Incredible!!!

Day 345

2 nights ago, I was rocking Tyree and feeding him and of course praying for God to give me a vision or a prophetic dream. The last dream I had about Santana was when we were in the hospital. That dream was us on stage at church telling our testimony and Santana walking around stage showing off, with a limp in his right leg of course. I woke up scared and mad because he limped (stupid huh?). But my mom reminded me of Jacob in the Bible who wrestled with God and came out with a limp. And I have held onto the fact that Santana WILL walk again…but with a limp.

So finally! I had THE most incredible dream last night that made me never want to wake up. James and someone was in the kitchen talking sports and I was sitting in Santana’s room. Then he did what looked like his seizure where he pulls his body in and then he sat up, but flopped back down. Then he rolled him self over loose as a goose and then sat up. He was VERY unstable and so I grabbed a fish off his mobile and kept telling him to get the fish. Hit it. And he was batting at it. He flopped back down like a fish himself a few times. In the dream, I was so mad at everyone because I kept yelling to go in there but sports was more important…now you know how I feel about sports. However, the next scene, I was taking my brother somewhere and Santana was walking with us but I had to stop next door to get my mom. I walked in and there was no sound. My mom says, “He is so tall!” (of all things…right?) and then I looked at our neighbor who was filled with tears. And then Reality struck and I got woken up to Santana coughing on his junk. But what an AMAZING dream it was! I am holding on to that. I still have butterflies from it.

Last night, Santana looked real lethargic and his heart rate was at 160ish. I took his blanket off and rolled him over and gave him motrin, thinking he was in major pain from the castings. But after 10 minutes, I took his temp. because he was red. He had a fever over 100. We kept rags on him and he did fine through the night. He started getting warm again this morning, but we gave him motrin right away. Tis the season. He also seems in pain for his new castings, which still have me in shock that his feet ever bent up.

Continue to pray for his recovery, I just have that feeling that it is coming. He is going to shock ALL of you one day. If he doesn’t, so my instinct was wrong. Either way, it won’t change the way I feel about him or my God. But I do have that instinct that the next big step, besides his feet, is coming. Especially when God is testing my faith. And yes, I do feel like Job in the Bible. And your right, he got angry at times too, but he held onto his faith. And that is what I plan on doing. I love God with all my heart and NOTHING can change that.

The American Dream… Shattered.

Day 344

It amazes me how many people JUDGE before they know the facts. Let me tell you all something, a year ago, we were living the American Dream. Barely, we budgeted ourselves just right, because who EVER plans on a tragic event to change your life. We do have a beautiful house that James worked his butt off to get us in and of course we drive nice cars, the advantage of working at a CAR dealership…discount. But when someone blindly judges us on OUR guestbook meant for POSITIVE encouragement, it ENRAGES me. FIrst of all, we only have 1 (ONE) Escalade. Never 2. When we bought that, we got it cheaper than a Tahoe. And why IN THE WORLD would we sell any cars that are paid off? Why would we make another car payment. That sounds a little crazy to me. With 3 kids, we need the room and can’t use a little budget car. Not when Santana’s car seat is giant…a medical car seat. As far as our house, we hate it right now. We would be better off living in a studio apartment since we all sleep in the same room anyway.

I NEVER asked for someone to bless Jett. I think I ALREADY stated that we are passing up on Santana and Tyree because they won’t remember anyway…which means, Jett WILL get something. So, I thank you all for those who want to bless our kids but obviously people have a problem with it and I can’t accept it. There are people worst off than us. But I hope you know that we never asked or begged for anything.

For those who DON’T know us, which is a lot of you obviously, we have a big heart for the homeless community. My mom got us involved and we learned so much about compassion. I loved serving the homeless EVERY SUNDAY NIGHT for 5 years until life’s tragedy took that away from us…for now. You all don’t know how bad we miss doing that. To be honest, we started to lose interest and wasn’t sure it was what we wanted. But then we got thumped in the head by God and after a few weeks of putting our hearts back into it and taking the kids out on the busses to the intercity, the enemy got mad that we were soul winners and we ended up with Santana the way he is now. We can’t serve like we used to. So I am serious when I say, don’t buy for us… help the homeless.

