Bitter Sweet!

I don’t like to post much because it seems it is the same thing over and over… Yup… Santana is doing nothing.  I don’t find it necessary to post the same stuff everyday… even though that is my tendency to get things out!  But this is different!  This is bitter sweet!

Santana had his Neuro chiropractor appointment tuesday.  I really REALLY like him.  His daughter is our neighbors and the whole family is just awesome.  But he has so much great insight and has shown so much improvement with awareness in the last 4 and only 4 visits!  He has us doing some TOUGH exercises.  I tell him he just wants business from me when I pull my back out!  =)  He has us holding him up and making him stand and not flop down.  Santana comes up to my chest.  He is VERY tall so it is hard… but worth it!  But when he was doing the checker material to stimulate the brain stem and get his tracking going.  HE TRACKED… VERY GOOD!   We have to stop and check his pupils to make sure we don’t blow the brain stem.  But he was using both eyes and doing so well than BAM… BIG seizure.  They were VERY impressed with him and said to keep doing it.. but not to the point he gets overstimulated and seizes.  This is going to jump around because there was so much going on.  Oh… and when Dr. Gifford grabbed his feet Santana pulled a little and started to wimper.  He KNEW what was coming.  He is holding memory and reacting to it!  Dr. Gifford said there is a lot more going on in that brain than anyone knows.  He is processing things VERY well.  We just have to wake up the nerves to get it on the OUTSIDE.  He also wants to get him to gag or puke as much as we can.  It will wake up those swallow muscles.  I was like… NO way.  We have tried that. (more to this… keep reading)
So yesterday the seizures kept coming.  That stimulation has knocked him down… SORT OF.  Ironically, he is EXTREMELY alert between seizures… after passing out for a little bit.  Unfortunately, these are THE worst seizures we have EVER seen!  But to me… he is trying and the connections just are not making it to the next cell.  He looks so frustrated.  BUT… in between these seizures, he is using both eyes together once in a while and is MUCH more alert and aware of his surroundings.  His nurse stated this morning that when she goes to the bathroom he makes this cry out… not like a cry or a seizure… but like a where did ya go?!  He knows what is going around.  He even gets his crunched up eye brow when he hears me yelling at the boys or dogs for something… yeah, I yell.  And he does not like it.  Last night we were at a birthday party for our friend/neighbor growing up.  across the gym, Jett screamed and he made his oh face and looked that way.  Not focused but look towards the sound.  Of all the kids running around and screaming he knew which was his brother.  A friend was talking and grabbed his hand and he made wide eyes and his oh face like oooooohhhh…. new person has me!  It was AWESOME!

During this AWESOME evening, it was mixed with some OH NO Moments.  I would look over and his eyes would be rolled back.  He was postictal or in a seizure.  It was happening often and he was doing it when I put him to bed so since I was going to bed and couldn’t track what he was going to be doing all night, I have him his rescue med.  It is 2 dissolvable tablets we put on his tongue.  I put them on and HE GAGGED!  HE GAGGED WITH LITTLE STIMULATION!!!!

WOO HOO!  THat is EXACTLY what the Neurological Chiropractor wanted to see!!!!!!!  Yay For the healing power in Jesus!  WOO HOO!  Even better!!!!  …  He kept spitting the pills out!  He was like a dog.  No way was I going to get that in his mouth.  I pushed it with my finger and held it… he started to go down and I said, DO NOT BITE ME MR.!  HE DIDN’T!  He is understanding.  Amazing… you give up on things  for a while and hand it over to God and look what happens!!!  He works through him!  Amazing.  Absolutely amazing.  There is no other word to describe this kid.  He is stubborn like his brother.  It is his time or nothing… Oh… and God’s timing too!  This is just an AWESOME way to go into 2010!!!!

