therapy with Nicole as per her team.  Because of liability issues, they didn't want to risk breaking her ankle as it's severely dropped.  The custom brace can be slowly adjusted to bring her foot back up while providing protection as she does her exercises.

Her progress has been slow but steady.  She can now easily lean forward in her chair and almost reach down to the floor!  Her speech is still very much a struggle but we aren't giving up nor is she...

Wanted to thank Linda Agostini and her colleagues at Magna for their generous donations from having a jeans day at work.  Nicole is very grateful that people out there care so much and she thanks everyone again for the love and prayers.

With Love to you all,

Nicole and Chris

Big thanks!

I just wanted to thank my cousin Jen Place for her time and effort in helping Nicole's cause.  She was able to raise $750!!  We are lucky to have such a caring cousin...  Thanks to those who attended and donated:

Dr. Danna Haba
Judy Place
Josephine David
Vicki Bounassar
Debbie Majkowski
Ed and Jennie David
Nikki Freitag
Rae Anne Kapler
Nicole Silarski
Staff of Excel Institute of Shelby

Even though Nicole is on a short hiatus from professional therapy, we continue to make sure she is doing some occupational or speech therapy every day.  We are waiting for a $1000 brace for Nicoles foot son she can move into the next phase of OT and PT.

Again, to those of you who donated in the past, thank you thank you thank you.  I'm sorry if anyone was upset that I didn't send out personal thank you notes.  If anyone knows me, I think I suffer from a little ADHD and tasks like that aren't exactly in my wheelhouse.  Please know that however I truly appreciate every single one of your donations and care.  We couldn't be doing this with out you and I know Nicole is also very grateful.

Looking forward to posting updates as she makes breakthroughs.  Right now, it's the grind of repetetive tasks and she us making progress albeit slow...

God Bless,

Chris

Slight Change of Plans

Just wanted to update Nicole's situation:  She's doing pretty well overall except for the obvious.  My Mom and I made the decision (as per her therapy team) to hold off on her therapy until she gets a proper foot brace.  She can't do any physical therapy (working from the waist down, leg strength) until she gets a custom foot/ankle brace to protect her fragile ankle on her now bad side (her right side).  In addition, as per her speech therapist A.J., he recommended we do the speech therapy work with her ourselves as she's hit a soft wall where it's not justifiable to pay a therapist for things that we can do for her until she progresses.  In other words, we feel that the money will be better spent on things that we can't or unable to do i.e. physical therapy (focusing on trying to get her to be able to get around on her own and standing).  We have a folder of speech therapy exercises and it's really just a matter of repetition and getting her to practice remembering objects and trying to annunciate them.  There is no sense spending the $75 per session for something we can do on our own.  As for the occupational therapy, my Mom has been working with her on her core strength and hand eye coordination with instruction from Anu, her awesome OT lady. 

I wish I could write and say that she's making this incredible rapid progress but I'm afraid that's not how this is going to work.  It's going to be a long slow road back to even close to where she was before.  With that said, we will be saving the funds for when she's ready to take the next step (literally) and hopefully it will come soon as her brace arrives.

She did get approved by Medicare to get a new wheelchair thankfully. She was using a house chair that wasn't very comfortable and the new one will allow her to tilt back and hopefully have better support for her legs/feet.

I never thought I'd be doing speech therapy with her but we try and make it fun.  My Aunt Shelly was working on speech with her yesterday and got a good belly laugh out of her as she was trying to imitate a chimpanzee!  Words like that are extremely difficult for her to annunciate as she has no control of the right side of her mouth and I believe her tongue.  It's amazing how much you need your tongue to speak!

Anyway, she's still a trooper as always.  I don't know what i would do if i were in her situation and its always on my mind how she is "trapped" inside her own body not to mention that nursing home.

I truly hope better days are ahead.  Until then, its just one at a time...

Thanks for your concern,

Chris

Core Training

I met Susan the better half of the husband and wife physical therapy team ;)  Two major breakthroughs today; one, she has finally learned how to "skootch" herself back in her chair using her good leg and arm.  That took two weeks per Susan.  The next big deal is what you see in the picture.  She couldn't do this task of reaching down to grab the rings (curtain shower rings, small budget), and bring them up around the walker and reaching to put the ring on Susan's finger.

