We Need Each Other

Alright… there is no easy way to go into what I have to say… other than I heard a song by Sanctus Real that made me want to write this… First the lyrics…

Sanctus Real – We Need Each Other

I think I caught a glimpse of
Life without friends
Bitter, empty, hollow, dark and lonely
We never meant to hurt each other
So Can’t we trust again
And take it as a chance
To keep on growing

I don’t know why it doesn’t come easy
But I know that we could be happy
If we’d only learn to love

Oh oh we need each other
So what’s the fighting for
Oh oh we need each other
Please don’t close the door
Oh oh we need each other
Through all the highs and lows
Oh oh we need each other
Cuz no one’s meant to live alone

Life revolves around the need
Of having someone
Causing every complicated feeling
Oh and I don’t want to loose you
And there is nothing wrong with
Telling me what you need
To keep our love strong

It’s just a part of being a family
Taking the good with the bad and the ugly
If we could only learn to love

Oh oh we need each other
So what’s the fighting for
Oh oh we need each other
Please don’t close the door
Oh oh we need each other
Through all the highs and lows
Oh oh we need each other
Cuz I don’t want to be alone

Oh Oh we need each other
Fathers and Mothers
Oh oh we need each other
All your sisters and brothers
Oh oh we need each other
We need friends and lovers
Oh Oh we need each other

Well I need you
You need me
Cuz that’s the way
It’s meant to be
I need you
We need each other
(I don’t want to be alone)
[x2]

So as I was getting my tax stuff together   =P   This song caught my attention.  Especially the “We Need Each Other”.  And it got me thinking about a lot of things that have been going on the last few weeks.

I am very sad and disappointed in the community of “special needs” parents. I can’t point fingers or blame any one specific hearing only one side of many stories.  But one thing that has shocked me is the disrespect there is going on.  To tell another mother their child has no chance of getting better because they were born with disabilities and not typical at one time is like saying you are God and you can see the future and know what this childs will is.  When I heard this I just winced with pain for this mother.  Not to mention that I don’t buy that statement for one bit… cause if this was true… Santana would be doing more than this child born with disabilities… but he isn’t.  I am content with Santana where he is.  I praise God when I hear improvements that others are making.  Do I wish Santana could do some of this? … Of course.  But God knows what I can handle… and let me tell you… Tyree has me so busy I don’t think I would have time to do feeding that can take an hour each sitting or whatever else.  IT is time consuming no matter what stage or realm your child is at.  Everyone has their own time table.  Their own level of pain.  Their own size of plate and what is on it.  There is no comparison chart for these Angels of God.

Really… what is in it for anyone to sit and talk about whose child is or isn’t doing what?  What does it do for the soul to bash what a mother wants to do with their child?  Not everyone can afford therapies and are lucky to even get traditional.  And I don’t think anyone should feel bad for those who can’t do it.  It is all in God’s plan.  If it is his will I believe he will provide a way.  OR… he will let you go and learn the hard way like I have in so many new cutting edge therapies. I got SO caught up in it and now I can hear God saying… Are you done yet?  Can I take over?  I don’t think doing these things is wrong.  I know for a fact many things that have worked VERY well for lots of kids.  I still want to try a few more things.  BUT…. What IS wrong is putting down the people that can’t afford it or for some reason can’t or do not want to do it.

What happened?  Could it be Satan?!  (Ha… that was written with the SNL Church Lady Accent) No.. but really.  Why is there so much gossip.  Why do people care what others are doing with their kid.  Why can’t we worry about our own kids and when parents are down… lift them up… not rip them apart until there is nothing left and they feel like hope is gone.  It breaks my heart to see other mothers in so much pain.  To know they have been attacked.  Before you open your mouth.  Stop and think where you were at one time and don’t pretend like those feelings of giving up never surface.  Everyone gets tired… and that is when we go to the living water and get revived again.  We can go to that point of dispair but we can NOT stay there.

