Hanging in there... taking it day by day

Hi friends... sorry it has been so long since my last blog but among all the other crap going on in our lives it is with deep sadness that I tell you we suddenly lost my stepfather, Gerald (Jerry) Sopkowiak on January 24th unexpectedly.  My mom and her two dogs, Max and Sugar, have since had to move in with us as it is too painful and lonely an hour away in such a big house.  We put her house on the market in Fernandina and have been busy getting all of her affairs in order.  Last week I was down with the flu for 4 days and am just getting back to the land of the living.  God must certainly think I am wonder woman with all of the trials and tribulations he has put upon me these past two years.  I am rolling with the punches facing adversity and jumping through hoops to make our lives as normal as possible under the current circumstances.  Please keep my mother in your prayers as this has been a very very difficult transition for her and I pray that she finds peace and comfort, her home sells quickly so that she can close that chapter of her life and begin a new one here in Jacksonville in a new place she calls her HOME.  Being strong for her has kept me from falling apart with grief myself, ... he was a father to me and a grandpa to my boys for 21.5 years and always there for me at the drop of a hat with whatever the boys or I needed.  I am surely going to miss him as will my boys.

 On a positive note, Alex has been moving right along in his therapy... still going twice a week, except for last week as I was down with the flu.  He has been working on walking on uneven surfaces such as grass, sidewalks, streets etc without his cane.... still a little difficult at times... but working at it nonetheless.  Life goes on... we are taking it one day at a time.... baby steps at times... leaps and bounds others.... knowing that God has great things in store for us....IN HIS TIME, not ours.  He has come so far yet still has a VERY long way to go!



We all take for granted things that come natural to us... watching this next video brings tears to my eyes as I watch him struggle to do something so easy as walk backwards.  He is a trooper and keeps on going, even when he doesn't feel like it.  Love our therapist and their patience with him... they have become our family away from home going thru this together....a bond that can't be broken.




We have decided to go thru with the baclofen pump surgery however we will be putting it off until August.  I'll keep you all posted on that as it gets closer to that time frame.  Alex not excited about it however knows it will help in the long run.  Please continue to keep us all in your prayers....we still have our ups and downs and life is never simple for us..... yet we are very very grateful for the life we do have with Alex.  He continues to make us laugh every day..... embarrasse me, especially Brooks, lol...make me cry....love me bunches....aggravate Chad and my mom to no end by pushing their buttons but we are truly blessed in more ways than one.  THANK YOU GOD FOR ONE MORE DAY WITH MY HANDSOME BOY!  Thank you God for our beautiful, crazy, hectic life.... I give you all the Glory, Honor and Praise... AMEN!

PEACE~LOVE~N~THUMBS UP!
LISA

HARD TO BELIEVE TOMORROW MARKS 2 YEARS IN RECOVERY!

WOW....doesn't seem as if two years has gone by... still feels like it just happened yesterday!  I still get emotional this time of year but very thankful I still have him here and full of hope that things will continue to improve with his recovery.  As I look back on the website in the archive of blogs it is amazing to me to see just how far he really has come in 2 years.  2 years... wow... even typing this it's hard to believe that 2 years has passed by.  It has flown by and then again.. no it hasn't lol.  From 3 hours to live to 2 years....THANK YOU GOD!  This year has really been a GREAT year in recovery as Alex has really come leaps and bounds with things that he can now do that he was having trouble doing the previous year.  He still has a very long way to go cognitively speaking... not sure that he will ever get that part back just as he was but again... I still have a lot of HOPE and BELIEF in the man upstairs that he will do this in his OWN TIME... not mine!
Reflecting back... here we go... a year in review:

January.... HE GOT THE TRACH OUT, how could I forget that happened this past year, lol!  That's a HUGE DEAL!

February... HE WENT IN THE WATER AT THE BEACH, yes in February, lol.  He was so excited to get that Trach out and be able to go under water...30 below zero water... but he was determined to get in it! We also had his Celebration at Macedonia Baptist where we got to meet a lot of our prayer warriors! A big thank you again to Macedonia Baptist, THE ICE MAN, Diamond D Ranch, Fran's and Debbie's Doghouse for making it a big success... LOVE YA'LL!

March....ALEX WENT TO HIS SENIOR PROM!!  He also SWAM for the first time!  WE WENT TO HAWAII.... compliments of DREAMS COME TRUE...thank you thank you thank you... OMG... I wanna go back and stay lol!  Words cannot tell you what that trip did for our family.  It was refreshing and we got to step away from reality for 7 days, much needed to reboot and regroup and not have to think about what our lives are really like on a day to day basis.  Alex turned 18 while in Hawaii and got to surf!  AMAZING AMAZING AMAZING!

April... had a little set back and we thought he had fractured his left ankle, had to wear a boot for a bit, but he worked thru it.

May... Finished his senior year school work!

June....GRADUATED HIGH SCHOOL... AND WALKED ACROSS THE STAGE LIKE NOBODY'S BUSINESS!! Thank you God and Miss Zember :0)  To celebrate that, we took a trip to Alaska, thanks to Sherry and Pete.... INCREDIBLE!!  What an amazing adventure that was!

July... Had our first baclofen pump trial and failed.  They couldn't get into his spine but we didn't give up! Alex finished and graduated his day treatment program.. THAT WAS A BIG DEAL!

August....ALEX TAKES HIMSELF TO BATHROOM and uses cane to walk around house!!  BIG DAY FOR ME, lol!  Finally some independence for this young man... amazed how God will just show up and throw me a bone to get me thru to the next month, lol.  Just when I think I will give up and think this is how it's going to be forever... He will show me what he is capable of and pull me right back!  IN HIS TIME... not mine!

September...HE GOT A TRIKE!! Alex wore a cast on his left arm for most of the month... not so much fun, lol.  He decided he wanted to do chores ( that lasted the month of september, lol)  He became Brooks' biggest fan on the football field at Baldwin and LOVED going to his games and cheering him on.  Would show off occasionally with a special Alex dance or walking on track for crowd... He's a hotmess FO SHOW!

October..... his left arm really started showing signs of improvement.  Was able to start bending his arm from elbow out.  Never could do this before.  I really feel like that left arm will come around .... I think God is saving that for his grand finale'!!

