Believe!

1 Year 2 month 12 days

I really didn’t feel like writing, but I had to get the negative entry pushed down and talk more positive! Santana did better in speech today. She was able to get him to gag today! I just don’t think she was going back far enough before. He did not react to room temp. and cold water when used back and forth. She was able to get his mouth propped open pretty wide which is GREAT! I am going to have to find out where I can buy those spacers and do that to him once a day to get a good stretch.

Santana had puss coming out his ear Monday night so I called his doc and she got him in to see we have another ear infection. It was funny. I had to laugh at myself because I could not imagine what it looked like to get Santana in his wheel chair, Tyree in his car seat, and Jett with his video game pushed through a door. They have us come in a side door so Santana is not exposed to anything and it was a tight squeeze. Whew. I was exhausted by the time I left there. But I got to say, Santana is a celebrity there. If I turned my back, one of those nurses would try to steal him and take him home. They just love on him. He likes it, my little ladies man. It is so awesome! Dr. Sudha is having all her special needs kids photographed and put on a LARGE canvas on the walls in the waiting room. This just shows HOW much she loves those kids. My old pediatrician office just does not know what they are missing out on! What a blessing to find Gateway Pediatrics!

We have a lot of thinking and praying to do about our living situation. It is just not feasible for us. So now we wonder, sell or rent? We would lose a bit renting, but we wouldn’t make much selling. We are just torn because we LOVE our neighborhood and our WONDERFUL neighbors. But this is just not a good healthy environment. If we had closet space downstairs, we could just rent the upstairs out. HA! But no really, we need to pray about what to do with this. We have NO money to put down on a house if we rent it out, so we are just stuck. I like the idea of renting because then WHEN Santana is well again, we can come back and live how this house is meant to be lived in. God will lead us in the right direction.

Tomorrow is Neuro Rehab. We will see what kind of CRAZY idea they have for him now. Pray that he does something! It seems like every time we go, he just stares off and doesn’t show how far he has come. I think he just does not want to show the unbelievers!

I need to get new pics, I know. I am such a bad mom. I promise you all some new pics soon! But today he is wearing his Chiefs shirt he wore in the last set, so I have to wait until he wears something else…I am weird like that!

God is good and I BELIEVE that his miracle is RIGHT around the corner. I have learned that saying, IF it is his will, is actually doubting God. I am just praying and that he will be healed and thanking him for it. God’s will is for good and perfect health…it is in the Bible. So NOTHING can change my mind. NO NEGATIVE will bring me down. I am done dealing with it. Positive people who believe in his healing ONLY please. I will not allow him to feel your negative spirit. I am going to feed NOTHING but positive into him. God is healing him! God is taking care of this family! GOD IS GOOD!

Cast the first stone if you dare

1 Year 2 month 9 days

Today we went to oxygen…YAY! Santana did great. Now we are waiting for his physical therapist to come. I have been really working his tight left shoulder (that arm hangs almost like it is attached backwards). He makes some AMAZING faces while doing this. It certainly hurts him, but I will do it again and again just to see his face. It is a GREAT stretch for him.

Tues. and Weds. we will go again, and then Thursday is Speech at St. Joes and then Friday is Neuro Rehab at St. Joes…NO! WE DO NOT WANT THAT DARN BACLOFEN PUMP! I have a therapist that said one of her kiddos had to have that surgery (it connects into the spine) 4 times because of pump FAILURE! NO WAY. I would not do it! Does any one who read this have a child with the pump?

Santana threw up AGAIN Saturday night. His upper GI is scheduled next week. Hopefully they figure it out before he burns his esophagus up. There must be a bug in the house because Tyree had runny diapers for 6 days straight and Jett has a bit of a tummy ache. But we are all doing MUCH better. So much for the flu shot…eh?

Over the years I have learned NOT to believe everything you hear on the internet. In my opinion, this “Sean” most likely is not a kid but made an excuse for saying something out of line. And if he is a kid, SO WHAT?! If people want to defend me (which at that point no one knew he was a kid), that is their business. And just because I am a Christian, does not mean my readers and the ones who post are. Even if they are Christians, NO ONE…including me is perfect in their walk. So if you are free of sin, then feel free to cast the first stone.

