Weekend Update

Hope everyone is having a great 3 day (some 4 day) weekend. We are doing pretty well. James worked yesterday and Santana was running a fever of 101. Still having lots of seizures. His neurologist is going to wean him off the ketogenic diet since it isn’t doing him well anyway. I started this weekend really worried. I didn’t get to the CRS pharmacy to pick up his blood pressure medicine, lebetalol. The funny thing is, we were just questioning his pediatrician about how we will know if he needs it or not. No one at CRS actually follows that med. He was given it starting in the hospital. So this weekend we will know. I have been taking it a few times a day and it has been pretty good. The highest was 127/78. I think he may be able to handle it.

Our weekend, besides that, got started off really well. According to our realtor, we got approved for our land. We thought, what good is that without a construction loan. Apparently another bank can do the construction loan it will just take a few weeks to process. So that was really exciting!

Jett spent the weekend with my brother and his wife. He had so much fun! So much, he had to wake them up in the 5am hour to play some more both mornings.

Santana ditched school and instead went to Peter Piper Pizza to meet up with some friends. We had a lot of fun. This time his nurse didn’t let his head bang on the ride. HA HA! Sorry Amber, had to bring that up. It was actually kind of sad. We would take him out and none of the rides there would fit him. It was too steep of a back. How disappointing for little man. Guess we need to start going to Chuck E. Cheeses.

This morning we overslept and went to a church closer to us (we drive 50 minutes to an hour to ours…but worth it). This church was really good. Then as we were leaving, I saw Santana’s speech teacher from when we were at Riggs elementary. She was telling me there is a class for kids with disabilities. We went to speak to the coordinator and they offer someone 1 on 1 and he can either stay in the special needs class or that person will take him to his class with kids his age. I thought that was awesome! AND, they have a support type small group where the families meet and the kids and siblings go to a class on a Thursday night. They also train the siblings how to take care of them and play with them. I think this would really help Jett.

THEN, we are walking down the hall and Mr. Celebrity catches someone’s eye that reads his blog. Even crazier than that, our property backs up to theirs! What a small stinkin’ world! I was really excited and I felt at home there. So many friendly people and the fact that they offer what they offer is awesome! What a great day!

Pray for Santana’s blood pressure. We can’t pick the meds up until Tuesday. Pray he will be ok and that we can get off of that med! Have a great weekend and as always, thanks for checking in on us and becoming a part of our family!

Save me from this state!

So, the school is taking my nurses away and replacing with one I have no say in and is negative towards our belief of a miracle. That is not going to fly. As of now, as long as we are in this district, he will no longer go to school. I am VERY saddened by this because I really liked his teacher. But I don’t appreciate my nurses who love and adore him being pushed out and replaced with a district provided nurse who could care less. Jodi. I think I need to move to New York so Santana can go to that AWESOME school Charlie can go to! This state is an absolute joke.

When it rains it pours. WHERE IS MY UMBRELLA?!

So I was happy to know that our land was going to be in Gilbert instead of Chandler so we can try out a new district. But apparently that piece is still Chandler School district. Not happy about that whatsoever. Maybe this loan is not going through because we need to pick up and move. You don’t understand my frustration. But like I have said before. NO ONE could possibly care for my Santana Banana like I do. So at this point I am going to look for a private special needs school and pay ourselves into debt so Santana can get the care, therapy and education that is needed. Or think about moving out of this district. Something has got to change cause I am sick of getting these phone calls that leave me upset and crying.

Why is it just a vicious never ending cycle?! I think I am going to go interview the districts around town and look into outside of town and see what happens. Santana does NOT deserve this. I refuse to let him go back to school so tomorrow we are taking him to Peter Piper Pizza (I already planned to with Tyree to meet up with some friends) so now Santana can go socialize with some fun. It is too bad I have to yank him out like this. I really liked the teacher, as did the nurses. So Santana will miss you Jacci (if your even know about this blog and read it).

Did you forget?!

