Santana did awesome during the surgery.

The surgeon came out and to assure us the rods were in place….again… He said he picked him up off the table by the rods. That statement is nothing to an orthopedic surgeon….but we all cringed.

Santana looked awesome!!!!! I have a picture right after surgery but I have to get it off my phone to post it. He is on constant bipap so I have not seen all of his pretty face. And now that bipap has tore up his pretty little face with skin breakdown. He was staying 99/100% but today he decided to crash down to 86% with no rhyme or reason. So getting him off may be tough.

Another bad thing is I woke up to people coming in all garbed up. He was tested positive for MRSA. I hope and pray that doesn’t get into his wound.

Please pray for poop. It’s been 12 days. So I was just informed they are taking him off pain killers to Avoid any more constipation. Poor little guy. I am so worried about him.

I did get a visit from a fellow Near Drown Tribe member Shauna. Her son is Christian….you can click his link in the side bar and read about his miracle story. She brought me some yummy goodies and represented for the NDs!!!! It truly made my day!!!

James took the week off work so it is nice that the boys aren’t tossed to whoever during this time. It’s upsetting enough to have mom and brother gone and to be faced with someone different everyday doesn’t help either. We have ate a few times in the cafeteria so we got to go on somewhat of a date.

My mom stayed Saturday night. It was so much fun…like a slumber party. I have pics of that too….on my phone.

I have had to restart this entry twice due to losing connection….so I am gonna stop while I am ahead. Pray we get out of here before he catches anything else!!!!! My family needs to be together.

Fear Not for I am with You…

Fear grips my soul.  Like the night covering the earth in darkness.  The only way to see is a form of light.  The fear that wraps my soul can only gain sight with THE LIGHT.  God’s word.

I have been waking up really early with fear squeezing my lungs and I am gasping for air.  This morning I heard a calming whisper,

“Fear Not, For I am with you.”

It kept playing in my head.  Then my mind would drift to the information I heard at PreOp yesterday. And rapid breathing would start to set in and I hear it again,

“Fear Not, For I am with you.”

I called one of my closest friends yesterday, who knows already I am crazy, and I just splurted out my fear.  And then tried to justify… It’s okay… Jesus worried in the garden of Gethsemane.  He was begging God, his father to take this cup.  But this morning I pondered that statement and compared to my own situation.  The difference is… I am just worried.  I am not taking the time on my knees. It’s one thing to worry and it is another thing to pray your worries to God and call upon his name.

God didn’t promise life wouldn’t be difficult.  Or that we wouldn’t face life changing decisions or that we would just dance through life as if it were Choreographed. Things happen. Courses change.  The ground becomes unsteady.  And while that fear grips your soul and you stumble through the beaten path… Gods finger dangles down waiting for you, like a child, to reach up and grip him so tight to help balance and push away fear.

I didn’t write this for my readers or anyone specific.  These words were laid on my heart this morning.  As if God was reminding me to lean on him.  To BELIEVE.  I wrote it out so I can be reminded of the words that were deeply spoken to me.

Don’t get me wrong.  I still sit here typing and reminding myself to breathe out once in a while.

Santana has been through surgery before.  He has had disaster surgeries before ( like an artery and vein being cut).  But this is his THIRD back surgery in just over a year.  One in a life time is to much.  But 3 for a 6 year old is hard on a little body.  Back surgeries are risky anyway with the spinal cord right there.

Yesterday… after waiting over 2 hours past my appointment time to see the doctor… there was concern and a possibility that surgery may be canceled.  He took one look at his back and the sore is different than the pictures below… I will get a picture and post it today… it looks like it may be infected.  He worries about cutting into him and risking infection into the spine.  I shot back with…

What else can we do?!  It progressively gets worst.  We have been putting antibiotic cream on it and there is ABSOLUTELY no pressure on it.  I don’t understand what else to do. Do we just wait till it comes through his back?!