Matthew 7:1-6 says it best:

1″Do not judge, or you too will be judged. 2For in the same way you judge others, you will be judged, and with the measure you use, it will be measured to you.

3″Why do you look at the speck of sawdust in your brother’s eye and pay no attention to the plank in your own eye? 4How can you say to your brother, ‘Let me take the speck out of your eye,’ when all the time there is a plank in your own eye? 5You hypocrite, first take the plank out of your own eye, and then you will see clearly to remove the speck from your brother’s eye.

So, if someone chooses to say something, it is not our place to judge them. Why did I call Sean and some other RN’s out on what they said? BECAUSE, I am defending MY BABY. Just like a mother badger would do. You attack my baby, I will come roaring at you. And that is called INSTINCT.

So anyway, I feel there are some crazies out there that are not using this site to really see how my baby boy is doing, I am not sure why. But I know for the good that this site has brought, satan will send in adversaries to break me down, but my supporters are like my metal footing. You can’t break or burn me down, not with all the prayers of protection going out there. Let’s remember that the focus is Santana and his mighty physician!

Fundraisers and then some…

Fundraisers and then some…
February 22, 2008 – 1 Year 2 month 6 days

I have been in a lot of disappointing situations with dr. appointments, friends, etc. But as I picked up my devotional last night the verse was:

"If God is for us, who can be against us?" -Romans 8:31

I guess the best way to look at it is, If God is for us, WHO CARES who is against us. We are to live for God, not the people of this world. We are only human and are bound to disappoint people, but we are not people pleasers, we are GOD pleasers. You will never understand this theory until you have given your whole self according to his will.

But you know when God has ordained things to happen, especially when someone you least expect decides to turn there back on you, God dives right in and picks you up with something better. And the greatest is that someone that James works with has a carpet and stone cleaning business and they want to help out. I will make an ad that stands out better. But for now…

SPECIAL!!!!!! Clean Your Carpets and Support Santana’s Therapies!!!! For the East Valley! Pay a low fee of $25 a room (minimum of 4 rooms) and half the proceeds go into Santana’s Therapy funds!!! This is a GREAT DEAL! You could not get this low of a price anywhere else!!!

Contact Jim Grandinetti at QUEST CARPET & STONE CARE, LLC
:

480-326-4564 ~Be Sure To Mention Santana’s Site. PASS THE WORD!

Not only that! A long time family friend that moved to Florida called and told me she has been making children’s quilts in her spare time and has 17 that she does not know what to do with. So, she called and asked if I wanted to sell them to help out Santana! I thought that was a WONDERFUL idea. So, I will get some pictures up once she sends them to me! Thanks so much Brenda!

We are so blessed to have met so many people who are compassionate to our situation. I thank you all for your donations! We need like $4,500 more for another 40 sessions of HBOT! Help us out! But most of all, Pray that God will orchestrate this situation according to his WILL!

God Knows…

God Knows…
February 21, 2008 – 1 Year 2 month 5 days

I was surfing around and below is the verse of the day. Fitting after what happened yesterday, eh?

Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me. Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you.”

Matthew 5:11-12 NIV

SO, today’s appointment with Speech was NO bueno. He is so stinkin’ stubborn. He will not gag for her at ALL. One thing that was funny is she went and got a lemon swab to see how he reacted and he did nothing. So, I asked what they taste like and she went and got me one. I put it in my mouth and sucked on it and nothing. She said my mouth should be watering. Nope. So either I have no taste buds or it was a bad batch. I believe the latter of the 2. But either way, he should still gag. But nothing.

Yesterday he did good for his OT. While weight bearing on elbows and knees he picked his head up and looked the other way and layed it down. YAY! He also lifted it off the bed a lot too. Keep going Santana!

Tomorrow morning he goes in for his eeg. Pray they find something! Or even better! Pray they find these spastic movements are NOT seizures!

