St. Joe’s ICU

Santana is in ICU due to Seizures. If you have not been following, you can see updates on the right bar under Twitter Updates. To read them all you can go to www.twitter.com/prayforsantana

World’s Best…

It has been another crazy week gone by.  As you can tell from my twitter, We had a quick scare with the G-Tube.  Santana was bleeding from his Stoma.  I was scared.  But I jumped online where I knew I could find Makenzies mom, Pam (see her site listed under BlogRoll).  She assured me that it was most likely from using the Silver Nitrate which we use to burn off granulation tissue.  So he is ok.  Whew.  I cleaned it all up and it was fine.  Then the next morning (Sunday) he woke up with a 102.5 fever.  That freaked me out a bit thinking there was an infection.  But once again… he is ok.  I gave him some Motrin and cold rags and it was gone about an hour before church and it never returned.   We are still dealing with Seizures.  He has had 7 since he got up until 9:40 am.  Neurology called today to check on him.  We have to go get some more blood work done by Friday.  He is on so many meds that his body could easily become toxic.  So we have to monitor it closely.

I need to take some time on this blog to thank James.  Sunday was Fathers day and what a great father he is to our kids.  He is AMAZING.  He gets Father of the Year for sure!  He works so hard.  Most of the week he doesn’t get to see Tyree because he is sleeping when he leaves and sleeping when he gets back.  James works LONG hours and drives a hefty distance for them.  He is making sure we get into this house stress free.  Well… stress in inevitable.  But you know what I mean.  He works and works and he still comes home and helps with the boys and entertains.  Not to mention dinner and all that too.   He doesn’t always understand my stress but he tries so hard too.  And let me tell you!  That is HUGE because I can be a basket case.  An absolute MESS!  We had a great Fathers day with him.  We had a huge water fight out front and ran around laughing so hard.  It was the first time Jett James and I have laughed together in a long time.  And what a relief!  Then we loaded  up and had dinner on our lot… well… now house.  Sort of.  But anyway… What a blessing it was.  Every time we go there we never want to leave. We can’t wait to get in.  So what I am trying to say… James is the BEST daddy any kid could ask for!  Under all this stress he finds time for all of us.  We Love You James!

Of course since I didn’t have time before, Happy Fathers day to my dad and Step papa!  All I can say is, I hope I have made them proud for them to call me their daughter.  Thanks guys!

Time to get ready for the Chiropractor!  I will post some picture up later.  It is uploading to the computer from my phone now.  

Pray for Seizures to go away!  Pray for the hips to stop hurting so much!~  He is crying a lot for those!

Santana isn’t worth it?!

As usual, yesterday was a disappointing day of appointments.  But I handled it well.  YAY!  No crying!   ha ha… sad.  But anyway.  Neurology wanted us to go in at 7:15 for an EEG.  20 minutes go by and Santana did not do ONE!  Stink!  They are supposed to stop it at 20 minutes but went 5 extra minutes and managed to get 2 different kind.  YAY!  It is a good thing they recorded it.  I am not sure what they are going to do with it recorded… But YAY!  I just wish he would have stormed like he does here.  Although, in the morning, we started giving him his Nitro cream.  So maybe it opened some stuff up there.  HMMMMM.  The weirdest thing about the whole test, they put a strobe light in his line of vision to see if he seizes but when I was watching the blinking on his face, I got a bad pain in my right front brain, like a migraine (which I have so often) but when I looked away, it faded away.  Then came back when I looked at him again.  Weird.  So I don’t know how he stared dead straight into it!  