He said we will go with the surgery but if he gets in there and it is really bad.  He will just take the rods out until it heals.  With that… It brought more…This doesn’t make sense to my mind.  To me…Either way… Going in and fixing or going in and taking them out still risks infection to spread inside.  I would think if he just puts the 2 ends of the rods back on it will be in a different position and not be rubbing from the inside out to cause such a terrible wound.   So I am going into this surgery not knowing if he will have rods or not when he comes out.  I will tell you this.  If those rods come out… I will NOT do another surgery to put them in.  I would try a fusion before that.

The nurse practitioner came in and checked him over and was concerned by the blisters by his diaper. He gets rashes like that often… his pediatrician has stated before that it was MRSA without testing it.  But they come and go so often.  Tyree and I have both had MRSA before.  But these looked like a scratch from a ring or something to begin with… which is a door for Staph to come in.  However… it was flat when she went to check it out… so WHEW… we should be okay.  But I also told her… Okay… If you go scope his lungs… you will find MRSA and all other kinds of bugs in there.  He is a carrier and that is just him.  I can bet money he has had worst during these surgeries.  She looked at me like… yikes.  But when he had his Bronch… he was healthy and doing GREAT and it came back with EVERYTHING under the sun.

So I am faced with fear.  I can’t say… lets wait until his wound gets better.  We have done all the wound care we know how.  and yet, it continues to get worst.  And I can’t imagine what it will look like if we let it go.  And I know that surgeries themselves are not what kills people… it is usually the infection that lingers after.  and that is what does scare me since he is going in with it.

One thing I do know is he is being sent to ICU for recovery and will be left on biPap.  Which leaves TERRIBLE bruising and marks on his face.  I do know that the doctor and I have been through a lot together with Santana’s surgeries and he knows how much I need this kid.  He promised to take good care of him.  But none of this is in his hands.  It’s in the hand of God.  He is the great physician.  He is the healer.  I have to in my mind accept if God choses to take him and Give him away, no matter what happens.  But I still have to believe that God can do miracles.  And I always say.. there is no way God will take him away… I might just fall apart.  But no matter what.  I know that Santana is not mine and I am not  in control and no matter WHAT happens… God knows what he is doing.

Please join me and pray for God to give the doctors wisdom and strength during the surgery.  Surgery time is 7:30 am on Friday the 13th.  I have to check in at 5:30 am … which means.. I have to leave my house at 4:30am.  Oh my!  Then again… the lack of sleep I have been having… It won’t be a problem.  Thank you for your support.  Especially all you special mommys who GET IT.

Off to read God’s word on fear.  So I can repeat them throughout the day… but “Fear not for I am with you…”  Stays running through my mind.

The Verdict is In…

For those following recent posts in Facebook or Twitter…You know that we have been having issues and concerns with Santana’s back.  Our last visit to the ER with Pneumonia showed a little redness where this spot is.  They said like BARELY a stage one pressure ulcer.  It went away a little bit.  But this weekend I flipped Santana over to find this redness and when I touched it I jumped out of my skin cause you can feel the tip of the rod.  Oh wait… Let me rephrase that… I touched that spot to find what feels like the tip of the rod that has been UNATTACHED since last January.

Right under that red spot you can feel the sharp rod. The bump is his spine...

Just to back up a little… Santana got his growing rod put in Last August (2010).  He was just going to need “outpatient” surgery to adjust his rod every 4-6 months.  The VERY next follow up post-op appointment revealed it was not attached on the upper right.  So he was scheduled again after being healed up.  We went after Christmas 2010 and had not only the rod reattached … I guess it’s called a revision… but also the length growing… cause I think Santana wants to be 6′ 3″ like his daddy.  Well… I was concerned about the bandages in his back cause the little blood spot seemed to have been growing.  But the nurses do not touch the surgeons bandages cause he does not want to risk infection.  We had to take him home … me still being in DEEP concern for his back.  Sure enough with in a few days I flipped him over and he was bleeding through everything.  You can see pics and read more about it here. The doctor was not concerned and told me to just change the bandages.  We ended up back in ER cause he was requiring more oxygen.  Needless to say his numbers were at the level of transfusion being needed.  And of course was anemic.  But they did not do the transfusion but instead put a wound vac on and just monitored his numbers.  Whew… Got that out of the way… but then within a month it was off … again.  But was questionably off.  Needless to say… A CT scan revealed it was off. AGAIN.

