RANDI IS GONE AGAIN :0(

We said another goodbye to Randi last night.... we left with tears streaming down our faces and laughter in our hearts... we always say we are not going to cry and as soon as we hug goodbye the tears start falling and then we start laughing because we said we wouldn't cry lol.  It wasn't the visit I had anticipated for her.... I wanted more of the beach and fun in the sun with a visit to Blue Springs and Ichatucknee... instead she had to bargain for the homefront and hospital!  On the flip side of the coin... WE HAD GREAT SISTA TIME and shared another recovery phase with the dehydration and eratic behavior we encounterd together once again.  Can't wait till she visits again hopefully in the next two months and Alex should be alot farther along with his walking and botox that is scheduled for July 22nd which is actually Brooks' birthday!

We are at out patient therapy today back on track and the physical therapist just came out and said he had a FANTASTIC DAY today with his walking and effort!  YAY... ALEX GETS AN A+ FOR THE DAY.... I feel like a new mom with his first day in school and he gets a green card for the day,lol!  She just came out with Alex and he has like 5 stickers all over his shirt with ones that say WOW and VERY EFFORT and THANK YOU, lol!  She said he told her "PUSH ME... I want to run on the field September 12th for the first Jaguar game"... " I WILL BE RUNNING ON THAT FIELD!".... "Just keep pushing me!"...

HOW AWESOME IS THAT!!!?  I could cry I am so happy to hear that!  Soooo Ryan...  be ready... he is set to be your ball boy for the first game!!  Won't TEBOW be surprised to see that as he is standing on the Denver Bronco's sideline!!!  Superman Speed Recovery... HERE WE GOOOOOO!

Below are some pics from Randi's departure at the airport last night:  WE MISS YOU TONS AND TONS ALREADY RANDI!!!

Randi, Me and Carly... Carly is actually going up to NJ and will be seeing Randi on her birthday July 8th!!

Alex playing with Randi... tusseling her hair... love the facial expressions Randi, lol!

Signing off for today... Alex is having his VitalStim testing as I write and I want to pay attention, lol!

PEACE~LOVE~N~THUMBS UP!

Lisa

SPECIAL THANK YOU TO OUR WOLFSON NURSES!

I forgot to mention a few special ladies that spoiled my handsome boy rotten and nursed him back to health in order to get out of the hospital.  A very special thanks to Julie whom baked Alex two batches of chocolate chip cookies, Monarie Lacanilao who brought him chocolate chip muffins AND had a special meal of Chicken Adobo brought in just for him, Margie, Stephanie and Tracy .... you ladies Rock!  I am very fortunate to have had you nurse and spoil Alex during our stay at Wolfson's.  It takes special people to be nurses and WE have been very fortunate on our journey to have had the best of the best.  It always helps that Alex steals their hearts the minute he starts talking and wanting to know everything about the ladies, lol!  How can you resist those big brown eyes?!  THANK YOU ....THANK YOU... THANK YOU... for giving us the best care possible while on your watch!   It's never fun being in the hospital but you made our stay the best it could be under the circumstances and  I appreciate you more than you will ever know.

Randi and I found some pictures of Alex obsessing over his water this morning on another camera disk I had so I thought I would share, lol. This doesn't even BEGIN to explain or tell the story of the "boy who couldn't get enough water"!!!

 

THANK GOD WE ARE OVER THIS STAGE! 

PEACE~LOVE~N~THUMBS UP!!

Lisa

WE ARE HOME, ALEX IS DOING GREAT... RANDI LEAVING TOMORROW :0(

Last time I blogged was Friday night and Alex's sodium was coming down... we had a little bit of a roller coaster ride while in the hospital but Alex finally started drinking his nectar consistency of gatorade and has been doing great with that!  I didn't think we would be out of the hospital until Wednesday this week but Alex showed out and really wanted to get out of there and go home so he began to drink up and it worked.  They took him off of the fluids on Saturday afternoon and by Sunday afternoon his numbers were still good and with the promise from Alex that he would continue to drink up.... they would release him.  Sunday night we were home in time to watch some TRUE BLOOD, lol!  We arrived home about 8:40pm and I can assure you that I was stir crazy from being in a 4X4 room for a week when I thought all we were going to do was get him a couple bags of fluid in his system and then be home last Monday night.  We always take the long road home, lol.

Alex did get some physical therapy while in the hospital.... still determined and ready to give it a go... here is a little clip of where he is now:



Today has been a nice transition to being home and Brooks even put on a show for Alex..... taking on Alex's video antics ... He had us cracking up.... even Alex was chuckling and smiling.... a rare sight as it isn't very often we see emotions from Alex so anytime we get any sort of a crooked grin it is always welcomed!



We enjoyed a girls night out at my girlfriend Theresa's with her daughters, Carly, Heidi, Randi and I... we watched the Bachelorette, drank shirley temples and ate birthday cake for Randi!  She was surprised...THANK YOU Heidie and Theresa for putting that together.... glad we have Monday nights that I now have a little getaway to look forward to!  LONG OVERDUE!

Randi leaves tomorrow afternoon.... sad to see her go and looking forward to the next visit ALREADY, lol.  Kristen will be coming in soon and tagging in to help out with Alex's schooling this summer so we can get him caught up and in August ready to go back to school as a SENIOR... THANK GOD!  Looking forward to some more quality sister time with the next oldest baby sister :0)  Hopefully she doesn't have to stay in any hospitals, lol!