After the EEG, we headed over to CRS across the street for Orthopedics.  The Xrays came back with no more break but  A TON of new bone.  His leg still looked swollen but it was hard as a rock from the new bone.  I was like… WOW, can we do that to all his bones?  he he.  They didn’t want that responsibility.  He better not break anymore or they will think I did it on purpose!!!!  So anyway. I asked about his hips and he said ABSOLUTELY NOT.  WHY?  People can still walk and bear weight with them in.  Ummmmm…. OK?!  Maybe if his bone had a socket to go into it would have been stead and not broken… maybe.  Then he said… RIBS ARE MOVEABLE.  Let me tell you guys… his chiro does not even want to adjust because it is so funky.  So I told his Ortho dr. and he said they shouldn’t touch him anyway.  So I started defending them and telling how the cold laser therapy has helped a lot and he fires back that I need to ask them for 1 proven case out of 100 that a chiropractor has helped a situation like this.  I was so mad.  He said they are just stealing your money.  But I got to say, no… they do it as a service because they want to help out with Santana.  What could he say there… Then he said, You can get other opinions about his hips… and I say, we have a Shriners appt. in September.  Then he said, he knows all of those doctors and non of them would want to do it.  Nor would any doctor.  So he was bitter about me going to a doctor in Beverly Hills.  But HELLO… his leg was broken?! Then he says… if you are going out of town to do his surgery, who is going to do his follow up care?  Basically releasing himself of Santana. THEN… On top of all this… He did not touch Santana ONCE to feel the ribs for him self.  RIBS DO NOT MOVE THIS MUCH!  SO that was frustrating, but what am I going to do about it. Smile and walk away thinking… if you don’t want to be a part of seeing something amazing some day, it is your loss.

 OH!  And the most important part of why he got me so wound up… When we were looking at the xray I asked what they fixed the vein with because it shows on the xrays.  He calmly says metal clips… like DUH.  I said… WOAH… I was NOT informed there was metal in his body!  What if he had gotten an MRI?  He said they would suck up right into the machine.  Like ha ha.  I can’t believe I was never told this. I could get really angry.  But this is when God showed me the BIG picture to a situation.  When we went to Florida in January Dr. Hammesfahr wanted an MRI done.  2 times that appointment fell through because they wanted him to go under and they couldn’t work out for that to happen.  He told me to ask Neuro at home.  His neurologist said he didn’t want to, there is no change, why put him out for something he doesn’t need.  URG!  I was so mad then.  BUT GOD WAS PROTECTING SANTANA!  AMAZING!  THANK YOU JESUS!  Had Santana did that MRI, those clips would have came out and he would have bled to death.  WOW.  I love when God says… SEEEEEE…. TRUST ME!  That was an exciting part of the day!

Friday we have an early appointment with his Physical Medicine and Rehab doctor.  I pray I don’t hear a keep doing what your doing line again.  Cause If I was doing a good job, his spine would not have curved and extra 20% in a year.  Yeah.. he is now at 69.4%  WOW.  Bad.  

I better get going.  It has been a busy week so I need to get my mind settled before my day starts.  I don’t know why I got up at 6 am.  But whatever.. I feel good!  =D  Have a BLESSED day everyone!   Believe It!!!!

Framed!

What an eventful week!  Our biggest scare, as you may have seen on the twitter updates, is seizures.  2 times this week he fell half way off the chiropractor table from a seizures.  His body doubles over and when going back down, his legs fall off and he slides down.  SCAREY!  He will not be left alone on an edge… EVER.  Maybe it was all that ab work out he had at NAPA. They are just out of control.  Different than he has had.  And A lot… Like 5 plus an hour!  So his neurologist worried… A LOT.  He wanted me to take him into the ER.  But he said he trusted my judgement.  He said that if I am worried, he is worried.  So instead he had us get his blood levels checked early Friday so he can check what he can do as far as meds.  So now he is on Phenobarbital (the newest) I had to give him a triple dose last night, Topamax, Depekote, Traxene, and Klonopin Wafer (which is supposed to be a rescue med only… now Twice a day!).  That is some heavy Narcotics he has processing through his system.  That is NOT including Baclofen (for his high tone [Stiffness]), Pepcid, Rhinocort nasal spray, Albuterol & Pulmocort (SVN treatments).  Crazy!!!!  Plus all his naturals!  This kid is DRUGGED!