I'm sure it's just because I'm nicoles brother but of all the cool things I've done over the years, this ranks right at the top...  Just witnessing the struggle she goes through but to see her do something she couldn't do before, it's an awesome feeling.  She is very resilient despite her depressing circimstances, I couldn't be more proud of my sister.

Again, anyone who is following Nicole's story or has donated, you are directly and indirectly (possibly) responsible for this small but significant progress, I know that has to feel pretty good too :)

Thanks again,

Chris

Moving Forward

It's awesome how much progress Nicole has made in the 3 weeks that she's been doing her therapy!  I was gone for the weekend and didn't see her for 4 days and happy to say that she can now lean forward in her wheelchair!  She wasn't able to do this prior to me leaving and I'm so proud of her!  She's also been working on standing up longer each time with less and less help from her PT person which is awesome :)  The speech is still a struggle but her speech therapist AJ is excellent and I have the utmost confidence that he's going to get everything that he can out of what she has left in her lower left lobe and hopefully start getting the right side of her brain to start compensating for what she's lost.

I am so grateful that she has the chance to improve...

I'm also so grateful to my Mom who has been participating in just about every session while dealing with her affairs after losing Rich not to mention fighting her own battle with breast cancer.  She is an incredible lady and an awesome Mom is all I can say.  Not sure what we would do without her...  I'm also grateful for my family contributing what they can when they can. My Aunt Shelly has been working with her on the iPad and Anu (her occupational therapist) told me it's making an impact.  I also wanted to thank my cousin Jen who has been so helpful not only behind the scenes with me but lending her expertise in optometry evaluating Nicole's vision and putting a plan together to make some improvements with custom lenses/eyeglasses.  Her vision ever since the stroke is poor for close up objects and her range has been severely diminished...  It's so important that we all work with her trying to take back some of what she's lost.  If anyone is interested in participating in working with her on some of this stuff, she loves to practice when she's not too tired.  It's going to take all of us who care for Nicole participating as she has a long way to go...

I'm cautiously optimistic that things will continue to improve as we go forward through this process and look forward to reporting progress as it happens :)

Thanks again for your interest and following her story!

Cheers,

Chris

Physical Therapy :-D

Had a chance to meet Sam, 1/2 of Nicole's physical therapy team, he works with his wife who was ill today.  It was really awesome to see her standing (with our help and the wall rail)!  She did it twice for about a minute or two each time which was totally exhausting for her.  Prior to that it was leg and trunk exercises, strengthening her core by having her lean forward in her chair.  It is amazing how difficult the seemingly simplest things are for her... 

Tomorrow is speech and occupational therapy.  She seems to have better spirits although I can tell she gets a little discouraged by the difficulty of what she's doing and her frustrations come out..., she gets mad at me!  Her right foot has dropped from her disdain in wearing her foot/leg brace and I'm always on her to wear it (in a gentle way of course).  She hates that foot brace with a passion... We're hoping wright and phillipis will have a more comfortable supportive brace and it will be covered by one of the M's.  Because of her foot drop, the doctor said she's going to need her achilles tendon surgically lengthened by cutting notches in it.  Does not sound pleasant to me, it is an awful shame it has gotten so bad.  I dont know when she can have the surgery as the healing time is at least 2-3 weeks (unoficially, per Sam) and sure she wouldn't be able to do much during this time, I dont know...  Maybe she could still do exercises but obviously nothing on her feet.  We will see.

That's the latest, thanks for following Nicole's story and if you've donated or helped to raise awareness that led to a donation, you are directly reaponsible for everything that is happening right now.

2 new donors!

Cousin Melody
Janice McGuire

Thanks so much!

Chris

Tossing Cookies

Well, it was a beautiful day and we tried to get to the cider mill but it just wasn't meant to be.  We only got a couple miles away from Regency Manor and because Nicole isn't used to driving, she got car sick again :(  This is the third time now I think so we need to make some changes when we take her somewhere or she has to transport to appts. 