This is how we spent our Saturday Nights, under a bridge, right where they camped. How many of you can get down to this level. Only God can give us the strength to do this. We were working for his kingdom!	This is someone I call famiy. He is no longer in this pit, but living for God and reconnected with his family! I love you! For the years of doing this, he was worth it all!

So please, for those people who claim they live in Arizona but are actually posting from Iowa, don’t judge my family until you really know me. Even for the RN’s that are at Good Sams in Phoenix (and claim to be in Idaho). You have never met my family and really got to know us and our hearts. Don’t judge us by what you believe is to be true.

On a better note! Santana did AWESOME with his next set of castings!!!! They are almost in a neutral position! He is gonna get through it! I just know his feet are going to get fixed. I know he will be able to stand someday! YAHOO! He did have a little breakdown, but nothing horrible. Nothing a little oxygen won’t fix anyway! The worst part for me was when they sawed off the other casts. It pretty much freaked me out. I don’t do well with that stuff.

Many people thought of us when they saw 60 minutes this weekend with Anderson Cooper. We have read the article on Ambien waking people from a semiconscious state (like Santana) months ago, but to see the video was AMAZING! I am looking into this and researching it more. For those who are curious, check it out!

http://www.cbsnews.com/sections/i_video/main500251.shtml?id=3538297n

So in conclusion, we were living the good life and were comfortable just where we were at. This was PRE-hospital bills, PRE-doctor bills, PRE-$150 a treatment for Oxygen (6 days a week), PRE-Natural meds that are not covered, PRE-medical supplies, PRE-therapy equipment, PRE-$75+ in gas doing appointments, PRE-not having income for FOUR (4) months. BUT when it is your kid, you are willing to do and try everything. The life we lived before doesn’t matter anymore. But God blessed us, this was given to us for what we gave to the community.

THANKS to all the positive people. I love you. And please, I rather you do something for the homeless. I really mean that! God Bless!

It’s A Small World

It’s A Small World.
November 24th, 2007 – Day 340

I learned today that we really do live in a small world. If you look on the December ‘07 link, you will see Santa visiting Santana in the ICU last year…the authentic one…not the fake one. Well, today, we heard about a horse and carriage ride with Santa at a grocery store about a mile away from our neighbors. We were going to take Jett and Tyree (we had our nurse at the house today) but since Santana was awake, we took him too! What a blessing it turned out to be. This was the SAME Santa that was at his bed side bringing him a gift when the status of Santana was still iffy. Santa himself had an amazing story this last year, he had throat cancer and beat it. He lost well over 3 pints of blood from an artery erupting in his throat after that. He should never be talking, but he does. He said to hold on to the positive about Santana. He really touched my life today. He still gives back to the community after all he has been through. Santana seemed VERY alert on our ride. I held Santana and Jett held Tyree, who slept the whole time. What a great time out with the family, even if it was a quick ride up the street.

We survived Thanksgiving and all the left over’s, really….not a good holiday to hit after having a baby…the weight will take forever to get off now. My dad, Lorili, and Grandma came over Weds. night to spend the night so we can get to moving on all the cooking early. That night, we took Jett to Zoo lights thanks to a co-worker, Gary. That was so nice of him. We have never been there before and what a treat it was.

Thursday was just a day of eating and relaxing. It is always good to have a meal by a seasoned cook…a Grandma! Ok…and James, I have to give him credit in the kitchen! I went to lay down with Jett at 4:30 and did not come down till 11:30. I would have to say that I was tired. Sorry to my friend Lainey, and my dad who was gone when I came back down. At least James was there to entertain. But then James went upstairs to get some good sleep and I could never go back down between Santana and his junk and feeding the baby. Thank goodness I got a good sleep in first.

Santana is doing good in his casts. He whimpers here and there but we are keeping it under control with Motrin. I can only imagine how much pain he must be in. Poor baby. But he is a fighter. I just love him to pieces. Oh, and to answer your question, his feet were like that because of 2 things. The main thing is being in bed and laying there. According to our Neuro Rehab doctor, it only takes 12 days to get drop foot. But also, with the injury from lack of O2, his muscles got a lot of tone, which is what makes him so stiff, his body can’t be controlled and he just pushes out. This is why they are pushing the baclofen pump on us because they thought it would cut his tone, but we believe and are seeing improvement on his own. But as far as the casting, with is feet dropped down like that for so long, his heel cord had shrunk up and need to be stretched out. We will not know his potential until those are stretched back out.