I am not sure anyone means to cut someone down… at least I would hope not.  But we all need to think before we speak… This includes me too… I can hear you… But really.  If a child isn’t easily awoken… like Santana… Don’t sound so shocked or act like it’s not normal.  This is his defense mechanism to shut the world of therapy off.  Don’t say… UH… your child isn’t doing this or that?!  Don’t say that they never will.  Can we all come together.  We need to make a positive bond and be there for each other.. not bash each other behind our backs.  Together… we need to BELIEVE in our children.  We need to speak positive truth into each other.  Don’t assume one’s life is so negative cause you don’t know what is going on with someone beyond the words that are written.  If there is a lot of pain on the black and white… imagine what they feel on the inside.  What is going on in the depths of their heart and soul.  Stop comparing.  Start loving each other and being there for each other.  Start believing again.  I do not like to see the animosity that has been going on.  I feel it in the atmosphere in the blog world.  I can only pray that moms won’t be so selfish and reach out to one another.  I really do not want to see my friends hurt any more.  I have been there and it sucked… but I have an amazing supportive husband that picked me up and dusted off my knees and reached out his hand and made it clear that I only need him and the boys… and God too.  No one can bring us down!

I love all those who have swooped me up when I have been down and I will be there for you in a heart beat.  You know who you are.

Oh… by the way… Santana has some crud going on… but is still holding himself well as far as his O2 Sats are concerned.  I pray it goes away FAST!  His newest things… LOTS of sounds, He has been reaching up the last few days with his arm… generally at James when he talks to him in the AM before he leaves for work.  He pushed his play doh away today when he was done… then closed his eyes… but opened when he thought no one was looking.  He cries when it gets too quiet.. this is my favorite… when he thinks everyone left he will cry… moan.. whatever you want to call it.  It is GREAT!  His eye contact is getting better and better.  We ran out of Valproic Acid on our journey of taking it off anyway… so I am cutting it and not filling it.  We were getting down to nothing anyway.  So pray there is NO increased seizure activity!!!!

Jett starts Baseball this week!  Busy busy schedule this spring!!!!   3 times a week… i  will be taking my Sunday naps for sure!!!!

Thanks for the prayers.  Continue to pray for all of Santana’s pals and may we as parents come together as one and believing in our kids!

Exodus 23:1
“Do not spread false reports. Do not help a wicked man by being a malicious witness.

Exodus 23:1
“Do not spread false reports. Do not help a wicked man by being a malicious witness.

John 13:34
“A new command I give you: Love one another. As I have loved you, so you must love one another.”

Romans 12:10
Be devoted to one another in brotherly love. Honor one another above yourselves.

Galatians 5:13
You, my brothers, were called to be free. But do not use your freedom to indulge the sinful nature ; rather, serve one another in love.

1 John 4:7
Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God.

Proverbs 3..
27 Do not withhold good from those who deserve it,
when it is in your power to act.

28 Do not say to your neighbor,
“Come back later; I’ll give it tomorrow”—
when you now have it with you.

29 Do not plot harm against your neighbor,
who lives trustfully near you.

30 Do not accuse a man for no reason—
when he has done you no harm.

31 Do not envy a violent man
or choose any of his ways,

32 for the LORD detests a perverse man
but takes the upright into his confidence.

33 The LORD’s curse is on the house of the wicked,
but he blesses the home of the righteous.

34 He mocks proud mockers
but gives grace to the humble.

35 The wise inherit honor,
but fools he holds up to shame.

PROVERBS 10….

Pulm/GI

Bronch scheduled march 22 and will be under sedation. Pulm. wants GI in there but my GI is a Banner doc. not Catholic Healthcare West. SO today we are going back to Finch… otherwise known as Grinch. Hopefully he will agree to to do a endo at the same time so he is only under and vented once. The Bronchoscopy is a procedure that will squirt saline down his lung and try to get all the secretions out of the bottom pocket of his lung and take samples. It is risky for infection and the fact he may not come off the vent.. as is a worry with every sedation. But I am not worried. Hopefully he can have both done at the same time.

Everyone go wish Santana’s buddy Izak a VERY happy birthday! This is an amazing family that TRULY walks by faith!

Birthday Video…

If you do not get youtube… So sorry… you miss out. =(

Plug your ears the first minute… you will know why… Me holding camera “singing” happy birthday… YIKES! The coyotes were howling out here!