Luckily my mom lives close by and we just went there and got everything cleaned up in the garage.  It felt like that scene in pulp fiction where Harvey Keitels character (mr fix it? Cant remember his name) came in and took care of all the blood in the car when they accidently shot that guy.  Quentin Tarentino was actually in the scene making his customary appearance but I digress...   We made the best of a bad situatuion and just enjoyed a fire in the backyard and chili barking at the horses :) 

Even though it's been almost a year, it's still tough to see Nicole go through what she goes through.  Its so hard...   Everything we do is difficult, nothing is easy once we get her out of that place yet it is so vital I think to her overall well being and relative peace of mind.  I don't know for sure but would bet a somewhat crazy day like today, (where things didn't go exactly as planned), is better than her laying in that dark room doing nothing. 

Hopefully, next time, we make it to our destination!  I'm sure the cider mill was a zoo today anyway ;) 

Things happen for a reason some say right?!

Chris

Getting into the groove :)

So, we are full on into NIcole's therapy!  She has a great team who care and she seems to be responding!  It is so nice to see Nicole performing an activity, any activity if you know what I mean...

She had a rough day yesterday; after speech therapy, she had to go back down to Wright and Phillipis to hopefully get fitted for a new chair, arm brace, elbow brace and hand brace.  On the way, she ended up car sick and never made it, feel bad for her.  The chair she is using is shotty at best and she keeps sliding down as there's no padding underneath.  Not to mention, her chair has no reliable capability to handle her bad leg.  We have to take a pillow and put it under her leg so it doesn't fall out.  Most of the time that works for two minutes and is more frustrating than anything... 

I have no idea if insurance is going to pay for these bare necessities so I guess we'll find out.  Don't want to say anything good or bad as not jinx us but it's amazing to not even know...

Tomorrow should be fun, God willing with the weather, we're going to hit Yates where we used to go when we were itty bitties. 

Thanks to Susanna Michaels, Carolyn Hebert, Nancy Lowis for the latest donations!  The money does go quick, oye...

More to come, many thanks again!

Moving Forward!

Had a chance to participate in Nicole's Occupational Therapy today and it is so encouraging seeing her working on her recovery again!!

They are taking baby steps now as her muscles have atrophied from inactivity.  It is a shame it has taken so long for this to happen (she has to have a surgery on her Achilles tendon putting slices in it so she can straighten her foot ouy).  I am and I know Nicole is very grateful for this opportunity and hopefully with cooperation, we can all participate in her regaining her dignity.

Keeping my fingers crossed but so far, the people working with Nicole have been so kind, compassionate and competent.  Thank God!!

Therapy update

Hello, Chris here again, sorry for the delay in posting, we had a couple of snags.  After a meeting last week, Nicole has finally started back with her therapy!!  We've met and were impressed by her speech and occupational therapist but haven't connected with her physical therapists yet.  We still have a cpl of bugs to work out such as making sure the therapists provide a schedule to us so we can have an advocate for Nicole present to root her on...  We also want to make sure the therapists are doing a good job.

So, the plan established to start is 9 sessions per week, 3 from each category.  Needless to say, she's been exhausted this week and sadly, a little down.  I spoke to my mom and we agree that she needs to get out of that place on a more consistent basis.  Its bad enough with what she's dealing with but being stuck in bed everyday being surrounded by really old people with dementia has to be depressing.  I'm going to take her to stoney creek Wednesday and as she hopefully progeesses, try and ease her out back into the world.

Thanks again to those of you who continue to donate!  We have enough money to pay for 15-16 weeks of therapy!  This is a fantastic start and gives us time to figure out a way to pay for the rest of the year.

Once I charge my tablet, I will update with the latest names of Nicoles angels who've donated.  Thanks so much again!

Chris

Big day tomorrow

After some confusion and scheduling conficts, we are finally meeting with Nicole's new team tomorrow.  Thanks to my buddy Sean and Delta Airlines buddy pass program, I was able to come out to Oahu to attend my cousin Jeff's wedding.  I'll be participating in the meeting tmrw via conference call with my Mom able to be there in person.  Should have the details soon as to when she will officially get started.  Frustrating that it has taken this long...