Please pray that this first set of casting is successful. If they take them off on Wednesday and find that there is no improvement, they will not do it again and then heel cord surgery is the next step. As if we want that, we already had to swallow the fact that our little boy needs hip surgery. Who would have ever thought. It hurts that every time we leave an appointment we hear some big news like this, but at the same time, we know it is a step to his recovery.

Many people over the last 11 months have said, "At least you still have Santana alive." or something to that nature. But what these people don’t know is how hard it is to take care of him. How much it hurts to see your flesh and blood lay there while other kids his age are running around living up those terrible twos. Day in day out, doctor appointments, hospital visits, medicines, seizures, suctioning,
and time just slipping away from our lives. I love Santana to death and we would do ANYTHING for him, but it isn’t easy. And it is not fair for him to live this way, it isn’t fair for Jett and Tyree too. But this is the path God chose for us, for Santana.

We pray that if it takes him going to heaven to be whole again, to take him. While we would miss him so much, our lives can go back to some what normal again. Maybe we could use our upstairs again and actually sleep in the same bed every night, not just when family stays the night to take care of the boys. No body understands the burden we have carried. WIth James being off for 4 months, Jett will be lucky to have anything for Christmas. I know it means more to him than any of us. But if you recall… Jett thought Santa forgot him last year when we were all in the hospital. It is hard enough to see his heart broken. I know Santana and Tyree will not get anything, but they don’t need anything and they will not know the difference. But know that this is not easy. Living by faith for 4 months to take care of Santana with all these appointments have not been easy. I know losing him would not be either, but at least you can pick yourself up and not be tied down day in and day out. Don’t get me wrong. I thank God for his life and I do believe he was brought back to life to touch peoples lives, more than I ever would have. And I know it takes faith the size of a mustard seed, but how far and how long can that little of faith go?

Bitter Sweet

Day 337

The information we found out at orthopedics today was good and bad. Here is how it went down. We showed the bend that we are getting in his feet and asked for braces to hold position and adjust to bring his feet up. They thought he would push out of them. So they said they would try serial casting or if that doesn’t work cutting the heel cord and if all else fails, baclofen pump. [does that confuse anyone else considering they are taking him off that medicine?] They told us to go home and research it because they know we are the researching type of people. We said we would consider the casting and next thing we know, we are getting his feet wrapped right then and there with fiberglass casts. I was nervous about it.

Basically, they pulled his poor little feet up as high as they can and hard casted him…UNREMOVABLE. Then in 1 week, we will go and have them take that one off and they will push his feet up further and cast again. This will last about 4 weeks. Please pray that this works! If it does, when they are finished and he is in neutral position, they will make him AFO (braces you wear in your shoes) to hold him into place. The worry or downfall with this procedure is if he pushes his feet to a pointed position, he won’t be able to move them and he can get really bad skin breakdown. Lets pray that that doesn’t happen!!! If on Wednesday when we go back they don’t move up at all, then they will not cast him again and we are back to square one.

All that was pretty sweet because we are moving forward, but here is the bitter part. They did an X-ray of his spine and his hips. His spine, as we knew, had a bad curve to it. But it looked worst when you just see the bone view of it. As for his hips. Not a good result. They are not even in the socket. We HAVE to have surgery for that. If we don’t, it can cause him BAD pain later and most likely, either way, arthritis. That is just upsetting. Not only does lack of oxygen hurt your brain function, but apparently your muscles and bones too. It can really destroy a little body, such as his. What would we do without insurance?

Tomorrows Thanksgiving, and while I am not thrilled about holidays, I know that we have A LOT to be thankful for. I don’t even know where to start, but THANK GOD we have our little Santana here with us and lots of support from family and friends. I am thankful of every breath, sound, and step we all take, because it can be gone in an instant. Love the ones you are with this Thanksgiving and miss the ones you are apart from. Every moment spent together should be your happiest because it may never come again. God Bless you all and THANK YOU for your loving support!