Party time! (pics and video to come)

What an awesome amazing party Santana had!  We were really worried about the rain.  They dropped the bounce house off at 10 am in within a half hour it started to rain!  But it cleared up an hour before the party!  The rain held off until 7 so what a blessing that was!  SO many good people came to celebrate Santana’s life. For 3 days of planning and getting the word out (Last minute Lindsey) it was VERY successful!  Great food! (Thanks James) Great Friends!  And Great Fun!  I wish we can do it all over again!

Santana had an amazing weekend!  He is getting  a little bit of a wet cough I need to watch… but other than that… GREAT!  He has a few dr. appts this week.  GI.  maybe someone… ANYONE can figure out his bleeding!

Slideshow is loading so it will be posted most likely tomorrow.  =)  For those who couldn’t make it…. we missed you!  Pray for another amazing 5 years!  This is a new mark in life!  I just have to believe that!

I HEART My Boys!

First things first.  I have to brag about my wonderful awesome husband.  And I have a confession at the same time.  I think sometimes his job SUCKS!  He leaves about 5:30 am and doesn’t get home until 7 Mon-Fri.  He works MOST Saturdays where he leaves the same time but gets back about 4:30 or 5.  I get annoyed and feel the weight of being a wife/mom is tough when my husband is gone.  BUT!!!!!!   But but but… I will admit… James is AMAZING around the house.  He will cook when he gets home, help me clean up the tornadoes my kids cause… amazing.  So… anyway.  This job is important and so are all these hours because it is what has us HOLDING ON TO THIS HOUSE BY A THREAD!  Seriously.  If he could work 3 more days a week… survival may be easier… ummmm… but a week doesn’t have 9 days.  Anyway.  We had an awards banquet to go to last night.  Of the Van Tuyl Dealers and 405 advisors (car service advisors) he is top 5 is sales!!!!   If you had the customer service and take away the 2 that did not get  awards because of low customer service, he is top 3!!!  I am so very proud of him! He works hard and really deserves the best! He has me… so he got the best… HA!  I am totally kidding.

I am 5 today, Sitting in BIG BOY CHAIR, Watching TV!!!!

So Santana had a ROUGH day on Tuesday.  Went to bed with oxygen and very low sats…  But woke up as a happy birthday boy.

(WOW!  I am obviously distracted…. the above was written like 14 hours ago… Glad it saved… )

SO ANYWAY…. On Thursday, Santana’s Birthday he had a WONDERFUL DAY!  How many kids get to go horseback riding on their birthday? (Therapy or not)  He did AWESOME in speech.  His eye gaze communication is getting much better.  He can  do it… it can be slow… but he can do it!  He LOVES his suckers!  Then he did well in OT.  Very loose and an open hand!  Usually it looks like he has bad contractures.  But he is loosening up.

Today… the day of his party… he has a cough going on. I am hoping it will pass after treatments and what not.  He can NOT get sick!!!!  =(  Also… we are supposed to get rain so I am praying (and those that know me KNOW I LOVE RAIN) it doesn’t come till after the party!  But this is Arizona and we do have the Weirdest storms and predictions.

So as far as what we HAD up our sleeves, it is still going to happen…  but in March.  And I don’t want to post it in this entry because there is so much writing and I do not want the AWESOMENESS of it to get lost.  So I am gonna go rock some SCHOOL’S OUT FOR THE SUMMER on Guitar Hero before my day gets started.  ;-D

I had more to say but I am not quite awake at 6:45 am.

o2 be free

Today we had to head to St. Joes.  Not like that is a big surprise.  He had an appointment with Pulmonary.  What perfect timing because before we left, his oxygen dropped to 82% as you may have noticed on my Twitter update.  It took 3 liters of O2 to get him to 91-92.  I was pretty scared and didn’t know what was going on.  Not to mention the day before when his teacher and therapist from school came, he started choking and holding his breath.  There was NOTHING to suction out and he looked up like SAVE ME!  IT was pretty sad and I am pretty sure it broke Ms. Jacci’s heart… and gave her a heart attack while he was at it.  With all the blood he is hacking up and what not… things have been up and down.  On the way up to Joe’s he had a HUGE cough and a TON of junk came out.  It was slimy.  I am sure it was almost like a mucus plug cause once it came out his sats with the O2 was 97%  BIG difference.  He came off O2 by the time we got there and was good at 95%  By the time we took it with her in the room it was 91%  But as long as it is about 90%  I am ok.