November... Alex had neuropsych evaluation where I was told that basically what he is today is what he will be for the rest of his life. I DID NOT LIKE THAT ANSWER, lol.... after being in a state of depression for 3 days, God decided to throw me another bone, ALEX TOOK A SHOWER BY HIMSELF!!! Alex was able to get up from the floor by himself no cane, no help... AMAZING leaps and bounds progression between October and November in physical and occupational therapy!!

December ...Baclofen pump trial was a HUGE SUCCESS!! Walks into therapy with NO CANE!  He isn't allowed to use his cane at therapy and has been doing GREAT!

3 hours to live.... to TODAY... Thank you God for the many miracles you continue to bless us with on a daily basis.  ALEX MICHAEL ROSS is definitely a MIRACLE!!

Sitting here, looking back... reflecting upon the past year... tears of joy and sadness falling.  Bittersweet memories of what I miss and yes there are still those days that I MISS HIM... the old Alex!  I catch him watching his video's online.... he smiles as he watches.. to me, so sad.  He is flat, no emotion, turns to me and says... "we had a lot of food in our pantry back then".  REALLY, LOL... that's what you get out of that, ha ha!  He thinks it's funny when he watches but I don't think he quite knows how to express what he may or may not be feeling... sad to me.  I have my moments... right now might be one of them.  Even though I know I am truly thankful to have him alive and home and in the awesome condition he is in... I'm not dismissing all that, but I do still grieve the loss of MY old Alex Michael Ross and what he could have been.  Maybe I'm just having one of those "pity parties" by myself lol.  I have those days... they are getting fewer and fewer... I may never fully get over the void that is there, I can only hope that with time it gets easier and few and far between.  I try to stay as positive as possible for Alex... he has only seen me cry about his condition once this year, on our ride home from the neuropsych evaluation in which I couldn't contain my emotions after hearing the doctors take on Alex. God has shown up on more than one occasion and continues to bless our family in more ways than one.  One of my goals this year is to do more of Paying it Forward and blessing others as we have been blessed.  It's our turn to give back in more ways than one!  To start on Alex's documentary and book! FREE MOM TIME is what I need to accomplish that... may take a little longer than I originally anticipated, lol.  I talked about getting Alex enrolled in atleast one college class but that is being placed on hold once again until we get this baclofen pump surgery out of the way and see what kind of set backs we have if any.  Once he has that in place, I have to see what our therapy schedule will be as it may be a bit more intense than what we have now and I don't want him to miss out on school if we start.  I should be hearing from the neurosurgeons soon to discuss the date of the surgery.  I am very hopeful that we will see dramatic progress in that left arm and hand and it is my goal to see that Alex is walking without his cane by the end of next year!  We still face obstacles on a daily basis... and yes we still deal with the whole HANDICAP BATHROOM issues, lol.  Just dealt with it today at Walmart on Beach boulevard!  Of course he is calling this lady out in the handicap stall and says... " I don't see any wheelchair wheels under there"... "ohhhhhhhhh my Goooood" he says!  My little brain injured boy, lol... shhhhhhhhhhh "let it go" I say.  CRAZY KID!  There are days when Alex has an off day and we can't quite put a finger on why... neither can he.  Hoping to get him another eye test to see if he has improved... also think he needs a hearing test because he blares the TV and I'm not sure if it's because he can't hear or he can't block out the noises around him to be able to focus on just the TV.  He is able to sit thru an entire movie without going to the restroom (THANK YOU JESUS)... his attention spans seem to be getting longer and longer for different things... just depends on time, place and if it's somewhere he wants to be or somewhere I need him to be, lol.  I just need to get across to his friends that even though he seems ok on the outside... he really isn't the same on the inside and he has NO THOUGHT PROCESS.  He cannot think and act like he used to.  Again.. if he thinks it, he says it and he does it without any rationalization.  Does not see the end result or think about it. Now that I think about it... he didn't really do that before lol.  Alex was always my daredevil... acting then suffering consequences later.  Now... he is just flat.  Sometimes it's a blessing.  Sometimes not so much, lol.  2 years... WOW.... hard to believe that I haven't gone to a job outside of my home in two years...BUT I DO WORK 24-7 don't get me wrong, lol.  Today I am very thankful to have ALEX very much alive NO MATTER the challenges we face or obstacles that get in our way.  I welcome the obstacles knowing that it only makes me a stronger person and shows others that with Christ ... ANYTHING IS POSSIBLE.  I will continue to let my light shine, looking back fewer and further between, focusing on the positives as ALWAYS and embracing the new journey path that has been set before us.  I'm learning forgiveness and letting go of hurt....something we all probably need to do sooner than later.  Life isn't easy... no one said it would be.  You never know when your phone call may come and I hope it never does.  A parents worst nightmare... can happen when you least expect it.  God is using us as an example... a tool if you will...and I hope that we continue to inspire all around us!!  Alex Michael Ross... you are a true miracle of God... I love you with every beat of my heart and I am so very proud of you and all you have accomplished thus far.  There is NO LIMIT to how far you can go.... God has a plan for you and I know in HIS TIME, YOU WILL DEFINITELY DO GREAT THINGS FOR HIM.  Keep reaching for the stars and keep that beautiful smile on your face.... YOU GOT THIS!!


A huge thank you to all of my friends, family, prayer warriors and followers if you are still out there.  I couldn't do this without your love and support.  God knows when I need a lift and he sends angels my way with a little pep talk here and there or a girls day out :0)  I know life goes on for all of you and you probably think that now we are home and it's been 2 years we are fine.  And we are for the most part but we are far from normal.  What is normal anymore, lol.  Stress still plays a huge part in our every day life but we adjust on a day to day basis.  Still baby steps but moving forward.. none the less! If you ever have an off day... just think about Alex and put a smile on your face.  Even on my worst days of days I have to regroup and know that there is someone out there that has it worse than me... ALWAYS!  On my worst day of days... you know what... LIFE IS GOOD!!!  AMEN!

Thank you God for one more day with my Handsome boy!

PEACE~LOVE~N~THUMBS UP!
LISA

BACLOFEN PUMP TRIAL WAS A HUGE SUCCESS!