Alex and I have a SUMMER PROJECT request from our many followers out there that will be vacationing this summer.  As we won't be able to take any vacations this summer... we have a simple request that will be a big part of our scrapbook and the best pics will be part of my book, so I'm really excited to see what we get.  Steve started the journey with Alex when he travelled to Europe and took pictures various places of Alex's bracelets in front of historical sites.  We thought it would be a cool way to vacation with you if we had pictures of his "pray for Alex Ross" bracelets at certain destinations on your vacation.  Ms. Kati from Brooks Rehab Day Therapy program just got back from Alaska and shared Alex's story with people as she traveled across the world.  What an awesome story to share... the MIRACLE of Alex Ross and how God is working in our lives!  Here is what Kati shared with us:

.

These are from Europe from Steve Grant that I posted in an earlier blog :0)

Thank you Kati and Steve for sharing your journey with us and for thinking of Alex while you were trapsing across the world!  xoxo

So now that you know what we are looking for... I am hoping you will take on the challenge and share Alex's story while on your vacations and take pictures of his bracelet in some of your favorite vacation spots :0)  SOMETHING WE HAVE TO LOOK FORWARD TO since we won't be taking any vacations this summer.  If you don't have a bracelet and would like one, please get with me and we will somehow work it out so that you get one!

Glad to be back home.. family put back together once more... Alex is determined not to end up back in the hospital so I think we are back on track to SUPERMAN SPEED RECOVERY!!  I haven't had many emails lately so I am hoping  I still have readers out there that will take on our vacation project this summer.  Thanks to my prayer warriors on Facebook.... Your encouragement and prayers are working and you send me messages and uplifting messages when I need it the most ... so a big thank you with hugs from me!

SIGNING OFF.... will keep you posted... hoping to take Alex to the pool tomorrow with Randi before we head to the airport and may have new pics and/or videos.

PS... you will all be happy to know that we have totally lost the spray bottle and spit cup since he is hydrated he has not asked for them one time!  I imagine he was so dehydrated he was like a man lost in the desert obsessed with quenching his thirst!!  Now that he is hydrated he is like a WHOLE NEW ALEX and ready to get back in the routine of things with therapy... THANK GOD!!!

PEACE~LOVE~N~THUMBS UP!!

Lisa

IT'S CRAZY UP IN HERE! SODIUM IS COMING DOWN!!

QUICK UPDATE.....

Extensive blood was drawn today for more tests and the sodium level is now down to normal!  FANTASTIC!  We got crazy up in here tonight and played YAHTZEE!!  What a wild and crazy Friday night we had up in here, lol!

I doubt they will be letting us go home tomorrow...even though the sodium level is back in the normal range they still want to make sure he is drinking and eating normally so that we don't end up back here next week... I tend to agree with this, lol!  He has been taking little itty bitty tiny winy  sips of apple juice.... flavored water and coke.  However... he needs to be taking much more liquids in before they will let us go... also... he needs to be outputting urine more so than he has been... soooo... even though the levels are back to normal... now we have other things to focus on! 

WE GOT THIS!

And Lord... Thank you for continuing to bless me with the life of Alex Ross.  I promised you the night of January 6th that I would take him any way you gave him back to me and I have been faithful in my walk and will continue to do so.  We will face whatever challenges arise on our journey and will not lose FAITH in YOU no matter how much the devil trys to bring us down!  Thank you Lord for the many many blessings I have in my life with family, friends and my good health to be able to take on whatever obstacles come our way in Alex's recovery progress.  You are an awesome God and I still give you all the honor glory and praise for your miracle in Alex!  You have turned heads.... you now have many believers that were in limbo or lost.... many have changed their whole way of life...changed attitudes and how people look at life.....many count their blessings and give you praise...... many have been saved by your Grace... many have rededicated their lives.... because of your miracle in Alex you have saved 3 lives contemplating suicide that I know of, and there may be more.  This is an incredible journey... I am still learning.... still in awe of what you are capable of and very thankful at how you give me the strength to get through the days when I think "How can we take any more"... you wake me up with a smile on my face and full of sunshine in my spirit.... for that, I thank YOU LORD!  Most of all... THANK  YOU GOD FOR ONE MORE DAY WITH MY HANDSOME BOY... no matter if we are in a hospital or our home... I thank you! :0)

PEACE~LOVE~N~THUMBS UP!

Lisa

PS... Thank you Miss Donna for the chocolate Sundae's today.... just what the doctor ordered! :0)

LOOKIN LIKE THE HOSPITAL IS MY NEW VACATION SPOT! :0/

Met with Dr. Chen this morning and he was confident that we were going to get that sodium down and back to normal by tomorrow so that we could get outta here.  He was going to change some fluids around so we were all gung ho and thinking tomorrow we would be going home. HOLD UP... NOT SO FAST...  nurse took blood this afternoon and guess what... the sodium went up...by two numbers..... IMAGINE THAT!  Like you all thought it was that easy huh> hahahaha... WOW!  It's kinda funny...not really but you know me.... all I can pretty much do is shrug my shoulders and look forward to tomorrow!  I mean really.... what else did we have to do right?  We went from 2 hours in the ER to now going on 5 days, lol!

Julie Moore Pickett, our nurse asst.... whom we know from way back in Eagles View days and have been blessed to have with us on our Wolfson's journey.... showed up this am with home made chocolate chip cookies for the boy!  THANK YOU MISS JULIE... how sweet are you!  I love Alex... he told her he had a crush on her when he was little lol.  Truth be known... I think he still does Julie... especially after you show up with cookies.... you know food is the way to a mans heart, lol!  I really feel like God crossed our paths for a reason.... it has been forever since we were sitting in the bleachers watching Nick and her brother Sam playing baseball for EV.  This is all part of his plan... whatever that may be.... what a crazy journey it has been but I can proudly say... I HAVE NOT NOR WILL I ... LOSE THE FAITH!

