(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!

Praying for Trinity!

I am praying so hard for little Trinity and the family right now!  They have the whole family at the hospital and her mom is bringing her brothers to see her and explain that she could take her last breath.  I am sad.  I am sad at that thought.  That is the one I fear most… explaining it to the boys.  So I am praying peace on this family… but mostly praying God will breath life into this child.  She is an amazing little girl!  Please visit her website and send words of encouragement.  Hang on little angel!  We love you Trinity!

For Crying Out Loud!!!!

Today… well, and yesterday… has been the most AWFUL I have witnessed Santana to be since he has been home to this new life.  His tone is really high.  Sometimes you can’t even bend him at the knees.  His spine is rotated so he can’t even sit in his wheel chair without his brace because his back doesn’t sit flesh with the chair.  He is stressed out. Agitated.  Any noise that is quick or out of the blue freaks him out and he cries.  He cries and cries.  In this video I am posting from youtube, it is only a short cry.  But ANYTIME being touched today, he cried like this.  He is trembling.  He is breaking out into a sweat.  It hurts. It breaks my heart because he is in severe pain. I have no pain meds.  Motrin doesn’t do a thing. I can’t.  I can’t listen to this.  How can I be a good mommy if I can’t fix it. I don’t know what the deal is.  I can’t help him.  I can’t understand my own son!  I don’t want him to live like this.  It was said that maybe things are waking up and he is starting to feel what was obviously painful to begin with (his hips out of socket).  Great if he is waking up. BUT NONE OF THIS ONE FOOT IN THE DOOR CRAP!  I can’t do this.  It isn’t fair for him.  I ask for you to pray to take the pain away.  To relax him.  His body is so tight and stressed.  I am scared for him.

The only change is his meds.  The neurologist called on Thursday to say his depekote level was 4!!!!!  It needs to be between 65-100 to do it’s job.  2 weeks prior to this blood work, he was 36 which was low.  We had to move the Carefate (used to coat the tummy for his ulcer) 2 hours away from giving him depekote.  That should have brought the level up if that was the problem.  But no… His high dose brought in the number 4!  SO they wanted to raise the dose.  I said NO.  If it isn’t working.  Get him off!  So we are slowly taking it down.  But as we go down we have to go up on his seizure med called Lamictal.  I guess Depekote raises lamictal levels so they have to try and keep a balance.  But I don’t think this is the cause of the seizures.  I think the pain is.

I don’t understand why he does so good and crashes like this.  But I do know I have a God MUCH bigger than this.
I worry.  Deeply worry.  But there is another little girl that has been on my heart today named Trinity.  She is in the hospital due to o2 levels dropping.  She is on a vent right now and her picture on facebook breaks my heart.  She is a doll baby and I ask for you to pray for Trinity and her mom Meredith.  This is what her mom had posted on facebook:

Trini is not doing well at all. Her blood gasses are going up. They should be going down. She is at 87. I think it is supposed to be under 50. High CO2 can cause brain damage. The nurse said we aren’t at the point yet where the Dr. think we might lose her. I’m so scared that we are going to get to that point! Please…everyone pray!!!!!

Thank you for all your prayers and for believing!!!!

Yada Yada Yada

I knew I had a lot to write. But I don’t remember what it was. I need to get better at just writing when I think about it.  So this is my disclaimer… this entry… along with most of course … will be all over the place.  First to go back to the last entry.  I emailed a copy of Santana’s hips to James’ Brother Whom is an orthopedic doctor in Mexico.  I didn’t tell him about the drama going on here.  And he answered back with what I thought … “Hips are out they NEED to be put back in”  That is 3 against 2 opinions here!  The 2 against it are of course state or federal run programs.  We know how funded those things are!  Which is just silly cause we have primary insurance on Santana.  So… my next step is to get a wheel chair van and haul my baby boy to Beverly Hills so Dr. Kay can work on him.  May marks a year that he last saw him so I am sure he needs to go back for an appointment before scheduling the surgery.  So it will take a lot of driving, a lot of money, and 20% cost to us of surgery and hospital stay and I am sure hospitalist.  Plus if we have not filled our deductible yet.  YOWSERS!  If you wonder why a wheel chair van is so important.  Here is a link to what a spica cast looks like. Poor Santana is all I have to say.  Poor me and the nurses too!  The diaper will be real fun to deal with!  So when I look at those pictures I have to sit back and weigh my options again. =/

Santana has been fighting off junky junk and lots of coughing.  We were supposed to take him to the doctor Thursday… after canceling OT for it.  But I ended up canceling that appointment last minute because I was waiting for a contractor to go over some stuff at the house.  By that time it was too late to get OT back. =(  Which is fine… I don’t think I could have gotten Jett in time anyway.  HOWEVER… he did start doing better that day.  Not waking me up and coughing all night!  WOO HOO!