Busy Day

Day 336

It was a crazy day! We had to go to North Phoenix for his chiropractor appointment and left the house at 10 am. We are now starting Santana on DHA (fish oil). I am willing to do anything natural that is good for him. Also, if we do take him off the baclofen…we ARE, I should say…there is a supplement called Gabba that can help with his rigid tone…if he were to get that way again. So we would try that first, then if worst case scenario, we would put him back on the baclofen.

After that, we headed to North Scottsdale for his pulmonary appointment. His doctor there started him on flonase to help break the thick junk in his nose to see if that can bring his oxygen saturations back up. Other than that, just small talk about the bi-pap machine and it is still a possibility if the blockage of junk does not get cleared out.

After that appointment, we headed home just long enough for his hour feed and then off we went to chandler (more in-town than we are) for his pediatrician to check him out. I told her that with all that goes on with Santana, I just may have to stop nursing Tyree. It is so hard for me to do that. I feel guilt with the bond there is when you nurse, but I can’t keep up. Not when we were pretty much gone from 10 am to 6 pm. Not to mention, these appointments are so spread out for driving distance that when we get to an appointment, I feel I am stuck in the car feeding. So, I just need to let it go. Dr. Sudha did help us out with formula samples that will get us by for a month. What a blessing that is.

If you think that was a lot of appointments, keep in mind, we canceled his Vibes, Oxygen, AND his physical therapy. There is no way we could have done it!

Christmas is around the corner and we are hearing Silver Bells as we walk through the stores…well, at least those of you who have time to go to the store are hearing it. But I myself is trying to avoid those cheery christmas songs. Because as Christmas approaches, so does the 1 year anniversary of Santana’s Incident…not accident…incident or situation. This could have been more easily prevented, so I don’t like to call it an accident. This next month is going to be hard for James and I. Not only does it mark a year, but we are in the 4th month of James being off work. It will be hard when he goes back for all of us. Thank goodness we can get away with buying Jett his christmas presents only…Tyree is so young and Santana does not need anything. We are hanging by a string to make it to the end…but by faith, we made it.

If I could stop it, I wouldn’t celebrate Christmas the way the world does anyway. But Jett knows to much. He will want to see the sparkling lights hanging from the rooftop and decorate the tree. But this is not what Christmas is about. It has more meaning to me now…the right meaning. It is about God sending his only son down to this earth to live a life like we do for 33 years until he was crucified for our sins and transgressions. With that brought Grace, which in the dictionary is favor or immunity. We ask God for grace for Santana by the blood of Jesus and we wait and believe. If God’s hand is not in this, then why is he doing things that we were told he would NEVER do? BELIEVE!

We are Home!!!!

Day 334

It was not the best weekend, many plans were canceled, but in the end, Santana is doing much better and not having the “big” seizures!!! Can’t complain there! We were really bummed that we missed the praise party at church that Masters Commission was putting on. Not to mention a Thanksgiving party was missed with our friends. Jett would have missed his school carnival Friday night, but James went home so he could get him to that. This just shows that our life is on edge. We can never be fully committed to anything it seems. We have to be prepared for any situation with Santana. Thank God it wasn’t too serious in the end.

I talked to our AWESOME PT tonight to see about him writing up a recommendation sheet for splints and a stander because we are seeing Santana’s orthopedic doctor this week. He saw success in one of his kids with Serial casting who has a bit more tone than Santana does. But boy does that sound so so painful. If anyone has gone through that, let me know!

I don’t have much else to say, we are so tired and THANKFUL to be home. Thanks for your prayers, support, and texts! What would we do without cell phones?

Oh! And thank you to the St. Joe’s staff that knew Santana and came to visit him. That was very sweet and thank you for your encouragement. Only you guys really knew how much worst off he was. You guys really encouraged us! Thanks! LaVon….Jett says hi!!!! We miss your smiley face! You are awesome!

Another St. Joe’s Stay

Day 333

It just so happened to be 11 months to the day that we were taking Santana back to St. Joseph’s ER. Yes…we went all the way up there by ambulance because he was stable and that is my hospital of choice. Basically, I got a call from my nurse who had Santana out for appointments with my sister-in-law, Janet, driving, and Santana had a big seizure but then he had blood come out and no mouth bite was found. So I called the pediatrician and they suggested to go to ER.