So we expected him to be out cold.  Nothing to him.  Well, while the seizures are still going on, only 5 today so far, he is AWAKE and ALERT!  He keeps making these new noises like he is trying to talk!  James and I both have heard Yes and No.  I SWEAR!  It is so crazy!!!!  He has been stretching and yawning ALL DAY long.  I love when he does that.  His body moves all over to get a good stretch so I know he has the ability to do it!   

I am still doing homemade food.  I can not remember her name for the life of me… but if you are still reading this… THANK YOU FOR THE MAGIC BULLET!  It has come in handy!!!! It makes it easy to do his food.  LOVE IT!  Somedays I do want to give up as it is a lot of work.  But I want to hold off.  I am going to ATTEMPT to have a garden at the new house and grow his veggies.  We will see how that goes!  Speaking of New house…

Last Friday night, James and I had a date on the Cement Slab and ate dinner.  THIS Friday night James, Jett and I SLEPT in a framed house!  They are kicking some major BUTT!  It is BEAUTIFUL!  I didn’t imagine it to be so AWESOME!  Vineyard Custom Homes along with Steve Simpson Design and Architect… It is MORE than we ever wanted or asked for!  I love it.  They have put a TON of thought and work into it.  I am in SHOCK at how fast this is going!  Amazing and Beautiful!  ALTHOUGH… I do feel like the couple on Friends with Money and am blocking the view to our friends and neighbors Jaimee and Nick.  I AM SO SORRY GUYS!  I had NO idea it was gonna be like this.  =D  I am adding some pictures of the frame.  Just click on them to see larger version.  But we had fun sleeping under the stars.  It wasn’t until the AM when we were talking to the neighbors that they have Scorpions in that neighborhood.  If I knew that first, you would NEVER have caught me sleeping with no tent on a blanket.  Eeeekkkkkkk.  We have been lucky in our last 3 house… even the house I grew up in since 1987… have NEVER seen a scorpion.  Black Widows.. yes… No scorpions.  There is a reason to love my cats!!!  =D
Oh… another important thing… Shriners hospital accepted Santana at the Utah branch!  Yahoo!  His appointment is September 1st!!!  I can not wait!  They will do xrays and talk about his plan of care as far as orthopedic is concern.  Talk about surgeries, braces and whatnot.  this is HUGE!  Our therapist knows of a family that did this and they are going to redo their bathroom for ADA and get them a wheelchair van!  INCREDIBLE.  I am excited to see what they can do for Little Santana’s body!  I guess the other family they just flew the child and parent for a day for the first appointment.  It will be like Driving up to St. Joes… well… plus security and all that!  But whatever.  Thank you to Shriners!!!!!

Speaking of Orthopedics, we have it Wednesday!  We get that cast off… and Lots of xrays!  Stem Cells or not… I need to see those ribs!  Then Friday he has a Medicine and Rehab (spasticity clinic).  Pray we get some ideas…not just… keep doing what you are doing!

Last but not least.  Santana’s buddy, Luke is doing his LAST week at Napa.  He is doing INCREDIBLE!  The pictures are amazing.  This kid is amazing!  This family is WONDERFUL!!!!  You think I am strong?!  Stacey is my HERO!  PLEASE PLEASE PLEASE stop by their site and give words of encouragement.  It is VERY exhausting that last week!  Don’t just go to their site and look at the pictures… you will think in your head… AMAZING… Tell them!  You have NO idea how good it is to hear comments of encouragement!  Luke  You are AWESOME!  I know you are  going to be helping Santana do this stuff someday!  

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The Good, The Bad, and The Ugly

The good is they are coming right along with our house!  The frame is going up!!!!  How crazy is that?!  When I left for California it was all dirt!  I am so excited.  We have lots of meetings to schedule.  It is tough to work that all in. But if it gets the house done…YAY!  

The bad is Santana has an ear infection.  Yuck.  Poor kid.  But he is still fighting.  

The Ugly is… his left ribs are dislocated.  Santana’s therapist at Napa said they seemed odd.  But  today when I went to the Chiropractor, he said there was a rib on the right side out he had to put back in.  Which reminded me to ask about the left side.  Yup.  He has some funky floating ribs going on. That is Ugly. What is happening to his body is UGLY!  I just want to look up at the sky and yell, “WHAT?!??!!?!?!”