But as we know with Santana… with every good comes bad to set him back.  But I am going to believe the good will fight off the bad and win in the end.  Of course these seizures are not fun.  It could only mean putting him on more meds.  Which means to make him more sedated.  Bleh!  But I also worry about his kidney’s.  He is having more dry diapers.  But the worst is the last 2 days.  He is waking up with a dry diaper and is not going until like 10 am. I know most kids do not go in the night.  But he gets 500 ml of fluid through out the night.  So I would think  he would tinkle even if it was a little.  So I am trying to contact neurology to get some blood work done before our appointment next Thursday.  He is also breaking out into these bad sweats again but cardiology said he is good.  So it has to be brain related.  But it is okay.  We have lots of good to go with the bad this time!  It is looking much more positive and we are finally stepping forward!!!!

Santana LOVED doing donuts in this thing!!!

Here is something weird. My nurse told me that she had a dream that she was doing the walking exercise with Santana then all of the sudden he turned around and started hitting her and yelling!  I think he wants to.  He sobs during it.  He does not like it at all.  THEN.. my dad face books me and tells me that my step mom, Lorili had a dream last night she woke up and told me about. Something about tasting Grahm Crackers crums on his tounge and wanting more then started talking slow and wanting out of his wheel chair.  HA HA!  I LOVE IT!  2 dreams in one night!!!!!!

The thing that is even MORE strange… I just read my friend Pams blog and she had a walking dream about Makenzie!  Did God decide to give us hope through dreams last night or something?! I am amazed by that!  And Pam, I believe this is possible.  I KNOW she is going to get up and walk!

I hope you all have a wonderful New Year!  Just the 5 of us is going to hang out.  Hopefully make it to midnight and go outside and listen to the commotion.  Although…living out here we may only hear horses, sheep, chickens and cows. … Oh!  So I guess we are going to hang with our neighbors!  James just called to let me know.  That will be so much fun!  Be Safe Everyone!!!!

Thank you all so much for your prayers and encouragement this year!  I really feel like 2010 is going to be MUCH better for Santana. I believe we are going to stay out of the hospital this year!  As much as possible!  I am going to believe we will see his spine reverse!  I am going to believe he will swallow in 2010. I believe his vision is going to come back this year.  I believe he will make more movements this coming year!  (oh yeah… he is moving his arms a TON!!!!  BOTH OF THEM!!!!)

Believe!!!

Please Pray…

In the beginning of this journey, we had some friends from our old church invite us to Scottsdale Dream Center for a healing service. Of course for Santana and for her brain tumor/cancer.   I am sad Yet happy (Bitter Sweet) to report that she has gone to be with the Lord on the 23rd.  But I must say.  This woman was an AMAZING encourager!  As she was going through her own valley, she encouraged me!  I wish I could have done more.

She leaves behind a husband and 2 kids under 5.  Please stop by their blog and leave an encouraging word for Joe as this has been a tough season!

www.dubrittoncreations.com

Merry CHRISTmas!

This is the Front of our Christmas Card...Click to enlarge

Back of Christmas Card ... Click to Enlarge

Merry Christmas to everyone.  I pray you all have a blessed New Year. Thank you for standing by another year.  Thank You to a bible study from Central Christian Church who adopted our family!  The boys will have a great Christmas!  I will be sure to post pictures!  You have truly blessed us!

I feel good vibes for 2010.  I am believing for a MUCH better year in Santana’s health.  He has had a HORRIBLE stormy 6 months… but I see the rainbow coming.  As we all know… a rainbow is a symbol of Gods promise!

MERRY CHRISTmas Everyone!!!!! Take time to remember what Christmas is really about.  Santa Clause and dancing snowmen are myths… BUT… JESUS is REAL!

Good day… oh wait…

Wow… the days just keep rolling by.