This is Xray durning Surgery. It is one the spine... I feel like Rachel from Friends looking at her Ultra Sound... I can't see it attached but whatever. You can tell it aligns with the spine.

We have been waiting and waiting to get it fixed.  But pulmonary… a NEW pulmonary doctor didn’t think he could handle it.  He required he got a sleep study.  He wasn’t comfortable that the sleep study revealed him at an average of 94% during the night!  I LAUGHED cause that is good for a daytime average!  So we had to go on biPap.  Not to mention another sleep study… with bipap.  It kept getting delayed due to Pneumonia… and lack of communication to the Pulmonary office.  But FINALLY they said… OK… ONLY if he is on BiPap after surgery.  Yeah yeah… Sure… THANK YOU!

So this sore is what I noticed this weekend and feeling the rod had my tummy turning.  I emailed the pics to a nurse at the clinic and they said… we will squeeze you in tomorrow.  So we did an xray… the doc had me look at it and said… yes we will still have surgery 1/13 and blah blah  blah.. I said.. YES… BUT WHAT ABOUT THE SORE?  He was like… WHat sore?  SO he didn’t know we were there for that.  So he looked… didn’t really feel around… UGH!  but said yes… that is NOT a pressure sore like when the boney areas get sores from laying in a spot… the pressure is coming from the inside out.  Put saran wrap over the tip of the pencil… see the stretch.. yeah.  That is what is happening to his skin.  I asked if it could come through… he says… well yeah.  SOOOOOOOO???????   REALLY?!  This is not like an emergency at this point?!

And this would be his rods... BOTH off on the top... it was just the right side. The one without the clip on the very top is what I believe to be what I feel right under the red spot.

I can wait… just a few more weeks to go.  AH!  It hurts to look at him!  It has me so upset I have been dealing with anxiety attacks.  I don’t do well with broken stuff… and when I feel that rod .. I squeal and cringe.  YOWSAS!

I think the doctor was a little nervous when I told him he is getting surgery Friday the 13th.  After all… He did have an whoops in 08 when his artery and vein got sliced during adductor release.  He knows there is a first for everything from that surgery… I am sure Friday the 13th isn’t the day he wants to work on Santana.  But as from my stand point.  It is just a day and above all… My God is the GREAT PHYSICIAN!  He is in control.  And I pretty much know he will keep him in good hands cause he knows emotionally I will not do good with out my bananas.  God’s Got this!  I trust him.  I just pray that he leads the physician in every move in that OR.  I need my boy to be as comfortable as he can be.

Not only does Santana need lots of prayers… but I do too!  This is a new hospital for us since our WONDERFUL St. Joeseph’s shut down pediatrics.  So you know.. I do not like change.  This is HUGE change for me.  I just want to get through it and bring the family back together again and hope this will be the LAST revision!  Besides… he is WAY over due for a lengthening.  So pray all is well when they get in there and his recovery is quick!

He sends his love and kisses out to all his supporters!  I will post more pictures of him in the next day or so.  THanks for checking in on us!!!!!  God Bless you all!   Below is the video of Post Surgery from the last time…

Where are you Christmas?

I can say over and over again that I am terrible at updating this blog.  But lately I think I have been terrible at a lot of things and this blog is the least of my worries. And in reality.  There isn’t much going on.. with Santana.

But I have gotten some emails looking for updates. And I suppose there are a few.