There are many people that read Santana and Luke’s site. We really need you to go out and have fun in the name of these AMAZING boys. If not for them, there are many other charities that are helped through this event. The number 1 of those (on my list) is St. Joseph’s Pediatric ICU! They were so awesome to my family and Renee, Laura, and Melanie made this transition of this new life WONDERFUL! I can’t begin to name the wonderful people on the pediatric floor who allowed us to overlimit our guest past the times. Especially New Years Eve 2007. Best Night EVER while going through what we went through. I miss you guys! Umm…not so bad I want Santana to come anytime soon. I know all you at St. Joe’s peek in on us. Help your own place of work out!!!!

Please sign up online! It is safe and secure! It is a NON-profit organization putting this on and they are great! When you sign up, they will have your name at the gates. We really need a number so they can plan ahead how much food and drinks (all included in your AWESOMELY low price!!!!) Many waited last minute for Diamondback tickets. Please don’t do it for this! Help us be prepared a head of time! Did I mention there was going to be an AWESOME band?! They are called “The walkens”. East Valley Sol had them last year for this event and said they were GREAT! Check out their website http://www.thewalkens.com/index.php! I already say this band ROCKS because they are willing to do so for an awesome cause!

If you are wondering if there are anything worth bidding for the auction/raffle here are SOME of the big stuff: Ryne Sandberg signed jersey, Shaq signed jersey, weekend in a Prescott cabin, Lazy Boy recliner, Luxury queen mattress, Budweiser mini fridge, tons of signed baseballs and pictures, partylite candle basket, Tupperware basket, foursomes from 10 different golf courses….this is just the surface of what they have collected. They will also put together dozens of awesome packages for men, women, children, etc. Did I mention… a signed KURT WARNER Mini helmet.

Got a bike? No no, not one you pedal. I mean a MOTORCYLE, Chopper, etc. Metal Asylum Kustom Finishes has donated a paint job of the tank and fenders. Chad is one TALENTED artist. And an awesome brother…but really. His work amazes me. Click the link above to check out SOME of his awesome work. He has done MUCH more but they are not all up there. Oh wait…cause I was supposed to give him copies of his portfolio. Sorry Chad…I will get it to you!

Thank you to EVERYONE who has put time into getting stuff for this auction. You are amazing! It is NEVER too late! If you have any items or services you would like to donate. Please contact us or Nick at East Valley Sol (email in left sidebar). Then…SIGN UP ONLINE! please.

I am sorry I have to nag. But this event is VERY important to us. Not to mention. It is going to be fun! Santana will be there…if he is feeling well post surgery. But please remember… every one but Santana and Luke MUST be 21 and over.

Santana seems to be feeling a bit better. He went to school today, and by the way things are going…he may not be going much longer. I don’t trust anyone but his nurses to work with my boy. You know, people who are positive and truly care. Not to mention they are going to try to send him with no nurse on the bus. Ummm…NO! That is the biggest reason he has a nurse. He chokes in the car. Especially since the vibration shakes it all out of his lungs. At this point, I just pray he gets into foundation for the blind. Their therapy program is MUCH better for his condition. Although, I really do like his teacher. I think she is wonderful.

Pretty much everyone has been to the doctor this week but Jett. Poor James has Bronchitis. I thought he was going to hack a lung out the other day. I feel bad cause he works so hard 6 days a week and long hours. Pray he feels better quick! I went in for a really bad pain I have been having in the back of my head for the last 6 months or more. It is a constant annoying headache with these break through spikes that feel like I am being stabbed in the back of my head. Really tense. But apparently it is just chronic tension head aches mostly caused by stress. I am on anti-inflammatory meds for my arthritis but that does not help and neither does any over the counter pain killer. I was given some pretty strong stuff and I took one tonight and still it won’t go away. It is so annoying and as if I don’t have enough going on. So please pray they go away.

Again. SIGN UP TO GO PAR-TAY!