In the ER, they did a chest X-Ray but saw nothing. But one thing they did see was his big seizures. He happened to have 6 of his “big” ones and MANY of his little ones while in there. They looked at his baclofen dose and said it seemed too high. The funny thing is that they JUST lowered it a few months ago. So they lowered that and raised his Traxene, which is like an anti-seizure med that he has been on since his initial stay. I was ok with that. They admitted him and did an EEG. Of course while he was asleep so they did not record any seizures. Finally we got to talk to neurology and they talked about lowering his dose of baclofen even more, and then I said, is it possible that we can do a trial with out any? So he thought that was a great idea and didn’t see anything wrong with it. Of course, we have to SLOWLY wean him off it or he will stiffen up pretty bad. We pray that he stays loose. Now mind you, this medicine that they are going to try to do without is the same medicine they want the pump for. Hmmmmmmm? Make any sense to you? However, I LOVED this neurologist and he was very open!

11 hours in the ER and 30 hours or so with a total stay has left me feeling icky. With what little sleep I had, I woke up with a sore throat and was freezing and sick to my stomach. When James came up I started feeling better. But then it hit me and I did get sick to my stomach. Not sure what kind of bug I picked up, but I am betting it is the food.

James is staying the night with Santana now and I am home with Jett, who was passed out by 6:30 pm when I got home, and my little Tyree. I bet he will be excited to see me when he wakes up. Wait…they are sleeping, and I am blogging? I should be sleeping. Oh well, like my mom always says, I will sleep when I am dead.

I had a WONDERFUL nurse in the ER, last night, and today! I just LOVED them all. Santana had a few visitors from our original stay come check him out. Everyone can’t believe how much he has changed and how big he his and how much looser he is. Woo Hoo! That always makes me feel good. I love the nurses there because they stay POSITIVE right there with me. I love you St. Joe’s Staff!!!!!!

I need to go wind down. Keep praying for these seizures. So far today, he didn’t have any of the big ones. Pray they stay that way!

Too tired to blog…

Day 331

I have been over exhausted and not really had time to recover myself. But instead of snoozing, I thought I would give you all a quick run down. Last week we took a break from Oxygen and Vibes just to let Santana rest and for us to figure things out with the baby and all. We were just too exhausted to get going everyday. Poor James HAS to be run into the ground. It is a lot of work. I could not have had a better father and husband for this family. He is so strong to get up everyday and do the routine that we do.

Santana was put on a new seizure medicine called zonagram but surprise….he has already been taken off because once again, in a matter of 2 weeks (or a bit less than) his seizures were intensified once again and his body was convulsing pretty bad. Needless to say, we are on no seizure medicine right now. I found it funny when the doctors nurse said we should get him in to get looked at instead of doing this on the phone….uh hum…something I have been saying ALL along. But then they don’t make the appointment until January. I am sure if I had to (IF things got bad) he would get us in sooner. But truthfully, IT IS FINE BY ME! The longer he is off the drug, better for him! We will see what happens. But can only pray for the best.

Santana’s chiropractor has him on Magnesium to help with bowel movements. He would also like to see the doctors take him off the baclofen just to see what happens. Worst case scenario is he would stiffen back up and "cripple" his hands up and would be too stiff for his shoes and we would just put him back on it. But seizures is a BIG side effect of the baclofen. Whether that is what is causing it or not, we don’t know.

Can you believe that in 3 months Santana will be starting school?! I can’t believe it. It will be better for him because it is extra therapies he will receive and maybe…just maybe we can actually have speech therapy for him! I am nervous about it, especially to have him picked up on a bus and drive away. But I know it is the best for him.

Santana’s AWESOME physical therapist is working on getting a stander for him. He is doing so great and continues to improve so this too will help him with his feet and heel cord also. We are so excited for that.

Monday we have to take him to his pulmonary doctor and Wednesday to the ORTHOPEDIC DOCTOR!!!!! This is who REALLY has the say in whether or not he is a candidate for braces….YES WE THINK HE NEEDS THEM!…surgery, or the baclofen pump. I CAN NOT WAIT TO TAKE SANTANA IN SHOES!!!!!

