160 Dives!!!

1 Year 14 days

Not too much going on. Santana has a wet and nasty cough and low fevers, but nothing to jump to the doctor for. Thursday, Santana hit 160 dives at HBOT! The problem…we have to put it on hold because we do not have the money to continue. It is 5 grand for every 40 sessions. So needless to say, we are on pause until we think of a way to raise more money. He has come a long way since we started those. But we know God is the real miracle worker and he won’t let anything happen to Santana while we are taking a break.

We are also going to give him food grade hydrogen peroxide. This gets oxygen right into the blood stream. A doctor that sits in the chamber mentioned that. Then Lorili, not knowing I had this conversation, say it in Joyce Meyer’s magazine. So, to me, that was confirmation.

We have also been breaking from Vibes with the holiday hours and also we are stepping back to see if it is possible that any of these treatments could be causing his seizures. While they are short, they are still there.

Today, we have a nurse that will be working Saturdays until Santana’s Birthday. We were supposed to have her for 3 months but miscommunication made us lose all those hours. Upsetting, but what can I do? They gave these extra hours because of the baby being born and what not. We lose all are saved hours in February because we move out of Early Intervention and in to the long term care through the school system.

My mom and Craig come into town tomorrow night. It has been since the baby was born so I am really excited! I don’t get much sleep when she is here, but so worth it!

If nothing exciting happens and I don’t get on here, HAPPY NEW YEAR! And if you have any fundraiser ideas, PLEASE let us know! We are open to any ideas!

I am

I AM
December 26th, 2007 – 1 Year 11 days

As I was drawing up Santana’s 7 medicines (including natural) I was exhausted thinking this has been his routine for a year now. Then it just made me melt a bit and wonder, when will I get to throw these drugs away and say…God delivered Santana from those drugs!? I know…soon, and in God’s time. Then I get frustrated with his AFO’s causing a bit of redness and I just want to bend over and quit. When is enough enough?

In desperation, I logged onto the web to download an awesome preaching series at morelifenow.org. If you are going through ANY situation, check out the Without a Doubt series! Thanks Dave! What an eye opener! But however…When I opened Safari (my web browser) it said, could not find I AM (like I typed that address in to go to…but I did not, that is what the default home page is set to. As I looked, the words I AM stood out. I could not help but wonder how those words were set as the default home page normally it is something like http://www.prayforsantana.org or something…But it was only the words I AM. So of course I thought about the moment of anger and stress I started to fall in and then I thought about the words I AM.

This is what IMMEDIATELY came to mind: I AM your God. I AM the great physician, I AM the healer. I AM. How can I argue with that? So, I need to SHUT UP and just wait, although hard, but that is what I will do. I just wish the heartache would go away too…

Giving Back

1 Year 10 days

We started our day right. We got up early and baked a ton of cookies and with those and some our neighbors gave us to take too, we made some plates up to take to the families in PICU at St. Joe’s. We knew what it was like to be in ICU on Christmas and not knowing the fate of your child. One thing I can say, PRAISE GOD that it wasn’t busy like last year!!!! There was not a lot of kids in there. But it did make me realize how much love and support we have. There was not many people, 1 or 2, that was there with the kids either. I felt so bad for the parent that sat there alone with there kid. And I thanked God we have not been back in the PICU…although, that was my favorite floor as far as staff was concerned. They are VERY friendly up there! Even the ONE and only nurse we saw up there today was super nice. So, we had like 20 plates of cookies to get rid of still so we went down to pediatric floor. Which was not so busy either…at least from what I saw. They were not open to letting us give cookies to the families like the PICU, so they ended up on a potluck table. But that is ok. We were there for PICU families anyway. They were appreciative and I felt their pain. It just felt good to give back as a family!

Tomorrow last year, we were getting moved out of ICU!!! 10 days in ICU really is not that bad considering some of the kids today were there for months. I could not imagine waiting that long. What a heart ache. Even though we were out of ICU, it just meant that Santana was off the Ventilator. That was it. He still looked horrible as far as the fact that he was doing NOTHING. In fact, he was still in a coma. His body had so much tone that he was twisted in a C. His baseline heart rate was between 170 and 200. Now he is between 110 and 120 (70’s to 90’s asleep). I think that is awesome! My heart rate is in the 90’s so he has a fast beat like me! Not to mention, his Oxygen level is between 96-100 now when he was dropping up and down a lot and was on O2 blow by here and there. Boy have we come a long way!

