One More Thing…

One more thing…
January 30, 2008 – 1 Year 1 month 15 days

I almost forgot. Santana had MANY seizures today. And as quoted by his neurologist, Seizures don’t make you smarter. During a seizure, there is lack of oxygen. Like he needs any more of that! If he doesn’t stop these, they will damage him further. He had about 11 or 12 today. Pray for him. It may be because we lowered his baclofen another dose, but I am not sure. Also, while suctioning today, he projectile vomited at me. Why is this a big deal?! He has the Nissen Fundoplication where he is NOT supposed to burp or vomit because his stomach is tied around his esophagus. This means it could be lose. What worries me more, his G-tube has been spitting out junk every time I open the button to plug in the extension tubing. Not good. So, his pediatrician said to take him to the ER. I told her I would watch him and if it happens again, I promise I will. I did put a call into the GI doc though. As selfish as this sounds, if I had to take him, I am not sure I could endure. You should see me. I look like I was ran over by a truck. I have been tossed in the waves and my body aches and I had a migraine all day. Either those are making me sick to my stomach or I am catching some kind of bug too. Pray for a healthy family. Tyree too. I thought I would have had to call my pediatrician back for Tyree. He has an AWFUL cough and was barking like a dog. I ran a hot shower and sat in the bathroom with him. He is snoozing now after crying in his bed for 15 minutes. Whew. Off to bed I go. PRAY THESE SEIZURES WILL SUBSIDE! MAY THIS MOUNTAIN MOVE!

Be Still…

1 Year 1 month 15 days

I have decided that I, as man, am doing too much. I can’t find the healing tool. Only God can do that. So, I have closed the chapter of stressing out trying to find the next therapy. If the money comes and the idea comes around again, I will know that it is an open door to walk through. But for now, my focus is on the Almighty. He is Jehovah Rapha. God is Santana’s Healer! And we shall fear no more because he is also our Jehovah Jireh. Because God will provide as we are tested. I guess I need to read this myself over and over again, because I ADMIT…I have had many panic attacks this week.

I got an email from someone who prays for Santana to tell me that she herself is dealing with brain cancer (not sure the actual term) and is believing God will heal her along with Santana. Pray for her and her family. She has 2 beautiful young kids. Pray for strength and healing. I don’t have permission to post her name, but God knows. So, she told me about a healing service by Rev. Harold Chamberlain who was visiting at Scottsdale First Assembly Dream Center. So Monday night we decided we would take Santana, even though it was over and hour to get there. Boy did satan not want us to go. It was a stressful day all together. I didn’t have a nurse so I had to scramble people together for a doctor appointment and getting Jett to school. Then I forgot to pick up Jett from school because I was preoccupied with a meeting with the state to reinstate services and goals. I remembered before the school called at least. Just 25 minutes late….eeek. THEN…I get a call that I will not have a nurse this week…that WAS filled with appointments. That stressed me out. It hit me like a block wall because it was not the resolution to a problem I expected. I got that call just 20 minutes before we had to go to this church. Then we finally got to go but we drove a half hour within a 2 mile radius trying to find the church tucked into the dark desert. I said, "let’s just go home! I feel we need to go!" Then James found it. Obviously the enemy was getting to me because the service was AMAZING!

He spoke on crisis and getting through it. He prayed healing on everyone and when handed back over to the church pastor, he said he felt the need to surround Santana and pray. There is NO DOUBT the power of God was in that place. It was amazing.

But then I woke up the next morning wondering if it was just a dream because I was good until my appointment at CRS. I pretty much was told that most likely Santana will not get his G-tube out. Would you believe my little stinker! He would not cough or gag. And he ALWAYS does. So of course, I left there pretty crapped out. And I cried. But then I found myself disappointed because I obviously didn’t put in my heart the message from the night before. I learned that God wants to see our reaction. Of course I didn’t act in faith. I acted in doubt and fear. But I know in my heart that he will be healed and he WILL eat again someday, but my flesh took over. So I can not really do anything about it but move forward and keep on believing. The good thing is he can go get therapy on Thursdays at CRS. The bad thing is, only until he is 3. His birthday is February 18th…not much longer. I really hoped he would have cake for his 3rd birthday, but I am not giving up yet! He will give me something by then.

And then yesterday I needed to pick up Jett from school and could not chance Santana choking in the car so I loaded him in the wheel chair and pushed him and carried Tyree. What a mistake that was. I was crying on the way home because it was so stressful and hard and I forgot how much Tyree weighed. But I did not have a choice. I needed to get Jett. So I was just stressed and a mess before going to last nights service. Again, Satan was trying to keep me from Santana getting prayed for more.

