On January 6th, 2010 Alex suffered a gunshot wound to the head...given 3 HOURS TO LIVE ....this is our story of survival and how God continues to work in and through our lives!

Friday, May 28, 2010

Dr visit good on base... all is good to go for BOTOX injections!

Today was one of those days!  Always planning to be at my destination on time... never happens!  Got everyone loaded in the car... Nick also had dr appt on base for his knee.  His appt at 9:45... Alex 10:00... we got there at 10:00... not what I had envisioned but as close as I was going to get.  Nick called to let them know we were running late and that he and Alex were on their way.  About 10 minutes goes by and I get a phone call from someone ... some case manager on the base... telling me I should not be calling the central appt line to make Alex's appts that I should be calling this other number so that he would be seen by a doctor and not a nurse practicioner....would have been nice to have been notified prior... I have a million things going on in my life with doctor appts every week with different doctors for different things going on... I can't keep my life straight to save me!  She was just trying to help but none the less... set my day in motion for meltdown.... which seems to be happening more frequent these days, lol.

Get to the base, they are awesome, know us when we walk in.. get us squared away.. Nick goes to his appt, I take Alex to his.  Doc comes in we look over the sheets to be filled out for pre surgery sedation for the Botox injections...he will be put to sleep as it will be like 20 shots in his left arm and leg and he is hyper sensitive to touch.  He has been put to sleep ummmm I don't know how many times now for different surgeries so I am not quite sure as to why we are having to do this.... but Ok I will follow orders and do what we need to do so Alex can have this procedure.  I didn't want a day off anyways right... I love taking Alex to the doctor, it's become part of our weekly routine, lol.  I ask him to look over Alex's left ankle as it seems more swollen since he has been walking every day.  Long story short... we went down to get xray... "can I have your ID"... (he was wanting Alex's military ID)... well.. I have no idea where it is.. haven't seen it since this happened.  So I reply " We don't have it"... "Alex was shot in the head in January and I haven't seen it since this happened"... hold please ... as he walks away to converse with someone else about my situation.... "Mam, you will have to go upstairs to Tricare and get an eligibility form or we won't be able to xray him"... are u kidding meeeeeeeeeeeeeeeeeeeeeeee?  Down the hall we go, around the corner, up the elevator to the Tricare office we go....which by the way is NOT wheelchair friendly.  Oh wait... we have to take a number and sit and wait to be called... SERIOUSLY!  10 minutes in a 3 X 5 room with Alex is not fun for meeeeee, trust me.  so we wait... finally called to room 2... "Xray sent us up here to get a Tricare Eligibility form so that they can xray Alex"... "Mam, can I have his ID card?"...."We don't have an ID card that's why we are up here".... " Ooooh, I am sorry they shouldn't have sent you here, you should have gone to the business office"....... AAAAAAAAAAAAAAAAAAAAAAAAAAHHHHH.... get me outta here!!!  I thought I was really going to meltdown in her office but was able to refrain for the time being. Count to 10... breathe.  I felt like every which way I was turning today... I was getting kicked in the face. Then just as you think this world has noone but mean people in it.... this sweet angel of a lady helped me out.  Once I explained what was going on, she was EXTREMELY nice and went way out of her way to help this crazy lady in front of her in distress, lol.  She called back down to xray and said " I have Alex Ross up here, he doesn't have his ID card but can't he just give you the sponsor number, date of birth and other pertinent information?"....blah blah blah... chat chat chat....  "Miss Dillard, you can go downstairs now, speak to so and so.... you should be fine"..... Basically that was a wasted trip, right?!  Really....we just wasted 30 minutes of our precious time... and yes I said precious time, because every second of our time is precious these days!  Back downstairs, round the corner... xray.  You think they got what they needed on the first try of xrays ?  With the foot that he is hypersensitive to touch????? NOOOOOOOT!  Here we go.. let's try this again... using sand bags and suck to prop his foot this way and that way....with him asking a million questions of what is going on and what are those things and these things and can we leave  now.... aaaaaaaaaaaahhhhhhh, finally now we can goooooooooooooooo.  We aren't waiting for results, been here long enough.... we left my number... call us when the doc gets a peek at em.  We leave there, head to the exchange to get something to eat and then to look around.  Didn't even get off of the base before I got a phone call regarding the paperwork that I had left for the doctor to fill out EFMP... EMFP something like that.  I have been going round and round with these people telling me that Alex does not qualify.... Raymond says that he does ... one end doesn't know what the other end knows... I just want all these people to get on the right page!  ALL I WANT IS FOR US TO BE ABLE TO GET ME SOME ASSISTANCE IN THIS HOUSE WITH ALEX!  Meltdown began!  Alex has to qualify for EFMP to get a grade?.... The grade qualifies him for some type of assistance?  I don't know all the logistics.... I don't want to know... i just want someone to help me get someone here to help me during the week so that I don't go coo coo for coa coa puffs!  I am stretching myself very very thin and Alex won't let JUST anyone bath him or take him to the bathroom.  It has to be a nurse or nursing assistant... understood ... he doesn't want someone that he is going to see on a regular basis... at his weakest and in the buff.  I get that!  Soooooooo, it makes it hard for me because there is only one me.  I can't afford to pay someone to come in so we need to get this paperwork filled out and off to qualify for Tricare to cover this for me!  The doctor didn't want to fill it out if we don't qualify... OMG!  Of course the lady we need to talk to is ON VACATION till Tuesday... let's see how long this takes for us to  get the paperwork in and how long till I get someone approved to come and help... HECK HE WILL BE WALKING BY THEN!  Anyway... I lost it on the way home.. of which I hate because I don't want Alex to see me cry, nor do I want Nick to see me cry.... I am the mom... I gotta stay strong and positive.... well today the straw broke and I hated that it was in front of my boys.    At one point Alex was asking me 500 questions in a row, when I was on the phone with the lady telling me we didn't qualify and I answered him with a NO... which always leads to another question "why?".... I turned around and screamed like the freaking exorcists, lol...." BECAUSE I'M THE MOM THAT'S WHY AND I NEED YOU TO QUIT ASKING ME QUESTIONS RIGHT NOW!"  Tears streeeeeeeeeeeeeeeeeaming down my face, boo hooing.... he looks at me and says in the sweetest, lowest voice.... "Ok mom,I'm sorry.... just please don't ever freak out on me like that again"... hahahahahahaha... I lost it and thought I really went crazy for a second.... tears streaming and cracking up, laughing harder than I have laughed in a looooooooong time, lol!  He then looks at me and says... "Why is that funny?".... that just made me laugh harder hahahaha.   Soooo my meltdown had a happy ending.... thanks to Alex, lol!

Our overall visit today was to get clearance for the botox injections, to get xray of ankle - which by the way is ok... no fracture, just sprain.... paperwork filled out for EFMP, not sure what will happen with that - over it..... Nick had his knee looked at, he got a knee brace which is what he wanted.  Long day on base... glad the weekend is here with no dr appts... just rest and relaxation! 

Taking myself back to day one today and thanking God that I have the frustrations I have because that means I have ALEX MICHAEL ROSS ... ALIVE!  And I wouldn't want it any other way!  Sooo, THANK YOU GOD FOR ONE MORE DAY WITH MY HANDSOME BOY! 

PEACE OUT.... AND GOOD NIGHT!

for those travelling this weekend... buckle up, drive safe... enjoy your long weekend!  spend some quality time with your family... you can't get back today once it is gone! :0)

PEACE~LOVE~N~THUMBS UP!

DR APPTS ON BASE TODAY

Fell asleep last night, super tired... gotta run to dr appts on base today... all is good here... I was told that ALEX HAD HIS BEST DAY EVER AT THERAPY YESTERDAY... YAAAAAAAAAY!  No strikes or time out, lol! 

Will blog later today...we went to Ed White Trinity game last night... was great for Alex to get out and around his friends!  Sooo many people were excited to see him... I love seeing his face light up and smile!

Later....

PEACE~LOVE~N~THUMBS UP!

Lisa

Wednesday, May 26, 2010

THE GUSH IS GOOD, LOL!