We have had some adventures around here today... you know we always get stuck on the "CRAZY" floors... we have a new nickname for another young resident here two doors down... KARATE KID, lol.  I tell you what... Alex is a mess.  All of a sudden we hear this screaming and hollering... "Get me outta here... get these f'n restraints off of me"... "aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaahhhh"... "I'm a good person... get these f'n things off of me"... "F&*%"..  mind you we are in a pediatric hospital with all these small children and "Karate Kid" as we call him is shaking his bed... screaming and hollering at all the nurses... cursing up a storm ... all the while Alex is going.. "I want to take a field trip"... " I want to go see"... then he says.. "Close my door some more... just a crack... I don't want my room to be the first open door he see's if he gets out". HAHAHAAAHAHA!  It was crazy around here today!  I'm not sure if he was tripping on some drugs or crazy or what.  Alex was scared to death that he was going to get out and come in our room, ha!  Never a dull moment!  They got him calmed down and then this afternoon he flipped out again so they ended up taking him off of our floor.  He was probably scaring ALL the patients not just Alex!  I can't write everything he was saying but if you ever get Alex one on one... be sure to ask him cause he impersonates him and all!

That was the entertaining part of our day.... for the most part we have just been lounging around.  Alex actually seems a little blah today and more lathargic than yesterday :0/  Thank you momma for bringing us Chic Fil A... even though Alex didn't want any of which I am very surprised!

Not sure when we will be getting outta here...hopefully some light will be shed on the situation tomorrow and we will know more.

Thanks for all the continued prayers.... don't stop.... they are working! xoxo

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

PEACE~LOVE~N~THUMBS UP!

Lisa

Still in hospital... KIDNEYS????

Sad to say but we are still in the hospital here at Wolfson's Childrens Hospital.  The blood test came back this morning and the sodium is lower so we got all excited only to have the doctor come in and tell us... yes the level is lower, however... being he has been hydrated for over 48 hours and the level still isn't normal brings questions as to if there may be an issue with some diabetes something hormone and the kidneys???  They are bringing in a kidney specialist ... I thought today but they must have gotten busy... so maybe tomorrow am we will see him.  They also took a more extensive collection of blood to run some more in depth tests to see if there is anything else going on.  His sodium level has never been an issue with all that we have gone thru until now.  I am thinking the dehydration has triggered something else... we shall see tomorrow!  We will probably be here thru Friday as I have already told the doctors that I am in no rush to get out of here until we know what is going on because I don't want to end up back here in another 48 hours.  So until he is eating and drinking pretty normal and the levels of sodium are normal... we have become residents of Wolfson's!  We had the swallow test this morning... I took video of it so I could share with all of you..... you know how I like to show you all aspects of our journey, lol..... however there is a glare so you can't see it... ugh!  He did well and it revealed that he can actually swallow substances of nectar consistancy which is one step down from the pudding consistancy that he was swallowing.  He still CANNOT swallow the thin liquids as he began to aspirate during the test this morning.  This will come in time once the swelling goes down and his muscles become stronger.  The ENT came in today and numbed his nose and went down his nose into his throat with a scope to see what was going on down there.... his epiglottis? is still really swollen as well as the whole area down there.... his right vocal chord is NOT moving at all and we know that the left vocal chord is paralyzed so that is why he is having trouble swallowing as well.  She ordered a steroid of 3 doses .... one every 8 hours to reduce and help with the swelling... another watch and wait. She said that this is why he probably hasn't been eating because of the swelling and it probably really hurts when anything goes down the throat.  He has been eating today... clap clap..... first signs of actual hunger today now that he is hydrated!  For breakfast he ate french toast sticks and bacon with a choc chip muffin that I bought him at the coffee shop.... not so much any lunch- couple tater tots and double choc choc chip otis spunkmeyer muffin ... but dinner he had mac and cheese, double choc chip otis spunkmeyer muffin (his new love) and just told me he was still hungry so I let him have a vanilla pudding.  It seems his appetite is picking back up however.... I am not just going to let him eat himself back to plumpness, lol!  This time I will monitor and not just give in because I am happy to see him eat... lesson learned last go round... on top of things now!

He has been in great spirits most of the day... still complaining of a back ache...  there seems to be a dip in the bed... we have been trying to get him a new mattress since yesterday... our sweet precious nurse Margie did give us an eggcrate for him last night however... this isn't doing the trick!  Hopefully tomorrow we get a new mattress for him and that relieves some of the aches going on in his body.

Tonight Randi, Aaron and I enjoyed a great game of Rummy with Alex!  We set it up to where his tray was across his bed and we layed the cards out to where he could look at them one by one and he actually did pretty good and scored 55 points!  Amazing to all of us that he can actually sit here... 5.5 months after being shot in the head and process a game of Rummy!  A strategic game of Rummy.. nonetheless!  he loved this game prior to his injury and used to kick some serious butt playing it with the family!  My God is an Awesome God and even though our road has been bumpy and never a dull moment... I know he will pull us through this with flying colors!  We will get our own set of wings!  I keep telling myself... it could always be worse and don't I know it!  Alex Michael Ross is very much ALIVE and heck... playing RUMMY... WHAT THE FRENCH TOAST, LOL!  Very thankful tonight for the gift of life that God has given me and Alex.... enjoying my time with him as well as Randi and Aaron. 

