Prayforsantana – A Courageous Boy of a non-fatal Drowning

T minus 9.5 hours…

Heartbeat… double time.  Beads of sweat.  Gasping to take a breath.  Striving to stand balanced.

This is a description of my anxiety.

in less than 10 hours, Santana is going in for Back surgery #5.  #6 if you want to count when Plastics went in and covered his screw after months of exposure.  Total… This is Surgery number #9.  And his 12th time being knocked out under anesthesia.

The good thing is… He is a fighter.  He comes off that vent like a stud!  When they thought he would never take another breath on his own… he jumped off and blew em all out of the water. He is one tough cookie.

My bionic boy is getting all his hardware removed.  He did not get a full fusion so this could be a negative effect in the future.  The plan is to leave it all out and in a year when ALL infection is out of his body, we will talk about doing the fusion.

I would NEVER recommend  the growing rods.  I wish I would have just done the fusion.  But truth is… he was too young.  That was over 2 years ago.  But now. I am ready.  If I chose to go that route.  I am not even sure I want to put him through an 8 hour surgery like that.  Right now… I just want to enjoy him.  Every last drop.

My friends in Australia are spending their last days with their 12 year old Non fatal drowning survivor.  It is so sad to read the posts and see the pictures.  To be mentally prepared and watch their son fade away right in front of their eyes.  The family is so beautiful and have inspired THOUSANDS.  Not to mention, they have started the Samuel Morris foundation, which alerts people about water safety and drowning.  Just an amazing family.  Please pray for them.   The anxiety I am feeling is nothing compared to the pain they have.

I honestly didn’t think Santana was going to pass surgery clearance from pulmonary.  The day before his appointment he was using 4 liters of oxygen.  Coughing a TON. Needing MAJOR suctioning.  Prayer works… it turned around in 24 hours!  He was clear as EVER at that appointment.  It was first thing in the morning and that is usually his WORST time.   Of course.. tonight he was struggling a bit.  But I believe he will still do really well.

This kid might not be filled with Titanium after tomorrow but he will always be my man of Steel.  My superman.

Please keep praying!  I will be updating his facebook as soon as I find out any information as surgery comes along.  Please pray they get all infection out and this is the last of it.  Pray his spine will stay strong for the next year until we figure out how to keep it off his lungs.  Pray for the Morris Family.  Just pray.

MOVING Forward

In the last year, so much has happened.

Our AMAZING OT has been working with Santana to strengthen his wrist.  This is why we are always painting and playing the drum.  With that strength, we have taught him to sign yes.  We tried blinking but that is NOT accurate.  But signing yes is something!

OT Melanie painting with Santana, along with her students Kelsey and Natalie.

With that, we have been able to start using a switch with an iPad. He is showing cognitive responses.  His AMAZING speech therapist decided instead of just letting him use the switch to activate something… let’s try to see if he knows what he is actually doing.  DUH!  Of course.  6 out of 6 times he matched the animal to the sound!  And if he didn’t respond fast enough…  He WAITED until the option came back around.  WOOOOO HOOOOO!

Using the iPad with his Speech therapist, Brenda and his OT Melanie to make choices of what he wants to do.

 I am sure his AMAZING Music Therapists helped him learn all those animal sounds with her puppets and songs.

Music Therapist Denise doing what Santana loves best.. Guitar and singing. Fitting to the name!!!!

Last week his other AMAZING speech/feeding therapist got 22 swallows out of him!  That is right!  We discovered he LOVES Mango Dum Dums  and Orange soda!!!!!   She really wants another swallow study done.  I got a text from her Saturday mentioning that they have mobile units to do the study and if we could get insurance to pay then she can help out.  That would be awesome.  These guys care so much about Santana and his future.

PT is still amazing but we have not gotten far with it because of all the back issues.  This caused huge setback, not to mention that we are getting MAJOR rotation which hurts to look at him.  =(

I am also lucky to have 3 AMAZING nurses who follow through with the therapists and help him with improvements.

The biggest ordeal was the ugly initials M.R.S.A.  It took a big chunk of my year.  A lot of worry to whether or not Santana will make it out with his rods still in his back.  But he fought through it!!!

This put a TON of stress on James and I as I spent 2 days a week going back and forth to Phoenix for his appointments and was exhausted and cranky.  In and out of the hospital.  I was consumed.  Spent more time confiding in others and not him.  Things got tough.  But God showed his grace and brought us closer together than ever.  We take one day at a time and have learned to have fun through the difficult times.  Of course my AMAZING family and AMAZING sister-in-law watching the kids so we could get out has helped a TON!  This shows that with GOD, ALL THINGS ARE POSSIBLE.