Thanks for helping us have a wonderful Christmas and thank you for uplifting us in prayers! We love you!

Merry CHRISTmas!

Merry CHRISTmas!
December 24th, 2007 – 1 Year 9 days

What can I say? This month has been a lot easier than I thought. While we are hanging by a thread to get through, we are not stressed, but blessed! Saturday, we walked to the park with the boys. The best part? James carried Santana up to the top of the slide and sat him on my lap and we went down. It was GREAT! We also put him on the swing and and I walked back and forth to give him the sensation. It was awesome to hear him making ooooo and awe sounds! It was so fun.

Today, my dad, Lorili, Chad, and Meredith are coming over for our Christmas. We are just gonna eat and relax. We have church at 6 then we are coming home for the boys Christmas. My family has always done Christmas Eve with my mom and Craig and we are taking over the tradition. Like my pastor always says, real Christian open gifts on Christmas Eve. I agree. Oh come on….it is a joke! But I agree!

Speaking of gifts, our church did the great gift give away at our church to the inner city families. I was amazed at our congregation. There was THOUSANDS of presents, and THOUSANDS of bikes not to mention heaping piles of food bags. These pictures are not even half of what they gave away. As we were leaving first service we walked by the line of inner city families and my heart broke for them. They don’t have the support and love we have. This was the most exciting thing for those kids all year! Also, I couldn’t ‘t help but to look at these mothers with 2 plus kids and then see these beautiful kids running around healthy as can be. I couldn’t help but to pray for them as I walked by. I prayed that they felt the same love that my kids do and that their parents feel blessed that their kids are healthy and run around. They are very blessed…in a different way. I am sure they would trade our lives for a nice roof over their head. So I hurt for them, because they hurt like we do, but for different things. Pray for the inner city families this Christmas, pray for the soldiers that are missing their families, and pray for the families that are missing their sons and daughters and wonder and pray for their fate.

This Christmas, as I listen to the beautiful song, "Mary did you know" I also think of Santana. Mary was blessed to have Jesus as her baby. But think of how blessed we are to have one of his miracles in our hands. We have the work of God right with us. I feel as blessed and humble as Mary did over 2000 years ago. He chose us to go through this. God trusted US to give him the glory and show the world what he can do! AMEN TO THAT! If I don’t get on tomorrow. Merry Christmas and God Bless.

We are Blessed!!!!

1 Year 6 days

Well…I had a nice long blog, I walk away for 2 minutes and Jett came and deleted it. So, this will be quick because I am tired and annoyed. First, I wasn’t going to blog the first one until someone out there in cyber world made a nice jester. I got a knock on the door dropping off some yummy goodies for Christmas and gifts. They would not say who they were from. I felt so dumb because I had to have looked confused…well, I was…and then I asked the VERY nice guy if he knew me or I knew him. He said no and he promised not to tell who they were from. So, thank you to all that was involved in that. We REALLY appreciate it. You have blessed my family and it brings tears to my eyes knowing that we have such wonderful supporters who pick us up when we are down. Which reminds me that I keep in touch with someone (not sure if I am allowed to give credit, because they are not that way…) through myspace.com whom I have never met face to face and they too have given Jett some great learning books and activity books to wrap up and say they are from Santa. Thank you for that too.

I didn’t want to rewrite about all that I had typed…but you gotta read this! Today, Santana made some INCREDIBLE noises that sounded like he was trying to talk!!!! New and distinct sounds! It was so amazing and we are not crazy, other people heard it while in Oxygen too! YAHOO! He is trying! Watch out world…Santana is making a comeback! No, not Carlos Santana! MY SANTANA!