Santana started a new speech therapist that I am really excited about.  She brings lots of goodies for us to work on with him.  And she is also working on communication, right now eye gazing.  So if he looks at the picture with the sucker, we give him a taste.  He looked right at it but then it was Watermelon.  He does not like the tart flavors.  By then he just shut himself off and when asked if he wanted a sucker he would shut his eyes.  He does that often for the therapist!  The only one who can’t work through that is Vision.  The little stinker knows what he is doing though!  As soon as they leave he wakes up!

We have a crazy busy schedule coming up. Santana has 14 hours of therapy during the week one includes an hour of drive time.  Plus he has an appointment in Phoenix on Friday then again next Monday. That is about 1 hour and 45 minutes of driving each appointment.  Plus the chiropractor and his therapies we are doing at home (AND SEEING A HUGE DIFFERNCE!). I like it busy though.  Less time to think. Less time for missing the past.  ALTHOUGH!  Mr. Tyree the Tyrant can keep me on my toes with all these run arounds!

I have been so backed up with all this, and the research, and getting taxes together that my house was falling behind.  Last night James had my step mom come over and they cleaned the sinks, floors, walls (yes walls… dark colors in dust town was a bad idea).  My house looked so good waking up too. Thanks guys!  While they did that I worked on my medical tax stuff.

Last but not least.  Santana is turning 5!!!!!  His birthday is on the 18th!  5 is a big deal!  He will be going to Kindergarten in the fall!  AT JETT’S SCHOOL!  I am so excited about that!  So we wanted to give him the best birthday we could! We are going to through him a party/fundraiser.  I can not give more detail than MOST likely it will be on the 20th.  So SAVE THE DATE!  Everyone will be invited.  We are trying to gather some things to do a raffle.  So if you can help us out that would be totally awesome!  I really want to make this a chance for people in the Valley who have read about him and could actually meet him.  We find MOST of the time people don’t want to meet him because it becomes too personal.  I disagree.  I promise you will fall in love with these big brown eyes!  And everyone tells us pictures do NOT do this boy justice.  So I hope to meet many of my readers whether they be complete strangers or a blast from the past.  Details to follow.

Keep praying that this crap stays out of his lungs!  We have big plans for this kid!!!

Lovely Bones

Right now.  I am mad.  I am very angry!  First I gotta go back to one doctors statement about Santana’s drop foot.  Within the first few months after Santana’s accident, we were at an appointment with the medicine and rehab doctor.  My mom was with me… boy does she always have the right things to say.  She asked the doctor why they didn’t brace him right away?  The answer we got, “Because they didn’t think he was going to make it out alive.”  Heaven forbid insurance pay a couple hundred for braces!!!!  Look at the long term problems we face now because of it… I swear whoever decides to deny things must not look at the big picture.

Anyway…  back to today.  So I have been watching videos and researching Spinal rod surgery and Hip dislocation surgery options.  With the hips… I became fuming mad when I read an article on About.com that stated this:

- “The success of treatment depends on the age of the child, and the adequacy of the reduction. In a newborn infant with a good reduction, there is a very good chance of full recovery. When treatment begins at older ages, the chance of full recovery decreases. Children who have persistent hip dysplasia have a chance of developing pain and early hip arthritis later in life. Surgery to cut and realign the bones (hip osteotomy), or a hip replacement, may be needed later in life.”

They are out more now than before. _ This was Santana May 2009

Normal Hip X-Ray on the left- taken off google.

With tears in my eyes.  I am sickened by this statement.  Sure he doesn’t cry when the doctor lifts his leg up now.  BUT WHAT ABOUT THE FUTURE?  What will he do then?  HOw much pain will he be in?  How much harder will it be to put those hips back in?  What frustrates me more is that there is a brace that MAY or may not have helped if they would have just started taking xrays in the beginning.  But I only found out his hips were out because of a broken femur and the doctor… who was not even our doctor… wanted to put them in place.  But the doctors in the clinic.  They say why?  Why?  He isn’t walking!  MAYBE BECAUSE I DO NOT WANT MY CHILD TO LIVE IN PAIN! That is why!  I think the worst of this could have been prevented.  And the more I research this.  He has NO femoral head!  His joint socket is not deep. HOW COULD THEY JUST PUT IT IN if that is what this doctor here does?   OF COURSE it will just come back out!  DUH DOCTOR!  I am not an idiot!  And by looking at his hips I don’t see HOW it can go back in unless you want him to sit in the splits all the time!