Here we are just over a year of all the MRSA fiasco.  And here it goes.  We have been fighting a “blister” on his back for months now.  PCP says go to ortho, ortho says go to PCP.  SOMEONE HELP MY CHILD!  NP at PCP drained and tested the fluid to find out it is negative for MRSA.  After 10 days on Bactrim and Augmentin… we are still fighting this ugly thing that filled up within days.

FINALLY got into ortho.  He gave us Silvadine cream to put on it for a week to see how it is doing.  EVERY TIME we look at it… it looks different than the last time.   Basically our options are surgery to locally look at blister and see what is going on.  Or in favor of the doctor.  Take the rods out.  Not touch him for a year until all infection is out of his body.  He is HIGHLY suspecting that the infection is deep with in and it is surfacing through the blister. This is why it was negative for MRSA, it hasn’t come to the top yet.  he has been running a low grade fever for a few months now off and on.  Now he is 99.6 as I type this.  Creeping up.

Santana also was casted for a brace again.  Even though his rods are internal, this will give him more support with all his rotation he has.  We might need it for the real reason anyway…

Looks like a torture device. I am shocked at how straight he looks here. It shows it is all in his pelvic.

This casting shows how HORRIBLY rotated his back is. =( The area on the right will soon have break down because when in the chair or on his back, it holds all the pressure.

It is fun having all this stress lay on me, wondering if I will be camping out PCH soon.  I do know ortho said he checked his schedule to see what was coming up.  So one way or another… Santana will be going in for Back Surgery #5!

All this on top of a VERY tough decision we have made.  Today we did something we NEVER ever thought we would do.  That house we built and designed ourselves to fit Santana’s needs and works PERFECT for his needs.  Well, we just stuck it on the MLS.  After a TON of thinking, we decided we wanted to move to North Phoenix/North Scottsdale area.  We have no idea where.  And we will NEVER find a set up like this or have the GIANT yard and house like this.  But what we do know is this.  James will save 3 hours of driving (4 if he leaves too late) every DAY.  We drive 49 miles to church  Weds. night and Sunday morning.  Jett is going to be in Jr. High group soon and it is SO important for him to not only go to church but get involved and make friends.  Not to mention, they have a cool sports program.  James is heavily involved in the church also.  I want to be… but Santana and the distance makes it very hard.  Not to mention, there are a lot of couples we could hang out with more up that way.  We don’t have couples we go out with down south by us… and it is a LONG drive home after a date up that way.

Before we listed.  I found the house I wanted.  The neighborhood I wanted.  Close to James work, church and my dads.  I WANTED IT!  But 2 days listed and it sold.  I was heart broken. I cried for a day.  One thing that did do was get me motivated.   For a whole week, with the help of my step mom, 90 yr old grandma, and my dad.  This place was half way packed (decluttered), paint touch ups, and cleaned… even the walls.  And now it is listed.  Now that it looks perfect, we are getting rid of it to start a new chapter in our life.

Those AMAZING people I mentioned above is what hurts the most in this decision process. They are the top of our con list.  I could also add Chandler School District and our Support Coordinator Erica Tyler.  Simply amazing.  But I get teary just to think about leaving his therapists.  They found Santana in there.  They believe in him.  They have brought out things we never knew he could do.  They made him have his own voice.  And they will be gone. And I can not help but wonder if Santana will continue to strive or if this is it.  If he doesn’t get the help like he has now, he may not ever make more improvements.  and this thought angers me.  All his support team is like family to me.  It truly breaks my heart.  ESPECIALLY WHEN THEY GIVE ME CRAP!  (cough cough) Melanie (cough cough)

But I do however feel that if we are putting God and our family first and get more involved in our church, everything else will come together.  It may take LOTS of time.  But I just have to believe we are doing the right thing.  We didn’t just make a quick decision.  We have been praying about it for quite a while. The mixed emotions have made me VERY ill.  But I am at the point that I KNOW we are doing the right thing.  (deep breath)

So that is what has been going on in the Black house.  A little peek into why I haven’t blogged as much.  Between burned relationships, fighting for Santana’s needs, and strengthening my marriage… I have been consumed.  I didn’t want to write and pretend everything was okay.  Because all of last year was not okay.

Now we are MOVING forward.  In so many ways.

Getting through the Flu Season…

Once again, I have let my blog go.   I am really not into blogs.  Social media has made it easier to throw out an urgent statement through my finger tips at any given time… as long as  I have my phone.

Who has time to sit and type out a blog when bits and pieces of my life has been thrown out daily in under 140 characters?!