We arrived at Wolfson's Children's Hospital at 9:30am got Alex all checked in and they videoed him prior to the procedure so that they could measure his ranges of movement once the baclofen was injected into his spine.  They measured him at 2 hours after the procedure and again at 4 hours.  The results were AMAZING and a tremendous improvement in flexibility!  An amazing thing to see right before my eyes that Alex could go from having so much tone in his left wrist and left foot to looking like a rubberband man!  She could take his toes and bend them forward and backward like crazy! She could bend that left wrist forward and backward without the tone fighting gravity... amazing amazing results and a PERFECT candidate for the baclofen pump!  There was one side effect that was on the downside and that was when he went to walk, his left ankle was SO LOOSE and relaxed that his ankle rolled like nobody's business and it was hard for him to get that foot straight onto the ground for mobility.  This I am told can be controlled with his brace and hard work at physical therapy once the pump is installed.  Physical therapy will help regain strength in that ankle as it is weak now and tends to roll when he walks barefooted.  The medicine had such a great effect on him that it made it too relaxed.  Docs think that they will place the catheter further up the spine to focus more on the left arm but whole left side will still get relief with the medication.  You are all probably thinking the same thing I am.... THIS IS WONDERUL and can't wait to see him scheduled for surgery.  WELL..... Mr. Alex is not so caught up in the whirlwind as we are and insisting he is NOT having another surgery.  Soooo, this is where I need my prayer warriors again.... Please pray for Alex's peace of mind that this surgery is just like putting a band aid on compared to the 10 surgeries he has already had!  Of course there are always risks with any surgery but nothing so severe that it isn't worth a shot to see if we can get that left arm responding once the tone is gone.  I asked him one morning as I was helping him cover himself in bed.... "Doesn't it piss you off that your left arm doesn't work?" "Doesn't it bother you?".... my simple minded, one emotion, precious 4 year old in an 18 year old body looks at me flatly and says... "Not really", as he shrugs his shoulders.  "I guess I'm just used to it now".  He jokes from time to time and speaks to his left hand and will say things like " DO WHAT I TELL YOU TO DO" and spank it a couple of times lol.  But I truly feel like he is content.  He is ok with life and how he lives it day to day.  he has no worries, life is Grand and he is happy to be alive.  Why can't we all live life that way?  Things were so much simpler when we were children ages 4-6.  Our major worries were if we were going to be able to eat at McDonalds and get some of those delicious french fries in our happy meal.  There are times when he gets anxious and I KNOW that something is bothering him, but he really doesn't know.  He can't comprehend it... He can't quite put his finger on it... express it.  I have just gotten used to the tell tell signs of his discomfort and things that make him anxious.  I pray that his heart is lightened with the possibility of the baclofen pump surgery.  I think that this could be the beginning of new life in that left side.  He is still progressing, making movements we haven't seen yet.  Squeezing and picking up things... learning how to relax that left arm so that the tone subsides.  Our 2 year mark is coming up... WOW!  Looking back how much we have endured and conquered.... still sooooo much to accomplish and look forward to.  You know what... LIFE IS GRAND!  We are blessed beyond measures.  I made a statement on FB the other day.... "You never know how strong you are until being STRONG is your only choice"!  AMEN!  When any of you get down or think that life is horrible or not turning out how you wanted it to. Stop and think of Alex.... think about how he looks at life and all that he has been thru.  LIFE IS GRAND!  Stop looking at what you don't have and be thankful for what you DO HAVE.  If you are reading this ... YOU HAVE ACCESS TO INTERNET, lol... that in itself is something to be thankful for, lol! Health, Shelter, Family and Love.... sooooo many many things to be thankful for.  Christmas is around the corner, find some quiet time to thank Jesus.... HE is the reason for the season.  Holidays can be depressing for some and if you are in that mix.... I pray that you find peace and comfort in whatever ails you and that you are able to spend time with loved ones be it family or friends that can lift your spirits.  Count your blessings.... and then count them again....I'll say it as I've said it many many times.  No matter how bad you think you have it... someone ALWAYS has it worse than you!  As bad as I think I have it some days.... even at my worst when I think I CAN'T possibly take another day like this.... I see someone come into Brooks Rehab who has it 100 times worse than me or Alex!  Blessings all around us... all we have to do is open our eyes to the truth and focus on the positives!  Wishing you all a wonderful holiday with safe travels.  Blessings to you all.... from our house to yours... LIFE IS GRAND...... MERRY CHRISTMAS!!


PEACE~LOVE~N~THUMBS UP!
LISA

BACLOFEN PUMP TRIAL IS A GOOOOOO FOR FRIDAY!!

Friday is D DAY...DA DAY... THE DAY!!  Prayers needed starting now in hopes that this will work this time!  If you remember they couldn't get in his spine last time so we had to have xrays... they were inconclusive and doctors couldn't see anything wrong and no reason that they couldn't get in. SOOOO, let's pray that all is aligned with God's plan and this trial works so that he can get the baclofen pump!  He still has alot of tone that he fights daily that I think inhibits his progress some NOT THAT HE HASN'T COME LEAPS AND BOUNDS THUS FAR... but... there are still kinks that need to be worked out and I truly believe that this pump can do the TRICK on ALL of it!

Today was an awesome day at Physical Therapy as Alex showed me another miracle today... ONE THAT I DID NOT THINK WOULD EVER COME!  See Below!

NO HARNESS... WALKING ON THE TREADMILL... NOT HOLDING ON TO ANYYYTHING!!!  PRAISE JESUS!!  Alex still has a long way to go but we are working on getting all that squared away, physically and MENTALLY in the new year to come!  I'm going to hold off on college for the spring term, I just don't think he is ready for this challenge JUST yet and we are still focusing on the THERAPY part right now which is enough in itself for me let alone him, lol!  

I had the sweetest email today from Rebecca Crockett.... THANK YOU SO MUCH!  Today was ONE of THOSE kind of days, tears falling, heart wrenching, mentally exhausted... how much more can I take of this DAYS and that email could not have come at a better time!  I've said it before and I'll say it again... God always knows when to send me angels and today my friend YOU WERE IT!  

Lots to be thankful for.... headed to church right now to give him thanks in person... just wanted to update real quick before time slips away from me!

LOVE YA'LL... THANKS FOR THE CONTINUED SUPPORT!!

PEACE~LOVE~N~THUMBS UP!
LISA

ALEX MAKES LEAPS AND BOUNDS IN PT AND OT... MIRACLE BOY FO SHOW!

