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!

Say it with me… AMAZING!

WOW. Santana never seizes to amaze me! Today has been an AMAZING video as you can see in these videos. The only odd thing going on is he is shaking a lot. Usually it is happening when we tell him to do something. So it is like he is trying to process it. And when trying to do it he starts shaking like he can’t get his body to do it. Hmmmm. Oh and breaking out in sweats. So I am going to take it as he is trying! He is amazing! Just wonderfully amazing! Anyone want to take a shot at me with their negativity!? Cause like the old rock and roll song… We’re not gonna take it! NO! We’re not gonna take it! HA HA!

OH!  And this morning before we were off to our crazy day, Nurse was suctioning nose and he FORCEFULLY used his arm to push her hand away and out of his nose!  GO NANERS!

The picture is from his killer hair cut he got today!  What a stud muffin!

The first video, he is standing on the stander and he was holding his truck really good and going forward with it. He was using his tone… for some reason he has had high tone today. But at least he is using it for something. He normally is really lose. Something is changing… don’t know what… but he is different. FOR THE BETTER. OH! ANd he was NOT using his AFO’s in the stander which is also amazing! GO go go go!!!! YAY FOR JESUS! WOO HOO! I needed this… really I did.

The second video is him with his school teacher and school PT. He was magnetic fishing. That wasn’t the good part. Besides the concentration in his face. He was gripping with his left hand which is usually super duper loose with no grip. Yahoo! Go naners! Go naners!

For those who could not see his other video… try this.. it is super small for your super slow internet. =) just kidding!!!
http://www.prayforsantana.org/SantanaStrives07_sm.mov

And for those who have normal internet use the link below. Let it load a second then push play if it doesn’t auto start.
http://www.prayforsantana.org/SantanaStrives.mov

Happy Birthday Father!

Just wanted to wish my dad a HAPPY BIRTHDAY!  Hey dad.  Can you hook me up with the senior discount at McDonald’s!  tee hee! Have a blessed day!

To my understanding some people can see the video…. are you clicking on the link?  If you are… then I made it too big for your connection.  I will make a smaller version and get it up!  Sorry!

Santana Strives 2007

Santana Strives 2007

This is the first year of Santana’s recovery.  I have 2 more years to put together.  Man has he come a long way… but has also lost a lot he gained.  Enjoy!  Click on link if it doesn’t appear in this window… remember to pause the music player below on the right!  Thanks for the prayers and for those who DO believe!!! (p.s.  If you ever wonder why I put 3 !!!… it is because it stand for Father, Son, and Holy Spirit… BELIEVE!!!

WestBound!

Santana actually seems like he likes the texture for the first time!

I should have slept in a bit since today we are driving over to California to pick up Jett. I can’t wait to see him. He has been doing awesome with my mom and step papa! I guess he even prayed for the graduation meal in front of all the disciples. Apparently he is gonna be called to be a preacher. Living this life, he has a great testimony. We are going to head out as soon as Santana is done with therapy. WOO HOO! I love driving. Listening to music. Thinking. Praying. Spending time with James in a confined space. Tyree screaming. HA.

Santana and his therapist was on the swing and Naners was focused on the sprinklers dad turned on outside. It was so cute. Sorry... it is blurry because they are swinging.

Santana WAY out grew his TLSO which is a brace that goes around him like a turtle shell to help straighten his spine. He had to get a new body cast. I was kinda sad looking at this cast. His curve is for sure more obvious. But I am excited because they offer new colors so instead of his swirl blue we are getting carbon fiber! He will look like a custom car hood I have seen on many cars! Sweet!

We did go to neurology. I get really down on those days and DREAD going. His seizure are in full force as we know. But we don’t need to increase meds. The reason? It is thought that the carafate that we give to coat his tummy to prevent the stomach bleed is keeping from his depekote from working. The good news is… NO MORE 2 am MEDS! he changed it to 3 x’s a day and the other 2 I do in the night can be changed as far as I am concerned! SLEEEEEEEEEEEP! Well… although last night I was up suctioning and changing diapers and taking his PJs off because he was sweating so bad.

So please keep us in your prayers as we drive to LA and then back on Sunday. Pray that Santana stays clear. Last time he hit that California air he got bronchitis. Thank you Pastor Mike and Vilma for letting us stay with you! You guys ROCK.