The more reading I have done, Hip resurfacing would be a good option for him.  It is not a total hip replacement but a metal femoral head and joint socket.  They will be meant to fit into each other.  The worst part of that surgery is they have to cut the femoral head… NO PROBLEM HERE!  HE doesn’t have one!  SO why can’t they do this?  Oh oh… WHY SPEND THE MONEY IF HE ISN’T FUNCTIONAL?  These people need to get off their keesters behind their desks and come meet these kids and people.  Don’t deny a decision until you really get to spend time with them!  NEVER DENY A CHILD!  ESPECIALLY MINE!  Whew… better get off my soap box.

The doctor in Beverly Hills wants to do the surgery.  He described it as reshaping the bone and digging out the socket.  Again… I think Hip Resurfacing sounds like less work with better outcome.  So now I sit and wonder why these doctors have no hope.  Why they don’t try.  OH YEAH… because they get paid the big bucks later on when they have to fix the problem!

My next step.. To find ANOTHER opinion about his hips.  I need to find another orthopedic doctor.

As far as Santana. He has had a rough night.  He vomited as I was loading him in the car last night after my nieces 18th birthday party (Happy Birthday again Brittney!).  Then when I put him to bed and did his meds, he vomited again. I know for a fact it is vomit because it was red… like his medicine that goes directly in the stomach via G-Tube.  The fact that he is even sick (sad face) but also the fact that he has a FUNDO and should NOT vomit!  I am not sure I would do it again. Unless he started aspirating the vomit of course.  But I don’t know.  He was running a fever last night but not today.  Seems as though his ear still hurts and it is his last day of anti-biotic.  Pray he gets over this fast so he can continue his AMAZING recovery!

Mr. Awesome

Santana projectile vomited a little bit ago.  But he did AMAZING once again.  I see change! And change is good!  He is still feeling eh.  But his level of alertness has risen!  You go boy!  I am so proud of him! He is trying to hard!  I love him to pieces!

Tomorrow is orthopedics. PRAY.  Pray that I am not discouraged!  Pray the doctor listens to me.  Pray we can get somewhere with him!

A few posts back, my friend Pam (see Makenzies site in the bar to the right) posted about Miracle Flights wanting her help picking up a check at Sams club for them.  I now know what it is like to give back. Pam was very excited to give back. And now I understand what that is like.  They are calling all their kids in every city to pick up donation checks.  And they called me tonight to see if I could cover Chandler Walmarts and pick up donation checks. OF COURSE.  I told her I would cover Queen Creek too because they didn’t have anyone there.  If that is the least I can do.  A flight to his appointments for the 2 of us is NOT cheap and this is such a blessing!  LOVE this non profit!  All non profits are struggling right now and many have helped Santana.  So don’t forget them when you feel the need to be generous a lot of these valid non profits help kids like Santana!

Enjoy the picture of him holding his head up… WAY past his goal time of 5 seconds.  And SITTING.  NOt as good as that other video, but we are starting from scratch.  You can view all videos at www.youtube.com/iheartmyboys

www.youtube.com/iheartmyboys

Murphy and his Law…

Yup… Murphy and his dumb legal stuff.  I said it. I said WOW SANTANA IS DOING GREAT!  And Murphy had to slap me with a ticket!  What a bad day for Santana.  How can he go from Mr. Incredible to what he went through today?!  His O2s were low… on 2 liters of oxygen and still was only 91%.  He has had several seizures. One the nurse said it knocked his O2 to 60%!  That has NEVER happened.  His ear was running out with gunk.  He was super pail with pink cheeks.  He cried every time he was suctioned.  He cried every time he was touched.  Just not doing so well.  Took him to peds and it was an ear infection. He was not swabbed for anything else.  =/  They gave him ear drops and zithromax.  and off we go.  He is pretty alert right now.. although he has had 4 seizures in the last 20 minutes.  He is shaking like a trembling right now.  strange.   At least he is alert.

For now on… I am keeping the good on the down low.  Every time I blab my mouth Murphy’s law kicks in!  =(

We are working on a birthday party/fundraiser for Santana.  So if anyone has any raffle items they would like to donate… I will grovel at your feet!  Let me know!

New Beginnings

“Do not remember the former things; neither consider the things of old. Behold, I am doing a NEW thing!” – Isaiah 43:18-19

Wow. Should have found that verse sooner. God’s Timing… I know. But WOW! Maybe this is the problem. I have such a tight grip on the past. I so badly want things the way they were before December 16, 2006. But the reality of it is. I need to let go. God is trying to show me this new thing… but I am stuck in the past. I fear letting go of what is comfortable to me. And by not letting go, I am not trusting God.

