It's been a while since my last update on the progress Mckenna is making since her Spinal Cord Injury June 25, 2018.  Last update was her 2 year accident date anniversary which was 6 months ago.  

While she has not seen any additional movement, she continues to get stronger physically and mentally and more confident in herself.  A reminder as a C7 Spinal Cord Injury, she is paralyzed from the Chest down. In addition, it also impacts her arms and hands.  While she does have both biceps and triceps, the inner side of both arms from armpit down to her pinky is numb to the touch.  Interesting right?  She discovered that if they take blood more on the side of her hand towards her pinky that she can't really feel it.  Game changer for her since she hates getting blood taken - lol!  Appreciate the small things right? 😀  She has had no movement at all in her hips or legs since Day 1.  To keep her muscles from atrophying and remaining viable she faithfully continues to use her FES bike (Functional Stimulation System) weekly.  She attaches electrical impulse pads to her Quads, Hamstrings and Glutes.  This also helps with her overall circulation and health.  She also has a hand-held unit that she LOVES.  She stims her calves regularly as well.  Her favorite is stimming her abdomen.  She actually does this daily.  Not only does that keep her ab muscles active she says it feels good.  While her ab muscles can't work on their own without the stim unit, she continues to work on her core strength and stability.  This will be a life long fight for her.  We converted one of our downstairs rooms into an exercise room.  Mike built her an awesome therapy table where we used her old gymnastics mat to cover it with.  She was graciously gifted a GPK UpperTone System by Lee Killian, who's also a Quad and is a Pitching Coach at Mckenna's High School. Very inspirational!  This piece of equipment is AWESOME! It's specifically designed for Quadriplegics like Mckenna...and allows you to work on all your upper body muscles.  The best thing is that because it designed for a Quad (which also means that everything is designed to function without grip strength - also has built in Tri pins for your hands) it is designed so a Quad can make all the adjustments, including resistance, without hand grip strength, even without cuffs, or other assistance - to do their own workout independently.  So Mckenna goes into the exercise room where we also have weighted balls with straps, a special split jump rope made for wheelchair users, and other gadgets she can use independently.  She shuts the door - no parents allowed - and does her thing.  I love it! 

Our beloved Race to Walk closed doors.  That was her Neuro-Therapy gym.  However, we were so excited that her own Occupational Therapist opened a new gym called Back to Independence and all of the RTW trainers went with her.  We are so lucky to have this type of gym and good people in Mckenna's life!!!  She goes every week.....every...week... and has done that now for 2 years.  Good Bless her! 

Mckenna's hand strength continues to improve.  The changes are so so small, but when you compare what she was able to do throughout time from the beginning you can see it.  Blessed!!!  She really has no pinch at all but her grip strength, although slight, has continued to improve.  Just general life activities have contributed.  We saw a noticeable difference when we changed her wheelchair rims.  When she got her new wheelchair when she moved out of her 'beginner' chair - she changed to a slimmer rim to push with.  Her rim is tacky because of her limited hand function so it's easier to push.  Anyways, this caused her to have to 'grip' the rims more when she pushes.  That in turn, improved her hand strength.  Continued gains...and bonuses!  We have to think through things on how to she can be independent (my mind is ALWAYS going - much to Mckenna's dismay ..haha!)... like an electric can opener because she can't use a hand held one, or changing the caps on her medicine bottles from child proof to easy open.  But she has been able to open things more and more without adaptations.  Working on her hands and her core -- continues to be high priority for Mckenna.  