So now, I hold in my heart that God heard our prayers and cries and he already has healed Santana, he just has not revealed it to us. I have got to prove my faith more to him. And I am going to do so! Thank you all so much for your help, family, friends and neighbors have really helped me get Jett here and there and going to appointments. (Although I had to cancel today and the rest of the week).

So, right now, I am obeying Gods commandment and I shall be still and wait upon the Lord. For my Joy will come in the morning…not sure which morning, but it is something to look forward to.

Prayer needed for Tues. Appointment!

1 Year 1 month 12 days

Santana has an evaluation for speech therapy at CRS Tuesday. Why is this so important? Because about 7 months ago, we were denied this service because they thought it was UNSAFE. Well, I have been working with him and he has swallowed a few bites of baby food. I would like to be seeing more precise movements in that mouth of his…especially before his evaluation. We could possibly get services from there but most important, we want to find out about getting a swallow study done. So please lift him up in prayer specifically for his mouth skills!

This will be a busy week! We have appointments everyday this week. Which, I am glad to get out of the house again. It is good for a change for Santana too!

I have laid with Santana today and we cuddled. We were tired. My body is so sore. Whether it is true that the weather makes your joints worst or not, I am starting to be a believer of that. I thought my body was consuming me fast, but we got a lot of rain today. I will NOT let this disease consume me. I am not going to lie, I am scared. BUT, my focus is Santana’s quality of life.

Today, we went to the church that we got married in because the Pastor was leaving to travel the world and train up some other pastors for the Kingdom of God. It has been over 5 years since we have been there, but it was GREAT to see some people we have missed. It was amazing to hear there were people there praying too. So God bless Pastor Jim Baugh and his family as they start this new chapter in their life!

I have been doing a lot of reading on this umbilical cord stem cell therapy the last few days. A new friend, because God has brought people in my life that is going through the same situations as me, found another facility that I am going to compare with and it looks like it is going to be around $25,000. YIKES! But if this is a God given therapy, I believe we can do it. But I WILL NOT stress out about it. So please pray for our discernment on this.

Thank you for thinking and praying for us. Because of you, we can get up and say “What miracle is going to happen today!” Praise God! Thank you Jesus!

I WILL NOT BE DEFEATED

1 Year 1 month 10 days

Santana has been running a fever for 3 days and woke up this morning with THICK snot in nose and mouth and frequently coughing a wet cough. I could not get into his doctor until Monday, so PRAY we don’t have to take him into ER. Breathing treatments every 4 hours is helping. Jett came home with a tummy ache, but of course was fine by 3 pm. And Tyree is still a bit stuffy but getting much better.

So, today, I got a phone call that made me slump in my chair and ask, “What are you doing to me God?” I know what Job feels like right now. I just pray I can sustain it like he did. I got blood work back today to find that I have rheumatoid arthritis and am being sent to a specialist. This is an auto immune disease that attacks your joints and if not taken care of, can be crippling. I know I asked God to give me what Santana has and let him live a normal life, but I didn’t really think was going to give me a chance of not walking later in life. But I know my God is good and because I was able to catch this at a young age, maybe I can keep it under control. What took me to the doctor was when I went to go up to the kitchen (5 steps) my knees couldn’t do it and used my mostly my hands and arms. I hadn’t told anyone in the family until I got the results back.

This is just one more thing to attempt me to break my faith in the almighty, but I will not. If it takes my joints to be stiff and not be able to type or walk again, it will only mean I will praise God harder. Because we don’t wait for the storm to pass in this house, WE DANCE IN THE RAIN!

“Oh that I might have my request, that God would grant me the thing I long for!” – Job 6:8

Worn Out

1 Year 1 month 9 days

I am flat exhausted. Besides our trip to Pennsylvania, I do not remember the last time I had more than 2 or 3 hour stretch of sleep without waking up to suction or feed. I am physically worn out. It hurt for me to get out of bed so I went to the doctor to find out my joints all hurt most likely from arthritis. We did some blood work and he put me on a med. I felt much better this morning. I could at least walk without limping too bad. Needless to say, he said my sleep…or lack of…is what could be causing the extreme pain. Boy, I feel so old. I got this on top of plantar faciitis (pain in feet)…you would think I was…nevermind…don’t want to step on any toes with throwing out an age. We are only as young as we feel…right?