Alex has been moving along leaps and bounds over the past month and half with new things developing in both Physical therapy and Occupational therapy.  Today he did 5 reps in lowering himself to the floor and getting up from floor ALL BY HIMSELF!  This is something he has NEVER been able to do, let alone by himself... REPEATEDLY!  As you watch the next series of videos you will see how much easier it gets for him once he has gained confidence in himself and the procedure.  SO PROUD OF YOU ALEX MICHAEL!

The therapist wanted to work on this so that in case he ever falls, he will be able to get himself up from the floor should this ever happen.  Until now.. he would have been stuck on the floor... all this is new for us and I just cant believe how far he has come in the past month... I think even the therapists at Brooks are amazed at how much he has improved!

This is really his second try... I didn't video the first.

3rd GO

4th GO

 FINAL GO.... WAY TO GO ALEX!

This video below is from last week and shows his occupational therapist stimulating his triceps to get that elbow to bend.... THIS IS ALSO VERY NEW as we have never seen movement, nor has he EVER been able to get his elbow to bend!!!  He did it today WITHOUT the triceps being stimulated... he was able to do on command by himself no help... I MISSED it as I had gone to Walgreens to get his meds but you can bet I will get it tomorrow so that I can share with you.  Still this video shows how hard he trys once she lets go.



I have received several emails today all of which have made me smile.... THANK YOU SO VERY MUCH for your continued love, support and prayers... MEANS THE WORLD TO ME!  I am going to leave you with some significant bible verses that were shared with me and just what I needed to hear! Thank you Katy and Lori.... I appreciate you taking time out of your busy days to lift me up!!  LOVE ALL YA'LL!!

Matthew 19:26

 ²⁶ Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”


Psalm 27: 13-14 “I will remain confident of this:  I will see the goodness of the LORD in the land of the living.  Wait for the LORD; be strong and take heart and wait for the LORD.” 

PEACE~LOVE~N~THUMBS UP!
LISA

God sent me a message thru Alex today!

Friday was a very hard day for both Alex and I with a 4 hour morning spent with the psychiatrist.  He completed a very intense neuropsych evaluation.  We had a reality check that we certainly were not prepared to hear.  Alex is post 22 months Traumatic Brain Injury and has reached his PEAK of mental recovery.  I was told that basically what Alex is today is what he will be for the rest of his life.  I cried all day Friday..... this was my second worst nightmare.  We all have such high hopes for our children... to grow up, become successful, find the girl of "our" dreams lol and have beautiful grandchildren.  This for Alex... may not ever happen and I think this is what saddens me the most.  Not that I will have to take care of him for the rest of my life.... I've accepted that.  Not that he missed out on his childhood.... we have come to terms with that....we cannot get the past back.  It's the fact that he may not have a future.... one that I had hoped for anyways. I was really really angry Friday.  Reality was a hard pill to swallow.  I am sad that my boy not only lost his childhood, he will miss out on a normal adulthood life.  Filled with finding the love of his life and falling in love, having a job, having children.... everything has been taken away because of someone else's decision.  He has been legally termed "mentally incompetent" and doctor wants me to get guardianship to manage his medical and personal affairs.  Here are some of the excerpts from the report:
 " Alex is NOT the same person he was prior to this traumatic brain injury, and to expect otherwise is to perform a great disservice to Alex.  Do not expect him to remember and follow through on requests.  He can be expected to become agitated and impulsive when he is thwarted from what he wants to do (even if what he wants to do is not in his best interest).  he remains manipulative, but his manipulations are only designed to satisfy his immediate gratification.  Alex is considered unable to maintain productive employment at any level both now and in the future, and he is considered permanently and totally disabled.  He has an organic mental disorder related to his traumatic brain injury that precludes him from employment.  Alex continues to experience trimodal neglect along with his visual field cut, and these phenomena along with his limited insight, awareness and judgment will present continued limitations to his ability to self-monitor and to protect himself from self-harm from this point in his life forward.  In other words, Alex is not safe to be left alone for any extended period of time.  He demonstrates the IMPAIRED ability to appreciate a situation and its likely consequences and he demonstrates the IMPAIRED ability to manipulate information rationally."