I'd like to talk about her Independence.  That remains to be a top priority.  We want her to be independent and she desperately wants to be independent!  She is really at that injury level where I would say that I've seen more males than females accomplish this.  The truth is there are differences between male and females in regard to general strength and other personal things make it a little harder for female quads.  Plus we've learned that Mckenna's arms are short...and longer arms would really make a few things SO much easier on her.  Who knew that would ever be something to even think about?   But - that has and will never deter Mckenna!  She is strong and stubborn and those qualities serve her well!  These past 9 months - since the initial shut down from the Corona virus - Mckenna has taken leaps and bounds towards her independence.  We've wanted to stop speaking for her .... on emails, texts, during her doctor visits, etc.  SHE wanted us to stop speaking for her most importantly.  She uses her own phone number...her own email address...her own social media accounts...while applying for grants and scholarships.  (I do maintain her group #MckennaStrong on Facebook because that is where I post about her recovery and it's not met to be her voice but share her voice - I share with her all the positive message written)   Like any typical teen - nothing to do with her being in a wheelchair -- if I post on Instagram she HAS to approve because her friends follow me.  Typical Teen!!!!  While she is an introvert to begin she has come so so far.  She needs to be her own advocate...and have her own voice.  I've learned to step back more as that overprotective mom ... and give her that needed space and encouragement.  Although admittedly I'm STILL working on my piece of this because yes, sometimes it's easier and faster if I just do it and because...I like to talk (obviously!) -- but she will never learn or get better or faster .... if we as her  parents continue to do things for her. Mckenna though does get pretty irritated with me if I do something that she can do herself.  I remembered from when we were in Inpatient Rehab and the advice from Older Adult Quads that were hurt young like Mckenna - that they VERY much appreciated their parents who made them do things on their own even though it was a struggle and they didn't like it at the time....kind of like tough love.  Because of those early days ... they were better for it as adults. Really aside from telling us that adaptive sports were awesome...telling us as parents of a young Quad...we need to let her struggle and do things for herself if she wants to be independent.  It's so hard watching her struggle though...so hard - at what you and I would consider simple tasks..... where I see her get frustrated but keeps on trying.  ... so hard as a mom to see...as a parent to witness.   She has big goals of traveling and going out West and going to college on her own ... she does not want her mom and dad around her.  I mean, I get it --- even though I think I'm pretty cool -- LOL!  I get it.  She will come around when she is older right? When Moms and Daughters are best friends. :)   So that is what we try to do - making her do so much on her own.  And it's been paying off indeed. I've seen her mature and find her voice ... and she continues to get more comfortable speaking to adults.  She does most of her care on her own... and yes, while it does take longer ... she does it on her own!  When she came downstairs one morning with her leggings on that she put on herself... we knew then -- she's gonna be fine!  Why?....because they were not just a regular pair of leggings, they were those tight compression leggings. (HAHA!)  What took her 15-20 minutes to do now is a breeze.  We are beyond proud.  Every day we check boxes off on tasks that she'll need to do on her own.  

We've all been dealing this year with the changes of the Corona virus.  Mckenna's respiratory system is compromised due to her injury.  She has no ability to cough to thus clear her lungs when congested.  However, we do have what they call a Cough Assist machine that can help her when needed.  In addition we have The Vest Airway Clearing System that wraps around her chest and softly vibrates.  The purpose of this is loosen up anything so it doesn't stick on her lungs and allows her to cough it out with the help of her cough assist.  A simple cold could be a serious matter for Quadriplegics like Mckenna. Developing pneumonia is a possible danger and the leading cause of death for Quads.  We have all the tools in our arsenal at home as well as making sure she is keeping up with essential vitamins to be prepared.  We also made an appointment with her Pulmonologist for a lung function test.  She had one 6 months after she was hurt and we wanted to see what if any improvements have been made.  In addition, we wanted to get his input on handling the threat of Covid for Mckenna.  Her lung function improved slightly in both lungs.  She is functioning at 60% which he said is really good for her level of injury and better than he would have anticipated.  Good news!  

