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