My beautiful sister!

It's been a while since I've  written about nicole but thought this would be a good quick diversion from my own stuff and bring up to date those that were instrumental in helping nicole get music therapy, a wheelchair van with hydraulic lift, clothes, misc things that add up very quickly.  Most importantly though, prayers and good vibes!

Today Nicole is still confined to a bed at a skilled nursing center in Macomb County MI.  She unfortunately never regained any sensation on her dominant right side of her body.  She still struggles with Apraxia and Aphasia so needless to say life is difficult but her spirit is still amazing and she has no problem ever cracking a smile.  She is truly an inspiration to me and anyone who knows her story.  I'm proud to call her my sister and draw strength from her, she truly is one amazing woman!

New Hairstyle

Hi everyone, just wanted to quickly update for Nicole.  She seems to have found her "happy place" and I think she is finally at peace with her situation.  I've been away for a couple weeks again but when I was with her there and speaking to her on the phone, I can sense a calmness that is wonderful to see.  She's also gaining confidence in her limited speech (slowly getting a little better) and her cognition seems much better.  When I last saw her, I mentioned I went to see American Hustle and was telling her the actors in the movie.  One of them was Bradley Cooper (who she said she likes haha) and sure enough,  a few minutes later when we were flipping channels, a Bradley Cooper movie was on and she recognized and pointed him out right away even though he looked much different in that role (I played the trailor for American Hustle for her).  This I thought was huge because her short term memory for so long was limited to 30 seconds or less.  The channel flipping took place at least 5 minutes later, seems like a little but in her world it's a lot...

Also, as you can see, she's sporting a new smart short hair style that I think looks great on her.  She could've had surgery to fix the bald strip on her head but I'm so glad she didnt because the hair she does have is thick and can easily cover that up without pain or healing time.

I can't tell you how proud I am of my sister!  Thanks for reading and for your support.

Chris

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