Yesterday I spent a total of 1 hour between 2 pharmacies dealing with meds and deductibles and what not. FUN. As I sat with my eyes welled up in tears I couldn’t help but to think WHY IS SANTANA ALIVE? What is the point of this? I am on a never ending ride…STOP THIS WORLD…I WANT OFF!

Anyway…we went to the school today for Santana’s evaluation. See, I was under the impression that preschool for Santana would mean extra therapy. Yay! Who wouldn’t want that. Well, his preschool is going to be just like any other kids preschool. Snack time, story time, recess, art. While there are therapist that come in once a week, it is nothing like at home, and there are 15 plus other kids to deal with in those 3 hours a week. According to Physical Therapy, they just go in to position and show the aides. Whoo hoo! No range of motion or anything. I am disappointed. I am ready to look up different programs and find a state that actually wants to help your child improve their quality of life with more therapy.

I am tired of figuring this out. GOD! It is up to you! I think I am trying to hard to find the cure for Santana and not letting God work his miracles. I think I keep pushing him back when I try all this stuff, so I am just going to wait. If the money comes in, I know God is saying go for it. But I am NOT going to break myself to get there. And for those who have donated, thank you. Some have asked why the chip in amount has not changed. That is because you donated through the Paypal button instead of the chip in button. For those who don’t know, Chip in is linked to paypal. I thank you all for your generous donations. God bless you!

I need to go space out or something while I wait for Tyree to wake up. Whom is not feeling well and is all stuffy and gross. Poor baby! So, THANKS!

A New Look to Help Santana

A New Look To Help Santana
January 22, 2008 – 1 Year 1 month 7 days

As you can see, we have added donation buttons. Many have asked about us using pay pal, so we are! And what a better time for it…

So I have spent the last few days doing research. The research I have been checking out is the stem cell from umbilical cord. And UV/Ozone treatments. I find the stem cell treatment really interesting. We would be in Mission VIejo for a week and then taken down to Mexico for the procedure…because APPARENTLY America rather drug us and just kill us off at the end. All it is is a quick shot and the stem cell finds where it needs the replacement. They have seen vast improvements such as walking, talking, and personality changes within 3 weeks. Expensive? What isn’t?

Last night we talked to the naturopathic doctor about his uv/ozone treatments. While this is known to do wonders for cancer patients, he could not give me straight answers for Santana’s case. Basically, Santana and his condition would be completely experimental. You would think, they would be excited to experiment with his case and do it as a study….for cheaper or something. He could not even give us an answer to how much. The thing that annoyed us, is we were there for over an hour and a half and he pretty much only talked about his treatment and what it has done for others but nothing much about santana. So basically we gave him $150 dollars to continue doing these treatments. I would be interested it these treatments…but most likely not with him. He disappointed me.

What are these treatments you ask? It is 3 parts. The first part, I think I remember, they take some blood out, heat it, and put it back. Not sure if the is totally correct. But the other is like an IV drip of oxygen. Compared to Oxygen treatments, it lasts for days instead of a few hours. I have not done all the research to compare. I am not even sure if I am telling it right. If he would have given me a website or reading material, I could be more accurate, but for whatever reason, he said he will put something together and give it all to me. Sorry, but I am not going to pay him more money for written information he has already told us. I am sorry I am so frustrated. But I do NOT like being taken advantage of.

I asked Santana’s GI doctor if we could get a swallow study done and he referred us to speech therapy at CRS. What do you know?! At least SOMEONE is on the same page as me! So I ask, please pray hard that he shows improvement in his mouth reflexes! I will let you know when the appointment is, as soon as I find out! But please pray hard for that!

Tomorrow, we go to the school for Santana’s evaluation. I am getting nervous about that. I think I might follow the bus to school the first week…and maybe find out if I can sit in on it. I am a wreck. But in the end, it will be worth it all! I think socializing will be great for him!

As you can see, we have a lot of things to research and study. And as you know, whatever we choose to do, it is going to cost a lot of money. But in the end, we know God is the one true healer! I think he just sends stuff to help us out. Just like the guy who was on top of the burning building and died and went to heaven. He asked, “God, why didn’t you save me?” God said, “I sent you a fireman and you said no I will wait here, my God is going to save me! Then I sent you a helicopter with a rope and you told them to go away too because you would wait for me to save you. So I sent you help and here we are today.” I think you have to pray for discernment before making choices and have to keep in focus who the real healer is. Praise God for sending us help! But pray that we make the right choices…if we go this route.