I will pass along the details tomorrow hopefully.

Chris

Starting this week!

Hello again, just to quickly update, Nicole will be starting her speech therapy next week and if everything goes well, occupational and physical therapy as well.  I know she's anxious to get going so hoepfully there won't be any snags.

By the way, if you've tried the link to see Nicole's thank you and it hasn't worked, just copy and paste the web address below into your browser and it should work.

https://www.youtube.com/watch?v=2pJvQjWiAiU&feature=youtube_gdata_player

Thanks to more donations!!

James Flanagan
Gail Lombardo
Pat Michaels

Couldn't do this without you nice folks :)

Chris

We did it, $10,500!

Thanks to a nice donation that just came in, we have achieved our first phase goal! 
I can't tell you how grateful we are to everyone who's contributed, most of you people who I have never met or haven't spoken to in a long time.  I don't know exactly how long the money will last as we will have a better idea this week after a couple of meetings...

No matter, I can sleep better at night knowing that Nicole will at least have a shot at regaining some dignity and self reliance. 

By the way, if you haven't donated and would like to do so still, thanks in advance!  The $10,000 goal was an arbitrary number I created as we had to start somewhere...  The reality is $10,000 will probably pay for only 2-3 months.  We have a ways to go...

Please stay tuned or enter your email address (if you wish) in the box above the donate icon so you can receive updates without having to manually check.  Hopefully by this time next year, Nicole's life will be much much better.

If you have any ideas as to how to raise more money, I am open to any and all ideas.  I was talking to a buddy today and he mentioned trying to get this to people like Ellen or Oprah or the like.  I see stories like this on TV all the time (some nowhere near as bad) so who knows... 

In any event, thanks again so very much.

Chris

Lets try this again...

https://www.youtube.com/watch?v=2pJvQjWiAiU&feature=youtube_gdata_player

A personal thank you from Nicole $9300 so far

So, Nicole and I were catching some sun and enjoying some lunch at Regency Manor and I thought rather than me thanking everyone, I would ask Nicole to give it a shot.  So, because I don't know how to shorten or separate the 3 takes I just put all 3 on here.  I think it shows just how difficult it is for her to do the simplest (as we know them) things.

https://www.youtube.com/watch?v=2pJvQjWiAiU&feature=youtube_gdata_player

To all of these people who have donated, you have or will be directly impacting a very special person.  Without your donations, there is no way we will ever know if she will ever be able to improve.  I told her she was starting again next week and I can tell she is genuinely pumped!

If you don't see your name here, please contact me via email chili.carr@gmail.com or leave a comment and I will get right back to you.

Nicoles Angles So Far:

April Reed (In loving memory of one of my heroes, Mike Reed)
Janet Jacobs
Tara Sinclair
Jackie Millazzo
Lisa Augustino
Shannon Schwartz
Melanie LeFeve
Patricia Smith
Charles Cavanaugh
Kelly Hurley
Eliot DiDonato
Steve Zuccaro
Judith Kirkwood
Diane Forlini
Jay Waltman
Jeffrey Fanelli
Mary Pietrowski
Joyce Kaganac
Bradley Damron
Heather Hosking
Mary Rospierski
Heather Raymond
Milana Kosanovich
Mary Durbin
Isabelle Roges
Jennifer Lynch
Nicole Rogers
Jessica Pearce
Elvira Sepulveda
Shannon Solis
Heather Miramonti x 2 :)
Amy Leithauser
Marilyn Zalewski
Jennifer Valeck
Marcus Adams
David Minchey
Studio Sandra
Jeannette Debbs
Tammy Hopgood
Amy Schang
Cinzia Mancini
Samuel Tricomo
Jennifer Dahlgren
Maria Koch
Lisa Rose
Laurie Orlando
Dianne Peppers
Robyn Casman
Dawn Sarnecky
Diane Prykucki
P.S. Sarowski
Dena Niebauer
David Andresen
Kerrri Henson
Jason Silverman
Jennifer Stec
Christine Dahlgren
Debbie DeSantis
Lisa Ksoll
Jana Holcomb
Mary Daar
Deborah Bacal
Teresa Mccollum
Kim Durham
Abby Weir
Rosemary Alton
Matt Prybyla
Cinzia Mancini
Carrie Fannelli
Celia Nalezyty
Cynthia Pease
Clarita Lopez
Jill McKenzie
Marcia Levitt
Yvette Tremaine
Christopher Place
Butch and Michelle Prybyla
Celia and Dan Nalezyty
Ken Michaels
Christopher Place
Charlotte Cantwell
Lance LeComb
Kurtis Pease
Virginia Nalezyty
John Rossi
Linda Hogan
Michael Butler
Paul Barker
Robert Baylis
Cara Carpentino
James OHeir
Jeff Skopek
Nancy Tutak
Connie Firestine
Marie Kneizys Bourassa
Josephine David
Jennifer Duggan Hobbs
Bruce Carr
Kristen Seguin
Paula Olenjik
Tom and Linda Majkowski