Another Doctor visit we made was to Mckenna's Nephrologist for her bone density.  This is another sad loss from her injury. She had a DexaScan at her 1 Year Mark and another one at her 2 1/2 year mark.  Without weight bearing...walking...it's hard for a wheelchair user to maintain their bone density.  To improve your bone health, you exercise, weight bare, eat the right foods, but very importantly your leg muscles have a lot to do with maintaining good bone health.  Mckenna does not get leg spasms like many Quads do, which is a Catch 22.  She doesn't have to deal with her leg(s) randomly kicking out or start shaking uncontrollably ...but it's  those involuntary movements that trigger muscles in your leg to activate ... which aids in bone density health.  She only gets that from her FES bike.  She is below average and did show some decline since her 1 year mark, but she is not yet at Osteoporosis level.  Her doctor was not alarmed where she was at and said it was expected.  (I was alarmed of course!)  The Doctor said she needs to continue to do what she can ... continue to be active is very important, continue to get in her Calcium intake and continue to use her Stander for weight baring.  Many wheelchair users have a Stander.... it locks her knees and allows you to stand.  So many great benefits from standing after sitting the majority of your day.  It improves bone health, digestion, stretches out your lower extremities, and reduces spasticity.  So conclusion , we will continue to monitor and she will continue to do all the right things she can do and pray it doesn't get dangerously worse.  

This past summer and fall have been good for Mckenna.  We are doing everything we can to keep her active, show her what is out there and keep her passions alive.  She was able water ski over the summer with Charlotte's Adaptive Sports Program (ASAP) - LOVE THEM!  She participated this Fall in their Cycle to the Sea handcycling on of their legs from Charlotte to Myrtle Beach. We are so grateful for all those that contributed to Mckenna's own fundraiser to earn money for ASAP.  We did a lot of bike riding and we finally put in our order for her very own handcycle from the fund raiser that Famous Toastery in Lake Wylie did for her for a hand cycle.  Her own bike is supposed to arrive next month - a lot goes into customizing handcycles.   She went on a lot boat rides with the pontoon boat and her and her friends did many sunset cruises ...they love those sunset cruises.  Mckenna is also practicing her favorite - Quad Rugby with ASAP weekly.  Just drills and no contact though...but it's something!  She is getting to use her own Rugby chair that she got from Kelly Brush Foundation and loves having something that is now custom to her size which makes such a big difference.  We all went camping at Lake Jocassee and that was great fun!  We just got back from Park City Utah where Mckenna was able to snow ski through their National Ability Center.  What a great program! We are now looking at purchasing her own sit ski because we know we would ski together as a family.  We feel that if she had her own that would then be custom to her, she would progress so much faster and enjoy it so much more than she already does because it would indeed be easier if it was her perfect fit.  

Her friends, Lucy, Sammi and Regan - continue to be her rock!  I can't say enough how much I love those girls and their parents.  Mckenna has be so fortunate to have their loyal friendship.  So many times after an injury like this, friends leave and life can be very lonely.  These girls have stuck by Mckenna's side and I know that if it was not for them she would not be where she is today.  

Mckenna started her Senior Year of High School.  Exciting times..but weird...and sad... because this year's Seniors have not really had a proper Senior Year due to the Corona virus.  She's been applying to colleges.  I'm not going to say much on that yet, because I don't want to jinx anything.  However, she will be going away and staying in the dorms.  We know that much.  How that all happens we have to wait until we know what college she decides on.  She wants to be independent going to college, which I think right now, doable but we'd just have someone help her a few hours a week based on where everything stands and based on her sheer grit and determination! She can't set herself up in the FES bike alone and that is going to college with her...and a few other things that someone could just lend a hand in to help her out. Not necessarily help her physically out, but be around just in case Mckenna needed an extra helping hand. 

We are on the hunt before going away to college for a new vehicle for Mckenna.  We've struggled basically since Day 1 with our current van.  So for 2 1/2 years now...Mckenna's friends have correctly renamed her Van from Ruby Rocket to Clifford (her van is red).  This thing never works right... we've replaced the transmission already... the ramp sometime works sometimes doesn't despite numerous ..and I mean ...numerous trips to the garage.  The automatic door doesn't always work.  All these things are pretty important because when it's just Mckenna in the van... it's not exactly easy for her when stuff does not work.. or how does she get in or our if the ramp decides to stop working.  It's been frustrating and unfortunately we are upside down if we try to sell the van.  It's basically a no win situation for  us... on our quest of a new vehicle.  But...she needs one before college. So for us...times a ticking!  She definitely needs something with a ramp because she's not taking apart her chair every time she gets into her car.  She has been doing awesome with driving...even that big old van -- she is great at maneuvering.  She drove her and her friends to Asheville and all around for the weekend for her 17th Birthday - and did great! What a feeling of independence and confidence booster getting her license has been.  She's even been to the grocery store by herself... which has been so good for her independence.  I didn't even ask her to...she just said...I'm going to the grocery to pick up some fruit (she LOVES fruit), nutella and cereal.  All her staples. LOL!