Back at the homefront... Missing Nick (haven't seen him since Sunday....  Nick is very sick with some congestive respiratory funk and coughing is extreme...and haven't seen Chad today... he rolled his ankle at work today and is hopalong Cassidy at home hopefully with his foot elevated and iced... Two little sick ducklings at home while mom is away with the other sick duckling in the hospital.  PLEASE SAY PRAYERS FOR THEM..... I hate that I can't be there to take care of them as well!  Brooks came to hospital yesterday... he has been chilling at his dad's having a lazy summer day today.  Even though I know we need to be here until we get this resolved... I miss my family all being together and look forward to going home with ALL MY BOYZ!  MOMMA LOVES YA'LL!

Randi leaves Tuesday.... not much of a vacation for her since we have been in the hospital since Monday... BLAH!  Maybe I can get her to the beach sometime before she leaves... hopefully!

Mr. Alex is fast asleep and you will all be happy to know that since he has slowly been hydrated... the craziness with the water bottle... spraying and spitting is dying down as well.  Poor baby was just dying for water and his mouth was terribly dry from being dehydrated!  ALL IS GETTING BETTER... just takes a little time... some things just can't be rushed and we all know that Alex is on his own timeline, lol!

I will keep you posted on the kidney situation... hopefully will know tomorrow.

HERE ARE SOME SMILES FOR TONIGHT... I LOVE WATCHING VIDEOS OF ALEX... HE IS A HAM!  He usually comes up with a birthday dance for me every year... found these from last year... HE IS A GOON, lol!






MISSING THE OLD ALEX BUT KNOWING HE WILL BE BACK SOON!

PEACE~LOVE~N~THUMBS UP!

LISA

SODIUM HIGHER TODAY THAN YESTERDAY... WE ARE STAYING IN HOSPITAL!

So you all know how our story goes... we like to take the scenic route of things and instead of coming to the hospital for a couple of hours for a few liters of water to hydrate the boy.... we end up finding out that his sodium level is high and infact higher today than yesterday!!  Even after being hydrated all night and today... this afternoon his sodium level was STILL higher than yesterday... WHAT THE FRENCH TOAST???    This was what his urine looked like yesterday and prompted me to bring him in:

He weighed in today:

116 pounds.... he has lost 20 pounds since the surgery on June 2nd! 

SHUT THE FRONT DOOR!  Not that he didn't need to lose a few pounds but not all this and so fast!

Today the speech therapist came in and did somewhat of a swallow study with him... trying different thicknesses of liquids so we can get him on track.  He is scheduled for a barium swallow test in the morning so we can better assess the situation of how he is swallowing and where those liquids are going... hopefully not into his lungs.  http://www.youtube.com/watch?v=5QhBvXsJ53E

Next thing I know... I look over and this is what I see:

The speech therapist had given him a bottle and he was able to take baby sips and swallow the water... he fell asleep drinking the bottle, lol!  Just like my little baby Alex used to do when he was little!  ( He will kill me for putting these on the web but I couldn't resist, lol!

His eye exam on Monday went well.... Mr. Smartypants Alex in his almost evil whisperish voice that he now has until it completely heals says to the technician conducting the test.... "If you fail me ... I will find you!!"  hahahahahahaha.... He got his full name as well and kept doing the whole two fingers, pointing to his eyes and telling him.. "I'm watching you!"..  The test consisted of him sitting in a chair with his chin in a grip and forehead against a rubber piece with this satellite dish looking thing in front of him.  He held a clicker in his hand and was to focus on the black hole in the center of the dish and when he saw the little dot of light he was to click the clicker!  I will tell you this... in my evaluation and I am not the doctor ... but it doesn't look good for his peripheal vision.  Not sure when I will get results but I know he does have another one of these tests in August.

Here are some pics and video from his eye exam.... thought you might find this interesting... this is the Goldmann Visual Field Test.

Alex has still been in great spirits.... still cracking jokes today and enjoyed his visit from his buddies Cameron, Charles and Caitlin Hawkins.  Please continue to pray for us... our battles are many ahead but with God by our sides.... you already know... WE GOT THIS! 

Thank you to all our wonderful prayer warriors we have already seen some light... beginning with his urine as tonight it is beginning to look a lot more like ordinary yellow urine.  The thing I worry about most is that even as his urine begins to regulate to a clearer liquid... if the sodium count stays high... this means there may be a kidney hormone disfunction from what I gather from my conversations with the Doctor.  This is definitely something that I DO NOT want it to be.... another road block.... another pit stop of which I am ready to put behind us once again.  Praying his swallow test shows nothing but great results and that the swallowing malfunction is only a "brain quirk" and his insecurity with swallowing and not actually liquids going into his lungs.  If this is the case... we can show him the video and then it will trigger his brain to NOT BE SCARED to swallow and we can move forward.  Soooo... prayers for now are for:

swallow test and sodium count to decrease

I'm not so much pushing to go home as I want him to be fully recovered and hydrated... even though I would love to be back at my home.......  i also want him to be able to stay hydrated after being discharged.  We don't want to end up back here in 48 hours because he still can't drink or want to eat. 

Randi said she would just like to visit one time without having to keep going back in the hospitals with him and having to say goodbye at the hospital.  We had planned to go to St. Augustine today as she has never been!  Hoping to fit that in before Tuesday when she gets on a plane to go back :0(

Keeping the Faith... this is part of the bigger plan... somehow.. someway... I know this is in HIS hands and he will take care of Alex every step of the way.  WHAT A GREAT STORY TO TELL HUH?  Not to mention you can all ask us which hospital better suits your needs in jax lol!