As most know, his rod has been out of place and unattached for a year now… well… A year come January.  He originally had it put in last August, next x-ray showed it came undone so last December they reattached it.  Unfortunately… the very next x-ray raised concern that it may or may not be undone.  Well, a CT scan showed that yes indeed, it is.

We have been fighting for a surgery so he doesn’t hurt.  Not to mention it freaks all of us and his therapists out cause you can SEE the rod poking his skin.  His curve looks WORST now.  Oh… and this is a GROWING rod that is to be adjusted every 4-6 months… it has been a year now… he has no where to grow so he is getting terrible TERRIBLE rotation.

We got a surgery date August 26th… but 4 days prior… and AFTER we already had a Preop appointment… Pulmonary knocked it down.  Made us do a sleep study.  Didn’t like his average was 94%… WHICH IS AWESOME EVEN IN THE DAY FOR HIM!  … and made us do BiPap and another sleep study.  He of course got Pneumonia so that sleep study was put off while we got his numbers back up.  Needless to say we finished the sleep study and yes he needs bipap and FOR SURE all the time immediately after surgery.  So YAY for clearance!

The set surgery date for December 30th and I was like…. ERRRRRRRRRRRRK (slamming the brakes on).  Ummm… no… This would be my 3rd overnight stay on New Years Eve and my 4th time in the hospital.  No thank you.  So the next date was January 13th.  Friday the 13th… NO WONDER THAT DATE WAS OPEN!  But I don’t believe in bad luck… so I took it.  Now we just have to keep him healthy!  Although I do wish I would have just took the 30th now.  Get it done with. Either date… Pulmonary didn’t think it through… HELLO… Now he is admitted during RSV.  BRILLIANT!  But its not the first time.  He is strong.

More recent news was just the freak out of the school district taking away my home nurses and providing their own.  Santana is not difficult… if you do know him.  So I had a hard time with this and wanted to pull him out of school.  I finally agreed.  But during the training process we find that the district provided nurse can’t lift him do to issues with her back.  I am sure she would have been very capable other wise but it worried the teacher and the therapist and my home nurse too.  So my girls get to go still!  YAY.   I felt bad cause it was nothing personal other than the ability to lift him and a lift will not work in the changing room… and he is only 40 lbs… I think that would be more difficult using the lift every time than just getting him.  And post surgery… he will need to be monitored VERY carefully and my nurses really know him and his numbers.  so WHEW.  after a few weeks that fight is done and over with.

I recently started working.  I love it.  I do.  But chances of them making it is slim.  So if you are in Arizona… PLEASE… EVERYONE GO EAT AT ROCK TACO CANTINA BY THE CHANDLER MALL FOOD COURT!  They have great food and if you drink they have a full bar.  It’s family friendly so yes kids are allowed in there.  The food is SOOOO tasty and I will be bummed if they have to shut the doors.  More for personal reasons since I love their food.  Work is just to get through the days and help pay for Preschool… which Tyree ABSOLUTELY LOVES!  He would be bored without it.  But times are tough and I am trying to help pay but we will see if I even get a paycheck.  :\

It is already December 8th and we have no decorations up.  And I don’t intend to really want to do them.  In 8 more days I will hit 5 years.  5 years of pain, tears, joy, celebration, striving, getting by, heart ache, brokenness, gratefulness, thankfulness, lonliness, love and blessings.  As you can see… it has been a roller coaster of emotions.  I know I have used the phrase… “Stop this world… I want off!”  several times as facebook statuses.  The meaning behind it only says that this is a ride that makes you sick after a while.  You can’t see what is up or down.  But I have to say… I am so proud of my boys.  I am So proud that Santana does try so hard in therapy.  It may be very small things like pushing down on a switch to his paintings that he LOVES to do and they always turn out beautiful.  My amazing therapists have pulled out the best in him.  But props not only to Santana and his willingness to go on… but to Jett and Tyree.  Especially Jett… He has endured so much and have seen more than the eye of any child should ever see.  He does excellent and when it comes to computers and tech stuff… he is a cool dork like his mommy!  Hopefully he stays together enough to make something of it with his talents.  He is beautiful and just goes with the flow of our roller coaster ride.  Then there is Tyree who has no clue that Santana is different.  He loves him to death and always wants to suction him or help make his formula.  He loves his brother and I am thankful that he doesn’t know what different is… yet.