But I think of my Grandmother who checks this page every day and night to see what’s going on.  (HI GRANDMA K!!!)

I took a vow of silence.  At least if feels that way.  I kicked myself off facebook until I can gain self control.

Yeah, I am on it WAY too much.

But… That is not why I got off it. I LOVE facebook.  That is how I keep in touch with my friends and family.  You know?  A telephone call?  Who does that?  Luckily I can still feel the love and have gotten texts from those who care.  =)  However… WHY did I do this???

I need to finish my weight loss journey and my biggest motivator was logging off facebook.  That is right.  I deactivated until I lose 10 lbs!!!  I was doing GREAT… then Superbowl party happened, a girls weekend this weekend, my mom coming into town, and Santana’s Birthday.  That is right.  I do NOT have self control to make it through these events!

I miss my friends SO MUCH and I know I have missed some juicy stuff too. (Facebook:better than a gossip magazine)  So I MUST FOCUS!  I really need support so if you are on My Fitness Pal… Please add me!  Prayforsantana!

You can still follow me on Instagram!   I am random. Mostly the kids and My big giant Great Dane pooches.   Also, some updates are on Twitter.  You can see the links to these in the sidebar.

Speaking of Sidebar.  When I was adding Instagram I was like… WOW! I need to consider updating the blog design.  I love it but Santana looks so young!!!!  Time is flying by so fast.  He is turning into a handsome young man.

Okay…  Enough about social media because no one really cares… You are all here for SANTANA the Man!

Santana has been doing AWESOME through this NASTY flu season!  In December he was hospitalized for Pneumonia but he was doing AMAZING through it I demanded to go home.  He was sick 2 weeks later but fought right through it.

A few weeks ago he had some funky rashes going on and at the same time a blister on his back.

Funky Streaky Rash

Rash on Arm… all this the same day…

Foot was swollen the day before… related? Who knows…

Should I repeat that?  A BLISTER ON HIS BACK!

It’s bigger now….

The rashes were quick and gone.  But the blister is now 8cm x 8cm and 3cm high.  It was squishy like fluid but now it is hard.  No one seems to be concerned about it.  Just me and the nurses.  Doctors and ER has advised us without a fever it must be nothing.

(ERRRRRRRRRRRRRRRRR…break noise… rewind….   .gnihton eb tsum ti revef a tuohtiw su desivda sah RE and srotcoD….

Okay… Remember when we had the GIANT MRSA infection this time last year?  (scroll down about 4-5 entries… geez…I need to blog more)

Okay… Well… Only ONE (1) (Uno) time did he peak a fever of 104.7 and then NOTHING. So nothing they almost didn’t do the explore surgery to make sure nothing was going on.  But since we were being held captive and the OR was scheduled they did it anyway… to find MRSA down to the BONE.

Just making a Point  (.)  maybe this point is better (!)

HOWEVER,  I don’t think it is MRSA.  It doesn’t look like Pus filled like the previous infection.  I am not sure what it is.  But it is getting more and more solid.  So now we wait.  And watch.  One suggestion was maybe a stitch that was making it’s way out.  WHO KNOWS.

Other than that funk.  Santana is doing AHHHHHHHH-MAZ-ING!

Our new speech therapist.  Well… 6-7 months now.  Has discovered he can use a switch.  Not only can he activate play but he is showing consistent Cognition skills!  That is right.  First time we decided to do a “test” type app… like what does the cow say and it scrolls through 5 different options… He got it right 6/6 times with the different animals!  I thought Fluke but there is no way it is fluke when he is doing it ever session.  Sometimes his reaction time is not fast enough but the amazing thing about it is… HE WAITS for the next time it scrolls the answer.  He uses his wrist to activate the switch.  We built up to that by first teaching him to sign YES.  So now he can have more say in what he wants to do.  If he doesn’t answer after a few tries, we move on to something else until we find what interests him.  He is getting an iPad communication device so I had everyone do iTunes cards for Christmas so we can load him up with apps!  Hopefully it comes soon!

He has also  become more vocal.  Seems like he decides to be vocal during church.  He has something to say!  It is too cute and I want to hear those coos more!  I love it.  Sweet music to my ears.

A few weeks ago he had a trip to the dentist that was 3 years overdue!  And they were impressed at how clean his mouth was.  They said generally special needs kids have thick plaque every 6 months from dry mouth and mouth breathing.  But Santana had VERY little to scrape off.  And he did AMAZING!  They were shocked.  =)

Santana getting his teefers Clean!

In other news… James did the PFA Rock n’ Roll Half Marathon!  Santana’s therapist conned him into joining her.  They both did it!  NOT ME.  I don’t run.  Unless something that is going to eat me is chasing me… I do NOT run.  Even then… I might chose to be eaten.  What is the difference?!  He rocked it and I can not be more proud of both of them!