Pulmonology wants to do a Bronchoscopy but instead of putting him out 2 times wants to get GI to come in and do an Endoscopy also so we can see where all these GI bleeds are and what the future holds with these.  So hopefully they can tag team and get it done and over with.  As we all know… It is NOTHING to go under for something like that… but with Brain injured kids, they may never wake up or be left with a ventilator.  I am not worried though… Not when I am allowing them to slice open his whole back and bang on it like a carpenter.  That is the one I will sweat out a little more.

I kinda wonder if seizures are bringing his o2s down again… I think he is having a lot more seizure than we can tell.  His tone is in HIGH gear and he is VERY VERY tight.  His eyes keep rolling up but we can generally poke him on the forehead and he brings them down.  So I do not know what is up with that.

Gotta go… He is choking.  =(

Santana is 5 tomorrow!!!

Ok… so the fundraiser I had planned fell through to attach to his birthday… we will do it another time.

So we decided either way Santana deserves a birthday party for turning 5!!!  So Last minute… not an after thought… I am posting this up so all my friends and family can come to celebrate the big 5!  We are getting a bouncer thanks to Slide and Bounce and my friend Marqel.  =)  and BBQing!  I hope you can come and celebrate LIFE with Santana.  If  you are not on facebook to get the event invite… Please email me or leave a comment and I will get you directions on how to get here!

Thanks for all your prayers and support!!!!

Happy Heart Day!

Bloody drool.. not including the blood tinge foam in his nose

Wow.. so much has gone on since I last blogged.  As usual I will forget something or be all over the place.

We went to his Physical Medicine and Rehab doctor and she really thinks we need to do the spine surgery because xrays are showing compromising of the heart and lungs.  When he gets those xrays every 3 months there is always change.  So I think I am at peace with getting the growing rods.  I do have one of the best orthopedic surgeons… AS LONG AS HE WILL DO SURGERIES (he still won’t do the hips).  So basically the doctor said if we wait to long his lungs will be so badly compromised that he will not EVER have any surgery or be put under cause he won’t make it through.  So I am saying. LET’S DO IT!  It is a LONG and gross surgery.  But His breathing is WAY more important than him rolling around or crawling.  So I called and said to go ahead and schedule it.  Then they say… You need a note from pulmonology.  That cracked me up because his pulm. doc wanted this done back in JULY!  and Ortho doc said NO… his spine isn’t going to cause trouble to his lungs and heart.  Obviously he saw the CT scan and is all about it now.  So Get er done!  Oh no… living in the “country” is turning me hick!

So Wednesday was scary… again.  I walk in the room (was gone since he was sleeping) and he was drooling BLOOD!  I was like.. it’s ok.. probably just a seizure and he bit his tongue.  So out of momma instinct, I got a 60 ml syringe and pulled back his G-tube.  There was a HUGE blood clot!  BRIGHT RED!  NOt coffee ground like an ulcer is.  Not to mention.. his poop was brick red that day… 2 times.  I gotta tell you.  I did not call the doc or go to the ER. If I did that… I would be in the hospital a week.  Selfish?  Maybe… But I can do what they do but better at home.  And once I got the clot out there was no blood drool or blood tinged foam coming out his nose. I have pulmonary and GI coming up so I will show them the pics and talk about it then.

The only other odd thing is he is shaking a lot. Not seizures… although he is rolling his eyes back a lot. He has EXTREME agitation going on. LIke he was right after the accident.  I think he is crying and what not more because nerve endings are opening up.  He has made a TON of change since we have been going to a neurological chiropractor.  Everyone comments on his eyes and how much more in tune he is.  WOO HOO!  So anyway.  His neurologist thinks it may be like a detox from coming off the Valproic Acid.  I asked him if that is what it is and he said it could be since it is used for bipolar and what not and is addictive.  So I am going to go off it a little more slowly to avoid increased seizures.

Cozy at Stacey's. Why does he nap for EVERYONE but me?