Help me Believe

1 Year 2 month 4 days

This song really spoke to me today. It is on the new Kirk Franklin cd, “The Fight Of My Life” I put it as the first song on Santana’s playlist. Just read the lyrics. It is awesome that a Christian Gospel Singer will write something that runs through my mind…

“I just want to write you a letter. I have to be very honest with you right now. I don’t really know how to say this… ”

[Verse 1:]
I wanna believe
But I’m having a hard time seeing past what I see right now, I see right now
I wanna be free
But when I try to fly I realize I don’t know how, no one showed me how
Wish I could see that this mess I’m in will really work out for my good, you said it would
So, if you can hear me, can you give me a sign cause I don’t feel you like I should, please if you could
My faith is almost gone, I can’t hold on much longer, take this cup from me

[Chorus A:]
Help me Believe
Can I believe
Let Me believe
I wanna believe
I’m no good on my own, please give me another chance
It’s hard to believe in what I can’t see
To give you my will cause you’re what’s better for me
You can look in my eyes and see I wanna believe, believe, believe, believe

[Verse 2:]
(I want you to know)
I wanna believe
If I never hear I’m sorry I can let it go, gotta let you go
Cause, it’s killing me. Jesus you know how it feels cause you’ve been hurt before, don’t wanna hurt no more
I’m trying to hear you speak, but my heart is growing weaker, take this cup from me

[Chorus B:]
Help me Believe
Can I Believe
Let me Believe
I wanna Believe
I’ve been here before and can’t take that hurt again
It’s hard to believe in what I can’t see
To give you my will cause you’re what’s better for me
You can look in my eyes and see I wanna believe, believe, believe, believe

[Bridge:]
Believe
Believe

[Verse 3:]
I wanna believe when I close my eyes on this side I’ll wake up with you, more in love with you
And, and finally, you will say my race it is over and my work is through, cause I believed in you
I know dark nights will come and some days there’ll be no sunshine and you’re too far to see

[Chorus A:]
Help me Believe
Can I believe
Let Me believe
I wanna believe
I’m no good on my own, please give me another chance
It’s hard to believe in what I can’t see
To give you my will cause you’re what’s better for me
You can look in my eyes and see I wanna believe, believe, believe, believe

Humor me Please!

1 Year 2 month 4 days

Well, Sean, that would be a GREAT idea if we had money left! The money we raised a YEAR ago is gone. That is the ONLY reason we have not been doing Oxygen Treatments. And what does an x-ray…or do you mean MRI…have to do with the way I will treat my son. The first scans came back and they told me that he would be a VEGITABLE and in a COMA for life. Not to mention! They said he would need to be Trached and HE NEVER WAS. Sorry buddy, but tests and doctors DO NOT have the final say in what I need to do to help my son! And I CAN only hold on so long, and I WILL hold on and try until the day MY JESUS decides to take him home. Heaven forbid ANYTHING ever happen to you like this, you wouldn’t know where to begin. You have not experience UNCONDITIONAL love until you go through a situation like this and give it yourself or receive it from the ALMIGHTY father God.

People NEVER cease to amaze me, but I am NOT here for them. I am here for SANTANA and my God. I don’t care what you think. But I will pray for a softer heart in those who think like this. You are the people who have NO compassion and I am sorry you have to walk through life like that. NO ONE, EXCEPT other parents of brain injured kids can understand what this life is like. And I THANK GOD for the Pam’s, the Stacey’s, the Jami’s, and the JODI’s in my life. What a great support team they have been! I love being able to bounce ideas off each other. GOD BLESS YOU GUYS! Thank you for NEVER judging me and understanding WHOLE heartedly our situation!

Stressin’ …again!

1 Year 2 month 3 days

Today we went to his pulmonary doctor and he is setting up an upper GI to see if his fundo is loose or see what all this junk is that he is vomiting. He was given a new nasal spray (flosase caused bloody noses) but would you believe INSURANCE does not cover it?!