Took Alex to Dr Vitarbo today and they checked the setting and he is where he is supposed to be.  Apparently when he sleeps the fluid may shift or settle and once he is up and around for awhile it should drain properly which it wasn't as gushy this afternoon as it was yesterday morning.  We just have to monitor it.... she asked him at one point " Does it feel hot sometimes Alex?"... I was thinking... WHAT THE HECK? HOT? LIKE AS IN BURN HOT? Is that dang thing gonna burn up in his head, lol?????  Just something else for me to worry about now ha!  GREAT!

He has been great all day.... no signs of headaches.... just chillaxin on the sofa with his friend Kailee.  She and her mom Lori came over for a visit today and bless Miss Lori's heart.... we got to workin round here and got alot accomplished today.  Kailee and Brooks kept Alex's attention elsewhere while we did laundry, changed sheets, mopping, cleaned bathrooms, closets etc.  THANK YOU LADIES....it's the little things in life that mean the most in times like these!  You two were a huge help today and I really really appreciate it!  My momma thanks you too, hee hee.... she offered too I just didn't want her to have to drive from Fernandina to help me :0)

Mr. Bill Wilson of Builders Care,  http://www.builderscare.org/cms/, is coming out tomorrow to assess the renovation situation tomorrow...YAY!  Thank you, thank you, thank you Jaguars for your generous contribution to Builders Care to help Alex in his recovery!  WE LOVE YA'LL!  Very excited to be making accomodations for Alex in the house so that he can be a little more independent of ME, lol! 

Master Alex is fast asleep so I am going to close for now, I just wanted to update everyone on his doctor visit and the gush!  ALL IS GOOD... THANK YOU GOD!

PEACE~LOVE`N`THUMBS UP!

Lisa


ps.... HAPPY HAPPY BIRTHDAY TO MY POP IN LAW... LARRY DILLARD... I LOVE YOU PA!  Hope you had an awesome day today... can't wait to celebrate with you on Sunday!  xoxoxo

WOKE UP GUSHY.... ANXIETY OVERLOAD

Yesterday was a little off kilter... our day started off a little whacky as Alex woke up with the right side of his head, gushy is the best way to describe it.  Dr. Vitarbo actually came up with that description when explaining that I would know when the shunt needed to be adjusted.... his head would seem... gushy.  Gushy is an understatement... aaaaaaaaaaaahhhhh freak out much!  I tried to play it off, lol... Alex ...well... anxiety set in.  Off to day therapy we go.  Alex had not so much of a good day.... 3 strikes...time out... anxiety of the mornings events played a big part of how his day went.  As you all know I have spoken many times of how one thing going different.... one thing can change a whole day of events and actions in our world!  He called me several times throughout the day.... he told some fibs at therapy... making up stories.... just off kilter day for Alex.  Picked him up, had a mini conference with Miss Katie... our saving grace... she and Miss Mona are Alex's fav's. Alex really loves these 2 precious ladies and I appreciate them, their compassion, patience and understanding with Alex.  It takes special people to do the job that they do everyday .... dealing with brain injuries... emotions, behavior and such and Alex even told Miss Mona yesterday .... "Miss Mona... I don't think I could do your job".  She said "why Alex?".... He said.." I don't know that I could take grown women/men to the bathroom and wipe them"... hahahahaha... LOVE ALEX!  Anyways.... Picked Alex up and headed to Brooks Rehab to get a prescription and visited with our nurses.  He wanted to put his brace on and walk up to them.  WOW... he is getting so much better and doesn't have to lean on me so much walking these days!  He is still off balance, has to work on putting more pressure on that left leg... but he is coming along Rapidly!  They were all so impressed and loved seeing him up and walking so GOOD!  It made him feel like a million bucks to see their faces light up with excitement and tell him how proud they were of him!  THANK YOU LADIES FOR PUTTING SOME SUNSHINE IN HIS EYES YESTERDAY!  We left there and met Viki and Carly for dinner at Chili's :0)  I was exhausted by the time we got home, I cleaned up, bathed him.... just wanted to crawl in bed and snooze....

He ended up sleeping through the NITE... OMG... I actually woke up at 5:30, freaked out... had to look at the monitor, turn it up and make sure I could hear him breathing!  Scared me, lol!  Well, he was still sleeping!  I got up an hour later... showered... went in to get him up at 7:00... groggy.. wanted to sleep.... let him sleep till 7:40 and he still didn't want to get up!  He seems groggy today... still gushy... have appt at 12:30 today with Vitarbo.. hope nothing is going on just a routine adjustment to the shunt.  Just scary... for us both as we are not used to this sorta thing.    I will post later and let you know what is the latest and greatest with our visit!

Here is another video to bring a smile to your day!



PEACE~LOVE~N~THUMBS UP!

Lisa

Tuesday, May 25, 2010

Back to Routine! Results, Results ...Results!

Alex started out his week back to the grind and had some improvements today especially with occupational therapy!  He said that he learned how to move his left shoulder today...he showed me and I must say I am impressed!  He has also been able to BEND his left knee sometimes lately!  Again.. IMPRESSED!  Results are popping up... baby steps... by no means is he walking on his own or opening that left hand just yet... but baby step results are happening!  Hoping to see some cognitive results soon with his filtering what he says... instead of Ready, Fire, Aim.... we need to get him back to Ready, Aim, Fire...with his words!  He just says what immediately comes to mind and has been throwing his friends under the bus left and right lately with things said and done in the past!  It's funny but then again.. it's not so much fun for his friends!  Soooo... I say this to anyone coming in contact with Alex.... if you don't want it repeated... don't say it around him... and hopefully for your sake... you and he share no secrets because he has been coming clean on alot of things, lol.  I need to get him to where cognitively.... he can be by himself.  He is scared to be in a room by himself..... part of it being that if he were to need something he is stuck and can't do for himself.  I need him to be ok for even just 30 minutes at a time...in his room watching tv.  He needs to learn to self soothe.... and to relearn the word NO!  He just will not take NO for an answer and will fight till the end... I have to walk away or just ignore him ( and that can be VERY hard at times).... my little 4 year old Alex... we still have such a long road ahead of us!  BABY STEPS!

Soooo today was a great day... he was super excited and felt like he actually made progress today.  On the way home we visited our long time friends THE HAWKINS... (Charles and Cameron went with us this past weekend to the Sharks game)... I really really enjoyed that as I was actually able to have some adult conversation with my friend while Alex was distracted with his friends!  I was able to breathe, inhale and relax without having to hop around like a puppet every 10 minutes!  Thank you my friends for that breath of fresh air.... much needed as well as I loved seeing him laugh and cut up with his friends!  He threw them under the bus a couple of times ....... however......what is said at the Hawkins....stays at the Hawkins, lol!  It was all in good fun and it was great to see Alex, the old Alex, back in the swing of being his silly crazy self!

Found this on computer at home and wanted to share... it should make you smile! :0)



PEACE~LOVE~N~THUMBS UP!

Lisa

Sunday, May 23, 2010

GREAT WEEKEND!!




We had a great weekend with Alex!  Saturday night he wanted to go eat at Hooter's and then head out to the Shark's game!  He wanted to take his friends so Cameron, Charles and Collin joined in our festivities as the night began.  We started out at Hooter's.... here are some pics from there....



Picture speaks for itself, lol





















Alex making his crazy funny faces... he cracks me up!















Collin and Ryan... two of Alex's biggest fans!

Alex was a hotmess at Hooters.... and flirting he was, lol!  He got one of the waitresses, Amber, to give him a kiss on the cheek and you know it.... He turned his head and got her right square on the lips!  I thought she was going to flip out, lol.  All in good fun... she couldn't believe he got her... but he did and he was dang sure proud of it too!  There was another point where we were getting ready to leave and there was a different waitress waiting on her food.... her behind was kind of by his face.... he was acting like he was getting ready to smack her behind!  I thought I was going to FLIP OUT, lol.... he had his hand right there like he was going to just pop her on the butt... I think I would have fainted, lol.... THIS IS something the old Alex would definitely do, lol!  I was just praying he wouldn't for my sake!  From Hooter's we went to the Sharks Arena Football game... for a great time!  Here are some pictures below.....






