Other than that he ROCKED it out in therapies this week.  No crying on the horses!  For speech he not only looked at the picture of the sucker but then looked at the therapist with it in her hand right after! He then sticks his tongue out.  His nurse asked one day if he wanted a sucker and he started smacking his tongue to his lip like he was salivating for it.  It was great!

I think the biggest things we need prayer for is that we get approved for his therapies.  Arizona is taking that away and I LOVE my therapist.  A few came to bat for him but My coordinator didn’t care.  She didn’t even see if he accomplished goals or what new goals we had.  It was terrible.  As long as we get approved that is all I care about.

Then comes the Hallmark holiday that is loved and hated by many.  James and I celebrated FriDAY!  WE had dr. appts so he took the day off.  My WONDERFUL friend Stacey watched Mr. Tyree for the day while we went to a movie and did some shopping for his banquet dinner we have this week.  It was so quiet and we didn’t have to hear whining or have to say, STOP.  It is amazing how you get away but you can only talk about your kids!  They are truly sent by cupid.  Especially Tyree … =P

The Men behind the BEAUTIFUL voices from the Valentines Singing Gram! WE LOVED IT!

My sister in law Janet is coming after church to watch the boys so we can do lunch ALONE.  Then my dad, step mom and grandma are coming later in the day to take over … we should be back by then.  So we have 3 dates in a week!!!!  Next one is on Santana’s birthday.. but we can not Skip it.  It is an award ceremony.  Mr. James who is in his dealerships TOP 5 service sales!  WOO HOO!  My man rocks!

Santana got a GREAT valentine today!  One of his readers on Facebook, Jon, sings with a quartet and wanted to sing to us.  It was BEAUTIFUL!  Then he added You are my sunshine… Santana’s song!  As you can see in the video below… he was out COLD!  Normally you can NOT wake him when he goes to sleep.  But he heard voices of angels!  Seriously amazing!  Jon has been a great friend and prayer warrior.  I am blessed to know him!  Thanks Jon and your  Quartet!  LOVED IT!

When you look around and see all the hearts on this day, remember that it is also Congenital Heart Defects Awareness day. I know a few kiddos with this and has had MANY MANY MANY open heart surgeries. Keep all those kids in mind and be thankful for every thump you got.

Off to bed I must go!  So much to do.. not enough hours in the day!  Happy Heart Day Everyone!  Remember… if you don’t have a Valentine… It is ok. God is the BEST valentine you could ever have!  He will never leave you nor foresake you!  Lean on him and remember his love is what will get you where you need to be in life!  I love you guys and I LOVE my friends!  I could not get by without you ALL!  I can not name them off.. too many and I would NEVER put anyone in order.  xoxo

MAKE SURE YOU PAUSE THE iPod PLAYER ON THE RIGHT BEFORE STARTING THE VIDEO SO YOU CAN HEAR THE ANGELIC VOICES!

(Insert Creative Title…too tired to figure it out)

I have been so busy I can’t see straight. It is probably a good thing I have been so busy. When I am on the go all the time it makes it easier to hide the hurt and pain.  This year is so tough.  Why is it any different?  His birthday on the 18th is what changes things.  He will be 5! I can’t believe it!  Jett was already in school for 3 weeks before he turned 5.  5 is a big age to turn.  It is when they turn into big kids.  They start loosing teeth.  They ride their bike without training wheels.  They learn how to write the whole alphabet.  They LEARN LEARN LEARN.  They turn from toddlers to school boys so fast.  I remember when Santana was 2 and a half and my support coordinator was like, “We need to schedule a meeting for school.”  I thought she was CRAZY that Santana whom could do absolutely  nothing was going to go to preschool.  Today I signed his IEP (no formal meeting… nothing really to fight for) and I wanted to cry.  He goes to kindergarten next year.  A whole new school.  A whole new teacher.  And that scares me.  Jacci has been amazing for Santana!  Absolutely amazing!  I love her to death and I love that she too has so much hope and belief in Santana and plays with him as if he was the typical preschool child.  I am scared to have him leave her.  I don’t think another teacher will care for him as she has.  I don’t want preschool to end.  I don’t.  I will miss it dearly.  The therapist are great… but most likely I will be seeing them at the other schools.  So I don’t think it will be goodbye for them.  It is sad to think He will be going to kindergarten and not fighting back tears and wanting to stay with his mommy that first day… like Jett did.  Then there is the sports side.  Jett is starting his 3rd year of baseball.  This is the year Santana could have started his first year.  But he can’t pick up a ball.  Can’t swing a bat.  The hopes and dreams of our little sports player we held when he was born is shattered.  GONE!  NEVER.