I have had a bad couple of days.  I am just frustrated with the way his body is going and giving and giving and giving to him and not seeing change.  So I tried it all.  God… it really is up to you!

So that sums it up.  I have a migraine coming on so this will be shorter than I thought.  I will add some pictures of James and I hanging out and having a late dinner on our lot from the other night.  It was fun.  I can’t wait to move there!!!!  

Gotta get off the computer.  Head pounding.

Santana… Absolutely AMAZING!

I have been slacking on this thing! Sorry. I have SO much to write I will not attempt to do it all tonight. But I did want you to know we are back and safe. I am sorry I have not updated. I am stuck in the facebook world that I forgot about my other loyal readers! Thanks for checking in.

Santana is amazing, ambitious, boundless, brave, capable, confident, courageous, determined, eager, faithful, fearless, incredible, productive, receptive, steadfast, strong and tough… just to name a few adjectives (in alphabetical order). I want his strength. I want to be like Santana. I am NEVER allowed to whine about how sore I am from my 1 hour workout. This kid fought through 4 hours a day for 3 weeks! Plus another hour and half of Tomatis Therapy. I was tired and exhausted. But Santana… he did not complain. He broke his leg and was casted by the 4th day. AND YET… HE STILL WORKED HARD!

The therapists were incredible. I can not believe how they got Santana to respond them. Santana knew what they were saying. He would start to give up and Raf would yell, “Santana, I am not giving up on you… don’t you give up on me!” Then you can see Santana kick in. He knows EVERYTHING you say. He understands. He would start to whine and they say, STOP… he would! He would want to swing his arm out and they say, “What are you doing with that arm?! Put it back!” He responded. He listened… he gave lots of dirty looks… but he did what he was told! Except the day he filled his pants with detox. But who could blame him.

They taught me stuff to carry on at home. Totally awesome. SO HARD though. Raf holds Nanas like NOTHING. I have major flexibility issues trying to get him in the right position. But with time I will be able to do it! I need to make some sand bags. They positioned him WONDERFULLY! It is amazing how straight they got him! I want to hire him to work at the house all day long! Back here everyone is saying… they are too mean to Santana, they are rough. But until you are right there and try it yourself, you would not understand. He kicks in. His awareness kicked in doing that!

What else. I got to take my mom out for her birthday and my friend Kim watched Santana at the hotel. That was nice. Santana could have came… but he was PASSED out from therapy. Oh, also, James came with the boys for a weekend trip the first weekend. That helped time go by faster. I thought that was amazing! Then the following weekend he came with them and stayed the week. It was good to have us all together. Tyree doesn’t do so well in confined spaces but he survived. I am not sure we did… but he did! =D We went to Hermosa Beach, but stayed in sweat shirts and under blankets. But Jett and Tyree LOVED it. We went to the promonade in Santa Monica and walked around and had dinner for James birthday. The last Friday, my mom and step pops watched the boys while we went to a Mexican Restaurant on Rodondo Beach that has the MOST beautiful view of the beach and ocean. It was nice to get away after a long week.

We got to go to a friends house in Irvine for lunch and let Jett swim on our last day. I really enjoyed seeing them. The last time we had a good time together was a few months before Santana’s accident on a cruise for Nissan. What a good time that was. It is always great to see wonderful friends…. and be awake… Right Tom? (He came to the hospital in Jan. 07 and I was PASSED out and didn’t know he was there).

And here we are… from 60-70’s weather, to 90s and 100s. NO FUN! I miss California more than you will ever know. It was kind of scary to be given a home program and say see you! I am afraid I will not be able to keep up with it and he looses all he gained. Most of all, I fear that his surgery will loose a lot too. I want to go back. My goal is to go back!

I am going to close now. I have my SUPER long meds to do. Urg.