Negative

X-rays came back negative. He is “ok”. Must just be viral. No fever today so I am going to send him back to school. He was a lot more alert.

We added some more friends for Santana. Check them out and add them to your prayer list. Precious Miracles is my WONDERFUL friend Stacey who really stepped up to the plate and helped me out this last year. She went back to Ecuador, after a little break, where she has run an “orphanage” for a lack of a better word and is missionary status. She is AMAZING and truly cares for kids with special needs. She understood what it was like and she was one of the few people who would be willing to keep an eye on Santana. She is wonderful! Please stop by her website that explains precious miracle or read her blog. She is AMAZING! I love you Stace and miss you to pieces!

So now we just press on and pray for the best.

No Ear Infection…But…

Maybe a bigger problem. Tomorrow we have to go back to the doctor because we need to go across the parking lot to get some Chest X-rays done. Since he is showing every sign of being sick including a low grade fever, but does not have an ear infection, she wonders if it isn’t pneumonia. I don’t think so, but really, what else could it be? He has more of a rattle than usual, he gets like that with ear infections. He has just been lethargic all day. I think he was more bored than anything.

So tomorrow I will know more. He has his appointment at 9:45 am. Hopefully he will breathe better tonight and not be so distressed.

Little Man is a Sicky

Santana woke up about 4:45 am in a bit of distress. Breathing REALLY heavy. His food was done so I brought him in bed with me. There is something about him laying with his mama cause he always falls asleep. But he still breathed heavy. His Pulse-Ox beeped all night. It was a frustrating night. We are taking him and Tyree in at 4 today. I gotta get them checked out and see what is going on.

There must be an infection because Saturday and Sunday he had 9 seizures in one day…we usually only have 2-3. These seizures have GOT to go. Going to the Dominican Republic is just not an option. I don’t see us getting $30K dollars. So I have been looking into Ozone/stem cell treatments in Mexico. This is stem cells from cord blood. The thing I like about this place is not only the general surgeon who does the stem cells there, but a pediatric Neurologist and Neurosurgeon. He will stay at a hospital for 3 days. I immediately called my mother in law, who is from Mexico. She said it is pretty nice and she recalls my brother in law (who is an orthopedic doctor in Mexico) doing internship or some kind of work at that 15 room hospital. This place is discounted from $21-25K down to $18K as part of a study. We just have to journal everything….that is not hard from me.

So as long as him having a surgery the month before, we will get it set up for October 23rd. Unless they open one in November, more time to recover from the surgery. I have been praying about this. Please pray with me. These seizures HAVE to go. Santana will NEVER improve if they don’t go. Every time he has one we are back to where we started. We need to get improvements. We are exhausted.

Pray for our family. The enemy is working really hard on us right now (maybe it was my last post that caused that) and we are just beat down. Pray for our minds. Pray for peace.

With FAITH you BELIEVE!

Believe.  That has been the word that stuck in my head from the first time I saw Santana barely hanging on to this life in that hospital bed with tubes coming out of every hole in his body.  They said he won’t make it.  But my mind, or is it that voice of God, kept telling me to BELIEVE.

Last night he had a seizure that either caused him a lot of pain or scared him.  He threw himself forward many times within 3 minutes at a force that knocked my forehead when I got to close.  His eyes watered.  He had a look of fear and pain.  As a mother, we never like to see our kids hurting.  Whether it be physical or feelings.  As I watched him, it made me wonder what I really am Believing in.  What does that word really mean?  So I researched it so I can have a better understanding of what I am telling you all when I say BELIEVE!