James after his Half Marathon!

AMAZING ACCOMPLISHMENT!

James and Melanie (OT)! HOLDING EACH OTHER UP!

That wraps up  what’s going on for now.  When I logged on, I see that there was a draft from my last Near Drown Mothers retreat. AKA TRIBE.  Once I get on facebook again, I will gather pictures and finish that overdue entry.

And for those who THINK they saw me log into facebook…. No… I did get on spotify and it accessed my account.  Shows my will power… I won’t even PEAK at facebook.  I just want the music.  I am listening to the Acoustic version of Justin Bieber’s Believe Album.  I know… I am weird.  But I LOVE that album and I LOVE ANY Acoustic songs. Ooooo.. .but as I was uploading pics, there was a commercial for Casting Crowns Acoustic Album.  LOVE it!  Praise you in the Storm will always be Santana’s song!

OH!  Last but not least… family pic of us supporting the Ravens yesterday!  TEAM RAY LEWIS!!!!!!!!  <3 him!

Team Ray Lewis! And Team Epilepsy! And Team Drowning Impact Awareness! AND TEAM SANTANA!

Thanks for checking in!!!!!

Grandma Anderson Turns 90!!!!!!!!!!

I know I have been MIA.  Facebook has me sucked in like a Vortex and I forget to post here. But I know a few people have asked about an update and I met lots of people this weekend who follow my angel baby.  So Here I am to update.  … Wait. I take that back. I am not here to update on Santana… He is doing great… But something that is on my mind.

This past weekend, I took Jett and Tyree to Iowa for my Grandma’s 90th birthday!  Imagine what you can see in our country in 90 years!!!!   I originally was not going to be able to go because we had our last litter of puppies and money is tight.  But my dog only had 4 puppies and tickets were a steal… even with a weeks notice.  So off we went.  The nurses and James took care of Banana boy. I sure wish James could have gone, but with his Pneumonia he endured a few months ago… work is VERY Necessary right now.

Look Out IOWA... Here we come!

I have to say.  I am SO happy I went.  Lots with through my mind last night as I was unpacking.

First.  This life with Santana makes it difficult to fly back home and see distant family.  It is A TON of work to take him and … would he really be happy being dragged all over the country?  So I have missed a ton of gatherings and what not. My eyes filled with tears at the thought of how much my life has been altered and how much I have missed…. including my ONLY siblings wedding.

My Brother and I with grandma's from both sides.

Grandma "K" (moms mom)

Second.  Even though family can be a pain in the rear sometimes.  I realized it is because they care.  They wouldn’t be so opinionated if they didn’t care.  I still think us parents of disabled children put up with a lot of misunderstanding of our lives from both family and friends.  But never the less.  Family is family.  Friends can cut ties with no common bond.  Family will always have other family members in common and blood.

Anderson Family... minus James and my cousin Shauna and her kids and grandbaby. =(

It is so easy to get caught up in life.  We all move different directions.  Jobs are demanding.  Flights are expensive.  But there is NOTHING like getting family together.  And bringing in the next generation of kids to wreck havoc!

The next Generation of "Chad and Eric"

Playing in the Preschool Room during the Celebration

A night of playing Sardines (a form of hide-n-seek) and board games was so much fun and so much needed.  Not often do I get to go out and have fun. But what more fun than to do it with your cousins. It wore Tyree out.  He didn’t even make it up the stairs when I got back to my Grandma K’s.  I saw him start, but went downstairs to get laundry… Glad he didn’t fall!

You win the boogie Prize... take your pick!

He can apparently sleep anywhere

Family is so important.  And it is so easy to let it go.  And I really dwelled on this last night because after I got in from the airport I got a call that my step grandmother, age 93 had passed away.  I did see my step cousin/bestest friend before I left for the airport, but did not make it to see my grandma.  I was advised to keep my memories. But it is such a good reminder that things change.  People don’t last forever.  And y0u never want to go a day where you just might regret when someone is gone.

My BESTEST BUDDY/Cousin

I was so happy I did, last minute, get to make it to lunch with my step-cousin Ryan.  He is one of my favorite people.  He is a loyal friend to me and we go through times of texting and shooting the breeze (when life with our kiddos don’t get in the way). He has been great for me and my heart goes out to him and the rest of the Kinart Family.

Great Uncles are just as fun as Uncles!

Whatever it was... it was Funny...