Please keep Santana in your prayers and focus on seizures. They are back and more than ever! I am not sure what is going on there. Speaking of… please stop by Zanes site (see link on right). Jennifer has been in the PICU for his seizures. While we are on the subject of prayers… Luke (see link on right) is over at NAPA with Raf now. Stop by and leave them encouraging comments. You have NO idea how important encouragement is from you guys during times like this. Thanks for those who stopped by and lifted us up while in California. With a broken leg, it was a stressful time. You guys encouraged us.

New Videos Posted to youtube

You can pause the music on this site by scrolling down and hitting the pause button on the  dancing bear on the right.

I have not been feeling well at all. So sick. Last night was my worst. I almost had my mom come over so I can go to an urgent care. I could not breathe and had the shakes. Poor Santana had a lot of junk too. I bet he was worst. It is hard to take care of boo when I am just as sick. But we are survivors around here.

Last night I started him on his 13 new Natural detox supplements. It took me about an hour to do it. The bad thing is this… He detoxed himself during therapy!!! I thought he peed through.. but what a surprise I got when I opened his diaper. Poop… EVERYWHERE! ON HIS CAST! GRODY! So yeah… he is getting all that crap out of him… no pun intended. =D

James and the boys come this weekend to stay the week. YAY! I can’t wait to see them again. I miss them like CRAZY!

Continue to pray for Santana to build strength. He is AMAZING. Pray for his little lungs!

Santana the Earth Shaker!

It has been a crazy, busy week and a half.  Santana has worked his butt off.  He has broken a leg.  He got information about the extensive hip surgery he needs… =O  … and both of us has bronchitis junk going on. F-U-N.  Yesterday, we saw the naturapath doctor, Dr. DiTuro.  He went over Santana with Muscle testing and said he had Bronchi in upper right lung.  He is still filled with heavy metals.  He put him on some stuff for that too.  He is on 13 natural meds now on top of the 4 or 5 we have at home.  Today I was so congested and he muscle tested me and is giving me Garlic tabs for that… better than antibiotic, I guess.  He muscle tested me to see if I had heavy metals and I do.  So it must be rolling of the dirt on the reservation.  Uranium is known to be found there.  So we are all radioactive I suppose.  Weird.  So over $600 later we are going to do a detox on him.  I am excited to get started!

The best part is James and my boys came to see me this weekend and surprise me!!!!  That was so awesome.  I have the best husband in the world.  I miss them SO SO MUCH!!!!

So, I have felt not 1 but 2 earthquakes since Sunday!  4.7 and 4.0.  I was freaked for the few seconds it lasted and then afterwards… I was like… WAY COOL!  So we have had excitement.  Everyone talks about “The BIG one” that is supposed to happen.  SO I was hoping either of those were not it!  So we are safe and doing good.  I think Santana is shaking up something good for us all.  =D

I moved into our hotel I will be staying at the next  2 weeks on Sunday.  It was WAY nicer than the internet made it look.  I felt like… opps.  I should have not stayed this nice!  But it really was cheaper than most and not knowing what the area was like, I stuck with an area some people knew of.  I have not yet gotten up to get breakfast.  Mornings are TOUGH!  My friend Kim who is staying with me until Thursday went the last 2 mornings and said it was really good!

Last night, Santana was Konked out so he stayed with Aunt Kim and I took my Momma out for her birthday! I was feeling like Crap so I wasn’t very good company but it was good to hang with my parents for a while.  You know when you are sick girls… we just want our mommas!

I am not sure what else to report.  Santana has been super Junky.  I have been super junky.  Santana still continues to work HARD.  He is absolutely amazing!  They are all amazed at what a hard worker he is.  His lead therapist was on a vacation since Friday and got back today.  Santana responds to him VERY well.  It is amazing the connection they have.  Maybe because his home therapist is a male.  Who knows.  But Santana listens and follows commands from him.  It is funny.  Just when he wants to give up… Raf goes… Don’t give up… and he grunts and keeps trying.  HE IS SUPER!!!!!!  

I will be uploading videos to facebook and Youtube tomorrow.  I only have a few hours left here.  We will see, the pictures that are up are Tyree and his Namesake, it was like my Tyree just knew he was named after him.  It was AWESOME how he took to DC Tyree…Sorry the last photo is sideways. I am too lazy to go rotate it in photoshop.