Wow, that's a lot of people who care, pretty amazing, thanks so much.

On our way to $10k!

I just wanted to quickly update that we are close to $9000!!  I don't know why I picked an arbitrary number like $10k as the reality is we are going to need much more to get Nicole through the year.  However, I think it is important to set smaller goals first so the task doesn't seem so monumental...  I am pretty sure Nicole is going to get back started with speech and occupational therapy next week!  We still need to find a couple more people, most importantly, a physical therapist.  Until we find this person, we may have to take Nicole to an outpatient facility.  I need to be trained in how to get her into my car and back out into her chair or maybe I can have my old Honda CRV retrofitted so that I can just put her into the car in her wheelchair. 

The main thing is, Nicole can finally start over with therapy and she wouldn't have had the chance if it weren't for the generosity of all of you who donated.

Thank you so very much again from myself, Nicole and our family. 

Chris

Gettting sooo close

Hello, this is Chris again and I apologize for not updating over the weekend but I haven't been feeling all that great...  I am overwhelmed by the amount of support for Nicole especially after getting the mail today and receiving some checks from folks who didn't feel comfortable donating on their computer or other reasons...  We are now very close to $8000, hard to believe... 

We are in the process of networking to find physical, occupational and speech therapists for Nicole.  I visited her last night and she can't wait to get started again!!!  I know nothing I write here can depict how touched I am and how thankful I am.

I fantasize about the chance for Nicole to somehow become somewhat independent, not having to count on nursing home employees and family visits for every single need she has and even then, it's almost impossible to know everything she needs because she can't speak...

Once again, thanks from the bottom of my heart,

Chris

Almost at $6000

Well, it looks like stage one of the funraising for Nicole is slowing but I'm so happy to say that we've collected almost $6000!  After the weekend, I am going to focus on finding 3-5 good therapists and hopefully get Nicole started right away.  I will keep track of her progress her so stay tuned.  This is going to be a long process of methodically repeating a lot of the same things over and over again so hopefully we can make it fun for everyone (as much fun as stuff like this can be, I know it's not fun for Nicole...)

Thanks again so so much.  I will be sending individual thanks out as soon as I think that's the best way to go.  I will create another post with just donor's names so you can check to make sure if your donation came through.

Have a great weekend everyone!

By the way, I've added a gadget where you can enter your email address in the box above the donation icon to receive updates via email if you'd like.  If any questions, please leave a comment under any of these posts or email me.

Chris

Sorry

It has been brought to my attention a couple of times now that people would like me not to reveal how much they donated.  I wasn't sure if putting the amount on the thank you list was appropriate so I've taken it down and going to replace with just names going forward.  Again, if I embarrassed or insulted anyone, it was completely unintentional and I apologize.  I hope this hasn't dissauded anyone from donating and if so, please know that I will keep this anonymous going forward.

God Bless,

Chris

Over $5000!