A Friday to Monday trip is not a lot of time when there are so many people you want to see. I also thought… wow… even as a 32 year old.  Divorce that happened 30 years ago could still have an impact in my life.  It is so hard to skip family to family and not want to hurt anyones feelings.  I hated every second of worrying about that.  And it stinks. SO I do hope that everyone understood and I tried to split my time the best I could.  It is a lot of pressure trying to make those visits happen and I truly tried my best with what little time I had… and rowdy boys.   I wish I could have a week.

Grandma K and the boys!

Grandma K. and Me!!!!

Below are pictures from the trip and some from my Grandma Anderson’s 90th birthday celebration!

I do have to update on my last Near Drown Tribe retreat and I will do that as soon as I have time.  Posting all these pics is exhausting!

And to all those LURKERS who admitted they lurk here or Santana’s FB page… Drop a comment by sometime!  People like you is what helps keep us going!

Getting Ready for the Big Party!

Decorating. Give Tyree some more... maybe he will float off!

Lovely Aunt Cheryl and the 90 year old Birthday Girl!

Jett running the Slideshow!

Tyree waiting for all the People!

Sis in law Meredith, Cousins wife Crystal, cousin Tonya

Great Aunt Bettie singing to Grandma!

Trouble 1 and Trouble 2 (2nd cousins)

Calvin Hull... 2nd Cousins

Grandma K with Ginney

Tyree Hanging on Granny

Aunt Cheryl, Uncle Kyle, Cousin Eric and his wife Crystal

Tyree Lovin' his Grandma K...Hey kid... she was mine first!

Grandma was DONE with the flashes.

Cousins!

Cousin Eric and his wife Crystal

Father Daughter

Uncle Kyle, Aunt Cheryl, Granny, Dad, Step Mom, Darla

Eric Pouring Grandma's famous Sweet Tea!

Grandma and Uncle Kyle at the Machine Shed

What?! Tyree isn't blurry? Maybe cause he formed a tornado in the world around him!

Goodbyes are never easy!

Just another update… no creative title..

Times can be so frustrating.  I have been putting up so many things on the facebook garage sale sites trying to make my spending cash for the Near Drown Tribe Retreat coming up next week.  No bites.  But others have wars trying to get their stuff.  Ugh.

Then our AC went out in living room.  DOUBLE UGH!

On a good note.  My friend who is raising money for me to get the software to do medical transcriptions reported that she has raised $500!!!!!   I am half way there.  Once I get it, it will still take 6-12 months to go through all the training materials.  Oye.  I need to get on it fast.   This is the most perfect job, that way I can still pause life to make it to Santana’s appointments.

I wanted to also announce that I donated to our Wish Granters child, Jette.  That family is so deserving.  For those who bought the scentsy fundraiser… you should look on Facebook… Jette’s Journey.  You also helped this amazing boy who relapsed after 4 years in remission.  Please pray for the Davis family!  If you can help them out, they have a link on their facebook page.

James is still trying to get over pneumonia.  He seems to be getting worst again.  He has a follow up appointment this week to check out his breathing pipes.

Tyree decided to spike a 104.7 fever.  But apparently just viral.  That was on Friday night.  He was up and down all weekend.

I am just doing all in my power to not get sick and not let Santana get sick.  NEXT WEEK… he goes to Ryan House and I go on my Mothers of Near Drown Retreat.  WOOP WOOP!  I can’t begin to tell you how excited I am.  So… WE MUST STAY HEALTHY!

Keep praying for all my boys!!!!  I appreciate it!

Trying to find the blessing in the storms…

Sometimes life is full of disappointments.  But it seems there are always blessings found in those times.  Sometimes you have to look harder than other times.

Not last weekend, but the weekend before, we were going to  head to Los Angeles for a quick trip with the whole family. James had Sunday tickets to the Dodger vs. Dbacks tickets and they were employee tickets… so of course killer seats.  Well, that Friday night Santana decided to peak a 102.5 fever and we didn’t make it.  The hidden blessing… I really need new tires on our van.  They are getting pretty smooth… could have been bad.

That Tuesday following, James came home really sick.  Went to the dr the next day… I Know it is bad if JB is asking to see a doctor. Doc said it was Bronchitis.  Started him on Cipro.  But then Tues. he asked me to meet him at the urgent care.  UH OH… this isn’t good.   He was having trouble breathing.  His o2 was 94%.  Slapped an EKG on him… but that was normal.  They did a breathing treatment and his o2 went down to 90/91%.   I had to leave to get Tyree from school.  They did a chest xray to find out he had a severe pneumonia.  They did another breathing treatment and gave him a roesephin shot.  He had his abx switched.  He was told NO WORK till at least Friday.  Well… He is on the couch in sweats and a hoodie with a fever.  NO way can he go to work.  I can’t sleep cause when he is awake he hacks like he is hacking out a lung.  When he is alseep…. I keep feeling his chest making sure he is breathing.  I am extremely worried for his health.  I have never seen an adult this sick.