Jett is out of school today so we took him and the baby and met up with James sister and her son at Way 2 Play Cafe. That place is just so neat! If you live in the Chandler/Gilbert/Queen Creek area, I suggest you take your kids there! They are a bit slow due to the nice weather and I want to see their business pick up! They are family run and are just so sweet. Check out their website! Save this place! Jett loves it and Santana will too someday!

Blessings to all. I will try to remember what all I wrote about and get it up on here. I love you guys. You have made this season very special to us. Thank you!

A Year gone by…

1 Year 2 days

It has been exactly a year ago, yesterday (the 16th). A year ago I woke up at my friends house and James was coming to get us to go to breakfast. He brought me clothes. Unfortunately, they didn’t fit the way I would have liked them to and I was crying in her bathroom and felt icky. I had no reason to be crying. We got in the car about 11:15 am to head to breakfast. As we were finishing up, about 12:15, we got the call that shattered our hearts into a million pieces. The hardest part was not knowing his status or what had happened exactly. I am not sure how James made that 30 plus mile drive with me wailing and kicking. He was amazing to stay calm like he did. Then, we went to Phoenix Children’s (knowing the hospital was on Thomas) only to find out my child was not there. I remember screaming at the poor receptionist. Then we got a call and found out we had to go to St. Joe’s down the street. I clearly remember not holding balance as I got out of the car and they sat me in a wheel chair. I remember the small conference room they put my family in. What are you supposed to think as you are sitting around a big table and they say the Doctor will be with you in a minute. And then to hear your son most likely will not live through the night. To hear that if he is lucky enough to live, he has extensive brain damage and will be a vegetable for life. Those words ripped us all apart. But I clearly remember walking by the doctor to see Santana the second time and looking him in his eyes and saying, "You don’t know my God. He is bigger than this." And I am not one to have said stuff like this before, so now all I can do is hang onto those words that came out of my mouth. All I can do is believe.

A year later, we have picked up those pieces and with the love of family and friends and all 3 of our boys, they have been mended back together. Of course there are some pieces missing, that is what happens when something shatters, it just turns to dust and blows away. But it is ok. The support we have has filled those spots with love. And because you all have patched it, we can endure this. We can make it to the finish line. Sure, it will take a lot of tears, blood, and sweat…um, and money too. But to hear, it is complete, it is worth it all.

So a year later, and when I looked at his medical record and saw when he was admitted, I realize that about the time he was being pumped on to get his heart going again, is the time I sat on my friends toilet and cried. Was it really because I was unhappy with myself, or was it mother instinct? Was it because I could feel my own flesh and blood hurtin? I will never know, but ARG to worrying about what I looked like. That stuff doesn’t matter anymore. Not when all that worrying takes away from my beautiful boys.

We made it through the weekend. Saturday was actually harder because of it being on a Saturday. I guess because on the 16th we had church to start our day right and then my dad and Lorili and my brother and his wife came over to hang and keep our minds off it. We were just busy all weekend. We took Santana to get fitted for a stander…and let me tell you, he looked AWESOME in it. It was so good to see him standing up and looking handsome as he is. He was so relaxed that he fell asleep. His physical therapist is THE BEST and really works hard on Santana and getting what is best for him. We appreciate him so much! Now we just gotta pray that Insurance will get the stander for us. That is the real fight. Pray for that!

Today, Santana got his AFO’s and shoes. So I will have to get a picture up VERY soon. He just looks so awesome!

Our pediatrician heard back from a neurologist about the Ambien and they basically said they rather see us try that than wasting our money on Hyperbarics Oxygen because they never saw that work on any kid. I thought that was funny. Because do they not look at Santana’s improvements? We are taking about a kid who used to get ambulance transport to doctor appointments because he did not bend AT ALL to get in a medical car seat. We are taking about a kid who used to have deer in headlights look and no blink what so ever. We are talking about a kid who did not make a sound or cry. And this is why I can deal with the anniversary of his accident. Because God has done AMAZING things and has opened up so many doors of opportunity for Santana’s healing. YAHOO! I am just so excited and my faith in God has grown stronger this weekend because Santana and his alertness is getting better every day. GIVE ME THAT SMILE GOD! I want to see his cheesy smile now!!!!!!