Sarah and Brooks

Brooks, Cameron, Alex, Collin & Charles


Alex and Mr Larry Payne of the Sharks!  Thank you so much Larry.... you made this all possible and we appreciate your generosity and compassion you have shown for Alex.  He LOVES the jersey you gave him... we will be back to have Dallas Baker sign it next home game!  We had a great time thanks to you and we can't wait to come back again!

Alex of course ... ate like there was no tomorrow at the game, lol!  I think his friends thought he was crazy too!  Everytime they turned around he was eating or wanting to eat, ha ha!  He was so wound up last night that he did NOT GO to sleep until 3:00am!  I am beat... had a shower to attend today so I didn't get to nap.  He just went to bed so I need to get my butt in the bed also so that I can catch up on my sleep. 

Overall it was a great weekend... oh yeah.. real quick funny story..... he wanted to sleep NAKED Friday night... has been asking to do this since he was at Brooks Rehab.  Well, I said ok.. thinking it would be easier on me in the middle of the night right... when he has to pee... so I agreed.  Naturally nothing EVER works out as I plan and he was calling me in his room... saying he had to pee.... so I go in there and he had alread peed ALL OVER ... EVERYWHERE, lol!  Well ok, it wasn't funny at that moment because it was like 3:30 am and who in the world wants to fiddle with all of that as you are half asleep?!  So I see he is all wet and I am like.. "Alex... you already peed all over yourself what happened?"... He said "Mom, you were just in here with the jug and I was peeing in it".... I said, "NOOOOO Alex I was not... I just walked in here...He said.."Mom, I swear you were just here and I was peeing in the jug".... HE WAS DREAAAAAAAAAAMING! hahahahahaahhaa..... He must have been peeing like a fountain because it was like a RIVER....ALOT and EVERYWHERE.....Nice... that's what I get for agreeing to let him sleep Naked trying to make it easier on myself!  There are no shortcuts in life... lesson learned, lol!  Needless to say... he has had clothes on every night since and will continue to do so no matter how hard it is to get those clothes off in the middle of the night! :0)

Weather doesn't look to good this week... rainy..??? Looking for some sunshine to brighten my days!!

Heading off to bed... HAVE A GREAT MONDAY!  And do me a favor... SMILE.... it confuses people, lol!!

PEACE~LOVE~N~THUMBS UP!

Lisa


Friday, May 21, 2010

SEE IT TO BELIEVE IT!




I know that last nights current events with the girls and the accident may have left many of you questioning your faith and asking God..."Why".  All I know to say in response to this is that...... even though this is a horrible tragedy... God has a plan for each and every one of us and I don't have the answer...I can say I think he may have needed another Angel in Heaven?....... I can only offer my condolences and prayers but know that God is very real and I wanted you to see the above video to confirm that!  I am very blessed and fortunate that God spared Alex's life and he has an amazing story to tell and share the miracles that God has performed in his life.  I am at loss for words and my heart aches for the families involved in yesterday's crash.  I have been very emotional today, crying at the drop of a hat and even though I do not know these girls..... I can relate to their mom's and all of those feelings that I had that night on January 6th come rushing back at me FULL FORCE, just like it was yesterday and I wouldn't want that for anyone!  Not even for a second!    Tears pouring as I write this... to the mom's... and dad's.... I am sooooo sorry for your loss and I am deeply saddened that you are having to go thru this.  Even though I was given my boy back.... I FEEL your loss and your pain and I am praying for you.... praying hard for strength, peace, comfort, energy, understanding, love and support .  I have had high high's and low low's throughout my journey with Alex.  This video is one of my high highs and I wanted to share that with all of  you.  Seeing is believing and Alex Michael Ross is a MIRACLE of God and he will soon be on his feet again... BY HIMSELF!  Continuing to pray for Heather and Kelley.... I am not sure of their status... but I am praying ....HARD! 

Hooters then Sharks game tomorrow with Alex and a couple of HIS friends this time :0)  Cameron, Charles and Collin.... THIS WILL BE GOOD FOR HIM!  Thanks for coming!

PEACE~LOVE~N~THUMBS UP!

Lisa

PRAYERS NEEDED!

Very emotional this morning.... my heart goes out to the families involved.... I know what they are going thru and I want my prayer warriors on this as soon as possible!

http://www.firstcoastnews.com/news/local/news-article.aspx?storyid=156346&catid=3

http://www.news4jax.com/news/23626610/detail.html

Heather Beninati & Courtney Hendrix were in a horrible car accident last night and air lifted to Shands where Alex was taken care of.  These two girls, ages 16 & 17 went to school with Brooks.  The car that they hit head on is a friend of  one of my friends, her name is Kellie Beal and she had a 14 year old passenger with her and I'm not sure of anyone's status at this point.  I have seen on Facebook that Courtney Hendrix has passed away and if this is correct....LORD PLEASE WRAP YOUR ARMS AROUND THIS FAMILY!  If I can offer emotional support to any of these families involved... someone please let me know!  Although I do not know any of the people involved, this has really touched my heart and I want my prayer warriors to get on this as soon as possible because THIS IS GOING TO BE HARD for everyone involved as well as friends and family.

I had a mini melt down last night after I got my quiet time in my bath ... I apologize for not updating you for yesterday.  It wasn't Alex being Alexander... I just felt like I was being pulled in a million different directions and sometimes wish I had 8 clones of myself to get all that I needed to get done.  I need a personal babysitter for Alex 24-7... one that he is content with lol.  It doesn't matter who is here... he still wants MOM and there just isn't enough of me to go around sometimes for everyone to get what they need.  My memory is shot... I can't remember anything these days... hoping that alzheimer's isn't setting in already or that it isn't anything more serious.  We are off of therapy on Fridays so today I am going to try to get things done around here that need to be squared away....maybe that will make me feel better, lol

PLEASE PRAY FOR ALL THESE FAMILIES INVOLVED..... I cry just thinking about what each and everyone who loves these people is feeling right now.  It's stories like this and the one about the baseball player who just passed away Andrew Cohn, http://www.news4jax.com/news/23619823/detail.html , that make me get on my knees and thank God for one more day with my handsome boy!  It confirms that miracle that God has performed and makes me 100 times more thankful for my many blessings that have come out of this tragedy.  Again... count your blessings and then count them again!  THINGS CAN ALWAYS BE WORSE..... even in my current situation!

Again, if any of you personally know these families and if I can provide any type of emotional support or encouragement... please put me in contact with them.  I thank you for your prayers, love and support for me, Alex, Chad and these families!

PEACE~LOVE~N~THUMBS UP!

Lisa

Thursday, May 20, 2010

BUMP IN THE ROAD... DETOUR.... Aweee I love the scenic route...thanks! :0/

Soooo today was the BIG DAY!  The day the trach is coming out.... urrrrrrrrrrrrrrrrrrrrch......DETOUR!  Of course.... absolutely ..... we love to take the scenic route...right?  Ummm, not so much, lol!  We got all geared up today for our visit with Dr. Beck at 2:00 pm the trach was coming out.  We get to the office, they call us back and we get to meet with Amy, Dr. Becks assistant.  LOVE HER!  She has a great disposition with Alex and they joke back and forth constantly....she just has an amazing way with him that I sooo appreciate as she lightens the mood and makes it not so stressful for him.  Anything out of routine makes for a crazy day and more likely for Alexander to show himself.  However.... we get in the room and she tells him she needs to either go down his nose or throat so that she can get a good look at his airway and see what's going on because Dr. Beck can't make a decision without seeing a good picture of the airway.  He's telling her that he is fine, he has slept with the cap on his trach and it needs to come OUT, lol!  She left to go and get the camera scope thing- a -ma -jiggy and he looks at me and says... "MOM.... put my shoe on please... it's about to get EXTREME UP IN HERE".... hahahahaha.... just his facial expression and words cracked me and Nick up!  She walks back in with the scope and he starts singing..."Buffalo Soldier" by Bob Marley.... random much?  He was in great spirits.... she tried to go in his throat but he kept gagging and she couldn't get a good read sooooooo DOWN THE NOSE she goes.... didn't look too comfortable... however only lasted like all of 10 seconds!  The whole time she is doing this.... nick and I get to see on the monitor down his nose, throat and into where his vocal chords are.  The area appears to be more swollen and the area that had originally been lasered seems to have had the scar tissue build back up... therefore lessening the opening of  the airway.  His left vocal chord is paralyzed and probably always will be, thus why his voice is not to it's normal self as it was before the incident.  Dr. Beck came in and this is what was told to me:

1.  You can take out the trach today.... however, should he get sick and the swelling in his throat increase... it may close his airway and you will have to have the trach reinserted.  UMMMM NO THANK YOU!
2.  You can wait weeks and think it over... see if swelling goes down with acid refulx meds.  POSSIBLY...
3.  Schedule surgery.... even if you go with option 2... surgery is inevitable at some point.  OK... WHY PUT OFF TILL  TOMORROW WHAT WE CAN ACCOMPLISH TODAY... BOOK EM DANO! :0)

Even if I wait a couple of weeks to see if the swelling goes down... at some point he will have to have the surgery... it is INEVITABLE.  This surgery will more aggressive and intense, with Dr. Beck actually cutting out tissue... not just lasering... CUTTING... out the tissue to make a bigger airway.  Side effects... may be hard to swallow thin liquids for awhile... no guzzling gatorade... water..tea and such.  Voice may be a little weaker... or about the same and never improve.... this is a NO BRAINER... let's see... worry about voice or BREATHING, lol.  I'll take breathing for $1,000 Alex Trebek, lol!  Alex was getting a little anxious saying..."Don't listen to her... it's my body... I don't want surgery... let's just wait 3 weeks"  My response... " I'm the parent... that's why", lol.  We talked about it... and he is now on board with the plan as he himself just wants to do what we need to do as soon as possible to be back on the road to recovery!  Honestly... why put it off?  If we are going to need it... let's just get it over with.  why wait 3 weeks for surgery...then add another 4-6 weeks on top of that till it comes out.... JUST DO IT and let's move on!  soooooo, his next surgery is scheduled for June 2nd... if something opens up on May 26th we will slide in there... otherwise, June 2nd at Memorial.  He may or may not stay overnight depending on his recovery and how he does with the surgery.  I am very proud of him as he was still in high spirits when we left there and his attitude has been nothing but cracking jokes and calling people and telling them....now bare with me... I am just going verbatum as he talks on the phone in the backseat while I drive.   "Hey.. you know how I went to the doctor to get my trach out today.... well guess what they did to me.... NOTHING.... THEY DID NOTHING... they left the damned trach in... the bitches"  "So now I have another surgery on June 2nd, something about they have to cut some tissue out and make my airway bigger.... he said it was going to be very intense.... but I'll be getting Dilaudid... yeah baby...bring on the good drugs"... hahahahahahaha.  HE IS A TRIP!  So as it looks now... he will have the trach till atleast around July 14th.... give or take a week or two maybe before the 14th.

How do I feel about it?  Sad I guess... for him.  He was really looking forward to getting it out and being able to move past that part.  A little more freedom.... while the trach is in... he really can't be out of my sight for any length of time, so wherever he goes... I go.  We have come so far though in such a very short time that I can't let this get us down.  I have to stay positive and focus on ALL OF THE AWESOME other things going on in our lives right now!  I am fortunate enough that God is providing and I can stay out of work to take care of Alex for the time being..... We have a new house, a roof over our head, food on the table, electricity, cable..... Alex is walking more and more at therapy, getting great cognitive and occupational therapy as well.... first and foremost...ALEX MICHAEL ROSS IS ALIVE...THANK YOU GOD!  There are waaaaaaaaaaaaaaay too many positives in our lives right now to let one little thing like this set us back.  Just another bump in the road... another rollercoaster ride....WE GOT THIS....RIGHT?  Look where we started.... look how far we have come.... GOD IS STILL RIGHT BESIDE ME.... Me, Alex and JC... we got this!  All in God's time... not ours... all part of the great big plan!  What I remind myself daily is that.... it could always be worse!  I would much rather be going thru this than not to have Alex here with us at all!  THANK YOU GOD FOR ONE MORE DAY WITH MY HANDSOME BOY!

I do ask that you keep us in your prayers as Chad will find out next week... hopefully... what they are going to do about him and his position as his dept has been depleted.  Prayer warriors... Please pray that Chad is moved to another dept .... here in jacksonville and that his position is either lateral or a promotion.  I guess beggars can't be choosers and any job is better than no job... BUT... since we are praying... let's just be specific, lol!  Our finances just need to stay the same so that I am able to be here with Alex and do what needs to be done.  I also need his transition to be here in Jacksonville as this is where Alex needs to be to continue his treatment.  I have a peace about this and really feel that wherever they move him.. and yes I just don't think he will be laid off... I feel like this will be  a step up for him to bigger and better things.  I have felt this since he came home and told me about it... I have prayed and I just have a peace that is inexplainable... only by God :0)  However... it is still scary for Chad as he is there in it everyday and it has to be stressful not knowing what is going to be when you know you have a family that you know you are the sole provider for.... but Chad just know boo.... WE GOT THIS!  Prayer warriors.. you haven't let me down yet and your prayers have always been answered.... for this... I THANK YOU!  You all play a very important part in Alex's recovery as well and we couldn't do it without ya!

Tomorrow I get some fun in the sun and relaxation with one of my old friends Miss Angie!  I'm so excited... something to look forward to and relieve some stress from today's events.  I was gong to do Alex's coming home party at end of June but now with the whole trach thing... I'm not so sure... I may want to wait until end of July!  I want him to be able to enjoy it and LAST more than 30 minutes and I'm just not so sure he would with surgery two weeks prior to when i was planning it.  I am also looking for ideas as to where to have it.... it needs to be a pretty large area so people can meet and greet him..... if any one has any ideas.... please do share!  Party planners.... I need your help, lol!

It's 12:15am... need to get some shut eye.... mornings come all to quick for me!

PEACE~LOVE~N~THUMBS UP!

LISA

Tuesday, May 18, 2010

ALEXANDER'S REPORT :0)

Alexander apparently has been disruptive during group cognitive therapies and seemingly faking stomach aches, headaches etc to get out of such therapies.  From what I get out of Alex... he says that yesterday he REALLY had to go to the bathroom and was told to wait.... well... we all know that Alex has NO CONCEPT of time and 2 minutes seems like 5 hours to him soooooo what does he do?  He tells her to go find someone else... she replies...No, you will have to wait a minute.... Alexander tells her he is going to find someone else then.... and goes strolling down the hall yelling "Miss Mooooona, I have to go to the bathroom" Miss Mona....where are you?"  MONAAAAAAAAA.....Now let me paint you a picture of this... there are rooms on each side of the hallway and OTHER patients are in therapy sessions while my child is acting a fool up and down the hallway yelling for Mona to take him to the bathroom, lol!  At some point in their conversation he tells her " If I poop or pee in my pants ya'll ain't gettin another dime of my money!".....   just what every mother dreams of hearing their child carry on a conversation of this sort with another ADULT!  It's funny because I can just see him saying that ...but it's not acceptable and they came up with a behavior plan he has to follow. 

First of all... he isn't allowed to just leave and go strolling
Second of all...  he has no concept of time
Third... in his defense with the bathroom situation... he does have an appt with the urologist on the 8th of June because the brain may be misfiring with being able to hold it or there may be triggering something making him think he has to go??? I don't know but he is getting checked nonetheless as the bathroom visits are more frequent than not and he is still waking up in the middle of the night to pee.  I was also told that he places cups of water at the edge of the table to where they will fall off.... causing disruption in class and they say he is doing it purposefully... Alex says.. Half the time he can't tell whether its fully on the table or on the edge because of his eye sight and depth perception... this is what he said to me...."Why would I do that on purpose when both times it happened the damn water fell on ME... if I wanted water in my lap I would just pour it on me". I had no answer for that!


All I know to say is that... you will get farther with Alex doing positive reinforcement and so I mentioned this to some of his therapists and we will see about giving him some goals to reach and then maybe he can move up to another therapy group.
 