Today I had a conversation with God cause I am at breaking point.  Emotionally I can’t handle this.  I feel so helpless.  Santana, I can do all sorts of things to make him better, James … I don’t have a lot of options.  It’s never a good thing when I ask him what I can do an he replies he rather be dead than deal with this.  He chokes till he can’t breath.  It’s like a fish out of water.  My plate is overflowing with yucky stuff I don’t want.  But God showed me that he is keeping me healthy.  There is no reason I shouldn’t be sick while helping James while he hacks and suctioning Santana, whose secretions are MUCH thicker than usual.  If  I go down… Jett and Tyree are on their own.  SO I am super thankful that God is keeping me healthy to take care of everyone else.  Even while staying on my diet and training to run. =)

Times are tough right now.  But together we will make it.  I really need to find a job… but it is next to impossible with all of Santana’s appointments.  And I can’t promise I won’t miss work cause we never know when fragile boy will go to the hospital.  A few people have told me of someone at our church that owns a business doing medical transcriptions and employees do it from home.  GREAT!  You get paid what you put in!  It’s ok to take off for appointments.  But Ohhhh…. it costs $995 for the training… and that is church member pricing!  Oye.  But so wonderful to know it is legit and not a scam company.  So I am hoping we can get some money to start that cause we are really struggling.  And now with missed work… me bringing in income is crucial.  It is stressful but the blessing found in this situation is, my friend from church, Tyree’s teacher and was Jett’s when he was that age, said she would collect money and try to fundraise for me to get started.  When she told me this I was totally thrown off.  Cause I had put it on the back burner… I mean… forgot about it cause NO way did we have upfront money.  So I looked at her like she had 3 heads.  Then I was reminded.  It brought tears to my eyes that she had been thinking of me.  Again… a blessing during our financial storm.  Here is a comment she had put on my status when some friends had inquired about helping.  If you are interested in helping… It is so much appreciated.  I can even pay back as my pay check starts…

For those who have asked, I just firmed up the details so that we can move forward to help Lindsey and her family. We have the okay to send the donations in any format that works. The name of the training company is Deborah’s Touch. I will collect those donations via mail (3146 E. Windsor, Phoenix, AZ 85008) or at church, whichever is easier for everyone. Thank you so much for helping make this happen!!! ♥ – Robyn Ratcliff

Thank you to all who ordered Scentsy products!  There was over a thousand dollars in orders and our 20% brought our fundraising for Santana to $279.  More than I expected in times like this.  I truly have the most supportive friends and readers.  Thanks for checking on Santana.

Can you please pray for James.  We all need rest and peace and he needs some deep healing!  Thank you!!!!

Fundraiser for Santana…

First I want to let you all know that Santana has not had anymore bleeding episodes.  He has been good and spent the weekend at Ryan House while we took Jett to Los Angeles for his birthday and stayed with my mom and step dad.  Tyree stayed at my dad and Step moms for the weekend with lots of visits to see Santana.  It was a great weekend.

Something I posted on facebook and wanted to extend it to everyone else.  We are having a Sentsy fundraiser for Santana. If you don’t know what it is… you are missing out.  They are WONDERFUL smelling candles… on warmers… no flames.  Which is GREAT for a house full of oxygen!   They also have lotions and laundry detergent.  One of my friends/fellow Mighty Mom, brought Santana their stuffed monkey with a clean linen sachet in it.  It smells sooooo good.  I love it!    My hopes is that every time you smell a fragrance from Sentsy you are reminded to check your pool gate and make sure it is locked.

My friend who sells it is giving Santana ALL her profit!  I am excited about this one.  Not only does it benefit Santana… but most EVERYTHING is 10% off this month!  So it is a good time to try it out!  I would love for anyone in Arizona to come!  If you can’t make it this Thursday.. open house style… 6-7:30… then you can order  here…

https://jacarter.scentsy.us/Scentsy/Buy?partyId=97177623

You can visit the facebook event page for more questions…

https://www.facebook.com/events/421616714541977/

Or shoot me an email if you have any questions.

Thank you for your help!  We really appreciate it!

Make A Wish!!!!! … Then say a prayer…

If Santana had a voice, I think he would want the typical wish of going to Disneyland, driving a racecar, anything a boy would want.  But Santana doesn’t only not have a voice… he doesn’t walk, sit on his own, or eat.  So I think the sensation of Walking or riding a bike would be amazing for him.  So that was his wish.  To be able to do these things.