Busy Day

1 Year 43 days

Today is a busy day. We are first going to get a massage for Santana. Then we head over to CRS for an appointment with his GI doctor. It usually is a…"He’s doing great, see you in 6 months." But I am going to find out about getting him off all milk. Who knows… Then tonight, we go to the naturopathic doctor. I am so stinkin’ excited! I can’t wait to see the options he discusses.

I looked into strokedoctor.com. It is VERY intresting! They can do stem cell through bone marrow now! That is awesome, so now I would consider it. Before it would take a life to give a life and I DO NOT agree with that. So, now we need to raise money for that. We will be spending some time in California I bet this summer!!

So, pray today that everything goes well and we find the right threrapy for him!

Trying New Faces

Trying New Faces
January 21, 2008 – 1 Year 42 days

Going to Philly (Lansdale, PA) was so refreshing. It could not have been a more perfect time and length of time going. The Together Forever marriage seminar had an intimate crowd of 30 couples at the Family Worship Center Church. The pastor and his wife were so sweet. Everyone there was so sweet. The second day, we were asked by our marriage pastor, Pastor Leo Godzich to give our testimony. To us, this is just life. Never would I imagine that it would well up eyes with tears and never did I stop to think that we are really in God’s hands since the chance of a couple staying together after a loss of a child is so slim. And technically, we lost Santana. So we have a 92% chance of divorce. Even higher since I came from divorced parents. But this is what the world says, but we stand on the word of God and believe that he is in control! We will endure through this valley and come out in the end a stronger family and have more faith and love for God than before we started this journey.

One more note on Philly…You HAVE NOT had a Cheese steak sandwich until you go to Philly. MMMMMMM…I would fly there just for that!

Before I forget, when I sat down to type, a kids show was asking what you want to be when you grow up and of course I asked Jett. When he could say, Doctor, Sports player, Race Car driver, he said PASTOR! He said he wants to be like Pastor Tommy Barnett. If this is so, He has picked an AWESOME person to look up to! But…he would have to go by Bishop Jett Black…it just sounds better…

Santana was making really cool facial expressions during church yesterday. It looked like he was going to try and say something. But then on the way home, about 20 minutes from the house, I noticed his face was twitching and his eyes were fixed to the left. He stayed in this new seizure for 2 and a half hours. I gave him a wafer and that did not even break him out of it. It was pretty scary. It wasn’t like is normal full ones, t had lots of facial twitches. I called the pediatrician and she said to call Neuro today if he goes into it again. He fell asleep right after I hung up with her then woke up fine. So we will see.

We are seeing a Naturopath doctor tomorrow night. I am rather excited with what he will have to offer. I really hope we can hold off adding new meds for seizures until we talk to him. But if Santana goes into that again, you betcha I will be taking him in.

I had more to say, but can’t think of it right now, too early. But I want to thank the people who stand by our side good times and bad. You are the people who have showed loyalty and true friendship. God Bless you and your families!!!!

My Super Hero

1 Year 38 days

Yesterday was interesting to say the least. We found that Santana has high levels of Uranium. Maybe it is because he is my super hero. We are on some vitamins that should offset that. In fact, we are on all sorts of natural stuff now. In the natural realm, he is taking, GABA, Bio Energy C, EPA DHA (fish oil), Magnesium, Multigenics, Gingko, and EDTA Calcium powder (the metal detox). This is on top of his Zantac (stomach), Labetolol (blood pressure), Traxene (seizure and spastic control), and baclofen..which he is coming off of. Oh, and his breathing treatments. Whew. At least most of that is natural now. Speaking of Natural….

We are going to have a consult with a naturopathic doctor who does UV/Ozone treatments. From what I understand, this has been around a while curing cancer but used to be done only in Mexico. So, I am anxious to find out more about these treatments.

Then there was 2 other doctors recommended and the crazy thing is that I have researched one. He is in Mission Viejo, California. He is known as the stroke doctor. He has found in stem cell research that you DO NOT need to take from a embryo. It can be taken from me! So we are going to look into that.

Also, we were referred to an EEG Biofeedback in Beverly Hills. I think it might be like the brain state technology that is right here in Scottsdale though. So I am going to compare the 2. But we have been talking about going to California for a while, so this can give us an excuse to go on a little trip!

Santana did AWESOME during O.T. yesterday. She had a mirror and it squeeked. He did good at holding his head up and looking at it then she moved it to the other side and he was trying so hard to rotated his head over to see it. He also tracked it really good at one point. It was the best I have seen him follow an object. I needed that to uplift me!