I  got a phone call from there today around 1:15pm, while I was meeting my girlfriends Tina and Lorraine for lunch at the Avenues Mall.  I saw the call come across as Dr. Vasquez and my stomach cringed... especially after our conversation from earlier this morning.  So I answer the phone thinking the worst and already on the defense, lol.  It's Dr. Vasquez:
 
"Hi Lisa, It's Dr. Vasquez.  Alex wanted me to call you and tell you he is having a BAD day."  There it was...THE BOMBSHELL!  OMG.... ARE YOU KIDDING ME!  She continues....
"But he's really not, he is actually having a great day!"... ALEX MICHAEL ROSS... you little prankster!  Such a sigh of relief over me, hahahahaha.  "He has had a major accomplishment today and he wanted me to call you so he could tell you about it.....Here he is".....
"Hey Mom"...." I stood up to pee twice today"..... you guys have no idea how big this is!  Normally we have the urinal.... standing up to pee is good and getting back to normal in the routine of things.
I respond.... "Alex... that is awesome...I am so proud of you!!!"  "Was it hard?"  "Did you pee on yourself?"... don't you just love the questions, lol!  I feel like a mom of a 2 year old little boy learning to use the potty for the first time! 
 
Soooo... all in all... he had a much better day and really tried to focus today.  We talked about putting him back on his ADHD meds...thinking maybe this will help take away all the distractions... peeing, water...etc and maybe help him focus more....Alex seems to think he can do this without it and says that he will show us he can focus without it. Soooo, we made an agreement that we would see how well he focuses this week and see if he really can.... and I really do hope that he can....the brain is a quirky thing and who knows... if he believes it... maybe it will be!
 
TOMORROW THE TRACH COMES OUT AT 2PM!  HALLELUJAH!  OOooooooh how I have looked forward to this day!  I WILL NOT MISS IT, LOL! One step closer to being fully recovered!
 
Exhausted today... I haven't been falling asleep easily and have only been getting like 4 hours of sleep with Alex waking up so I am going to jump in the tub, see if I can relax and go NITE NITE.
 
See you all tomorrow with the great report of the trach being gone.... FOOOORRRREEEEVVVEEERRR, lol!
 
PEACE~LOVE~N~THUMBS UP!
 
Lisa
 
 
 
 

Yucky Rainy Day!

Back to the grinding stone today.... actually a somewhat peaceful morning at home, getting ready and out the door... our usual routine with no dilemmas ....thank you God!  We actually left a little early, Alex wanted some cini minnies at BK... we got to Brooks by 8:30am ...TOO EARLY... he got a little anxious when he realized no one was there.... even though I sat with him... for some reason he became all RAINMAN on me with a million questions... all over the place... very anxious... nervous... wanted me to stay with him today... just weird.  Originally we had planned to go to a luncheon at Shands but none of our nurses that took care of him were going to be there so I didn't want to pull him out of productive therapy to sit with people we didn't know (no offense to anyone that went that we missed)... he just has had sooooo many appointments that we haven't gotten a FULL WEEK of therapy yet, I don't think!  So I left thinking I was going to pick him up at 11am.. and so did he.  I got a phone call... no nurses I knew were going to be there so I decided to come back home and get some house work done while he was away!  MISSION ACCOMPLISHED!  Of course, I called Brooks to let them know he would now be staying all day... and naturally he called me back ....HOWEVER... was ok with staying... just had his questions of who, what, where and why not kinda thing.  So I go back to pick him up.... he is all excited to show me how far he walked today with his new shoes and brace... with assistance of therapist of course and I WAS VERY IMPRESSED!  I'm telling you now if he keeps that up... he will be back to walking in no time!  Miss Debbie brought us dinner...POPEYES at Mr. Alex's request:0).... THANK YOU.. Travis brought Amelia by to see Alex because she can now say his name... funny she was scared to death of him the whole time she was here, lol.  So my company leaves and I check my voicemails... A CALL FROM DAY TREATMENT... His psychologist.... apparently Alexander showed himself at therapy today!  Well because it was so late... I didn't have a chance to call her back so this is what I have to look forward to first thing tomorrow as we walk in... PARENT TEACHER CONFERENCE... ugh!  Can't wait to fill you all in on this one... not looking forward to hearing how bad he was today:0(  Can I blame it on the rain?  

Heading off to bed... early rise in the morning.... it will be cereal for Alex until his behavior improves at school.  Consequences and guidelines.... I'm putting my armor on tonight and getting ready for battle tomorrow!  Alexander.... you will be going home for good this go round!

Positive thought for tonight... TRACH COMES OUT WEDNESDAY! Yay... IIIIIIIII have something to look forward too, lol!

PEACE~LOVE~N~THUMBS UP!

This is the sweet Alex I am going to picture as I lay my head on my pillow!
Lisa

Sunday, May 16, 2010

WHAT A WEEKEND!

Saturday morning Chad and I started out our day 10am with a couples massage at http://www.taylorlanedayspa.net/page/page/2613118.htm
compliments of Meghan Roberson Haywood and George Haywood. WOW WE WOWOWOWOWOW!! My massage therapist said..."Boy you really needed that huh?"....
I said... "you have NO idea!!", lol. What a way to start out our day! It was amazing and we can't wait to go back ,lol!
THANK YOU SO VERY VERY MUCH! From there...... we headed home to pick up the family to head to St. Augustine for a special lunch celebrating our first anniversary at the Columbia Restaurant http://www.columbiarestaurant.com/, if you have never been... go check it out and eat their infamous 1905 salad... well worth the trip! We met up with my friend Amber Garvey, whom I used to work with at Wachovia Settlement Services and miss dearly! She was my work BFF and I truly miss working with her and all the laughs we used to have!! Alex always manages to make a spectacle and I will always have an embarrasing story to share when we are out and about, lol! So he has to go to the bathroom and here we go... the stall was occupied and yes you guessed it... nnot a handicapped lady..... and yes he made some comments but she came right out and we slid right in! So here is our conversation once we get in the stall.....

"Hurry mom, get the jug, I'm about to piss all over myself and then you will have to take me out there with piss on my pants".


"ok, Alex, I'm going as fast as I can go"


"Mom, look at all this hair down here... damn, I need to shave it"


"Alex... please lower your voice...there are other people in here"


IN A MUCH LOUDER VOICE NOW....."MOM... I SAID did you see all this hair... I have to shave it or NO you have to shave it... but you can't cut me"


"OK ALEX"


"NO, I’M SERIOUS..YOU CAN'T CUT ME AND YOU HAVE TO SHAVE MY HAIR DOWN THERE TONIGHT"....


omg... are you kidding meeeeeeeeeeeeeee... can we get out of the bathroom any faster??  Hahahahaha I can only imagine what the ladies in the bathroom are thinking! I really wish every place had a FAMILY bathroom that he and I could just use ALONE! NO FILTER and anytime he is over stimulated.... A HUNDRED TIMES WORSE!




Alex and Brooks' and their prankster purchases in St Augustine! 




He told us a story on the way home from the Landsharks game Friday night about this one time when he was in 8th grade at Stillwell, he had a substitute teacher and naturally when the teacher asked his name ... he gave... ANDY MILONAKIS ..(if u don't know who this is google him... we were cracking up! ONLY ALEX! Alex trips me out because since all this has happened.... he is sooo honest, he tells on himself constantly, lol! Brooks helps out too not realizing that he probably shouldn't be sharing some of the stuff he shares.... for instance.... this one time on Chaffee Rd, by this neighborhood (I can't remember the name of it)...... There was a huge mud puddle ditch looking area and they decided to go mudding or thought they would drive thru it and it would be way cool... ummmm not so much... Alex finishes the story with..."Some scary dude showed up and offered to pull us out..... Lil Brian had the bat ready to swing in case he tried some crazy S%$# on us.... but he ended up being nice and got the KICK (this is what he named his suzuki sidekick) out!" Funny story... yeah... NOW... wouldn't have been then being right before all this happened we noticed his car muddy and asked him if he had been mudding in the car... "NO MOM.... the road where Ronnie and Angie live had a mud puddle and I went thru it". Brooks then chimed in and shared with us  that they had been jumping ramps in the car... I said what kind of ramps... as he explained further in detail... I realized he was talking about SEPTIC TANK hills..... you know what I'm talking about? Like in the country... people have them in their yard....ARE YOU KIDDING ME? Alex is in the backseat going.. "Brooks... we probably shouldn't be telling mom that", lol! These are the kinds of things that I would have thought would have put Alex in the hospital.... these are the crazy antics that I know my son is capable of .... daredevil that he is... running up a tree and doing a backflip...(most who know him.. have seen this trick, lol).... doing backflips off of walls... OH ALEX.... I would give anything to see you do that now!