The Webster definition of believe is: 

1 a: to have a firm religious faith b: to accept as true, genuine, or real <ideals we believe in> <believes in ghosts>2: to have a firm conviction as to the goodness, efficacy, or ability of something <believe in exercise>3: to hold an opinion : think <I believe so>transitive verb1 a: to consider to be true or honest <believe the reports> <you wouldn’t believe how long it took> b: to accept the word or evidence of <I believe you> <couldn’t believe my ears>2: to hold as an opinion : suppose <I believe it will rain soon>

With these definitions, I would have to agree that I do have a firm religion and also the part about accepting the word or evidence of.  That word would be the word of God.  He gives us promises and we HAVE to believe and have FAITH in him.  Then I pondered on the word Faith.  Which the definition states:

1 a: allegiance to duty or a person : loyalty b (1): fidelity to one’s promises (2): sincerity of intentions2 a (1): belief and trust in and loyalty to God (2): belief in the traditional doctrines of a religion b (1): firm belief in something for which there is no proof (2): complete trust3: something that is believed especially with strong conviction; especially : a system of religious beliefs <the Protestant faith>

I would say I am loyal to my baby Santana and fight for his rights.  I believe in God’s promise and trust him with all my heart.  I believe the doctrine of the Holy Bible.  I believe Santana will be healed and there is noh human proof that he can.  Doctors say he can’t but I firmly believe HE CAN.  I have complete trust in God and my gut feelings of what type of therapy to do with Santana.  

Then I wanted to see what God had to say about believing.  

Genesis 15:6 (Whole Chapter) 
And Abram believed the Lord, and the Lord counted him as righteous because of his faith. 

Numbers 14:11 (Whole Chapter) 
And the Lord said to Moses, “How long will these people treat me with contempt? Will they never believe me, even after all the miraculous signs I have done among them? 

Matthew 8:13 (Whole Chapter) 
Then Jesus said to the Roman officer, “Go back home. Because you believed, it has happened.” And the young servant was healed that same hour. 

Mark 9:23 (Whole Chapter) 
“What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a personbelieves.”

Mark 11:23 (Whole Chapter) 
I tell you the truth, you can say to this mountain, ‘May you be lifted up and thrown into the sea,’ and it will happen. But you must really believe it will happen and have no doubt in your heart. 

Mark 11:24 (Whole Chapter) 
I tell you, you can pray for anything, and if you believe that you’ve received it, it will be yours. 

Luke 1:20 (Whole Chapter) 
But now, since you didn’t believe what I said, you will be silent and unable to speak until the child is born. For my words will certainly be fulfilled at the proper time.” 

Luke 1:45 (Whole Chapter) 
You are blessed because you believed that the Lord would do what he said.” 

John 4:48 (Whole Chapter) 
Jesus asked, “Will you never believe in me unless you see miraculous signs and wonders?”

John 6:35 (Whole Chapter) 

Jesus replied, “I am the bread of life. Whoever comes to me will never be hungry again. Whoever believes in me will never be thirsty. 

John 11:25 (Whole Chapter) 

Jesus told her, “I am the resurrection and the life. [ Some manuscripts do not include and the life.] Anyone who believes in me will live, even after dying. 

John 11:40 (Whole Chapter) 
Jesus responded, “Didn’t I tell you that you would see God’s glory if you believe?” 

John 20:29 (Whole Chapter) 
Then Jesus told him, “You believe because you have seen me. Blessed are those who believe without seeing me.” 

Acts 16:31 (Whole Chapter) 
They replied, “Believe in the Lord Jesus and you will be saved, along with everyone in your household.” 

Acts 27:25 (Whole Chapter) 
So take courage! For I believe God. It will be just as he said. 

Romans 10:9 (Whole Chapter) 
If you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved. 

Romans 14:22 (Whole Chapter) 
You may believe there’s nothing wrong with what you are doing, but keep it between yourself and God. Blessed are those who don’t feel guilty for doing something they have decided is right. 

 Corinthians 8:11 (Whole Chapter) 
So because of your superior knowledge, a weak believer [ Greek brother; also in 8:13.] for whom Christ died will be destroyed. 

Galatians 3:6 (Whole Chapter) 
In the same way, “Abraham believed God, and God counted him as righteous because of his faith.” [ Gen 15:6.] 