Amazing what happens when you turn your computer off then on again, even with a tablet, it usually works a lot better, what was I thinking?!  Anyway, really excited to report that we are now close to $6000, more than halfway home.  I've also had some online conversations with some therapists who would be willing to donate some time to work with Nicole.  We are still however searching for Therapists willing to work with Nicole a few times a week and hopefully it's just a matter of time before we find the right people.  Please check the comment section where it says Thanks for the donations so far and click on the comments below.  If you've donated and don't see your name there, please let me know and I will double check to make sure I didn't miss it as I'm just looking at my phone and writing people down on my tablet.  By the way, again, if you would like to stay anonymous, please make a note in the message area when you donate.  I am truly humbled by all of the support and thankful for every dollar.

All the best as always,

Chris

Right at $4000!

I couldn't sleep very well last night and woke up this morning to find out the total almost doubled overnight, amazing. I need to add some gadgets to this blog like a place where you can receive updates if you want. They changed the entire format from when I created my blog a few years ago. Plus I'm working from a tablet that isn't exactly designed to do projects like this so if you could bear with me I'd appreciate it. I know I can speak for my family when we say thanks to everyone for their kindness. I can't wait to post the first picture or video of Nicole doing some rehab. We need to go get her some new shoes and need to get her a custome brace for her bad ankle as it's starting to permanently turn to the side from not using it. This is pretty exciting! Cheers, Chris

$2695 So far on the first day, not a bad start!

I am overwhelmed by the generosity of so many great people on the first day collecting money for Nicole's rehab. For people to take money out of their budgets during the recovery really gives me hope that we can do this and get Nicole through the rest of the year working on being able to hopefully get out of bed on her own one day. Maybe she can walk with special braces as she builds muscle on her good side and stops the emaciation of her muscles on her former good side which is now completely usesless except being able to feel pain, wtf?! Perhaps now she can work with a good speech therapist for more than a couple weeks being healthy and practice skills that will help her get out basic things that she knows in her head but can't express like her name, her age, her phone number perhaps, we will never know if she doesn't work on it. They say sometimes the right side of the brain can compensate for loss on the lower left side which controls speech and word/motion expression. Her brain can't even tell her left hand (now good hand) which way to point if you say "point at the window". It's funny though, sometimes she can express herself involuntarily and it flows out like a river! We have all seen it happen enough to know that it's in there and she just needs help getting it out. I hope this information is interesting. I plan to write more about it but I am completely shot from and emotional day. From the bottom of my heart to those that donated or are thinking of donating, thank you so much. Chris

Thanks for the donations so far!!

I am posting all of the donations in the comment section of the blog.  So far we're over $1600!  Trying to get as close to $10,000 as possible.  If anyone needs receipts, please let me know and I can provide something.  Searching for therapists to interview hopefully tomorrow...

Nicole's History and reason for this Blog

Hello, this is Nicole's brother Chris. I wanted to start this blog for her in the hope that there are some angels out there to help my sister.

She has been fighting a courageous battle against brain cancer for the last 23 years. Nicole has endured 3 brain surgeries, chemotherapy without a port for several months and numerous rounds of radiation. She was diagnosed when she was 19, just starting college and preparing for the rest of her life. There is no doubt she is a miracle as she only had a 10-15% chance to live more than two years. Tragically,the impending scar tissue turned into epilepsy and her life has never been the same. Because the epilepsy was debilitating, she lost her ability to work, go to school, drive or basically leave the house living at my Mothers for her entire life. Sadly, this is the first time she's ever lived anywhere but home and it happens to be a nursing home where she is the youngest member by at least 25 years.

How she got there I think is the most tragic story and I will attempt to tell it here as briefly and thoroughly as I can. As I mentioned, Nicole has been suffering with a progressive glioma related epilepsy for about 20 years now. That's not the official diagnosis but think it's an accurate description. The epilepsy is caused by the scar tissue that has been building up over time.  She had one scar tissue removal procedure done around 8 years ago I think and the result was she lost more of her functioning brain, lost her ability to talk for around a month and seriously further reduced her cognitive ability.  The really difficult part is the epilepsy returned and the seizures got worse.