Today we took a shot at taking him to see IRONMAN 2.... NOT!! OMG... we got in there, he had to sit in 2nd row in his wheelchair with screen up his nose, lol.. you know the seats I'm talking about.... the ones that none of us EVER want to sit in... only as a kid when we were like 4 or so, lol.... but he was ok... for about 3 minutes, lol. Then it was.."MOM... put me in the regular seat, I want to try it"... SOOOOOO, I transferred him to the regular chair, I get him situated with popcorn, drink, candy etc. ....go sit down back in my seat.... he lasted all of 5 minutes in the chair. He said he felt like he was slipping and sliding out of it... OK... BACK TO WHEELCHAIR, get him situated....popcorn, candy, drink...I go back and sit in my seat... Brooks is sitting with him..... the rest of us are a couple rows up higher. Here he goes... waving his hands and arms... OMG... I know people are getting irritated... Chad goes to see what he wants... MORE CANDY...No, here is "our" popcorn...watch the movie Alex...... 3 minutes later his hands and arms go up again.. "MOOOOOM... waving....OK I'M DONE... I unlock the wheelchair...swoop him up, he's outta here, lol.... I go to customer service desk, ask for refund for me and Alex... THANK YOU.... we got it.... we are out to the mall while the fam enjoys the movie without us :0( "Mom, I'm sorry... my stomach hurt, it was too loud, I just didn't want you to be mad at me... swear you are not mad at me"... "No Alex, I'm not mad at you, just aggravated there is a difference"..."MOM, swear that you are NOT MAD at me".. "Alex, I pinky promise I am not mad at you, I was just hoping to see the movie but you and I will go and enjoy the mall, let's go see if we can find you some new shoes for physical therapy"...(sometimes it helps to change the subject and divert from the current conversation or else RAINMAN sets in) It worked... we headed to FootLocker and he actually found some new tennis shoes that work GREAT with his brace... some Chad Johnson shoes.... and he WALKS GREAT WITH THE BRACE AND SHOES!!!! He is so excited and has had to show everyone how good he can walk (with my assistance of course) but nonetheless... HE DOES GREAT! He will be getting the hang of it in no time!!!


Overall it's been a great great weekend with lots and lots of great family time and lots of laughs with Alex!  We had a great time at the Landsharks game and look forward to going to that again!  Alex really really enjoyed himself there!!
 



THANK YOU GOD FOR ONE MORE DAY WITH MY HANDSOME BOY!

Meeting D Webb for the second time in his life.  First time was at D WEBB football camp at Ed White years ago when he first met Reggie Nelson as well!

Amanda Mullis.... All grown up... Alex used to chase her around the ballpark at Lakeshore, lol!  He looks so young compared to her!!


Alex's childhood bud... Skylar Lee... we couldn't get Alex to take a serious picture for nothing!  This was like the 5th picture I had snapped and the closest to normal , lol!

THE ALEX MICHAEL ROSS we all know and love with a die hard Landsharks fan...CRAZY KID!

Alex gives her a kiss and then asks for one in return
we missed the shot, but SLY DOG ROSS... turned his head when she kissed him on the cheek and he planted one on her lips!  This is her reaction, lol!  Look at his sly dog grin!  YOU LITTLE RASCAL!


Tomorrow day therapy ... hoping to have great reports with the new shoes and walking!!!
 
It's back to the grind for all of us.... I'm going to think positive and say that tomorrow morning is going to go smooooth sailing, lol!
 

LOOKING FORWARD TO WEDNESDAY WHEN THE TRACH COMES OUT!! YAY!!!!

HOPE YOU ALL HAVE A FANTASTIC DAY! 

Oh yeah... before I forget... pick up your copy of SPORTING NEWS ...NFL DRAFT... PAGE 33... #4 ALEX, BROOKS AND BRANDON SPIKES!! YES... how bout that!! Spikes talks about meeting Alex at Pro Day... WOW!  WE ARE BIG TIME NOW!  I bought the last two at Books A Million today, lol!

Also check out Tim Tebow's foundation page...  http://www.timtebowfoundation.org/
ALEX ON THERE TOO!!! 
 
PEACE~LOVE~N~ THUMBS UP!
 
Lisa

Friday, May 14, 2010

A DAY AT THE BEACH FOR MEEEEEE.... LOVED IT!

Sorry I didn't blog yesterday... had an awesome relaxing day with two beautiful ladies... Miss Carly and Miss Angie... thank you girlies for accompanying me and enjoying our day!  I dropped Alex off at day therapy and headed out to the beach!!!  3 hours there and I am looking like a lobster today and feeling it.....aaaaaaaaaaaaaahhhh.  The sun wore me out yesterday and Alex's friends Charles and Cameron came over to "sit with Alex and put him to sleep" for me.  They were in his room for maybe 5 minutes and he was OUT LIKE A LIGHT!  Shut the front door!  When I go in there he must be fighting the sleep because he lays awake for HOURS!  Sooo, I call my friend Miss Theresa today, Charles and Cameron's mom, to thank her and see if I can borrow them again, lol!  Once they got him to sleep and left... I followed suit and was out like a light myself... beat from the sun!

Chad was out of town this week and surprised me by coming home earlier than we thought and I came home to this from Brooks game!



The little gold box had a white gold one carat diamond tennis bracelet...WOW! Way to go Chad, hahaha! I got Chad a Panini Grill... not as grand as a tennis bracelet but something he loves none the less! :0) 

Alex, Nick and I visited Alex's high school today on their lunch break as Alex had been asking to go and visit his friends!  It was really nice to see him interact with his friends, back in his own element!  He loved seeing his friends and the lunch ladies spoiled him today by cooking him his favorite chicken wings... on the house... which by the way was NOT on the menu for today!  Alex was grinning from ear to ear today....Thank you Mr. Simmons for allowing Alex to visit today.  He really is looking forward to beginning the school year in August for his Senior Year and WALKING for GRADUATION!!

Tonight we are going to the Landsharks Arena Football game downtown... Alex is really looking forward to that!  Thank you Mr. Larry and Mr. Ryan for making it possible and hooking us up with Tickets!  YOU GUYS ARE AWESOME!  If any of you followers are out there tonight and see us... please don't hesitate to come up and introduce yourself.... Alex loves meeting new people, especially ones following our story!

Tomorrow we are heading out to St. Augustine to celebrate our Anniversary as a Family, tour the town and eat at our favorite spot... THE COLUMBIAN!  LOVE THEIR 1905 SALAD and can't wait!!!

A special thank you to the Maxwell's for your blessing of a 90 minute massage for me and the Roberson's for blessing us with a couples massage for our anniversary!  WOW!  Let me just tell you how much this is NEEDED..... I carry all my stress in between my shoulders and I can't wait till they get their hands on me, hahahahaha!  Thank you for your thoughtful gesture.... I will let you know how awesome your gifts are just as soon as I use them!

I am signing off for now.. have to get ready for our Landshark game.... and get Alex ready as well.... takes ALOT longer than normal so I need a couple of hours!!

I probably won't blog again until Sunday but can't wait to tell you all about our Landshark game adventure and St. Augustine... there is NO DOUBT I will have some funny stories to tell!! 

PEACE~LOVE~N~THUMBS UP~!

Lisa

Wednesday, May 12, 2010

NO HASSLE DAY! YAY!

We actually got out of here on time this morning... no major drama...routine get in car and get to therapy kinda morning...YAY!  Annnnnd, he only woke up at 5am to go to bathroom instead of 3-4 times... THANK GOD!  Maybe that brain is learning some bladder control... knock on wood!

Precious mom that I have... God love her.. spent the night last night... we got my room unpacked FINALLY and everything put away... mom cleaned house today while we were all out...THANK YOU MOMMA!  Sooo nice to have my house clean and things put away where they go, lol! It's the little things that bring a smile to my face me these days!