You can imagine after hearing all this I was a basket case as I was certainly not prepared to hear all that!  I was expecting to hear how GREAT AND AMAZING he was doing since his last visit!!  And I did get that... but I also got REALITY.  Again... not what I was expecting to hear.  I left that office in tears and cried the whole way home.  My handsome boy sitting next to me in the front seat, puts his hand on my leg... looks at me and FLATLY says... "it's sad huh"... "mom don't cry".  He is steadily turning the music up, trying to get me to fist pump with him... trying to divert my attention... I LOVE THAT KID.  I have cried off and on all weekend.... LSU beating Bama helped a little, lol... but I have just been down in the dumps Sunday and today.  Chad has been awesome... trying to bring out every positive.... showing me Alex's graduation day picture with all of us in it... LOOK HOW FAR WE HAVE COME... who says give up now?  We will make the best of whatever we are given...that's what we told God that night... YES WE DID!  Well let me tell you how God works in our lives and what he did for me today!!  I stayed in bed today.... went to bed with and woke up with a major headache.  Not sure if it's all the stress I have been under since Friday or from crying so much, lol.  It was about 1pm today I guess... I heard Alex get up off the sofa, walk to the bathroom with his cane... this is normal now... he gets around with his cane in the house... yes I have to hide things in the pantry lol!!  So next thing I know, he tapped on my door, opens it, I notice he has on different pair of underwear... then I realize wait...  his hair is wet... WHAT THE FRENCH TOAST???  I said " did you change your own underwear?"...and  "why is your hair wet?"... he said... "I GAVE MY SELF A SHOWER!!"  I jumped out of bed... I was soooo impressed and proud and just.... BEAMING with pride... OMG... " YOU GAVE YOURSELF A SHOWER????".... He was soooooo proud of himself you have no idea!  he said... "You better be facebooking about what I just did!!"... "YOU BETTER TELL EVERYONE MOM".  It CHANGED my whole demeanor!  I said... "let's go to Baskin and Robbins and get some ice cream... you deserve a treat!... I'll jump in the shower and get you dressed when I get out".  I went and got his cloths put them on the sofa... jumped in the shower and when I got out... HE HAD DRESSED HIMSELF FROM HEAD TO TOE, SOCKS SHOES AND ALL!!!!  What you may not be understanding is that.... he has NEVER done any of this by himself!  TODAY WAS A HUGE DAY! A MAJOR MILESTONE in one day!  Like months of preparing and all of a sudden out of nowhere..... GOD SENT ME A MESSAGE!!!  This was it... he sent me a message thru Alex and said DO NOT GIVE UP ON ME... I AM NOT FINISHED WITH HIM YET!
Tears streaming down my face.... God comes thru once again!  FAITH!  Step out on FAITH... Give it to God and he will not let you down!  The devil came in and kicked me down......... and God said... GET UP GIRL... WE GOT THIS!  Words cannot describe what I am feeling today.  A mixture of emotions... happy, sad, anxious, DETERMINED!  I'm not going to take what the doctor said and lay down... once again I am going to give it to God because the doctors that gave him 3 hours to live were wrong.  THERE IS DEFINITELY SOMEONE OF HIGHER POWER IN CHARGE OF ALEX'S DESTINATION.... and we are NOT THERE YET!!!  Today I am hopeful that Alex may still have a chance at a normal adulthood life. I am hopeful that he gets the chance to have a chance at love and marriage with or without children.  I am going to start praying for his wife.... she is out there somewhere.  Someone with the patience of a saint, a loving and giving heart.... someone special just for Alex.  I am going to pray that he finds a job specially to fit his needs and desires to feel productive and function to be the best that he can be.  I am going to pray that he is able to take online college courses and complete them successfully and if it takes 8 years to graduate... so what... he will do it in his own time.  I am going to pray that we will be financially ok as long as I have to stay home and care for Alex because the devil has a way of trying to taint that.  I am very thankful for a loving, caring, giving husband who has stood by my side when he could of easily walked away with all this responsibility and stress that was placed on him especially with a child that is not his but he considers his own.  I am thankful for Brooks who is my right hand man and best friend to his brother... I know it isn't easy for him and all the stress that comes along with having to be the main friend in Alex's life.  I am thankful that Nicholas was able to stay in school and not have to come home to help me so that he can graduate next year.  I am thankful for my close friends who keep me going day to day and help out with whatever it is that I need.  I am thankful that Alex's dad continues to help support him even though he is past 18 years of age.  I am thankful for the emails and fb posts I get from my little prayer warriors still praying and watching over us..... KNOW THEY HELP!
I'm not going to give up on Alex just yet.  He proved to me today that ANYTHING IS POSSIBLE....that kid has so much determination and drive that I truly feel in my heart he will SUCCEED and DO GREAT THINGS.  God sent me a message thru Alex today.... NO DOUBT ABOUT IT!  Me, Alex and JC.... WE REALLY DO GOT THIS!!!

Once again... Dear God... thank you for another day with my HANDSOME BOY!
PEACE~LOVE~N~THUMBS UP!
LISA

Thank You :0)

This morning started out as it ended last night.... I was still in my moment of weakness stage, tears still falling especially once receiving emails from a few devoted followers of the blog and close friends sending me words of encouragement and letting me know they are still out there.... sending prayers and hugs.... THANK YOU!!

It wasn't until Alex and I were headed to therapy that all sadness faded in an instant when Alex looks over at me in the car and says.... "Mom.... why don't they have a pill that I can take for patience?"  At THAT VERY MOMENT.... once again that 4 year old genuine innocence brought laughter and joy back into my heart.  Thank you God for the precious gift of gab! Truth is... Alex truly wishes there was a pill for that.  He knows how he is but he also knows that no matter how hard he tries... he can't fix it!   Like I said... Alex makes me laugh every day but today of all days... I really and truly needed that to bring me back to the strong side and find the positives in our situation. 



PEACE~LOVE~N~THUMBS UP!
 LISA

Missing Him Today...

I guess I'm having one of those melt down moments and need to write.  You see Alex just woke up,got out of bed, walked to my door with his cane to make sure I was taking him with me when I took Brooks to school....Bless his heart, he thought it was the MORNING already!!!  Love my lil brain injured Alex Ross and the innocence he sometimes genuinely portrays..... I was taken back in time for just a moment.... missing those days more often than not lately :0(  OVERWHELMED... SAD... HAPPY... all at the same time.  Still taking it one day at a time but knowing there is light at the end of the tunnel... one day.  You see Chad is on vacation this week and Alex knew that it was a possibility that I may leave him here in the morning while I take Brooks to school and he was so bent on going that he woke up thinking it was morning and made his way to the living room to MAKE SURE I DIDN'T LEAVE HIM.  Half asleep, I walked out to living room to see what he was doing and he said "I'm up, I'm ready to go with you to take Brooks to school".  It was at that very moment I was taken back in time... missing him... the old Alex... looking at him his demeanor was that of a 4 year old Alex, half asleep wanting to sleep in my bed when he was younger.  Crazy how in a split second I can go from being in control and in check .... to uncontrollable crying and wanting my Alex back.  I guess a part of me is still grieving for the Alex I lost and hopefully in time .... this too shall pass.  He makes me laugh every day, he makes me crazy every day, he absolutely drives me nuts with his OCD anal behavior with time and impatience.  If he thinks it, he says it and not just once.... 15 times and corrects me on how to do everything and when to do it.  When he wants a shower he wants it then, not in one minute, not in 5 minutes and will sit there naked on the toilet until I get in there to do it.... Life is still crazy over here and we are still learning every day how to cope, manage, handle, teach.... get by.  YES... ALEX IS ALIVE... THANK YOU GOD FOR GIVING US THAT.... Thank you for those impossible moments in which I think I can't possibly survive with a sane mind....Thank you for the times you control my mouth as I want to scream I can't do this anymore.... Thank you for the patience you have instilled in me, only YOU know where it comes from!  It has gotten easier to handle of course since we first came home, but there are still soooo many new challenges we face each day that I constantly need to call upon Him and scripture to carry me thru.  I have been burying myself in Brooks' football games and editing the 700 pics I take each game to carry me into another place.... any place but here that might bring back memories of things that I can't get back.  I don't know how much Alex will progress mentally... or how far his therapy may take him...  I can only hope for what I believe is possible with God.  He is in control.... He is in the driver seat and we are his passengers on this jouney of our new path in which he has paved for us.  Sorry to be a debbie downer tonight.... I don't mean to be....however, my blogging is very therapeutic and maybe subconsciously I have been putting it off in fear that these feelings would surface again?  I don't know that I will EVER be able to get over the loss of my old Alex....I certainly hope so.  Alex however is doing great.  He still does not show emotion, not sure that will ever happen or if it's even possible with his frontal lobe gone.  I am forever grateful that his personality and wit are still in tact.... that as we all know... HE NEVER LOST!  My heart aches for him, more often than not..... as his life consists of facebook, movies and videos.  He doesn't have any visitors these days.... all of his friends have their own busy lives with no spare time for Alex, so friends are few and far between these days.  Brooks is his lifeline outside our home and........ understandably so, he has his own life with his friends that doesn't always include Alex. Brooks deserves that.... this certainly wasn't his fault and these are the best years of his life.  So that takes it back to ME.  I have to be HIS everything.... 24-7.  Mom, friend, care taker, teacher, therapist....MAID, lol.... ME... I'M IT.  I gladly accept this challenge as my conversation with God that fateful night on January 6, 2010 was that no matter how he came back to me, I would accept him even if he was paralyzed from the neck down... I would handle the situation as long as I could have Alex back alive.  So I am... doing it... handling what was given to me, some days harder than others... today was one of those days.   Mentally he has a LONG way to go.... I can't stress this enough because to most he looks great and I think people get the sense that Alex is back to normal.  There is no normalcy in our lives.....today is just ONE OF THOSE DAYS... one of those days that I wish I could turn back time and go back... even for if just one day, to see my old Alex, to remember what it was like to be normal, to be able to go to work, to sleep thru the night, to come and go as I please.....to see Alex run up a tree and do a back flip or make up a funny dance.... missing you today Alex Michael Ross..... but very thankful I have the opportunity at a second chance at life with you, no matter how impossible some days seem..... in my heart deep down... I know that ME, YOU and JC... we got this!!!  Philippians 4:13 ( my saving Grace)