My point of all this is… while there are lots of reasons to celebrate.  There is still a lot of reasons to miss who Santana was.  and I would be lost without the boy he is today and all the chaos of fighting for his rights… but his smile always stays in the back of my mind.  The thoughts of what life would be like if we were a typical family.  My life was flipped completely upside down and I will never know what it is like to raise a typical family and get to just get up for dinner or go on a vacation out of the blue.  This life requires a lot of planning… and if you know me… I am not good at that.  But I think life typical would be rather boring.  So I pick myself up and I do what I can the best I know how.  But man… 5 years have slipped by so fast.  I feel like I aged 10 years.  and This month will always be hard for the rest of my life.  I can make the best of it and continue to celebrate his life on December 16th… but the truth is… It will always be a reminder of the day that tore my life apart.  The day I had to start faking smiles to hide the pain buried so deep.   But I can celebrate the fact that my situation has brought amazing people in my life and scared off the TURDS who didn’t belong there to begin with.  Yeah.. if you think… “is she talking about me?”…. So ANYWAY… I want to thank the people who came into my life BECAUSE of what happened to Santana and has held my hand in the process and loved on him.  Especially you other ND moms… The TRIBE especially.  I love you all.  I thank EVERYONE who has stood by our WHOLE FAMILY (not just half of us).  I love you.

Now I will shuffle through this month and get ready for Surgery which is ALWAYS high risk for Santana.  Please be in prayer to keep him healthy.  He really needs this surgery!  Thanks for the ones who are left checking on the blog.  xoxo

The Life of Uncertainty

It seems as though nothing in this life is certain.

Jobs are not certain. Good health is not certain. Friends are not certain. Some days our faith is not certain.

Nothing on this earth is guaranteed. Not even another breath from your loved one…or yourself.

As I sat at the memorial service of a beloved Pastor from my church.  Pastor Leo Godzich.  I am reminded that it only takes a second and your life is totally changed.

You would think I, of all people, would not need to be reminded.  I live change from a second that could never be changed.  But the thing about it is, we get used to where we are in life.  We just deal.  We survive… Not necessarily live… but we survive.  A drastic change in life becomes all we know and we get comfortable.

But last night was another wake up call that life is short.

Our next breath is not promised.

And as I look over my life and the people in it.  I would hate to know I didn’t tell them all they mean to me or what they have done to pour into my life, before it was too late.  I would hate to leave this earth without showing my gratitude.  Without showing love and compassion.  As Molly, Pastor Leo’s wife, spoke… I want a life of no regrets.  I don’t want to be separated from anyone without them knowing I appreciate everything they do.  I want a marriage like they had.   I want my kids to remember our marriage like the Godzich girls did.  (Their middle daughter Bethany spoke life into marriages at a conference a few years back and as a child begged parents to work it out and remember the kids… it changed my way of thinking when it comes to family… she touched me so deeply that year).