This brings us to the recent past, 8-9 months ago now where Nicole was so fired up to go in and get rid of the scar tissue for good.  She had dreams of driving again, perhaps getting a part time job, basically just re-acclimating to society.  The doctor was touting an 85%-90% chance that this would be successful as I heard it.  Apparently, there was another meeting where he mentioned the chance of stroke but nobody seemed alarmed by it so we moved forward...

The rest as they say is history, tragic history as the scar tissue allegedly was so dense that the doctor had to scrape (word he used) harder than normal and the result was a rupturing of her blood vessels inside the brain and ultimately a stroke. 

This brings us to today where she is still paralyzed on her left side, her vision is extremely poor, she can't walk or talk.  She suffers from Apraxia and can't even say her name.  Needless to say, it's been difficult for everyone involved to deal with her new reality, I'm sure, most especially her.  You would never know it though as she manages a smile every day and is the most gentle, kind and loving person anyone would ever meet. 

I'm just bummed that she never really got a chance to recover.  As soon as she was moved into her first rehab, she conducted pneumonia which anybody who's had it would know how exhausting and debilitating it is.  So, there goes two to three weeks of precious rehab.  She finally recovers, only has a few more days of good rehab at RIM of Michigan then gets informed that she has to leave because she's not making fast enough progress, what?!!  Without getting too emotional here, everyone was stunned as she ended up in a smelly less than adequate nursing center called Clinton Aire.  I called it Clinton stinky Aire because of how much it wreaked but she seemed somewhat happy there as she met a friend her age as was getting therapy.  Could be better but also could be worse so we cautiously moved forward there. 

After a couple or more weeks at stinky Aire, the nurses neglected the wound on the side of her head and she conducted c-diff which is a nasty intestinal bacteria that is difficult to treat.  So, again, more down time without any therapy, time is wasting...  She finally heals from that and has to endure a nasty plastic surgery procedure where they take a slice of skin from her leg (why they didn't take it from her bad leg I still don't know) and attach it to her skull so they can pull down the skin to close the open hole that was in the side of her head.  This beautiful young woman now has a reverse Mohawk and it's not because she's trying to be a hipster or anything...

Meanwhile, her Medicare days continued to tick away...  First going through pneumonia after brain surgery and now c-diff which takes a long time to recover as well and her therapy days are now pretty much gone.  In fact, they have been gone now for over a month and she's finally relatively healthy and ready to start back on regaining her speech and motor functions that have been lost.  The only bad thing is now there are no funds to pay for any of it.  She is relying solely on Medicaid to pay for her bed at a very modest nursing facility and there are no funds for any type of physical, speech or occupational therapy, none...

This brings me back to the purpose of this blog.  The most important thing Nicole needs now are donations.  We have to hire therapists to come in from the outside to work with her wherever she is going to be for the next 10-11 months.  Ideally, she's supposed to be getting some kind of therapy everyday, preferably all three Monday through Friday.  As you can imagine, this is expensive, around $75-100 a session from what I understand.  We want good therapists to work with her as right now is her best and only chance to regain just her basic functions.  Right now, she is stuck in a bed completely reliant upon the pseudo nurses there to change her, feed her, I won't get into the rest of it, you get the idea.

My goal is to raise $7000-10,000 initially which would probably buy her 4 months of therapy and maybe some normal meals which myself and my mom have been providing the best we can instead of her normal grilled cheese or peanut butter and jelly sandwiches.  She deserves so much more based on not only what she's been through but the kind of person she is.

So, if you can find it in your budget to donate, we as Nicole's family and I Nicole herself would be eternally grateful.  If anyone would like to visit her to see what it's like to meet an angel on this earth, please reach out to me and I can arrange a visit.  This is the most important cause of my life and I'd like to thank you for reading this and of course your consideration of a donation.

There should be a donate icon at the right hand side of the page.  I plan to post her donations on this blog and would gladly keep it anonymous if you request.  I also plan to update with Nicoles progress with videos of her going through therapy so you can see the struggle she faces and feel rewarded as she makes progress.

Thanks so much and God Bless,

Chris