HOW IS THAT POSSIBLE?

The quadriciser machine made this possible!  As you can see in the youtube video, Santana gets range of motion he other wise would never get… at least not with out lots of people doing PNF patterning.

After a few years, our wish finally came true!!!!!  Custom built to Santana’s funky back and all!  Larry at Quadriciser added some things here and there to make it perfect for Santana.  We have a lot of adjusting to do.. especially in the legs, but this video will give you an idea.

Can you imagine on being able to move for 5 years and getting a whole new movement?!?!?!   He didn’t cry or complain once!!!!  He is a trooper!!!!

Thank you so much Make A Wish.  God’s timing was all in this too.  It was supposed to be a room make over.  Quadriciser was OUT of the question since it is medical.  But a new manager came in and made it happen!  I am so thankful for our granters Duane and Nicole and Carlos at the Arizona Chapter of Make a Wish.

Thank you to Larry at Quadriciser for going the extra mile to make this seat awesome for Santana’s awkward back!

…OK… so after this blog had been written and I was waiting for video to post… This is what Santana Coughed up…

Santana Coughed this up...

Dark Blood coming from Stomach. Bright red around tube.

August is Drowning Impact Awareness Month... WE ARE AWARE...

We finally got closure on Santana’s back! It was a very long 6 months. I am praying we are out of the woods. Santana is still being treated with oral antibiotics, Septra. He will be on this for a long time. One doctor told me there is an article in a medical journal about considering to leave patients who have been exposed to such a bad MRSA case on the abx for life. I think we will get off this… hopefully. I was just happy to get rid of the IV PICC line. I feared contracting another infection!
Since the last post, he did end up having to get a Flap put over by a plastic surgeon. We had about 5 weekly follow ups because of drainage and continued use of the wound vac. After it was all beautifully closed, the Plastics doc said… I am really relieved we did it. I honestly didn’t think it was going to take over the metal like that. Chances of saving these rods were really slim! So it was prayer and THE Great Physician that healed this in such a way that we could save the hardware!

What could happen if we would have taken the rod out?

A. We would have gotten rid of the infection MUCH faster because it likes to hide in the metal and drops down in the tissue when it gets cleared out and starts over. B. It would have had a HUGE negative impact on his lung function. While his back is not straight with the rods, it was enough to get off his lungs so he isn’t using continued oxygen like he was. So he would have slowly compacted his left lung.

There is a concern on one part of his back that is far from the incision. The spine and rod push into it with his curve and rotation that plastics said the skin is really thin right there and it is only a matter of time before the rod breaks through it. At this point… One thing at a time. I don’t want to sweat it. I do know that Santana will not undergo surgery for a VERY long time if ever. He is an EXTREME high risk for MRSA. Which worries me cause he will be due to get his rods adjusted soon. And I think by not adjusting last time is why there was so much damage done cause there was no where for the back to grow.

Below is a little photo diary of what was left of his healing. I had a lot more pictures but it was a VERY slow change.

We have been through a LOT this year.  This MRSA infection could have wiped him out completely.  It was very deep and down to the bone.  But once again, Santana gains strength… kinda like the Hulk… and pushes through again!  Santana and God’s work never seizes to amaze us…

My dad and Step mom surprised me by coming and supporting.

Santana Representing the "Purple Ribbon Club" He looks so handsom

Speaking of SEIZE… That’s right… Seizures are back.  Not terrible… but they are back.  He started them again right after he got glasses.  Not sure what is going on there.  We are supposed to be getting a 48 hr. EEG done.  Hopefully that will for sure tell us that yes indeed we are experiencing seizures… or better yet… that they are not seizures.

One thing I have always said about what happened to Santana was that I felt like I never had closure.  It was like my brain could not grasp that I left him as my healthy smiley boy to spend the weekend with my dad and step mom and a few days later I saw him lifeless.  I felt like not knowing what exactly went on…I have one story that was told to investigators, the other Jett told in counseling… that I couldn’t understand why I got back this new kid.

Well… God heard my prayers.  He gave me the vision in a horrific dream of watching video of him going into the pool.  It was replayed in my nightmare for what seemed like ALL night long.  I woke in tears.  And I was overwhelmed with emotions when waking up from this.  I wish ALL of it was just a dream.   But Seeing how it could have happened and what it may have looked like and where they laid his lifeless body on the concrete to try and breath life into him made me very thankful I wasn’t there.  I didn’t witness it.