PEACE~LOVE~N~THUMBS UP!
LISA

WORK IN PROGRESS!

Hi friends and family.... sorry it's been awhile since I have been online updating you with Alex's progress... I have been a busy bee with taking pics for Brooks high school football team and editing them in my spare time.... which is next to non existent, lol.  An update on baby Caleb real quick... thank you all so much for your prayers and support you will be happy to know that he is now out of ICU and is now a patient at Brooks inpatient Rehab facility and is expected to be released next Wednesday I believe. So thank you prayer warriors and THANK YOU GOD for yet another miracle as he was NOT expected to recover as well as he has!!
Alex has been a busy bee at therapy and his left arm has really started to show signs of improvement in the past three weeks doing tasks that I thought I was NEVER going to see!  I am posting some videos below so you can see how hard he has been working :0)

He could not do this a MONTH a go!

You can see how hard he is working when his hand shakes.  Something we all take for granted being able to bend our arm from the elbow out..... she stimulates the muscles with a vibrator and it WORKS!

If you remember in the past Alex had to have an air cast on his arm to be able to lift it at all.  Now he can lift and straighten all by himself.... I get so excited just watching this again because God truly does continue to perform miracles on this kid... FOR REAL!  Notice the finger and thumb movement..... CLAP CLAP!

The therapists have noticed that when Alex brings his left arm up over his head, his left leg comes in, like rotates inward of which they have been working extremely hard in trying to get him to walk with his knee rotated in instead of out.  Sooooo they had this bright idea that if he walks with his arm over his head maybe his knee would rotate in.... it actually worked some.. funny how the brain connects things in our body, lol!  He won't be walking around like this but I had to video our trial run of it, ha ha!

HE IS DOING AWESOME... SO PROUD!

Practicing stepping up and down

MY LITTLE PINNOCHIO.... HAHAHAHAHA!!

The object is to walk straight in a line... Alex always puts his own spin on therapy lol!  

Alex continues to improve in all areas, however still has a very long way to go mentally.    He still has some kinks we have to get worked out and he goes for another neuropsych evaluation next week.  THIS SHOULD BE INTERESTING lol.  He has come a VERY LONG WAY, yet we still have a VERY LONG WAY to go.  WORK IN PROGRESS.... as long as we are still moving forward.... there's light at the end of the tunnel for sure!  After seeing the physical  improvements over the past 6 months... I get very excited and can't wait to see where he is in another year.... AMAZING.. AMAZING... AMMMMAAAAZING!!  God in ALL HIS GLORY.... right before my very eyes.... He never ceases to amaze me!!  THANK YOU GOD for another day with my handsome boy!
Hoping I still have some followers out there and that you are in awe just as I am of how far Alex has come just in the past 6  months.  I dream of the day the WHEELCHAIR is COMPLETELY gone.... in God's time.... not mine :0)

CAT SCAN UPDATE:

He had the cat scan and the doctor does NOT see any reason that we can't try for the baclofen pump trial again.  There was no visible evidence of scar tissue preventing them from getting in the spine so we are going to try again in the beginning of November I think.  Waiting on call from doctors office to schedule so I'll keep you posted on that procedure as well.  Please Start praying now and hopefully the surgery schedule will open up and we can get him in soon :0)

THINGS ARE LOOKING UP........Till NEXT Time......

PEACE~LOVE~N~THUMBS UP!

LISA

ALEX GETS HIS TRIKE.....WHAT A HUGE HUGE BLESSING!!

What an amazing and very emotional day last Thursday when Alex's new RIDE came in and we picked it up!  Tears flowed from my eyes as I watched Alex in all  his EXCITEMENT as he tried out his new vehicle.  He couldn't say thank you enough .... I think this is the most excited and VERBAL about being thankful ever... a different emotion developing if you will.  He is still VERY IMPULSIVE and cannot rationally process information.... still on the READY FIRE AIM streak instead of processing information as we do Ready AIM Fire.  When they presented Alex with the bike his face lit up like the Christmas Tree in Rockefeller Center in NY!  As I quote Alex.... "WOO HOOOOO.... this is the start of a NEW ALEX!..... I'm going to be so skinny and I'm going to enter into bike races!  I want to ride in the ultra 55!!"  Ok so maybe not the Ultra 55 lol.... but I am so excited about his motivation and get up and go ATTITUDE!!!  The start of a NEW ALEX!!  He has ridden on his bike everyday except for one since he got it.