While we never understand why tragedies strike.  Why Santana fell into a pool and was left with severe injuries that cause daily heart ache on the whole family. Or why Pastor Leo was appointed to the van that was not going to make it to their destination, we never will know.  I ponder on… WOW GOD… You healed him from cancer just a year ago.  He saved a multitude of marriages all over the world.  He fought to keep the sanctity of marriage One Man and One Woman.  He wrote the Covenant Marriage Law.  He was a MIGHTY man of God.  He took time from his own family to pray with other families.  … Including ours after the accident.  He stated the facts and all the emotions we would go through.  His conferences changed our life and kept us together. … And now he is gone.  The Santana I knew is gone.  And we can sit and ask why.  I know I still have my meltdowns of missing the Santana I knew and hating to see him suffer.  But in the end.  They are not ours to keep.  They are the vessel of God.  God used Pastor Leo in a GREAT and MIGHTY way.  I still believe that there is SOOOO much work to be done.  But I know his passing has changed THOUSANDS of people.  God somehow is using this.  And I DISLIKE when people would tell me that what happened to Santana is for the good. I would think… HOW COULD GOOD COME FROM THIS?!  But I know that I know someday I will see the big picture. Maybe not in this life.  But I will.  And it struck deep in my heart when they played pieces from his last sermon he preached in Uganda before getting in that van.  He was stressing that the bible says…. “ALL THINGS WORK TOGETHER FOR GOOD” … Wow…

As for God taking Pastor Leo, what we think to be WAY too soon, I know in my heart that his passing has changed my way of thinking.  To be blunt… Marriage is tough.  Everyone goes through a rocky point in their life with or without a special needs child.  But after attending Pastor Leo’s BEAUTIFUL memorial.  I am reminded that life is short.  And it isn’t our life to care for… we need to live it to the fullest and find God’s purpose.  None of us are here on accident.  And after hearing the strength in Molly and their girls last night.  I realize that life is too short to worry about petty things.  I want to make memories that last a lifetime… Not ones that haunt my thoughts.  I want my boys to remember us as one big happy family.  I know that is unrealistic to live out every single day.  But I am going to strive to make the good memories outweigh the bad.  I am going to tell people what they mean to me.  I am going to love my family and husband like it’s our last day.  And the days I don’t have the strength, I hope they have forgiveness for me.

Again nothing on THIS earth is certain.  But one thing is certain is putting your faith in God and dedicating your life to Jesus Christ… Cause if you can do that… Heaven is for Certain!

… I know I have been terrible at Blogging.  I will write about my moms retreat in the days to come.  Please keep the Godzich family in your prayers.  Please pray for their NAME building as they are trying to raise funds before December before the bank takes it away.  Molly has enough to deal with now and this is a stress she doesn’t need.  If you are able, you can send donations to NAME and please pray they raise enough to pay off their building and they can focus on continuing to help and save marriages all over the world!

Take these kids!!!! No… Really…

Well… The picture below of us all happy and excited lasted for the weekend.

Santana decided he didn’t like the California air.  His o2 hung around 88%… which is doable but in the middle of the night I am sure it dropped lower.  He was junky.  Lots of coughing.  So we came home Sunday after church… which was the original plan.  By the time I got him into bed he was running 83%  So he was hooked up to oxygen… FAST!

Monday we took him to the ER cause he required 5 liters through the night.  He was pretty junky by morning and had a fever of 102.7.  Needless to say… He was PERFECT at the ER … only on 1 liter.  His xray showed pneumonia but they just wrote for Cipro and sent us on our way since he was doing well.   Pharmacy had to order it.  So no go on starting it right away to kick it before I leave on this Near Drown retreat.    Of course I go the next day to find out it is not recommended for g-tube.  after calling 3 different docs they FINALLY got it rewritten into pill form.  SO FRUSTRATING!   After being on oxygen I can finally say he has been off for over 48 hours now!  WOO HOO!  Which is good since I drop him off at Ryan House Tuesday night since I fly out Weds. Morning.

WHICH is why I am here… I know… I am SO pathetic!  Begging the world wide web for a babysitter!  I need help with Tyree and Jett in the Morning and after school.  Tyree can go to school as early as 7… usually he goes after Jett goes on the bus and we get there about 8:30.  And he can get picked up by 5:30.  Anyone… anyone?!?!??!  Pretty please???

Please pray for all the women and their kids.  One is in ICU (Abbie) the other is really ill (Luke).  And Seth was sick at one point.  I hope and pray we are all healthy!