Hebrews 4:3 (Whole Chapter) 
For only we who believe can enter his rest. As for the others, God said, “In my anger I took an oath:‘They will never enter my place of rest,’” [ Ps 95:11.] even though this rest has been ready since he made the world. 

Of course, my favorite is, “If you believe, you will receive whatever you ask for in prayer.” Matthew 21:22

This verse is what we stand on.  But maybe I have not believed enough.  Maybe I need to pick up that cross and cling onto God’s word.  I don’t know why our prayers have not been answered (yet).  I don’t understand how God can look down on our family who is hurt and constantly pray over Santana to be healed in the name of JESUS.  I really don’t understand how my little guy Jett can cry out to God for Santana to be healed so that he can play outside with Jett.  I will never understand.  But again, that is the flesh.  I need to BELIEVE and TRUST in God with all my heart.  

I know I have been in fear of not having our property to build our house and being stuck in a rental.  I have feared his surgery, I have feared his deformations.  I should not fear the world.  I should FEAR GOD.  This does not mean fear what he won’t do for us or fear punishment.  This means to stand in reverence and in awe.  Let him do his work.  He is in charge.  If stem cells is what we need to do, God will provide.  God will show us where to go.  I believe that this was given to us as a means to help Santana.  But I am not going to stress out about it, God will provide the means to go.

So I stand as only human to confess that maybe I haven’t stood on my own preaching. Maybe I have not believed 100% .  I thought I did, but I now know that in the back of my mind, there was an inkling of doubt.

 Mark 11:23 (Whole Chapter) 

” [Matt 17:20; 1 Cor 13:2] Truly I say to you, whoever says to this mountain, ‘Be taken up and cast into the sea,’ and does not doubt in his heart, but believes that what he says is going to happen, it will be granted him.”

So, I myself, has learned that when I walk away from those doctor appointments disappointed and depressed.  I have shown doubt in my faith.  I have not believed in God’s word.  He has promised me GOOD AND PERFECT HEALTH in Santana and I am going to move forward and BELIEVE that Santana’s life will not end with him laying in a hospital bed or confined in a wheel chair.  I will not give up and I will CONTINUE to praise God through this storm.  I will dance in the rain.  I will make lemonade with the lemons that have been given to us. This tragic situation can be turned into something SWEET!  Santana will amaze EVERYONE and I BELIEVE that more people will come to Christ because SANTANA will be LIVING PROOF and evidence of God and his healing power through the BLOOD of CHRIST JESUS!  

Amen…  I feel like a CONQUEROR!  

STANDing on God’s Promise!

Wow, this site is driving me nuts. I get more junk mail comments than I do comments from the readers. Seriously. Don’t people have a life?

Santana got in his stander yesterday and fell asleep. If you remember, when we fitted him for it, he fell asleep! At least he is not uncomfortable! He was very bright yesterday. His eyes were clear and straight. Not so much today, but yesterday he looked BEAUTIFUL! Well, he is!

Santana’s Occupational therapist is switching to work at the school district so sadly I have to wait on that LONG list to get a new one. =( That means getting a new therapist who has to learn to put up with my craziness of the DON’T GIVE UP on my child attitude and I KNOW HE CAN DO IT! But they will get used to me.

We need prayers for the family! Here we sold our house and put earnest money down for the lot we want to build on and sadly the PMI company is what is holding us up. With the falling appraisals in this market, it is too high of a risk to insure the mortgage company in case in the end it does not appraise for what it is estimated for.

So we expire tonight (yes we already got a finance contingency extension) and chances are 0 to get in. They said if you wanted to buy a house already built for the same issue…sure! You can do that right away. It is the construction loans that are tough. We are REALLY bummed. This house was going to be built for Santana and his needs. Now it will take a while to find one that will fit that criteria. We can always remodel, but BLAH! Not to mention, now we are locked into our rental for a year. Did I mention how much I dislike this rental?! We have had the air looked at 2 times and we are just sweatin’! Not cool. So needless to say. This situation makes me wish we never sold our old house. I don’t understand why things are not falling into place, but they are not. I have no idea where God wants us at this point. Please pray that things work out one way or another and pray for understanding. Because I don’t get it. Right now all I can think is, HAVEN’T YOU GIVEN US ENOUGH?! Man do I wish God didn’t trust me so much!