The walking is going great..... still no use out of that left arm and he is still going thru the serial casting in hopes to get that left arm to naturally hang at his side instead of retracting.  THIS HAS BEEN A CHALLENGE as you can only imagine.  Showers are hard enough without adding an extra obstacle in the way!  He has been a real trooper with minimal complaints and it's really only when the cast is digging into his arm at the end where it's a little jagged.  He gets the current one removed tomorrow and they will probably put another one on, lol.  Not sure how long this process takes and you can imagine I am OVER IT ALREADY hahahaha.... HOWEVER.... I will try anything and everything to further his progress.  

Our family is in the midst of a storm and I ask that you lift us all up in prayer.  As if what we have all been thru isn't enough..... IT'S ALWAYS SOMETHING.  However.... you know that I have great faith in God and know that he is in control and we will WEATHER THIS STORM!! 

PSALM 37:7 Be still in the presence of the Lord, and wait patiently for him to act. Don't worry about evil people who prosper or fret about their wicked schemes.  

This Borrowed from one of my angels today ..... People will hate you, rate you, shake you, and break you. But how strong you stand is what makes you. 

Baby Caleb Johnson still remains in ICU , please continue to lift him and his family up in your prayers.  Rushing to get Alex ready for his therapy today... gotta run... HAVE A GREAT DAY!

PEACE~LOVE~N~THUMBS UP! LISA

SPECIAL PRAYER REQUEST - CALEB JOHNSON

Alex is doing great... we have been going thru a series of casting that left arm.... THAT HAS BEEN A NIGHTMARE but I will try anything to get that arm to hang straight atleast until we can get that Baclofen pump trial going.  His walking continues to improve... smoother and faster... I have videos to share and will try to get them posted tomorrow having issues right now. Always something!!

PRAYERS NEEDED
I have a very special prayer request tonight my friends.... please pray for Caleb Johnson, 18 months old who is in Wolfson's Hospital and has been since Thursday suffering from a traumatic brain injury and swelling to his brain.  Today we are asking that you pray for his breathing.... I was asked to concentrate prayer on that for today.  Lisa and Craig are his parents, mother and father to 5 children.... PLEASE LIFT THEM ALL UP IN PRAYER.  Lisa has not left his side.... you all know I can soooo relate and feel their pain and emotional roller coaster that they are on while watching those monitors like a hawk.

I visited the hospital today and prayed over baby Caleb asking God to heal him from his head to his toes... praying that God performs another miracle on this beautiful baby as I know he is quite capable of doing this very thing.  I ask that all my prayer warriors pass this family on to others to pray for them and baby Caleb so that another of God's miracles can be witnessed by all.  I have encouraged her to blog as an outlet and she was trying to get set up on caring bridge so I will keep you all posted if she gets a site going.

Thank you my sweet friends and angels.... WE ALL KNOW THERE IS POWER IN PRAYER!!!  AMEN!


PEACE~LOVE~N~THUMBS UP! LISA

LOT'S OF NEW THINGS GOING ON :0)

Hellooooooo my friends!!  A lot has been going on since my last blog!  Alex was awarded a NEW BIKE by the Bike Ability Foundation from Lisa Federico!  If you or anyone you know are looking for a great cause to donate money to.... please contact her at elisabeth.federico@bmcjax.com  Her organization helps children like Alex and grants them a bike!  There are families that donate money to her foundation and every couple of months she is able to award a child with disabilities a bike so that they can experience something that we all take for granted..... BEING ABLE TO RIDE A BIKE.   We are so excited because now we can all bike ride and Alex can get some outside excursions and exercise while enjoying himself! :0)  We went for measurements last week, the bike should be in within the next 6 weeks and YOU KNOW WE WILL BE PIMPING THIS THING OUT, LOL!

Last Tuesday he got a cast on his left arm!  No he didn't break anything, lol...His occupational therapists think that it will help in getting that left arm to hang straight instead of retracting like it does.  He still has no REAL functionality out of his left arm and hand but he continues with therapy in hopes that one day that arm and hand will wake up and remember how to function!   The cast has been a nightmare... imagine that!  His sleep has been very limited because all of the tone and spasticity that was in his arm is now all gone to his fingers at the end of his cast and his fingers tend to curl uncontrollably and very tightly around the bottom of the cast causing MUCH DISCOMFORT and irritability to say the least!  IT'S ALWAYS SOMETHING!!  However.... the cast will be coming off tomorrow and hopefully they will come up with a new way to cast or keep the elbow straight because I'm over this method of therapy after just one week, lol.  No fun for either of us at this point!  It goes all the way up UNDER his arm by his arm pit and hangs all the way to his fingers... HEAVY, bulky and just plain uncomfortable.  It has hindered his independence here at home with getting up and going to the bathroom by himself, etc.... so I'm worried that even though it may help in the recovery with his arm... it may regress him with all the other obstacles he has overcome and learned to do by himself!  

As you can see below he has really gotten the hang of walking with his cane and with God's continued daily miracles.....before we all know it he will be running around again!!  I think he may have been showing off just a little because I was filming, ha ha!

The video below Alex is working that left leg and building strength.  The days after he does this he is soooo sore... which means he is really getting a great workout!!

Below he is working on learning to step sideways and cross over.... something we all take for granted that Alex still hasn't even come close to mastering.  His hips are still very tight from being in hospital and wheelchair for so long but with time and hopefully a baclofen pump it will all work itself out!

Here Christy is working with his walking and hip movement and flow.  Doing much better... he certainly has come a long way but still has a very long way to goooooo!

My sweet Alex came up with the idea that he wanted to do chores around the house to earn some money.  ABSOLUTELY, lol!  I thought I would share this with you.... great to see him gaining a LITTLE independence around here and motivation to moving along with getting back to some sense of normalcy in his life.  He vaccuums the living room and dining area, puts away silverware from dishwasher and cleans his toilet and mine!!  CLAP CLAP... HA!! 

He has definitely improved so much within the last  month and a half and I'm so proud of how he continues to impress me with his positive attitude and go get em spunk!  We have a cat scan on October 7th to see what is going on with his spine and figure out if he will be a candidate for the baclofen pump trial.