For the Qwest users. We are working on fixing this site. I think in the next week we should be switched over so that you can finally view us. And I am really speaking to no one (unless you read this off of myspace) because Qwest users can not log in to read this. But Praise God, we will be able to be seen by all very soon!

I am tired, VERY TIRED, and a bit scattered, so I am going to close up and will add pictures later. My eyes will not stay open to write this. Thanks for all your support and thank you for faithfully checking in on me! Let’s just keep believing that Santana is going to make a FULL recovery and be able to play with this brothers that anxiously await him!

Tyree’s Hospital Website & Adjustment

Tyree’s Hospital Website & Santana’s Adjustment
November 5th, 2007 – Day 321

I forgot to post this site so you can sign Tyree’s baby book. Check it out at this link. He is doing GREAT! I am blessed to have such a good and sleepy baby. Let’s just pray it stays this way.

Today we took Santana to his chiropractor for another adjustment in the neck. The amazing thing…right after he got popped, we flipped him over onto his stomach so they could show me his spine (since I was not there last week) and he pushed his upper body up and held it, like a push up. Head up and all. That shows that his body is strong and capable enough to do this. Also, his spine looks so much better than the big “C” shape it was in. It was amazing! The doctor there is looking into his meds and finding the counter action of all them. Basically, one medicine will cause this side effect, so they put him on another which will cause another side effect which is a vicious circle. So when we find a natural mix we will try that. Again, we are still looking into this.

I have been fighting a spinal headache the last 2 days so I am going to hit the pillow while the boys are all snoozing. I will get some more pictures up as soon as I can. God Bless you all and thanks for your support.

An update…still a bit scatter brained

Day 318

I have not been feeling well enough to sit at the computer but I thought I would give a quick update. Santana continues to improve everyday. We are so blessed to have a nurse that just adores him and spends time with him like it was her family member. It makes me feel so much better because it is hard enough not being able to hold him and being down in bed a lot and if not that, feeding Tyree. Guilt wants to settle in but knowing that his nurse is loving on him like we do makes me feel better.

Yesterday, I had to go to the ER because I was bleeding a lot from the incision. They did an ultrasound and found a pocket of blood right behind and it made its way out. They put me on an antibiotic to keep from infection. Today at the office, my OBGYN took a GIANT Q-Tip and stuck it in the pocket to try some of it and put some stuff on it. He showed James and is having him drip peroxide on it everyday. It hurt really bad when he was in that little pocket from a tear in the incision. But nothing serious. I was freaked out about it yesterday and they told me to go to the ER. Lorili came to watch the boys…all 3 of them. We thought we had Jett covered to stay at the neighbors but he came wandering home. 3 kids is a lot harder than 2. Especially having to stay in Santana’s room because you can’t leave him in case of choking.

Santana had a pretty big seizure the other day. He was on the floor and his body folded up like a V and he rolled to his side with his neck and eyes back for like 2 minutes. His Neuro put him on a new medicine for that. Santana’s therapist made a good point that he could have a pinched nerve somewhere in his back. His spine is not lined up so we thought that is a good observation. Lori at the O2 Chamber has been telling us to see this one chiropractor that is in the natural vitamins and what not. I guess he has a good mix to take the edge off of the tone instead of the Baclofen. The crazy small world thing about it is that Lorili goes to the same chiropractor! He is a Christian and plays Christian music also! James and Marissa took Santana there yesterday and met Lorili there. He has a tool he runs up the spine (which is shaped like a C) and it shows where the fluid is and where there is build up. There is everything WRONG in the neck that he will start working with that.

Here is what is amazing. The chiropractor had a patient who had a disease that would lead to his death and not allow him to walk. His sibling died of the same thing and his parents wanted to fight and do what ever it takes to keep this little one alive. The chiropractor worked on him and he started walking. He is now playing high school football! That is amazing. So I am anxious to see if he can get Santana’s spine straightened out. But we all know God is the true healer and I believe it was no accident to find him.

I am getting sore and I still have to put some pictures up. I will update more as soon as I find anything out!