PEACE~LOVE~N~THUMBS UP!

Lisa

PS...  A special thanks to our friends... Donna, Collin and Ryan for bringing Alex and the family POPEYES... his favorite tonight... he actually ate mashed potatoes and a couple bites of chicken!  More than he has eaten all in one sitting since the surgery!  THANK YOU GUYS!  That was much needed and very thoughtful!

HAPPY BIRTHDAY TO ONE OF MY VERY SPECIAL FRIENDS... HEIDI LEE... I LOVE YOU BOO!

Alex is DEHYDRATED!

So here we go again... it's one thing or another.... we are spending the night in the hospital at Wolfson's Childrens hospital.  i became concerned today when Alex had to pee and it was the color of sweet tea!!!  WHAT THE FRENCH TOAST?!  We have been here since 5pm and they have given him 1 and 1/2 liters of fluid... taken blood only to stick him about 8 times because his veins are hard to find from being dehydrated.  The second set of blood work came back with his sodium still high .....so better to be safe than sorry and keep him overnight to watch.  He is still in witty spirits....  told them to bring the girls in bikini's with grapes to feed him, lol!  He is a jokester and has been all day even thru this.  I have pics from today's testing to share.... he was definitely a trip there as well.  Closing for now....will write tomorrow when we get home or if he goes to sleep tonight at a decent hour I will write from the hospital.

Until then... Please pray for my handsome boy that all works out and we go home tomorrow!  I am kinda sick of hospitals... ya think?! lol  Atleast this is a change of scenery... heck we have been at Shands, Memorial now Wolfson... let's see... should we go for Mayo Clinic next? lol  I will be a connoisseur on hospitals and could maybe do a write up of all the pro's and con's on each one ha!

Anywho...  we are getting ready to go to our room from the ER so I need to close... stay tuned for updates!

PEACE~LOVE~N~THUMBS UP!
Lisa

HAPPY FATHERS DAY TO ALL!

We had a super busy Friday thru today with Chad's dads wedding....
CONGRATULATIONS TO THE NEW MR. AND MRS. DILLARD!

In picture:
Randi, Chad, Nick, Me, Brooks, Aaron our nephew and Alex

We couldn't be more happier for you both and love you dearly!

Friday Alex had physical therapy however because he showed his butt and was unfocused and uncooperative, they pretty much washed their hands of him and brought him to me 20 minutes before his session ended and said we would try again on Monday.  GREAT!  Of course after he sat there for 10 minutes and I wouldn't give him any water he decided (on his own) that he should go and apologize and maybe get the last 10 minutes in... nice try but no cigars, lol.  So we sat there until 11am for his speech therapy session where he was going to get his vitalstim test that I wrote about earlier in the week but because he was so erratic she decided it best we try something else for behavioral instead.  She had him draw 5 triangles on a piece of paper, had him write down three rules for the following hour that he had to follow, gave him a sheet of stickers and told him that if he got all 5 triangles filled with stickers then he could have his water at the end of the session.  POSITIVE REINFORCEMENT....WORKED as it always does with him... he responds much better to positive than negative as do most of us without traumatic brain injuries.  Maybe we can try that at physical therapy and get some progress there.  We had it scheduled for tomorrow howerver I realized a schedule conflict for Alex as he has a very important eye exam tomorrow at 9:15 am therefore we have no therapies tomorrow.  

The eye test is called the GOLDMAN FIELD TEST http://www.jomtonline.com/jomt/articles/volumes/2/2/VisualFields.pdf

After reading this... my morning will be quite interesting with Mr. OCD himself!!!  Please pray for us... and then pray again.  This test is very important and will tell them if Alex can reenter the school system with his disabilities and if he will ever regain his peripheral vision again.  This test tomorrow is for the school system, we have another one in August to better reassess the diagnosis of permanent damage.

Saturday before the wedding we decided to take Alex for a swim... HE LOVED IT!  We will be trying this lots more now that I know he won't go crazy on me in the water, lol.  Here are some pics from our water adventure :0)

He found the unlimited water supply and was in heaven!

Mr. GQ with his hair growing back! Handsome!

Yes he is swimming with his slippers on... he insisted!

Walking and exercising in the pool!

I have some great ones of him and Chad but have to download from a camera... these were on my iphone so I will share those hopefully tomorrow!

Wishing all the Fathers out there a wonderful Father's Day.... hoping you Thank God for blessing you with these wonderful creatures we call children and are basking in quality Family Time today no matter their age! SOAK IT UP..... enjoy... they grow so fast and we can't ever get back today.... it will be gone tomorrow.

Alex is calling... imagine that... no literally... calling me from his phone lol .... he needs me in the living room!  Hoping to get some good quality writing time tomorrow!

PEACE~LOVE~N~THUMBS UP!