Speaking of uplifting. A friend of mine called to tell me that her server at the Olive Garden was wearing a Believe bracelet of Santana’s and asked about it and he had gotten it from the fundraiser at Arizona Hair Co. last June or July. It was pretty cool that he had some positive things to say. I guess there are a lot more people following the site than I think. Sometimes I feel alone out here…but I know I only have an audience of 1. I want to do things that glorify God.

Pray for James and I! We are leaving early tomorrow morning to go with our Marriage Pastor to Pennsylvania overnight until Sat. night. This is part of a silent auction we bid on. It will be refreshing! But pray we don’t get snowed in!

I am stealing a blog post of James and adding on here. I think dad deserves a word! So here it is…Thanks for your support!!!!

From James Black:
incredible new job!
Category: Jobs, Work, Careers

Life, What a crazy life we lead. How things come and go, How things change good or bad. How we react to them, positive or negative. This last year we have had a crazy and wild ride. We had our lives totally re-routed…..We have adjusted, with lots of struggles. Thank goodness for our Awesome Lord and Savior. He has totally carried us through this. On top of all the stress of Santana’s accident, our living arrangement, our finances, our social life’s being totally changed. It was time for me to go back to work. I tried to get back to work at my dealership which I had left, Power Nissan-Tempe, since the week before Thanksgiving. As hard as it is to believe, I wasn’t able to go back! On numerous occasion I was referred to as Family! If this how they treat family I would hate to see how enemy’s are treated. I did gain a lot of knowledge during the way, and hope to use it for my future. I will really miss some great individuals who will always be my friends there. I have a great amount of respect for them. But there has got to be a place that I can really use my talent and knowledge to succeed in life. We thank the Lord that Power Nissan-Chandler was willing to have me. I was slightly nervous starting at a new place, which went away after the 1st couple of hours. So many people I started in the business with, are still there. They made me feel like I never left. I stepped down from my service director job to become just a service advisor again. What a BLESSING it has become. I never thought I could enjoy my job the way I enjoy working at Power Nissan-Chandler. I love going to work and I have really enjoyed all the open arms and people who are really excited to have me there. It is also really close to our house. I give all the praise to God. He knew my heart and wouldn’t let me detour away from that. I think I would have been really miserable at the Tempe-Nissan store, but I was still willing to go back there. Amen to our awesome Lord and savior, for not letting that happen. I feel like I am alive again! All my friends have noticed a huge difference in me. I smile alot, I really enjoy being around people, talking to them, Helping fellow employee’s….It’s an awesome working environment. So what ever you do or are doing, DON’T get caught in a rut, Do something about it. It just might be what the doctor ordered!!!

This and That

This and That
January 16, 2008 – 1 Year 37 days

So, today, we are going to Santana’s appointment which is a consult to the result of a test where we had to cut his hair and send it in and they were looking for lead and what not. I am anxious to see what they find.

We are still hanging around the house because of lack of funds to do therapy for him. I heard about vitalstim that stimulates the throat to retrain to swallow. I see they do it at the hospital close to us, so I am going to look into that. We have been working with flavor sprays and baby food. He seems to have issues with pushing it to the back of his throat. I was hoping he would eat a bit of cake for his birthday, but we are a month out and I am not giving up.

So, I NEED HELP! Do any of my friends out there know how to set up a paypal account for donations?! I don’t want to sign up for the wrong account and I am getting frustrated trying to figure it out! HELP! I think more people will be willing to help out if it was easier to do so.

Santana will be talked about again on 1310 am this Sunday (I think this is the 3rd or 4th time). I pray that someone will hear and want to help with therapies.

I made a saddening call a few days ago. That was a call to my realtor. We have decided that this house is too much for us. We waste half of it and it is too hard to keep up. It saddens me and brings me to tears because this house has so many memories of Santana how he was supposed to be. I even have a spot on the wall that he colored in my office (now his room) that I have a hard time leaving behind. I can just see him going up and down the stairs, but it isn’t worth it. The time and energy it takes to keep up with it is not worth it. I don’t know what the future holds. But I do know that we all need to be back in our own beds and live an average life.

Santana’s spine is starting to get a big curve to it and it worries me, but it is nothing to knowing that his hips are not even in socket and will not be without surgery. I just want something. I need the next big something. Thanks to those who continue to support us with encouraging words. We appreciate it!