Crazy Week!

Kind of like a Captain out to see…. I feel like yelling LAND HOME!  I am such a geek and get LOST without my computer and internet!  But ALAS! I am tangled up on the web again!  Woo hoo!

So we are here. Today is Santana’s last day of therapy for the week.  Boo.  But we almost had to come home this weekend.  I am sure you have been following the short updates to the right on the bar under Twitter Updates.  That is an easy way for me to do it because I can text it from my phone.  But anyway.  If you are lost here is goes!  We got here to BEAUTIFUL weather.  This mid-70’s weather is WAY better than 105! So I enjoyed it.  I didn’t get to really spend mother’s day with my mom for the first time in 4 years because Mom and craig got really sick on the way back to Cali.  So they were in bed for a few days.

Therapy started Monday.  They assessed him and was worried about his hips and him drawing his knee up.  I told Raf that the doc gave his ok.  They didn’t get to far and noticed on Wednesday that something just wasn’t right and wanted him to go to the local AMAZING pediatric Orthopedics doctor.  We were able to get an appointment yesterday at his Beverly Hills office.  Yesterday, his therapist Raf wrapped his leg in ice because it was Really swollen.    He continued to work on head control and did ABSOLUTELY amazing.  He is following commands!  It is so awesome.  He is pushing for his push ups and pulling his head up.  It is AWESOME. Then we went to our appointment for xrays.  I know!  x-rays AGAIN.  

Well… his right femur is broke just above the growth plate by his knee!  Praise GOD it wasn’t his growth plate. So know Santana has a cast from his hip to his toe.  OF COURSE it is BLACK!  Then looking at his hips, they are COMPLETELY out and causing issues.  Dr. Kay over here recommends surgery to put those in.  I want to come here to do it.  He was an AMAZING doctor.  So personable and HIGHLY recommended.  So yeah… FUN.

Last night I stressed out about if I am staying or packing up.  What should I do.  Then I came to therapy to talk to the director.  She said that his therapist who normally would stop things and wanted to but does not want to quit Santana because he is showing improvement and he is a hard worker.  I am seeing new facial expressions too.  They said they can work around it and they called Dr. Kay and he said it was fine too.

So here is our schedule.  We get up and leave the house by 7:30 and start therapy at 8:00 am.  He goes till 10:00 and then takes a 10 minute break.  Then  goes back at it until 12.  Then he eats and gets auditory therapy on the trampoline from 12:30 until 2.  Then I come home pooped.  =D  Poor Santana.  He is a TROOPER!  I can’t complain about how sore I am when I go to the gym now.  

We are enjoying our day at NAPA.  My heart melted for the directors 22 year old son who also nearly drowned on his 1st or 2nd birthday. He is just awesome and has encouraged me!  Santana can do it!  I just know it.

Honestly.  The best time was church last night!  Football player Shaun Alexander spoke.  We got a picture with him and Santana and him praying for Santana. Then we got a picture of Santana with my FAVORITE Idol, Danny Gokey and Michael S.  Danny ROCKS!!!  Click on thumbnails below to enlarge and check them all out!

You can see videos at www.flickr.com/prayforsantana  or pretty soon I will upload them to facebook and youtube.com/iheartmyboys.  Checkity check them out!  

Enjoy the pictures!! If you have any questions leave a comment and I will explain better.  Pray for Santana’s poor little leg!  

Made it to LA!!!

We made it to Los Angeles yesterday! The weather is absolutely beautiful!!! Santana is breathing so clear that I kept checkomg his pulse last night! We start therapy at 8 am tomorrow! pray for strength! I am posting from my phone and it is not easy. So as soon as I find internet access I will leave a detailed post. Make sure you read my twitter posts on the far right or at www.twitter.com/prayforsantana. I can text short easy updates from my phone here so check there throughout the day.

I hope all you mamma’s out there had a blessed and restful day! I know I did but I sure do miss my other 3 boys back home!

Please pray for safety and for Santana to naon from this. God bless you all!