This is a new year. A new Decade. I believe there is so much more new to come! 2010 just sounds like a nice good and even year to start things off right. And the week Santana had, I think we are on that path! God has really worked in that kid this week. The best thing about it we didn’t have to put out THOUSANDS of dollars to get what we got this weekend. God is free… In so many ways, God is free. I wake up several times a night and when I do I just talk to God asking him to show himself through Santana and to give us the strength and belief to go on. And He has. Without a doubt. I am seeing the work of God in MY SON! It is easy to forget that God is right with you all the time until you see his work right in front of your eyes. And that is the experience I have experienced this week!

The biggest miracle besides what he is actually doing is his O2 levels have been AMAZING! He has not needed any oxygen to get though. ALL WEEK he was 95%! Saturday… 99% He has NEVER been 99% he is doing amazing! Absolutely amazing. That is a miracle. 6 months we thought this Chronic lung disease was going to take him down… hard and fast. I didn’t think he would make it to the end of the year to be honest. All that talk about a trache and bi-paps and going on a vent. NOPE! God stepped in and saved the day again!

I talked to a few moms and asked what they did to really get their child to move. Floor time was the answer from both. And honestly, with 3 Great Danes and Tyree, that has always been scary for me. But I know I just need to do it! And I was talking to one saying they noticed the biggest difference when they took their children off of meds. These medications Santana is on… 17 of them… are pretty high doses. I have been told that some of his seizure meds are at a dose the neurologist would give me… coming from the doctor himself. That is kind of frightening. So maybe I need to slowly take one away. It would take a VERY long time as many as he has. Then of course when I start thinking like that, seizures start to increase. WHAT?! Is what I like to yell when things change for the worst. Aiming to God of course. LIke… WHAT DO YOU WANT FROM ME. So I thought I better not touch. At the same time. WHY give him drugs that are not helping anyway? LIVER DAMAGING DRUGS! So I am in prayer on what to do about this. If seizures are the same at the next blood level check… which is Weds. The neurologist may start to let me take things off in the seizure department. We will see. But Most of the bottle do say, May cause Dizziness. So obviously it will dope him up a bit. I am a bit scared to mess with what is going so good now though. But it is a risk I am willing to take. We will see.

Speaking of Wednesday. PRAY for this appointment please. Lots of decisions have to be made and it isn’t easy when I have a million opinions coming from different directions. I lay at night asking God to take away all the other voices so that I can hear him clearly. But as you know, his hips are out. Neuro Chiropractor wants to see them in sooner than later. We were told that last May when Santana broke his Femur while we were in California. The doctor there in Beverly Hills said call my scheduler. Lets get it done. I really want to. I do. I think he is sometimes in pain with his hips dislocated. But no one here will do it. So I am going to go in and tell his orthopedist that I only trust him to do surgery to suck up to him as much as possible. He should be happy I trust him… even after he cut Santana’s femoral artery and veins on accident in October of 08. If I can do it here, it is 100% covered and CRS will let us borrow a special chair for his recovery. If I go to Beverly Hills, we have to pay 20% of insurance plus deductible. 20% could easily turn into a VERY high number when you are looking at most likely an ICU recovery with his condition. So that is very scary. But on the other hand, he is well known for this surgery and I know I would not be getting a hack job. I want it done. I do. But first I need to find a wheel chair van. I would NOT be able to take him anywhere in his cast. He would not fit in his car seat. SO needless to say… an expensive van comes first. Can’t believe how much a modified minivan cost. And here they are very hard to find used. I just don’t get it. So our outlook this year is a van than surgery. Then we would LOVE LOVE LOVE to have the Quadriciser for home. But that $15K machine is half of my van! Eeeeeek! So I wait. I sit back and wait for God to show himself again.

Gods promises are so awesome. But the waiting is hard. VERY hard. But this is a new year and I feel things are going to start falling into place. I am going to grab that devil by the horns and kick him back to Hell and away from my family! He can’t do squat as long as we are on God’s team. And WE ARE! Believe!!!

In 2010 we will witness Miracles again!!!!

P.S. Our deepest prayers and sympathy goes out to Haiti and all the families that know people in Haiti.  It hits close to home because James did a mission trip there to run a youth camp when we were engaged.  He came back changed forever and his heart is breaking for these amazing kind hearted people.  Keep them in your prayers.

Some More Awesomeness!

Santana was doing GREAT with this sucker yesterday!  His tongue is moving around!  The short video, when I pull it out he wraps his lips around it!  WHO IS ROCKIN IT?!  GO SANTANA!  You Awesome little child of God you!