Lisa 

POST OP VISIT WITH DR VITARBO - NEUROSURGEON

Today we had a post op visit with Dr. Vitarbo and got a BIG THUMBS UP!!  The cat scan looked great... everything as she expected.... of course, not normal.. but what she totally expected.  The shunt is doing it's job... she felt all around and gave us a big smile and said "see ya in 3 months"!  HECK YEAH!!   Alex cracked us up as of course he did his little showboating for Miss Michelle, Dr. Vitarbo's assistant... he had to show off his walking and doing what he calls his handicapable version of the"stanky leg" and then trying to "drop it like it's hot", lol.  All while he has his arm around me to hold him up!  He is a ham!  He wasn't as OCD today as he has been with the water/spitting deal... seems that if we can distract him long enough... he forgets for awhile, but his latest fixation is squirting water on his face!  He was taking his water bottle and basically just throwing the water all over his face... by the time I got him out the car today... his shirt was totally soaked!  Soooo, on the way home from Dr Vitarbo's office, I had this bright idea of a water squirt bottle so he could "MIST" his face.  He still isn't really drinking liquids... I have tried gatorade, kool aid, coke, flavored water... he just doesn't want any of it... anyway ... he tells me his mouth is constantly dry and he always feels like there is something in his throat so that's why he always wants water in his mouth or cold rag on head.  I thought I had this bright idea of the water misting bottle that way he wouldn't drench his clothes with throwing water out of his drinking water bottle... WRONG, lol.  My handsome boy takes the mist bottle and squirts the water 500 times UNTIL he is drenched, lol.  Now not only does he squirt his face but he squirts it into his mouth and then wants to spit as well.  I HAVE CREATED A MONSTER!  What I think will make it easier and lessen the water obsession has just created another fixation..... I just can't win!  I figured that I could show him he could do SMALL squirts into his mouth, and swallow that to where he wouldn't have to spit!  It will work if I can actually get him to do this on a regular basis.  He does it for like 3 squirts and then goes bazerk with the squirting like a derranged mad man!  I will have to video him and post on here so you can see a little of what we get each day :0)

Ms. Amy from Dr. Becks office called today to check on Alex and let me know that she ordered a vitalstim test (http://www.vitalstim.com/what_is_vitalstim/detail.aspx?id=88) for the speech therapist to do while at rehab.  He should be starting this tomorrow.  She said that this should improve his swallow faster so we can get back on track and also his voice as he can only whisper at this point.  Keep those prayers coming.... we still got along way to go but he is getting better with his throat... just still no appetite and not really drinking any liquids.  Applesauce is about all I can get him to eat and even that isn't a whole lot when he does.  Amy suggested 3 meals a day and 2 snacks... starting on that ... wish us luck!

We did get good news in regards to his schooling.  He is only 1/2 credit away from being a Senior and promoted to the 12th grade sooooooo, he can take the 2nd half of English III and get the .5 credit he needs online this summer!  YAAAAAAAAAAAAAAAAAAAY!  So much better than I anticipated and thinking he will be ready to begin school come August!  He is looking forward to starting school... I just hope his brain is prepared as much as he is!

Poppa Dillard is getting married this weekend to Miss Jeanne so it will be a busy busy weekend for us.  Tomorrow is Alex's therapy in the morning.....tomorrow night ....the rehearsal, dinner and then I am putting my flourist talents in order and preparing the bouquets for Miss Jeanne.  Saturday is the wedding and I am the photographer so I have lots to do this weekend so if you don't see any blogs... I will catch you all up on Sunday as to what we have been doing.  Praying to God that Alex will last thru all of this and enjoy himself.... without the water, lol!

He is now fast asleep so I am signing off.  Wishing you all a great weekend.....I am looking forward to ours.   Wishing all the father's out there a HAPPY FATHER'S DAY.... spend it with your children... even if it's doing something they want to do.  You are more likely to enjoy yourself if they are enjoying themselves... you know how that goes!  Soak up every second of it.... the laughter, the smiles... ENJOY your time with your children.... make the time..... you won't regret it.  Always remember... a phone call could change your life.... count your blessings... and then count them again! 

PEACE~LOVE~N~THUMBS UP!

Lisa

OUTPATIENT THERAPY BEGINS!

So I thought today may be an easier day for all of us... my day began a little something like this...

Wake up at 8am to take Brooks to meet ride at Watson office on 103rd/295.... from there they take him to his "hitting camp" this week.  As I am walking out the door, I get a call from Brooks Rehab that he has been scheduled for 9-10 & 11 for three consecutive therapies.  SERIOUSLY.... maybe in my fantasy world I could make the 9am appt, but not the real world I live in where Alex is still asleep and I am on my way to drop Brooks off and won't be back home until 9am.  Thank you, I will only be able to make the 10am and 11am appts.  Race like the wind to get back after dropping Brooks off, God bless Aaron and Randi as he has had them up to go to the bathroom and Aaron is now dressing him for me.  Ok, this will help me... take some time off of our schedule so that I have time to jump in shower and we can get out the door to make it to our 10am appt.  I go into my bathroom ... Alex went to the bathroom alright... OMG... there lies the 11 days of constipation waiting for me to handle, lol.  I swear it looked like a COW had unleashed 11 days of eating, hahahahaha.  Anywho... without being too graphic... long story short... I cloroxed and cleaned his bedside toilet and jumped in the shower, out, get dressed... it's now 9:30am... we gotta get outta here now!  Alex still hadn't taken meds... grab the applesauce, put in the thicken it... get the spoon... WAIT... grabe the meds.... FINALLY Out the door, Alex in the car, click the seat belt, roll down the window, fold the pillow and put between his leg and the door, Aaron and Randi have the wheelchair broken down, in the trunk, grab the backpack, grab the AFO (leg brace), jump in the car... oops.. make sure the doors are locked.... close garage... here we gooooooooo!  We made it to therapy in record time 10:03am.... HOW? I will never know, lol.