We have been going to a Neuro Chiropractor for 3 visits now.  Their insight is so interesting.  It is awesome to hear different views from different doctors and they all make sense.  I am very comfortable to have them work on my child as Dr. Gifford of Gifford Health Institute is my neighbors father.  It is an awesome place.  I may have to take up on their personal training they have there.  So we have been working on the brain… obviously.  And yesterday he got his first adjustment.  His ankles were WAY out. And he had clicking in his hips.  His right knee was twisted out… but with some holding of my breath and watching, he is much straighter!  The hips were an AMAZING difference.  He used Kinesiology or something like that to get those “in”.  No more clicking!!!!  WOO HOO.  The best advise.  The BEST MEDICAL advise Dr. Gifford Gave me was, “Get him out of that STUPID chair!”  Also when I asked him about spine or hip surgery he gave me a big “N-O”  Spelled out just like that!  They are saying they can use sound to change the way his body is positioned.  So we are doing Mozart in his right ear. We also are using a tuning fork to vibrate in that ear.  He really shows a level of alertness with that humming sound.  He wants us to pick him up and walk him around as if he was walking.  Hold him up and move him.  It is awesome.  He cried alot with his adjustments.  I MEAN SOBBING!  But he says it should hurt and it is a good reaction.  And the fact that he cried when they touched his ankle again was a good sign that he is thinking and remembering that he does not want that touched because it will hurt.  If pain is what wakes his brain up… so be it.——————————-

Ok… I wrote that early this morning than life happened.  Right when I stopped is when my nurse came in with 2 syringes of yucky blood from the tummy.  Totaling 90 ml of blood.  I am NOT running to the hospital this close to Christmas. NO WAY NO HOW!  He seems fine otherwise.  But his nurse did say that his ankles are really tender today.  =(  Man.  Just when we were off to a good start.

Oh well… we shall tie another knot and hang on.

Cardiology Appt..

So today we got a call that a new cardiologist could get us in in 2 hours.  Wow… same day appt. for new patient is AMAZING!  We went there. Did an EKG. Did an Ultrasound of his heart and he has got a GOOD HEART!  FINALLY GOOD NEWS!  Doesn’t explain the swelling or him breaking out in sweats and with the constant pneumonia.  They said he has every sign of congested heart failure but it is nice and strong and good to handle any surgeries.  Yay!  One thing off our checklist!

Thank you for the responses to the quilts.  Numbers 1 and 2 were hot.  I am sorry I had to give to first contact.  Remember it is plus $5 shipping and handling.  But here is what is left…

3.       This green and blue hydrangeas has a green and white gingham check on the back and it measures 50” x 43” and is not quilted it also is a tied quilt. $30.00

4.       This gold and blue quilt is gold on the back and measures 48” x 48”.  $35.00

5.       This one is blue and white flowers and measure about 41” x 41”.  $25.00

7.      The brown and red jar quilt is a Christmas themed quilt and measures 42” x 64”amd is $45.00

8.      This is a red and blue jar quilt is also Christmas themed and measures 44” x62” and this one is also $45.00

10. This quilt pictured is trimmed in pink and is blue, purple and yellow baby print flannel it measures 32” x 42” and is blocks on both sides $25.00

Snuggle Up For Santana

It is that time again!  My wonderful friend in Florida has made some quilts to sell and raise money for Santana.  This time she is going to mail it for me.  She has listed the prices of each quilt and all she asks is for $5 for the shipping.  There is so much we need for Santana right now.  We all know we REALLY want the quadriciser machine.  I think this will really help him with range of motion and decrease his tone.  There is an orthopedic surgeon in La Jolla, CA I would like to go see to.  But that will cost a lot with insurance deductible and the 20%.  So we are on a mission!

Please help us sell these beautiful hand made quilts!!!!

1.  This is a blocked quilt and is misc. Christmas prints.  It measures 48” x 48”.  It has snowmen on the back side. $35.00

2.  This brown polka dot is not quilted it is tied.  It measures 48” x 48” and is brown with white polka dots on the back. $35.00

3.       This green and blue hydrangeas has a green and white gingham check on the back and it measures 50” x 43” and is not quilted it also is a tied quilt. $30.00

4.       This gold and blue quilt is gold on the back and measures 48” x 48”.  $35.00

5.       This one is blue and white flowers and measure about 41” x 41”.  $25.00

6.      This is pink, blue and green hydrangeas.  It measures 34” x 42”.  It is blocked on both sides and has a butterfly quilted inside each block.  $25.00

7.      The brown and red jar quilt is a Christmas themed quilt and measures 42” x 64”amd is $45.00

8.      This is a red and blue jar quilt is also Christmas themed and measures 44” x62” and this one is also $45.00

9.      This is the green frog quilt.  It measures 41” x 42” and is $25.00

10.  This quilt pictured is trimmed in pink and is blue, purple and yellow baby print flannel it measures 32” x 42” and is blocks on both sides $25.00