We have been busy bees with therapy and Brooks football.  I have to stop and brag on Brooks a little bit as he has certainly been proving himself on that field and I couldn't be prouder!  I was able to get on the field last week against Wolfson and capture some great shots, so I'll share them below :0)  Alex LOVES going to the games and as you can see from the photo's below.... has certainly got that spirit!!!  ENJOY..... and I'll keep you posted on the cast and the pump!

AND MY ALL TIME FAVORITE!!  I think he just might be the cheerleaders favorite CHEER leader! :0)

PEACE~LOVE~N~THUMBS UP!
 LISA

PHYSICALLY: MAJOR PROGRESS / MENTALLY: ONE STEP BACK

Hi friends.... I'm back online to share today!!  So much progress from Alex this past month, I have to pinch myself to believe that it's even REAL!  Since my last writing he has gotten a little bit of confidence that has carried him a LONG way!  Just yesterday he popped right up off of the sofa...which has been a task in itself because of his whole BALANCE issue.  However... when Alex gets in his mind to do something..... You best believe he is gonna do it!!  He says.. "mom".. I look over and there he is standing, grabs his cane and off he goes to the bathroom... BY HIMSELF... yes he now takes HIMSELF to the bathroom... a YEAR AND A HALF LATER......THANK YOU JESUS!!  I never thought this day would come, lol!  I have had to make some new minor adjustments to help this along.  I found this toilet rail thing that hooks onto the toilet under the lid that has HANDLES that he can hold onto in order to lower himself to the toilet.  Since my last blog, I had to purchase a new toilet and with the help of Chad's dad... he and I put it in ourselves!  Things you and I don't think about... the height of the toilet....WHAT... there are different size toilets??  WHO KNEW, lol!   I went to Home Depot and purchased the tallest toilet I could find.. 16.5 ... our old toilet was 14.5.  Not much of a difference but just enough to give him enough confidence to pull it off!

Since being able to pull this off he REALLY thinks he is INVINCIBLE!!  Crazy how a little bit of a boost can put him in the REAL SUPERMAN MODE!!  Yesterday I left the living room to grab some clothes to wash out of my room and before I know it.... I hear the vacuum cleaner going.  WHAT THE HECK? Sure enough I come in the living room.... Alex has walked over to the wall gotten the Shark Vac and is in the living room doing his thing!!   AND PROUD LIKE A PEACOCK OF HIMSELF, LOL!  So today he makes out a list of chores that he thinks he is able to do so that he can get allowance, hahahaha!  I agree to $25 a week for unloading the silverware from the dishwasher and putting away every day, vacuuming the living/dining room and cleaning his toilet and mine.  After creating his list he pops up off the sofa and says he is going to clean my toilet.  What the heck?  Nothing like jumping right on task... of course I have to stop what I am doing because there is no way in convincing him to wait till later on or scheduling it on another day.  This is one NEW characteristic with our new Alex that I pray we overcome because like I said...  once he has it in his mind... it's next to impossible to convince him otherwise.  So we get up and head to my toilet, lol.... I get him set up with the Clorox cleaner thing and he goes to town.  Here are a couple of pics of his new venture, lol.

I can't tell you how PROUD I am and how in AWE I am to finally be at this point.  Don't get me wrong... he still has a VERY VERY long way to go and his left arm is still not fully functional but I feel like we have just climbed Mount Everest together, lol!  WHAT AN AMAZING thing to see... God's Miracle working hard in ALL HIS GLORY.... AMEN!!  

Now .... like with anything else where there is an upswing.... there is also a downward spiral of course! On the mental side of the coin.... there have been a couple of setbacks with his sleep.  Not sure what has sparked it or why but he has been having bad dreams again, and waking up often.... last night 4 times...... although I have my suspicions!!!  Last week he was scared to sleep in his room, begging us to please let him sleep in the living room, which is right outside my door.  This morning his final wake up was at 5:30am where he wanted to get up and go to the living room and watch TV.  Those that know him....THIS IS NOT NORMAL FOR ALEX.  This I hope shall pass and that he does not encounter this for the rest of his life.  I hate that he still has nightmares... I hate that he is still scared to be left alone.... for these things I pray the most that my baby finds peace and comfort around him that he can one day trust that he can be by himself without anything bad happening to him.  Post traumatic stress syndrome can last a lifetime but I pray that as time goes by he is able to get past his insecurities and lead a normal life or as close to normal as can be. Alex has a lot to overcome... A brain injury alone on top of the PTSD is going to take awhile.  This is where my faith in God comes in full swing because I truly believe that WITH HIM ALL THINGS ARE POSSIBLE.  I also know that He does things on his own time... not mine.  He isn't finished with Alex Michael yet, he is using him as a vessel to bring people closer to HIM.  John 11:4 When he heard this, Jesus said, "This sickness will not end in death.  No, it is for God's glory so that God's Son may be glorified through it." 

The videos below are from therapy today.  Since he has been walking so good with his cane around the house we were curious how he would do on the treadmill.  It's been awhile since he has been on the treadmill.... still an amazing site for me to see... THANK YOU GOD!

 Another thing we take for granted......... being able to walk backwards.... certainly not an easy task for Alex and he still has a good way to go before he achieves this task without hesitation  since he still has difficulty with that left side neglect.

I still don't have any answers on the x-ray ordeal so I need to make some phone calls this week!  We do have GREAT NEWS .... Alex has been approved to receive an adaptive bike from a non profit organization and we go for the fitting on Friday at Wolfson's Childrens Hospital!  I envision it to look something like this:


 I can't wait to ride our bikes in the neighborhood!!  I truly feel like this is a HUGE blessing and can only strengthen Alex physically as well as give him another boost of confidence in returning to normal..... whatever normal can be for Alex.

Alex continues to improve  and there will be a day when we are on the upside both Physically and Mentally.... all together moving forward in both directions.  For now we will take one day at a time, each new obstacle head on as it arises with a bounce in our step, a smile on our face and laughter in our hearts.  The past is the past... I cannot change it and I can't get a redo so I will grab this bull by the horns and continue to make light of the cards that have been dealt and make the best with the precious life that was SAVED BY THE GRACE OF GOD.   Life is all about how you handle Plan B.... nothing but sunshine, giggles and rainbows for me from here on out.  Staying positive, moving forward and not looking back!

PEACE~LOVE~N~THUMBS UP!
 LISA