Alex said he had a good day today at therapy... said he walked alot at physical therapy.... GOOD!  He texted me at about 3:00pm and said "Mom, come get me, hurry, I don't feel good".... well I was smack in the middle of getting my nails done, so of course... I didn't get them painted and hurried out the door to pick him up.  He basically just needed to go to the bathroom, lol!  THANKS ALEX! :0)

Tomorrow is beach day with the girls...YAY!    Sunshine and 89....that's what I'm talking about!  The ocean has been calling my name for some fun in the sun... relaxation....can't wait!  Dropping Alex off at therapy and heading to da beach!

Chad is in Orlando for work doing an audit, comes home tomorrow....our ONE YEAR ANNIVERSARY.... YAY!  LOVE YOU CHAD DILLARD....SO MUCH!!  Taking the fam to St Augustine this weekend..... getting couples massage somewhere...either here or there... (know of any places anyone?).... eating at the Columbia... looking forward to that.  Would love to go off with just Chad however.... Alex doesn't do well with long spurts away from me... especially with the whole bathroom ordeal so we will improvise and make it a great day spent with the family and be thankful that we have Alex here this year to celebrate with us!  There's always next year :0)

Sweet friend Donna and her twins Ryan and Collin stopped by to visit  Alex with  Popeyes in hand... you know he loved loved loved that!  THANK YOU mucho... so nice not to have to worry about dinner.... Lillie and Lauren put Alex to bed tonight for me... AAAAAAAAAAAHHH THANK YOU MY SWEET GIRLS!  So nice to be able to sit in here and blog before 11pm!  I am exhausted from giving shower and getting Alex situated in bed..... going to get some shut eye now!  Sweet dreams of the ocean....and tomorrow becomes a reality!

PEACE~LOVE~N~THUMBS UP!

Lisa

Tuesday, May 11, 2010

STITCHES ARE OUT! YAY!

So today started out good.... my usual routine I gave you yesterday.... actually headed out early this morning because Alex wanted a gravy biscuit from Hardee's.  So we are outta the house and on the road at 7:40am.... plenty of time to get to Hardee's, eat and get to Dr. Vitarbo's office for 9:15am appointment to get stitches removed.  Get to Hardee's, get the food, get Alex set up in car to eat... gotta get out to get the bib out of trunk... realize bathroom necessities that he needs for day therapy... NOT IN CAR... have to drive allllll the way back home... about 15 minutes back tracking.  Head home, get to the house... AC is not working, it's like 77 degrees in the house...... talk to Mr. Mike, the superintendant out here... he makes a quick call... he will let me know what's up once he speaks with AC company.  Get in the house, grab his goods.... back in the car... head out the neighborhood... get almost out and "Mom, I have to pee".  Back up... turn around... drive down one of the roads with no houses... grab his goods (basically a urinal bottle... the pee jug as he has named it), jump out the car, grab it out of the trunk... open his door... "Mom... I think I have to poop"... OMG... SERIOUSLY!  Now the time is 8:45.... we have a 9:15am appt at Shands.... back in the car... down the street to the house... run in the house, drive the electric wheelchair out to car.... get him in it... up and in the house, bedside potty.... does his business... get him back in wheelchair... clean the bedside bucket potty.....down the ramp, up and out of the chair... slowlyyyyyyyyyyyyyyy.... get him in the car.....leave electric wheelchair in garage, lol... out the neighborhood onto our appt FINALLY... it's now 9:08am, I think we will be late!  We arrive at Shands...  get the wheelchair out of the trunk, put the arm trough on, put the leg rests on, put the pad to the chair in... get him in, wheel him in the building... check in at 9:25.... not too bad if I say so myself for all that I had been thru to get to this point, lol!  Now I guess because we were late... other people were pushed in front of us???? We had to wait a good hour before being seen and didn't get out of doctor's office until about 11-11:30.....but it was worth the wait!









As we were leaving today... Alex says... "Now I am whole again... all in one piece"!!  Superman speed recovery back on track!

He was exhausted today from our morning of craziness and he didn't make it back to day therapy today... he just wanted to get back home and rest so tomorrow we will start our morning craziness once again. first thing he wanted to do was TAKE A SHOWER... he hasn't been able to take one since we got home from Shands because of the stitches and staples!  HE LOVED IT!  We got all the dried blood and guck off of his head... squeaky clean!  Got him all dried off and he said... "Look mom, my hair looks like a fluffy chick"....TOO CUTE!! Yes my 17 year old just said that, lol.  DID I MENTION.... When we got home .....the AC was still NOT WORKING and we had to sit in the house that was BLAZING hot 85 degrees until 5:30pm when the AC company finally was able to make it to us and repair it.  Not a comfortable day at home... with Alex complaining how hot he was all day and wanting to go somewhere else.. anywhere but here.  We survived... AC is now working... Thank you to Mr. Mike Johnson, the superintendent out here, who was on the ball and got the AC company out here pronto.  When I called the company, I was told they couldn't get here until Thursday afternoon... ummmm, that wasn't gonna fly around here!!!  Life around here is already unbearable at times without having to deal with 85 degrees madness on top of it all!  Sooo.. a big thank you... to you Mike.... Alex said..." Mr. Mike is so nice... he works for us for free and fixes all of our stuff... for free!" hahahahaha!

Off to bed... Alex has been asleep for about 30 minutes so I need to get to bed.  Glad my boy has taken another step towards a full recovery... no more stitches and staples in his body!  THANK YOU GOD FOR ONE MORE DAY WITH MY HANDSOME BOY!

PEACE~LOVE~N~THUMBS UP!

Lisa

Monday, May 10, 2010

BACK TO THE GRINDING BOARD... DAY THERAPY BACK IN FULL SWING!

Whew... what a whirlwind of a morning today!  Hard to get back into the swing of things since last week all Alex did was lay around and sleep!  Up at 5:45 aaaaaaaaaaaahhhhh... hard on me especially since I don't get to bed once Alex goes down till about 11:30 and then he is up during the middle of the night to go to the bathroom!  I get up at 5:45am.. wake Brooks up... jump in the shower, put the coffee pot on....drive Brooks to bus stop, get back.... brush teeth, get dressed, hair, make up... 7am...wake Alex up, get him dressed, brush teeth, wash face.....onto living room, transfer Alex to sofa....clean trach, give meds, take a sip of my coffee, lol....put socks and shoes on Alex, wait... get leg brace and tennis shoes today he will probably have physical therapy, pack the bag, get his journal, pack meds, pack other bag with bathroom necessities and nature valley honey oat bar snacks.. oh wait.. water bottles too from the garage.... load bags in car, transfer Alex to wheelchair, "Mom, I'm cold can you find me a jacket please".... run to his room, grab a jacket.. .naturally not the one he wants but it will have to do.....out to garage, down the ramp, open the door, up he goes out of wheelchair... steady, right foot.. left foot... scoot a little more... almost there.. sit, hold his left arm, grab his left foot, Alex hold onto the roof handle slide around a little more... almost there, in goes the left foot, scoot butt around... here is the seat belt.. " Alex...click it"... " I can't find it"... ok, I'll click it...CLICK.. ok you're in... "Mom, get my pillows please"... get the pillows, open the car door, place one pillow between the door and his left knee, and one behind his head, makes ride easier with bumps ...."Mom...I'm still cold can you go get my blue sheet"... back in the house, grab the sheet...open the door, here you go... "Mom, do you know where my phone is?"... OMG... seriously... back in the house... find the phone.... jump in the car....oh wait.... load up the wheel chair....take off the foot rests.... take off the arm trough, take off the cushion seat... fold it up, lock the wheels.... heave hoooo up and into the trunk.... I should have sweet tone arms by now all the lifting I do, lol..... ok so jump back in the car "Mom can you hand me my phone".... "Mom, I'm thirsty did you bring a water bottle in the car?"....Mom, can we stop at McDonald's and I'll buy some breakfast".... aaaaaaaaaaaaaaaahhhh Like 5-6 statements and questions back to back to back... not giving me a chance to answer before he gets the next one in!  WHEW....I AM EXHAUSTED and we haven't even left the neighborhood yet, lol!  Sooooooo.... day therapy has its good points and bad points....good for Alex ......but stressing me out in the morning to get all I need to get outta here on time!!