As we get there I am explaining to Alex that he will not be having his water while in therapy and that he will only get it between therapies... BRAIN OVERLOAD, lol.  We meet our new speech therapist Allison Buckle... love her... Alex broke her in with his wit real quick..imagine that.  She begins to ask him a series of questions, an initial evaluation if you will.... "How old are you Alex"...  he says "22"... she is looking at me like ...does he really think he is 22 lol.... I say "Alex.. tell her how old you are really...  he says "19"....OMG... He doesn't understand that this is an evaluation of how much he knows about himself and how many answers he gets right... I think he gave her two more false ages before I got him to be serious and get us through this evaluation!  He actually did OK in her office without the water deal... well... then next was Physical Therapy... Tonia.. he never had her in day therapy but he recognized her from before... now he was ALL OVER the place... emotionally... brain went OCD again and he was irractic, not focusing... however if I think about it... Allison had him isolated...one on one... Physical Therapy room is a room full of people... alot of distractions.... too many other things to focus on besides himself or task at hand, lol.  I ended up leaving the room, thinking this may be better for him... I think it helped when I left... he did some walking, stretching, transfering from chair to mat... etc.  they just wanted to see where he was now since his last surgery and evaluate what he needs to work on now.


From there we leave and head to Target for a few things... stopping at Checkers on the way to see if we can get Alex to eat.  All he wants is small fry and cup of water... imagine that,lol.  I say he can have a cup of ice with the fries... he can have water if he eats the fries... ok.  We get to Target... "Alex where are your fries?".. Alex says.. "I ate them".  I say.. "Alex, if you tell me what you did with the fries, I will give you an extra cup of water".  Alex says.. "I ate them".  I said.."Alex, say... I promise on the Bible that I ate my fries".  Alex says... "I promise on the Bible that you ate your fries"... hahahahahaahhahahaha... he cracks me up!  He said... "Where's the extra cup of water"... I said " you didn't tell me where you put the fries"... Alex said... "I threw them out the window"!  And that's the way we play our games!! 

Today at home has been trying...we finally got him settled on the sofa... watch the movie "GOAL"... if you haven't seen it... you should watch it... great family movie... a feel good movie!

Miss Bonnie brought us roast, potatoes, corn casserole, biscuits, chocolate cake... OMG... it was fantastic!!  THANK YOU MISS BONNIE... you out did yourself and I can't tell  you how much I appreciate dinner ... especially on days like today! 

Alex will have therapies on M-W-F... hour long sessions... I am positive we will see good results and will continue to pray about it!  I asked Alex to go into this with a positive attitude and I feel like he will be good going into this... we will get some structure and plan back in our routine and we will be back to superman speed recovery!

PEACE~LOVE~N~THUMBS UP!

Lisa

ALEXANDER IS BACK!

WOW!  What a whacky day with Alexander we had today!  Randi, Aaron, Alex and I headed out this morning to drop off some papers for Alex's upcoming Botox procedure and head to the mall to exchange some clothes for Alex at the Avenue's mall as he has lost weight again and I needed to return some shorts I just bought for him.  Once we got to the mall.... ALEXANDER came out!  Is it because of all the people and the over stimulation???? HECK IF I KNOW!  Alexander was all over the place, crazy, whacky... outta control... verbally abusive... just down right UGLY!  He hadn't eaten anything so I let him choose... we go over to the place that sells bourbon chicken (which is what he wanted)... he sampled the bourbon chicken and the honey chicken and both he SPIT OUT... too dry.  Sooo we moved onto the pizza... he finally decided one piece of pepperoni pizza... got to the table... TOO GREASY... Randi takes the papertowl and dabs the grease off... not good enough.. not going to eat the pizza.  We met up with Gabi and Miss Karen... remember our little friend Gabi from Brooks Rehab.. they are now residents of Jacksonville!  We enjoyed a sit down with them... well if you want to call it that since Alexander had us here and there... bathroom... water... you name it... but we enjoyed catching up with them and "Alex" was actually ALEX with Gabi... touching her and giving her hugs... just really sweet with Gabi.  Alex seemed to be more obsessed with the whole water/rinse/spit thing today at the mall... I ended up cutting his water supply in half as a consequence to his actions today... once he got the water ... he would just drink it all within like the first 20 minutes.  The 16oz's has to last him an hour... not working lol.  But he will learn the hard way...one way or the other, lol.  I will say that Alex is truly LUCKY that Randi and Aaron truly love him because if he weren't my kid.... my behind would be long gone by now, lol!  KUDOS TO RANDI AND AARON... I love ya'll and thank you for putting up with his behavior!!!

Tomorrow we will be going to physical therapy and occupational therapy for a 30 minute session of each... I'm not impressed but will take whatever I can get at this point and hopefully Thursday we will get more time... will wait and see how all this is going to pan out and if I need to explore other options.

On a good note.. BUILDERS CARE came out... we will be beginning the renovations for Alex within the next coming weeks... YAY!  Looking forward to that very much so!    Of course Builders Care is a non profit organization that does things like this for people with special needs and certain circumstances and always needs volunteers and/or suppliers.  We have a certain budget to stay within as the Jaguars so GRACIOUSLY donated money in order to meet Alex's needs but if anyone of my followers has connections with - laminate flooring, tile, pavers, concrete or fencing- please get with me and maybe it will help offset some of the costs that Builders Care has to make it all fit together within numbers.  Mr. Chris from Builders Care said not to worry about it....what doesn't fit in the budget we will just cut out.... but I want to make sure that all of what Alex wants is taken care of with the budget we have and if we have connections that can maybe offset some of that cost ... then I want to help!  Alex will finally be able to wheel himself around the house once we get the flooring put in.. YAY!  THANK YOU GOD!  Once we get his bathroom renovated... he will be able to sit in a shower and shower himself... YAY....THANK YOU GOD!  Once we get the back patio extended and sidewalk installed to the backyard....Alex will be able to hang out and BBQ with us... YAY!!... Not that lately we want to be outside with how hot it is...BUT... there have been a couple of times he has wanted to sit outside with us... and it just is next to impossible with our furniture out there and no ramp out back.  BUILDERS CARE... along with our AWESOME JAGUARS... are making this possible for Alex!  He was following Mr. Chris today asking a million questions!  For one.. telling him that he needed a hot tub and that it would help out with his progress!!  HE WAS DEAD SERIOUS!!  Sometimes it's all the mindset ya know??? His brain... it's a quirky thing!