At the 2 1/2 year mark, life has gotten easier for our family and the bad days are fewer.  We still have our bad days of course and I think we have that right to have them.  I tell Mckenna ... you deserve to have a bad day and have that mental break down day - cry , scream , whatever ... just don't stay there.  ...and she does not.    I don't know if it is the crazy world of the Corona Virus or just the natural progression of being a Spinal Cord Injury family and people that were once in your life move on, but I've definitely had more lonely days.  I worry about stuff a lot.  My brain is on 24/7!  I worry about Mckenna's health...is she drinking enough?...is she moving enough so she doesn't get a pressure sore?...how long did you stand today?...did you stretch today?.... where did you get that bruise from?.... etc. etc. etc.  I drive my family crazy sometimes. Mckenna will agree 110% lol!   I'm sure as a Mom I  over analyze everything.      I worry about how Mckenna will be treated in college. Will kids give her a chance or will they be afraid to approach her?  She still today will hold herself back on doing things with people, her friends, which I wish she wouldn't - so that worries me too.  She excludes herself on purpose.   Although she is getting better with time and I think that is what it will take - time to be more comfortable as her confidence grows.  She's come so far already.   She thinks she is holding people back from doing what they want to do ... so she removes herself from the equation worrying about the fun of her friends.  For example we went camping with her friends.  She wanted to leave a couple days early so her friends could do stuff where she felt like she was holding them back and couldn't or wouldn't do with her when she was with them.  Mckenna has such a big heart and will sacrifice her own happiness every time.   I know her friends don't make her feel like that on purpose, but it's such a big part of Mckenna's mental state.  She's also now worried about accessibility (which has been an issue sadly).  So if she doesn't really know what it will be like....she again, declines.  I told her that her friends would help her figure it out.   I see how it effects her though ... as she sits home alone when I know why she is sitting home alone.  I know people are probably afraid of taking chances to include her - I get it ... but I'm grateful for those that do -with  the  -  we can figure it out!  It's funny but Dads seem to be like...whatever - you coming? What can I do?  I think it's how Moms and Dads are wired....  because I definitely know when it comes to Mckenna, Mike and I are definitely wired to react and do things differently.  Which I think can be good too.  You need to balance each other out and meet in the middle  Social Media has been a Catch 22 for me. I enjoy reading about people's families, but some things make me feel like I'm not doing enough for Mckenna and it's not a good feeling.  I try not to compare because I know someone out there is looking at us doing the same.  So I've been really trying to take a step back more and put things into perspective.  I'm such a doer...a planner...always in control...it's how I'm wired... and this situation has thrown my psyche for a loop. I think overall, our family has grown together.  We've experienced the lowest of lows and the highest of highs.  My oldest daughter Madison - I love her so much.  I know that she has taken a back seat sometimes because we've been so focused on Mckenna.  I feel guilty but know that as time moves...my ability as a mom in this situation will learn to handle things better.  Madison graduated from College in December and we are sooooo proud.  She's adulting now!  She will be a great adult.  While she might not be the best driver   (LOL!) she has a good head on her shoulders and is loving and caring -- and has no problem at all sticking up for herself or those around her.  Raising 2 strong ladies to take this world  head on ... we are blessed!  

Much love to everyone and thank you to everyone for your continued support and prayers!  

This is a marathon ... and we are grateful you are running it with us!

Follow on Facebook - #MckennaStrong 

https://www.facebook.com/groups/366364754161099

Love ,
Michelle 

I've added a few more pictures to the gallery too.