Wednesday is his IFSP meeting.  I dread it. I fear it.  I am SICK about it.  We all know the phrase BUDGET CUTS.  Well, Arizona got them really bad.  We were so LUCKY and blessed to get 2 hours of Physical therapy, 2 hours of Occupational Therapy, and 2 hours of Speech therapy.  OH… and 1 hour of music… which is far and few between.  I am kicking myself in the head for not asking his rehab doc for a script to continue these therapies.  I am crossing my fingers and praying so hard that they get approved again.  I hear that they are only giving an hour.  So I am scared.  He needs these.  Also, if they want to cut my nursing hours… that too will happen on Wednesday.  So I am just sick.  Everyone is pulling me in a million directions and I just need time to regain my mind.  NO ONE gets that.  I have had a load on my shoulders  And I just can’t carry it anymore.  And now.  As I started writing this… I hit my breaking point.  I want to go to bed and lay there and cry.  That is what I want and what I need right now.

Besides this… today was wheelchair clinic.  They are ordering my huge growing boy a new chair!  It will be Black with metal flake.  Santana’s Uncle will be proud of him (he has a custom paint shop).  Other than that… we are working on the wheel chair van.  Trying to make a HUGE decision if I want his back opened up and pounded on like a carpenter would or chance his lungs being compromised until he takes his last breath.  Oh… speaking of.  He is getting his bronchoscopy at the end of the month to see if he has any blockages causing his breathing issues.  This is a big deal.  Pray that he stays healthy so they could put him under for it.

Oh… and speaking of turning 5.  We were going to have a huge birthday party and fundraiser but the venue fell through.  It was a go but waiting for the final word and now I think it is too late to get any word out.  I was really hoping to celebrate 5 in a BIG way!  But things didn’t work out.  soooo… it goes with the rest of the day.

In the end… all that matters is I need you to pray for the IFSP and therapies on Weds.  A wheel chair van.  Surgery decision and his health for Bronch.  Thanks prayer warriors… Could not do this alone!

BACK to Confusion

I never thought I would be faced with so much heart wrenching decisions as I do now.  I grew up thinking who you are going to marry and where you will start a family is a hard decision to make. And Should I buy Tide or All?  What should I make for dinner?  Can we afford vacation?  Can we afford this house?  But I go above the thoughts I grew up to think were going to be hard.  I have to decide what is best for my son.  I have to choose surgeons.  I have to choose surgeries.  I have to choose what would make the best quality of life for my son.  Not to mention I have to make these MAJOR life threatening decisions with different opinions thrown at me from all angles.

Santana had an appointment with his Physical medicine and Rehab doctor.  WHOM WROTE  AN RX FOR VALIUM… agreeing it was RIDICULES that his doctor wouldn’t give him anything for pain.  But that is neither here nor there.  She HIGHLY suggests the spine surgery too but she made the best point about it.  FIRST… let me say… 6 months ago I really wanted because Pulmonary said his lungs are shifted and his heart and he can’t expand his lungs.  I tell ortho this but he said NOOOOO.  Then a few weeks ago when I decided I did NOT want spinal surgery because of what therapists and chiropractors have been telling me. Not to mention the gruesome youtube video I saw.  Then the last appointment when I begged for hips, he wanted to do spine.  URGH!   No one wants what I want!  So back to today.  The point she made is if his lungs get too compromised he will never be able to have surgery because it would be too hard on him and now is the time to do it so that we can open his chest wall more so he can breath better.

Oh God oh God!  I don’t know what to do and I need directions from the one and only voice that truly matters.  I write this in tears because this is a HUGE decision!  I don’t know how to face it.  I really don’t know what is right in this situation.  God show me what is best for Santana.  Please!!!!  Take away all other voices.  I ache to know some truth in what is going on in his life.  Days like this I just want to walk away from it.  HELP ME!