Well.. both Alex and Alexander are fast asleep so I must get in bed myself..... he still isn't sleeping thru the night so I am exhausted most of my days.. lack of sleep and dealing with Alexander will wear anyone FLAT OUT!

PEACE~LOVE~N~THUMBS UP!

Lisa

THE DEVIL IS AT IT AGAIN......But I'm on it... He ain't winning!

Sorry I haven't blogged in days... before I knew it, time had slipped away and I now realize it has been days since I have given anyone updates.  My birthday was Saturday and my precious friends gave me a luau swim party with a great turnout... even Alley Pooh got in the water and enjoyed himself!

Today was our first day back at therapy and of course the craziness begins!  Alex hadn't gone to the bathroom in 10 days... stool softeners were  not working... broke out the muralax last night and it went into full effect this morning as I was getting him ready!  Rush to the bathroom...make it in time... but it took about 15 minutes out of my morning ritual and I still had to go to Firestone to drop off Chad's car as both rear windows decided they didn't want to roll back up and needed new regulators.  Thank God Randi, Carly, Nick and Aaron all helped me get his stuff together last night so that I didn't have to gather all the stuff this morning or else that would have just sent me over the edge, lol.  Get him dressed, out the door, in the car... down the road to Firestone... wait in line for 10 minutes, get it squared away... drop it off, head to therapy.  We got there in record time, on time... thanks to summer here and no school traffic!  Get him in the chair... insists on putting on his brace so he can walk in the door, Carly grabs the wheelchair, leg rests... Randi grabs his backpack and the suction machine... we are heading in the door.  Alex all the while is drinking water, rinsing mouth and spitting in cup... enter the hallway... get to the day room, push him up to table and the devil begins his work!  Alex had been irratic already this morning because his schedule was changing and new routine was setting in again since we had not been to therapy in 2 weeks.  He is all over the place, leaves the table, wheels over to the refridgerator... then onto the sink, dumps out his spit cup, fills his spit cup with tap water... DRINKS the water in the cup.. I finally realize what he is doing... take the cup... trying to divert him etc.  Meanwhile... I look at his caregiver and explain that there are some things I need to go over with her since he has been out...ie. suction machine.. "thick it" stuff for liquids etc.  Without going into the account of things and how I felt this morning or rather how "they" made me feel this morning... long story short...We certainly don't want to be a "problem" or "issue" to anyone and so Alex is not going back to day therapy.  "Alex has had so many medical set backs".... No matter how hard I try or which way I turn... someone... the DEVIL... makes it always so that I am getting kicked in the face.  HOWEVER.... he is NOT going to win this battle... I had decided when I left today that maybe it was just best that Alex does outpatient therapy... couple times a week until he is healed and noone has to "deal" with what I go thru every day!  He may not be in day therapy, but HE WILL GET what HE needs even if I have to hire his own physical therapist and occupational therapist to work here with him!  I will not let the devil win... I will not let anyone tear down what I have worked so hard to achieve and I will see to it that Alex gets whatever it is he needs!  ALEX WILL COME OUT ON TOP NO MATTER WHAT!  I'm not sure what or how many times a week Alex will get all the therapies he needs... but I will do whatever it takes to make sure he is getting the repetition that he needs in order to continue with progress.  I really thought today was the day and was looking forward to him getting back in the routine and back on track. Not so much!  Sooooooooooo, no more day treatment as of now... Wednesday he will begin out patient therapy... we will make the best of it! 

Alex has been practicing walking more and more... wanting to walk to the bathroom or certain places... he is becoming more confident with his walking and I love the fact that he is taking the initiative to do so.  He was being a little showboat at my birthday party :0)

Please keep the prayers coming... once again I feel like I am climbing another hill... just trying to keep afloat and make the best of what is to come!  Alex has been getting better with his throat... he has not had near as much mucus and it is getting easier for him to swallow certain liquids once we thicken them up.  He is losing weight... I can tell in his face for sure as well as his "rolls" are thinning... not as much flab lol!  He isn't really eating much... I have to bribe him to eat ... but we are making it thru... surviving as best we know how!  I keep checking his temp just to make sure he isn't getting dehydrated... he isn't as obsessed with the water spitting deal as he has been... slowly we are trying to wein him of this obsession.. OBVIOUSLY, lol!  The more he can start drinking and swallowing... this will lessen the obsession and need to keep his mouth hydrated.  Can't wait until July 8th when we go back to the ENT to find out what is going on in that throat and if it's healed enough for that trach to come out! 

Lot's of great things to come... Alex IS ready for whatever comes his way... ME, HIM and JC.... WE GOT THIS!!

PEACE~LOVE~N~THUMBS UP!

Lisa

PS... A SPECIAL SHOUT OUT TO..... RANDI, CARLY AND AARON... Ya'll are awesome and I can't thank you enough for all you do on a daily basis... housecleaning, laundry, dishes, cleaning out the fridge, grocery shopping, Alex sitting, Alex changing... go, go, go....TEAMWORK... we make a great team and I thank you so much as you make it to where I can actually SIT DOWN and hang out with ya'll!  LOVE YOU!