3 Years gone by too fast.

“Never Gonna Be Alone”

[Verse 1]
Time, is going by, so much faster than I,
And I’m starting to regret not spending all of it with you.
Now I’m, wondering why, I’ve kept this bottled inside,
So I’m starting to regret not telling all of this to you.
So if I haven’t yet, I’ve gotta let you know…

[Chorus]
Never gonna be alone!
From this moment on, if you ever feel like letting go,
I won’t let you fall…
Never gonna be alone!
I’ll hold you ’til the hurt is gone.

[Verse 2]
And now, as long as I can, I’m holding on with both hands,
‘Cause forever I believe that there’s nothing I could need but you,
So if I haven’t yet, I’ve gotta let you know…

[Chorus]
Never gonna be alone!
From this moment on, if you ever feel like letting go,
I won’t let you fall.
When all hope is gone, I know that you can carry on.
We’re gonna see the world out,
I’ll hold you ’til the hurt is gone.

[Verse 3]
Oh!
You’ve gotta live every single day,
Like it’s the only one, what if tomorrow never comes?
Don’t let it slip away,
Could be our only one, you know it’s only just begun.
Every single day,
Maybe our only one, what if tomorrow never comes?
Tomorrow never comes…

[Verse 4]
Time, is going by, so much faster than I,
And I’m starting to regret not telling all of this to you.
So if I haven’t yet, I’ve gotta let you know…

[Chorus]
Never gonna be alone!
From this moment on, if you ever feel like letting go,
I won’t let you fall.
When all hope is gone, I know that you can carry on.
We’re gonna see the world out,
I’ll hold you ’til the hurt is gone.

I’m gonna be there always,
I won’t be missing one more day,
I’m gonna be there always,
I won’t be missing one more day.

Yeah, Time is going by fast.  3 years too fast.  This song hit me today when Jett and I were going to the store.  The part that caught my ear was “If you ever feel like letting go, I won’t let you fall.”    Another thing this song has made me think of is wow… I have spent so much time trying to find the cure and not spending it holding him and loving him.  And the sand is running out of the hour glass.  So now… I am here for Santana and I am here for my boys.  Time goes by to quickly to let time slip away.  I don’t want to miss the little things anymore.  I want to wrap my arms around him and tell him it is okay to let go.  These extra 3 years have been an amazing gift from God.  By the medical book.  There is NO reason he should have lived after being 45 minutes without oxygen and 30 minutes cardiac arrest.  God left him here to teach me compassion.  To teach me understanding.  If I didn’t experience this, I would be one of those ignorant people who stare in disgust that there is drool hanging out a childs mouth.  But now I am the one who can look into the eyes of people and wonder what could be going on in there lives that may be hurting on their own level of pain.  This has taught me to be a lot less selfish and see the needs of others.

Tonight we went to the pediatrician for hospital follow up.  The problem we have been noticing but not thinking much about was really bad today and I was reminded to ask her about it.  He keeps breaking out in sweats and getting clammy.  Sometimes after a struggle to breath or cough stuff up.  His feet keep swelling up like a big balloon.  He wasn’t urinating much today.  And now… we add another specialist to are list of 8 (pulmonology, Neurology, Orthopedics, Medicine and Rehab, GI, GI Surgeon, ENT) If you count Neurological Chiropractor… 9 and now CARDIOLOGIST which makes 10.  These symptoms are symptoms of the heart for sure.  She thinks he is going to need an echocardiogram done.  So we should be getting a call from the office to get set up with a new cardiologist.  It is scary to see him start sweating like that.  Tonight his legs kept turning a bit purple.  The pediatrician says as far as his urine output, sometimes the heart isn’t getting enough blood pumped out to get the kidneys turned on. And LORD knows how many damaging meds we are on for the kidneys.  So if there is one thing I don’t want him to have is a broken heart.  His momma already has a big one… he does not need one too.