Mothers of Near Drown Retreat

I have been so naughty about updating. So much is going on with fights for Santana’s surgery to fix his once again unattached rod. But I will go into that later as we are driving in the car in the desert on the way to Los Angeles. I am attempting this from my phone….so a quick update is required. Actually….i am not here to update Santana right now…

The mothers of near drown retreat is October 20 thru the 24th. Sue Searles…Lukes mom (see blog list to right…cant do links on my phone) puts her whole heart and time into planning this retreat in making it stress free and relaxing for all us moms who have been through life changing experience that we wish on no one but are blessed to have our friendships and understanding.

I am here to try and help her raise money for the food, rent and gas money….as there are several trips to the airport. Sue wants to bless us all and make it so we only need to purchase our flight to seattle. But the burden is heavy this year and not much money has been donated to cover the food.

Last year we were so blessed. So many people donated through her site that it covered food, a day in seattle with lunch and dinner and a visit to the Space Needle. It was so much fun. Not to mention the gift bag of goodies. While that was all bonus…I am on here to ask you to pray about it and see if you could donate to cover food…I wish I could tell u how many of us there are…but I am not sure. I wanna say 14 or so ladies. I will list all the blogs when I get home.

If you are willing to bless this trip please make a donation to Sue Searles or to my paypal account…to the right I believe… Help is much appreciated.

Even if you cant….prayer is needed from now until the ended of the retreat. Please pray that all our kiddos stay healthy and give us moms a piece of mind about leaving them. It is so hard for us moms cause we know our kids inside out and all their requirements. Its very difficult to leave them behind without worrying. Pray that we all get along great and that this retreat is refreshing and brings us much needed laughter!

Thank you all in advanced. …huge update coming next week!!! I p…ppp…pro….cant promise….my life is too crazy to sit at the computer.

It’s just HARD sometimes.

Yesterday was just plain HARD.

There is no other word to describe it!

We went to Phoenix Childrens Hospital Water Watchers Kick of for Drowning Impact Awareness Month.  Had all our purple on and ready to go.  But the stories struck home.  The details.  The pain begin to rise in my heart.  The inside of me felt like it had left my body.  I felt numb.  I did all I could to hold back tears.

The rest of my day I was numb with pain from the memories that overcame my mind.

To top it off… I come home to find that my 11 1/2 year old great dane had been digging… with the other 3 I am sure.. and the ground caved in.  She was laying out in the back when I left, which isn’t abnormal… and was there when I got home. I went to check on her and what looked like laying down was standing up.   The back half of her fell into the hole.  It was only 1-2 feet deep (the part her legs were in…the main hole was above my knees) and I dug and cried and dug and screamed trying to get her to go.  Her hips are getting bad as it is.  But the dirt settle in on them.  I finally got her out and carried her back end to the patio and hosed her down and forced water in her (it is 108 here… and humid .. which is rare).

So with all that.  I was just heart broken.  I ache because of all that Santana goes through and I ache cause I may have to put my girl down.  Although she has lived a good life for a Dane and beat the normal 8-10 year life span.

So with all that blah blah blah.  I am just here to confess…. Yesterday was HARD.  I walked with no hope.  I wanted to be alone.  I didn’t want to see anyone.  I wanted to stay in bed.  But today is a new day and I am up and ready to tackle my next mountain…. NEW ORTHOPEDICS DOCTOR…

We were told about this AMAZING doctor.  So we thought we would see what he could do for Santanas poor back.  The office said our docs work side by side and didn’t want to step on toes.  But they would look at the xrays and see if there is anything they can do different and will call for an appointment if that is the case.  Low and behold… less than a week… we got the call.  We are headed in today.  His surgery is scheduled on the 26th of August with the original doctor.  So we will see what this doctor comes up with. It is always scary to see a new doctor and learn what kind of hopes they have for a child…. MY child.

So I pray my spirits are not crushed and I get through this day!  I pray that I can hold it together today… cause yesterday was just ridiculous.  I know better than this.