Thank you for all the emails (when my email does work…) and texts for prayers. Because of you all that read this, we made it through. We have endured and are standing tall. God bless you all!

Oh…and Qwest users should be able to see the site now!

Where are you Christmas?

Day 364

We watched The Grinch last night and this song is in it. Sometimes I wonder where the joy of Christmas went too. But then I remember he is right in my heart. Listen to the song. I love it. It is by Faith Hill, titled, Where are you Christmas?

A Year gone by…
December 17th, 2007 – 1 Year 2 days

It has been exactly a year ago, yesterday (the 16th). A year ago I woke up at my friends house and James was coming to get us to go to breakfast. He brought me clothes. Unfortunately, they didn’t fit the way I would have liked them to and I was crying in her bathroom and felt icky. I had no reason to be crying. We got in the car about 11:15 am to head to breakfast. As we were finishing up, about 12:15, we got the call that shattered our hearts into a million pieces. The hardest part was not knowing his status or what had happened exactly. I am not sure how James made that 30 plus mile drive with me wailing and kicking. He was amazing to stay calm like he did. Then, we went to Phoenix Children’s (knowing the hospital was on Thomas) only to find out my child was not there. I remember screaming at the poor receptionist. Then we got a call and found out we had to go to St. Joe’s down the street. I clearly remember not holding balance as I got out of the car and they sat me in a wheel chair. I remember the small conference room they put my family in. What are you supposed to think as you are sitting around a big table and they say the Doctor will be with you in a minute. And then to hear your son most likely will not live through the night. To hear that if he is lucky enough to live, he has extensive brain damage and will be a vegetable for life. Those words ripped us all apart. But I clearly remember walking by the doctor to see Santana the second time and looking him in his eyes and saying, "You don’t know my God. He is bigger than this." And I am not one to have said stuff like this before, so now all I can do is hang onto those words that came out of my mouth. All I can do is believe.

A year later, we have picked up those pieces and with the love of family and friends and all 3 of our boys, they have been mended back together. Of course there are some pieces missing, that is what happens when something shatters, it just turns to dust and blows away. But it is ok. The support we have has filled those spots with love. And because you all have patched it, we can endure this. We can make it to the finish line. Sure, it will take a lot of tears, blood, and sweat…um, and money too. But to hear, it is complete, it is worth it all.

So a year later, and when I looked at his medical record and saw when he was admitted, I realize that about the time he was being pumped on to get his heart going again, is the time I sat on my friends toilet and cried. Was it really because I was unhappy with myself, or was it mother instinct? Was it because I could feel my own flesh and blood hurtin? I will never know, but ARG to worrying about what I looked like. That stuff doesn’t matter anymore. Not when all that worrying takes away from my beautiful boys.

We made it through the weekend. Saturday was actually harder because of it being on a Saturday. I guess because on the 16th we had church to start our day right and then my dad and Lorili and my brother and his wife came over to hang and keep our minds off it. We were just busy all weekend. We took Santana to get fitted for a stander…and let me tell you, he looked AWESOME in it. It was so good to see him standing up and looking handsome as he is. He was so relaxed that he fell asleep. His physical therapist is THE BEST and really works hard on Santana and getting what is best for him. We appreciate him so much! Now we just gotta pray that Insurance will get the stander for us. That is the real fight. Pray for that!

Today, Santana got his AFO’s and shoes. So I will have to get a picture up VERY soon. He just looks so awesome!

Our pediatrician heard back from a neurologist about the Ambien and they basically said they rather see us try that than wasting our money on Hyperbarics Oxygen because they never saw that work on any kid. I thought that was funny. Because do they not look at Santana’s improvements? We are taking about a kid who used to get ambulance transport to doctor appointments because he did not bend AT ALL to get in a medical car seat. We are taking about a kid who used to have deer in headlights look and no blink what so ever. We are talking about a kid who did not make a sound or cry. And this is why I can deal with the anniversary of his accident. Because God has done AMAZING things and has opened up so many doors of opportunity for Santana’s healing. YAHOO! I am just so excited and my faith in God has grown stronger this weekend because Santana and his alertness is getting better every day. GIVE ME THAT SMILE GOD! I want to see his cheesy smile now!!!!!!