After therapy he had a doctor's appt with physical medicine rehab doctor, Dr. Spierre, and Alex will be getting BOTOX... dang can I have some! The procedure will be done at Wolfson Childrens Hospital...He will be heavily sedated and have about 12-15 injections in his left arm and leg....apparently this will relax those muscles that are so tight and tense and will last about 3 mos and hopefully give him the jump start that he needs to get those limbs working normally again.  He is just so stiff and has so much tone that it prevents his flexibility without pain to be able to function properly.  Maybe I can slide my face in there...I just need a couple of injections... here and there, lol!  Shet told him she was impressed with his cognitive awareness and how "in control" he seems with himself .... we all know...better defined as God's little MIRACLE :0)

Tomorrow morning we have post op appt with Dr. Vitarbo to remove stitches from head..... and the staples from his stomach....YAY... Alex gets to take a shower tomorrow instead of a sponge bath....excited for him... and me, lol!  A shower is much easier for me than a sponge bath.... not to mention alot more enjoyable for Alex.  He said he can't wait to just spray the HOT water on him... it's the little things in life that make us happy huh?

Alex is asleep... I'm outta here peeps... will update ya on our dr visit tomorrow!

PEACE~LOVE~N~THUMBS UP!

Lisa

Sunday, May 9, 2010

TRULY MY MOST SPECIAL MOTHER'S DAY OF ALL!

Let me first say HAPPY HAPPY MOMMA'S DAY to all you beautiful women who are very fortunate to be a mother!  Today was YOUR day.... A DAY THAT I WILL NEVER FORGET NOR APPRECIATE MORE... than I did today!

I was invited to speak at a Mother/Daughter Tea at New Life Church on Park Street yesterday afternoon and I shared this SECRET ..... now I want to pass this onto you:

The Secret



One day, one friend asked another,


' How is it that you are always so happy?


You have so much energy,


and you never seem to get down. '

With her eyes smiling, she said,


' I know the Secret! '


' What secret is that? '


To which she replied,


I'll tell you all about it,


but you have to promise to


share the Secret with others. '


' The Secret is this:


I have learned there is little I can do


in my life that will make me truly happy


I must depend on God to make


me happy and to meet my needs.


When a need arises in my life,


I have to trust God to supply


according to HIS riches.


I have learned most of the time


I don' t need half of what I think I do.


He has never let me down.


Since I learned that 'Secret' , I am happy. '

The questioner ' s first thought was,


' That's too simple! '


But upon reflecting over her own life


she recalled how she thought a bigger house


would make her happy, but it didn’t!


She thought a better paying job


would make her happy, but it hadn't.


When did she realize her greatest happiness?


Sitting on the floor with her grandchildren,


playing games, eating pizza or reading a story,


a simple gift from God.

Now you know it too!


We can't depend on people to make us happy.


Only GOD in His infinite wisdom can do that.


Trust HIM!


And now I pass the Secret on to you!


So once you get it, what will you do?


YOU have to tell someone the Secret, too!


That GOD in His wisdom will take care of YOU!


But it's not really a secret...


We just have to believe it and do it..


Really trust God!
 
 
This secret really hits home..... and today of all days, I realize how very true it is!  I was in my darkest hour... watching and waiting for my son to pass within a 3 hour period and I have never prayed as hard as I did that night!  I had nothing left.... I gave it my all.... I begged God to please spare Alex's life, that I didn't care if he was paralyzed from his chin down, I would take on the challenge as long as he brought my baby back to me and I could see those beautiful brown eyes and smile once again.  I gave everything to him... I PUT ALL MY FAITH IN GOD...I asked him to spare my son's life.... He said... "Ask and ye shall receive"!  Thank you, thank you, thank you God for sparing Alex's life... for letting me have a Mother's Day with all THREE of my handsome boys.... for continuing to perform miracles DAILY in our lives.... YOU are the reason I have Alex here today and words cannot express the gratitude and emotions I have going on today.   A VERY VERY SPECIAL MOTHERS DAY FOR ME.... one I will never forget!  Brooks was baptized today... a confirmation of his faith in you as well. WE all understand and know that this was part of your plan..... we may not understand it.... we may not like it.... but we will be obedient and walk with you side by side until we are at the end of our journey and Alex is walking... no running.... back to his crazy,  happy go lucky self once again. 
 
Keep those prayers coming for us... every day is a challenge... mostly good days... but I too get aggravated... YES ME, lol!  It's hard when he is needing me every second of every minute of every hour... fix my foot, get me a hot rag, bend my leg, I have to pee, please get me my water, mom I'm hungry........there are moments I just want to run and lock myself in a room and get 10 minutes to myself for noone asking me to do anything.  But then.... I go back to day ONE... and I agreed to take on the challenge no matter what ... if he spared my son's life.  Today is day 123 and you know what... I GOT THIS!  He isn't paralyzed.... He can speak without hesitation and on a dime..... he can think for himself.... he remembers everything and crazy things like stuff about history.... slavery and Rosa Parks... heck I was learning stuff from his and Kinlin's History conversation yesterday!!  I GOT THIS!!  Remember.... IT COULD ALWAYS BE WORSE!!  ALWAYS!  He could be alive and in a coma... BUT HE'S NOT!  He could be alive but a vegetable...BUT HE'S NOT!  He could be alive and blind... BUT HE'S NOT!  I GOT THIS!  THANK YOU GOD.... THANK YOU!  Today is the most special mothers day ever..... ALEX MICHAEL ROSS IS VERY MUCH ALIVE ON DAY 123!!
 
We had an awesome church service with Brother Joe at Macedonia this morning when he baptized my baby boy Brooks.... so proud of you Brooks!  Thank you mom, Miss Jeanne, Collin, Carly, Rachel and Chad for coming and supporting Brooks.... it meant the world to him for you to share this monumental step in his life and I thank you for being there with our family and being supportive!  From there we moved onto Olive Garden, as we treated my mom at one of her favorite spots to eat.  We came home, Alex fell asleep... and I snuck off to the pool with Kinlin.. YAY!!  I got a whole HOUR to myself...AMAZING!  It was just awesome hanging out with my family... soaking up every second .... every conversation... every kiss... every hug... every I Love You Mom.... BEST DAY EVER... Thank you boys.... MOMMA LOVES YOU.. HEART AND SOUL... COFINITY! :0)
 
Alex goes back to his day treatments tomorrow... back on track... getting back in the groove... will be walking in no time!  He said today that he was "Handicapable"!  LOVE IT!  Not handicapped.... HANDICAPABLE....I LOVE THAT KID!!!  He inspires meeeeeeee!  It can't be easy having to be totally dependant on your mom at age 17..... having to be dressed, bathed, put to bed, going to the bathroom..... HE IS AWESOME....and I am in awe of how positive he has stayed throughout this whole ordeal.  "WE CAN DO ALL THINGS THRU CHRIST"..... again.. ME, ALEX and JC... WE GOT THIS!
 
Here are a few pics from my special weekend with my family! 
 










Nicholas is home for the summer.... and very much in need of a job :0)  Anyone out there needing a hardworking, handsome, smart boy to fill a position or know of anyone hiring... PLEASE let me know!  He is majoring in Public Relations, a junior at USF... would love to find him something in that field but beggars can't be choosers and he will work where he is needed!

Thank you all so much for the inspiring and encouraging messages for mother's day.... your words stay close to my heart and somehow lighten my load!  SO THANK YOU!  I don't feel as if I am any more special than any of you other mothers out there as I am simply doing what I think any of YOU as a mother would do for your own child.  I get my strength from God, Alex, my family and all of you!  I count on those emails to get me thru my difficult moments... God touches you to write to me on just the right days, lol!  Keep the prayers coming... we still have a very long road ahead with lots of obstacles to over come.  Pray for my boys sight to be fully restored.... for his left leg and arm to start waking up and move with command... pray for my peace of mind and strength to keep a smile on my face even when I don't want to!  Thank you all for taking this journey with me and keeping us close to your hearts....you may not know it, but God is working in your lives as well by tuning you into mine!

PEACE~LOVE~N~THUMBS UP!

Lisa