I do PROMISE to update more… Now the kids are in school… it will be easier.  =)

Royal Tailor – Hold me Together….

WOW! Vote me as WORST blogger…

Sorry to be slacking in this department of blogging.

I guess with Facebook and his page there, I find myself forgetting to post here.  But I have been off Facebook for a few weeks and it made me realize that there have been no updates for anyone.

Obviously he overcame his last pneumonia… which is what was going on with his illness in the last blog post.

I have came to the conclusion that this will just occur every 3 months or so.  And it is never a big shock when they say… Oh, he has Pneumonia in his lower left lobe.  Although his last one was upper lobe.  Weird for him. But Ok. We did get through it… although the last 2 weeks he has been up and down on a fever. This morning he spewed all over.  =(  TMI?

SOOOOOO much has happened in the last 2 months that I am going to have to split the blogs. To quickly capture it all… Santana stayed in the Ryan House while we went to Los Angeles to visit my parents at the Dream center… Have I ever said HOW MUCH I LOVE ANGELES TEMPLE?!?!?!  LOVE LOVE LOVE LOVE LOVE that church. (ALMOST as much as mine… ) More detail about this trip and Ryan House in the next entry.

I was also able to go back to San Diego last month and visit a GREAT friend and WONDERFUL encourager who knows this journey all too well. (will use this as another blog entry too) I can’t begin to thank God for the people that was placed in my life from this journey.  HE really does turn something meant for harm into good.  Somedays it’s hard to find the good when your mind is clouded with the trauma of how life is now .  But I know I have been blessed through it all.

Santana has his casts off and doing just okay in his AFO’S (braces on his feet).  He had some breakdown in the heels from them.  =(  So they did some adjusting.  I don’t know.  We will see.  But when temps get to 120 it is very hard to think about putting him in those hot and sweaty braces.  I know I need to for prevention but I know I would not want to be wrapped in plastic in this summer heat!

Surgery is on the horizon again.  They are going in and FIXING the hardware on the rod… again.  this is at the end of August.  His doctor is not going to be as aggressive to get his back straight hoping it will hold better.  But my thought process is… WHY HAVE THEM THEN?!  If he is loosening them… this is an issue cause already he has SERIOUS curvature going on.  It is very frustrating and I want to say… TAKE THE METAL OUT OF HIS BODY.  But I am not sure that is the best option at this point either.  I just don’t want him to go through these surgeries OVER AND OVER AGAIN!  This is round 3 in a year.  Well… it will be just a few days over a year since they were put in.

I will certainly keep you updated on all that.  And Because I have so much to blog about… Check back… Pictures and more to come!  Thanks for being so patient!  I love you guys and thank you for your support!!!!!!   God Bless… and iBELIEVE!

This is just SICK!

Well… Santana is anyway.

After 4 days of fevers that peaked to 104.2 and lowest to 99.8.  I took him in .  Today he coughed for the first time.  Last night I thought we were over it.  He was down to 99.8 o2 was off (but then crashed to 80)  but still good.  THEN He woke up panting this morning.  When my nurse got there his repertory rate was 48!  His normal is about 22 breathes per minute.  Soo yeah.  ER HERE WE COME!

After a long day at Phoenix Children’s Hospital… ST. JOE’S… YOU WERE MISSED MORE THAN YOU WILL EVER KNOW!!!!! … He has pneumonia in his UPPER LUNG!  HIs lower lobe is normal for him… But his UPPER?!?!?!  So yeah.  They were going to admit him but when they found out he had o2 at home they decided to let us go after an injection of iv antibiotic and first dose of Zithromax.

Feels good to be home.  I was just hoping a cleaning fairy would poof my house… but apparently she couldn’t get through my locked doors.  =(  No fun coming home to a crazy messy house!

Thanks for all the prayers and texts of encouragement my friends!  Helps keep me going!  Good is good all the time!!!!!