Thank you for all the emails (when my email does work…) and texts for prayers. Because of you all that read this, we made it through. We have endured and are standing tall. God bless you all!

Oh…and Qwest users should be able to see the site now!

A year ago…

Day 365

A Year ago we had a crazy little 22 (almost) month old who loved life and made anyone smile with his big cheesey smile. A year ago we had Santana who is dressed up in this Lion youtube video. A year ago is where I want to be right now. Last night, James and I could only talk about what could have been done different. Last night was a roller coaster of emotions. Last night was the first night we held each other and cried and prayed. We have been on this journey for almost a year and I am not sure I packed enough bags for it. Although, life tossed it’s own baggage at me.

I just want this weekend to be over. I really want this nightmare to be over. If there is anything I want in life, it is Santana back the way he was. His smile would make your heart melt. His eyes sparkled with joy all the time. Never in my life have I seen a kid who was so happy go lucky like him.

I can understand why Jett gets so bored. Those two were always together and getting into EVERYTHING. But I will let him do that again. Even for just one more day. But this time, I will be right there making messes with him.

We are Castless!

Day 359…(I think I got my days off somewhere)

FIRST! Our prayers go out to the families whose family members were killed in the Colorado church shootings. My heart breaks that the shooter needed to go hurt innocent people in the House of God. This is just signs of the beginning of end times and I can only pray that every person who reads this knows Jesus and will be ready when judgment day comes…continue to pray for the families involved, including the shooters family for I am sure they are wondering what they could have done different to help him.

We are castless…sort of! It took 3 weeks and NO MORE CASTS! I say sort of because we keep the backs on him and wrapped with a bandage to hold position until we get his AFO’s on Monday. It is amazing! Ok…ready for the exciting part?! The Doctor came in and looked at his feet, and eyebrows went up. The words out of his mouth were, "Honestly, I didn’t think we would get it." Ha! That was the best. We were all grinning so big! It was supposed to take 4 or MORE weeks…but it took 3! Oh, God is so good. I really think they went with the serial casting just to shut us up. I bet they thought they were going to prove us wrong that it would not work and thought we would see terrible break down. This last one had a bad blood blister on the left foot, which had nothing before, but nothing that broke through the skin. I must thank the doc for taking a chance on our wishes. We are so pleased with the results. And Linda in casting was SO awesome. BUT not as awesome as our God.

As the 16th creeps up on us, so does my stomach. But we have been keeping plenty busy to keep our mind off of it. Although the 16th is on a Sunday, Saturday will probably hit us more…since it happened on a saturday. But last year, it all begins on a Thursday for us. Thursday night was the last night we saw the boys before spending the weekend at my dads. That night, Santana cried for Daddy. He just wanted to see daddy one more time before their car pulled out. James hated that he was screaming so hard and that is the last thing that sticks in his mind. Never in my mind did I think while helping my friend move and go through a crisis did I think I would be smacked in the head with a crisis of my own. I always wondered WHY when we were helping someone else and being a friend would the happen to us. I do know one thing, I can be thankful I was that friend that was their for someone, because you all gave back in my time of need.

Thank you for your prayers and support! God bless you all during this time of year!

We Miss James!!!!

Day 356…(I think I got my days off somewhere)

James is up enjoying some cold snow in Denver while he visits a friend and heads to the Broncos vs. Chiefs game. This has been planned for a VERY long time and he almost backed out not wanting to leave us, but I said GO. He deserves the break. I didn’t realize how much I would miss him. If he had been working the last months gone by, I would not have noticed right away. But we have not left each others side for awhile so it did hit right way. My dad and Lorili came over last night so I can get some sleep. Especially so I can prepare for tomorrow and doing appointments. I will be so happy to see James. But again, he needed a break more than me.

This week we have a meeting at the school and get Santana set up for that when he turns 3 in Feb. How sad to see him go on a bus. But extra therapies. He has been doing well, but lots of junk pouring out the nose and mouth. At least it is coming out on its own!

That is all for now. Our miracle is a coming!!! Not that he already isn’t.