This whole night of nightmares happened the night before I spoke at Phoenix Children’s Hospitals Water Watcher, Drowning Impact Awareness Month kick off.  I was approached by Tiffaney asking to speak, not so much on the tragedy of that day but what life is like with the boys after.  I was good and pumped and ready to go but my morning started in tears.  So I was a nervous wreck!  I have to say… it was VERY hard to get up after an EMT/Firefighter talked about 2 different drowning incidents he went to.  It was very hard to speak on it.  It was VERY hard  for him to hear that one has a life like Santana and the other didn’t make it.  That made me really sad.  Whether Santana was back to normal or a life like this… those first responders are still my heros and I love that they bought my baby some time.  Santana has taught us all so much!

I will post my notes from the kick off on another day… I know this is a lot of catching up I had to do.  I will try to be better at updating.  It has been brought to my attention that not everyone who follows Santana is on facebook. … Which is where I update if he is sick and what not.  I heard leaving some hanging with my last post didn’t look like the outcome was so good.  I am so sorry about that!  I will try to do those short updates on twitter so you can see it right here on the site in the sidebar.

I love my baby boy!!!!!!!

Talking to My fav... 3TV

Below are links to the newspaper stories and one news channel story.

East Valley Tribune

Az Republic

Tucson News Now

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Photo Diary of Santana’s MRSA infection from Spinal Rods

This is the break down he got at the end of 2011 due to the rod being off the spine and breaking through from the inside out.  Surgery was needed for months… but thanks to Pulmonary… it was put off…

January 25, 2012

This is a rash that was found under the tape after we took off all the gauze after surgery which was 1/13/12.  The rash could be tape allergy, or from poo that may have gotten in there… or…. was it a sign of infection?!   The other 2 look… strange… but clean…

FEBRUARY 1, 2012

Is this getting redder?!  Looks Angry… I better for sure be taking pictures… Did take him to the ER… But they let us go home with no worries.  =/

February 4th, 2012

Yup… this is not looking good.  PUS!  I put money down… MRSA.  I have had MRSA boils… they are pus filled.  It just has to be!!!!  SOMEONE LISTEN!

February 5, 2012

Too me this is getting progressively worst….

February 6, 2012

They cleaned it and put Zeroform on it to keep it clean…

February 7th, 2012

NOT GETTING BETTER…

February 8th, 2012

The surgeon put on a wound vac after seeing what is below… that night we went into the ER with 102.6 fever… FINALLY they will listen to me!

February 17th, 2012

Below is the pictures AFTER surgery.  That’s right.  On February 10th they took him in to see what was going on and do a clean out which is where and when they found a DEEP MRSA infection.  Before we left the hospital… the Peds doc had the nurses change the bandage and to MY HORROR… this is what was underneath… but she called the surgeon and he said it will be fine… we could go home…

February 24, 2012

And to think THOSE above were horrifying… how little did I know how horrifying it could really be!!!!   Below are the pictures when the Surgeon saw it for the first time… he said… YUP!  That is the rod!  Why did he say that… the peds doc on the floor said she THINKS she could see the rod… look at the pic above… IS THERE ANY THINKING ABOU THAT?!

February 25, 2010

Not getting better.  We are on IV antibiotics and heavy duty antibiotics…

February 26, 2012

February 27th, 2012

Went to the Ortho as we have been twice a week and the stitches came out and his back just popped right open!  You can see it is really hallow. I was horrified by this.  Never could I imagine that I could see his spine!

March 3rd, 2012

I took a picture EVERY time we changed the wound vac dressing… but after this pic there will be a HUGE gap  so you can’t see the slow healing… but it is indeed SLOWLY healing…

March 23rd, 2012

Look at all that new tissue!!!!!!

March 19, 2012

March 25, 2012

This is the last picture!  I took this today.  The wound nurse had to do an extra visit because Santana Banana had a HUGE blow out and poop got under the tape and on the foam.  YUCKY!  Tissue is coming up nicely… still don’t see how it will make it over the screw… but we shall see!!!!!    The length is shrinking!!!!  The width continues to stay at 2 cm.  The body is just plan AMAZING!

Thank you for all your prayers… God is slowly weaving all his fibers back together.  I didn’t think he was going to make it out of February… but God tends to surprise us with miracles every once in a while.  =)   We can use some extra prayers coming up.  He is going off IV antibiotics on the 29th… along with the heavy duty oral one… so I am NERVOUS… He will be on Septra for a LONG time so at least something will be in his system.  But is is nerve racking after we think we have saved the rod!!!!

I am so thankful his surgeon took the conservative route to save his rods.  His lungs REALLY needs these rods because without them, his lungs are compromised.  He has been AWESOME through all this!  Thank you Dr. Richard Shindell!!!!!!

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