Over the last 3 years, I can say I have wasted a lot of time and money on different therapies.  But the more I thought about all the things we have done, I have thought… WOW.  I got to do a lot of stuff I would have never done otherwise.  Not only did I take him to Florida for 2 weeks.  But my mom came with and we really got to hang out and laugh and enjoy ourselves.  Boy… if you want a funny picture… read one of those blog entries from January 09.  While stressful, we laughed.  Then as far as stem cells.  I got to take Santana out of this country.  Who would have thought.  AND, we met my mom in San Diego where her and my step-poppa took Jett and Tyree to Sea World.  We had fun those few days together also.  Then there was California for 3 weeks.  I got to be with my mother on Mothers day (sort of… she was sick) for the first time since she moved to LA.  AND on her Birthday.  It was good hanging out with her there too.  And I got to meet new and awesome people… MOTHERS… that understand what this life is like.  Santana is lucky.  Not a lot of kids get to go to Disneyland in their LIFETIME… James, it took 37 years… and some kids never get to ride horses.  But Santana has. He may not enjoy it like a typical child.  But we can say we have given him the best life he could live.  I don’t know that we would have ever made it to Disneyland at this point had we been living life as usual.  So I can look at the most important thing I wanted out of these trips and be disappointed.  But in reality.  In 3 years, I got more than I could ask for.  Time and bonding well spent as a family.  Honestly… I wish I had an excuse to go back to Florida or something.  I would love to spend that time with my mom again… poop all over and fire alarms going off any day!

So now that I approach the 3 year mark.  I can’t say HE IS IMPROVING!  WOO HOO!  No.  Those days are on hold.  Instead.  Our timeline is going backwards.  We came so far and stretched the rubber band as far as it can handle and now we are getting flung backwards.  So as Santana goes through drastic changes for the worst.  I hold him and love him and thank God for the extra time I got to spend with him.  And think of all the good moments before seizures and chronic lung disease came to destroy his improving brain and body.  Every moment is a gift from God and I will hold these times of rocking him and gazing into each others eyes in my heart forever as we all know the average child will not sit to endure it for long.

So tomorrow… today for most reading this.. I may have to find a hole to hide in for a while to gain myself.  But I take my boys there with me for they are all that matter in this world… even my big boy (hubby).  For without these men in my life, I would feel there was nothing to go on for.

So now I gaze into Santana’s black eyes and look into his soul for that smile he has been holding out on me for and can’t wait to see it shining bright in heaven.  It will be a million times more amazing there anyway.  But… if he wants to slip me a smile before he chooses to leave us on this earth … that would be okay too.  =D

I want to thank the people who has stood by our sides from the beginning.  I want to thank everyone who has shown us great compassion.  Especially as this journey seems to be closing in on us.  Your comments and emails have meant so much for us.  I want to thank the people who refuse to believe this is all we are going to get from him.  Oh how I long to have that faith back.

In 3 years, I have discovered your heart can be broken over and over again.  But I know my strength.. what little I have … comes from God and I know without my faith I would be in some Looney bin by now.  But God keeps me grounded even though the flesh likes to take over.  I am thankful I have that kind of relationship with my heavenly father that I can yell at him and then turn around and say, “I love you” and know he is right there with his arms around me through the anger and pain.

Those who hope in the Lord will renew their Strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. – Isaiah 40:31

Weeping may endure for a night, but Joy comes in the morning – Psalms 30:5

Savior, Please

Man… I just LOVE this song.  I know I can’t do this alone!  I need Papa!

Savior, Please… by Josh Wilson

Savior, please take my hand
I work so hard, I live so fast
This life begins, and then it ends
And I do the best that I can, but I don’t know how long I’ll last

I try to be so tough
But I’m just not strong enough
I can’t do this alone, God I need You to hold on to me
I try to be good enough
But I’m nothing without Your love
Savior, please keep saving me

Savior, please help me stand
I fall so hard, I fade so fast
Will You begin right where I end
And be the God of all I am because You’re all I have

Hallelujah
Everything You are to me
Is everything I’ll ever need
And I am learning to believe
That I don’t have to prove a thing
‘Cause You’re the one who’s saving me

Still in the Hospital…

But I think I am talking to myself out here. SO I can let my anger out since NO ONE is here to listen anyway.