Pop goes the G-tube!

I never want to witness that again! Poor Santana! They ripped that old g-tube out today. No kidding. I mean they just pulled his tube, skin coming up, until POP! Seriously! Ouch! ugh! To show how bad it is, when they first surgically put it in, they brought it down the mouth, throat and out the hole they put in and pull the flaps down. So instead of putting him under because it costs too much and takes too much time, they just yank it out. BLAHHHH(shiver). So, he now has a Mic-Key button which is the most common. This will have to be changed out every few months…by me! Not digging that. I don’t like it also because it sticks up so much further. I fear it will get caught on something and rip out. EEEEEEKKKK! Ok. I am all good now. Santana is a little tender. But Ok.

We will be back to CRS on the 8th for his PreOP appointment for his surgery which will be on the 18th! I am so excited so we can get that range of motion back and get him standing! It is outpatient so I am not too worried. He will be put out for it and that is what worries the doctors more than the surgery itself. But I believe he will be A-OK. Maybe he will come out of it better!!!!

Speaking of CRS… Someone who saw my shirt with his site when we were there at neurology and got online and emailed me and I accidently deleted it when I went to respond. If you are reading this… PLEASE EMAIL ME BACK! I would love to put your beautiful son’s link on my site! I feel so bad about that! If you are reading this and have a child who is fighting a life threatening illness or brain injury and would like me to add their link, please email me.

Today, after CRS, we went to Santana’s school for his school pictures! It wasn’t the best, but I didn’t want to ask him to do it again. It was ok…but his wheel chair doesn’t allow him to be completely up and straight. But we will see, it always turns out better when printed.

Speech is doing GREAT! He pretty much is rocking it and he should have NOT been without these last 20 months. His therapist is impressed with his reaction in his tongue. He would have been a lot closer to eating I am sure, if we would have had therapy all this time. But it is ok because it is not our time, it is God’s time.

Please pray he feels BETTER and take the tenderness away. Pray we can get this loan so we can move on and get to building the house that will make life more simple and the therapy room for Santana’s recovery process. We believe! Do you?

Just another update…

We finally got the stander!  Now we just got to get his feet fixed…again.  At least it is almost ready for when he gets his surgery September 19th.  I wish it was sooner…but nothing I can do about that…and at least it isn’t 6 months down the road.  We go on the 8th for a pre-op appointment. 

Tuesday, we go get his G-tube replaced.  I am NOT looking forward to it.  The last time we went, he warned us that when it is time to get that changed (It is the original one from 19 months ago…it was supposed to only last 6) it will be painful and it will make a really loud noise when they pull it out.  Unfortunately we don’t have any pain meds left.  But he is a tough guy!

I can’t tell you how EXCITED I was to see my nurse today.  My other one has been out sick for 3 days.  (Hope you feel better!!!)  Let me tell you, the time I went FOREVER without a nurse, it was easier because Tyree just ate and slept.  Now he is ALL over the place.  It was tough to do both.  I had an appointment yesterday and it was frustrating.  I almost pulled Jett out of school so he can ride in the back to suction Santana.  But then Lorili said she could come down but she lives about an hour to and hour and fifteen minutes away and we would have gone half way back up to where she lived.  But to save the day again… was my sister-in-law Janet.  YOU PRETTY MUCH ROCK!  It would have been bad dragging Tyree with us. 

Please continue to pray. Pray that he can actually use the stander someday!  Pray for a spiritual battle going on.  Pray for the approval of the construction loan, this is a bad time to try to get home loans.  With all the foreclosures, it is next to impossible to get a loan these days.  God really is the only possibility we got.  Pray to change the underwriters heart!!!