THREE YEARS!  Less than a week away we hit the 3 year mark and it has been an ugly and cold journey.  I try to celebrate the anniversary date like a birthday.  Like a celebration of how far he has come.  I would do so this year.  But EVER since June 25th… the gears slipped in reverse.  We are going backwards.  Every waking minute is a YELLOW light… caution… slow down… EVENTUALLY the red light is going to brighten up everything but our day.  What happened to my most precious son took his life, took the life of his brothers and is killing us!  I know that I can blame the stress and pain I have been through these last 3 years on all my medical problems.  Arthritis, Plantar faciaitis, weight gain, and now the ulceritive colitis, that I can only pray the tests don’t come back more.  I can’t remember to take my birth control pills, let alone, the 10 pills a day I have to down my self for these issues. I HATE being in a hospital. I thought I would try another hospital because I could… and it was TOO close to the anniversary date to go back to St. Joes… after my anxiety attack last admission I did not want to chance it.

What happened to Santana is a big punch in the gut.  I feel like a got beat up by a ton of people.  I can’t be the mom I should be for Jett and Tyree.  I try.  But my heart.  My WHOLE heart is with Santana.  And it has been broken over and over again.  But I feel like the shatter is coming.  I need to be ready but I can’t.  I am not.  I don’t want to let go.  Even if his mind was to come back and he could talk to us, his body is long gone.  It isn’t fair.  Just when I roll him  over he cries.  He is in pain. And I feel it as if it were me.

You can say I am feeling sorry for myself or whatever but knowing that this happened and I had no control over it is a lot worst than if it was me.  If I was the one who was supposed to be watching him.  I have no excuse because I was not there. I don’t know the paramedic that saved his life.  I didn’t get to drag his cold, lifeless, DEAD body out of the water.  I didn’t even get to meet the ER doctors who worked on him to thank them.  Instead… I was 45 minutes away.  Living life as it should be today.

I am SICK and TIRED of watching him suffer day in and day out. I am SICK of living in hospitals away from my other boys.  I am sick of feeling like I am in a crowded stadium but my screams echo as if it were empty and no one hears me.

I don’t ask why this happens anymore.  I just want to know WHY LET HIM LIVE AND SUFFER LIKE THIS!  WHAT DID HE DO TO DESERVE THIS!  You can say I am angry at God.  Right now… YES.  I am.  And it is something I am working through.  I tell the truth for the people that are in my shoes so they know they can feel the same way.  I do NOT need preached at.  I got it under control.

I feel better.  I had to get it out.

Cardons Hospital…

IS SO FREAKING AWESOME!!!!  I totally love this place!  Sorry St. Joes.  I can say you guys are great for delivering food and have Awesome nurses… BUT THIS PLACE!  YES!  I AM BLOGGING IN MY ROOM!!!!  I have access to demand movies.  Arcade games and other video games, and THE INTERNET.  I don’t mind it a bit!   I wish I didn’t have to leave to get food.  But they do have a fridge in here.  And I can get Snacks right out my door!  Every room you walk into looks like a house in the hallway.  They have a full sized bed!  FOR ME!

Santana.. oh yeah.  He looks cozy too.  He has pneumonia for sure.  They are keeping him for IV meds.  He was super lethargic today.  Had a temp of 103.8.  Was puking vomit and LOTS of mucus.  Coughing.  YOU NAME IT!  So hopefully we can get him cleared out.  It smells good too.  It does NOT smell like a normal stinky old peds room.  I am just IMPRESSED with this place!  Did I mention it is like 25 minutes CLOSER.  WOO HOO!  THANK YOU CARDON FAMILY FOR BUILDING SUCH AN AMAZING CHILDREN’S HOSPITAL!!!!!  2 thumbs up!

Dont forget to vote on  the next slide show song.. I think I may need 2 or 3.  But for sure am using one I heard on the radio yesterday whether you vote or not… it isn’t on the list.  THANKS FOR BEING A PART OF OUR LIVES!!!!!!  Believe!!!