Speaking of! We got a denial letter from the insurance regarding his stander. They didn’t see how it would help him. Ok… he is losing muscle tone, so let’s not help him gain that back. Makes sense to me, as much sense as driving a car with square wheels! You don’t get anywhere!

Truth be told, I am overly stressed! I am worn out from dragging Tyree around to doctor appointments. It always seems like it is right in the middle of his nap time when we are gone. And the most stressful for me right now is our finances. We just want to open the doors and let people come and buy it all up so we can get caught up. This has not been easy. And don’t you dare judge me or my family. We have worked our butts off trying to keep Santana’s quality of life the best it could be, but it has flipped us upside down. And! If it was your child, YOU WOULD do the same thing too.

I am so worn out. Continue to pray for Santana to be completely restored, but also for our whole family. We know that God is here, but we want to feel him. Pray for strength. Pray that I can keep my head up. If I didn’t have Tyree, I would probably find myself curled up on the bed all day.

We still have speech on Thursday and an EEG on Friday. BUSY WEEK!

Happy 3rd Birthday Santana!

1 Year 2 months 2 days

Today is a special day, not only is Santana 3 years old, but he is alive. We made it the best we could for his birthday. We could not afford to have a party so we just had our family meet us at Chuck E. Cheese. We go there anyway when my mom is in town to spend time with Jett, so this time we focused on Santana. He also got to have cotton candy and a taste of ice cream. I started to think, was this a waste? Did he even know that it happened? Then I had to shake that thought out of my head because I know Santana enjoyed every minute of it! Happy Birthday Boo Bear!

We also meet up with some family friends to surprise Craig for his 50th birthday. It was a great surprise for him! AND! A nice night out for us too!

This is what our life has come down too. We are in the middle of rearranging, but before mom and Craig left, we used them and Kevin, also from the dream center, to move some furniture. So how is our living arrangements these days? Well, we now have our bed in the living room and Santana’s bedroom moved right there with us. So now, we will work on moving Jett’s room down into where Santana’s room was, which was my office, pre accident. So now we made the family room a true meaning of a FAMILY ROOM. But FINALLY! We can sleep in the same bedroom as husband and wife! We just don’t have a house that can entertain at this point. But, our family is the most important.

This all can add on so much stress along with trying to deal with finances, but I know that God is 2 steps in front of us leading us down this path through the valley. We just need to cling onto his robe and keep on believing that he will provide and keep us safe and strong through this!

Celebration

1 Year 2 months

Today, we are taking Santana and the boys to Chuck E. Cheese for Santana’s 3rd Birthday! His birthday is not till Monday, but we are going to take him for some fun today! It seems to be the place we ALWAYS go when my mom comes into town.

Not much else going on. We went to dinner for Craig’s 50th birthday last night…an early celebration, but we wouldn’t see him otherwise.

Oh, I finished up for signing up for his preschool. I was laughing when it said he will get a whole 60 minutes of O.T. … A MONTH. Oh well, the social part will be ok.

And speech, he was a stinker again! He did GREAT at first, then locked his jaw and fell asleep! What can we say, but I don’t think he was feeling well. So we also took him to his Pediatrician and she is referring us to his pulmonary doctor to make sure he is not aspirating. So they will be doing an Upper GI. Also, he has dropped 4 pounds in the last month. 6 pounds all together. He used to be at 36 but is down to 30. So it is REALLY important that we get those muscles back.

Pray for him to get over this AWEFUL cough and junk!

As I was changing the date, I realized that we are 14 months out from the accident. But the good thing, we are celebrating his LIFE, his BIRTH today. In fact, we need to start celebrating it every December 16th also!

Heart Wrenching

1 Year 1 month 29 days

I can’t explain it. I am so frustrated. Santana’s muscle tone has decreased to almost nothing. His massage therapist noticed a HUGE difference in just 2 weeks. I am not sure what to think. HIs Shoulder is sticking out all weird due to tight muscles from his spine pulling. I do not want his body to fail him. Especially when he has been MUCH more alert.

Tomorrow I am going to take him to the doctor because he is still coughing so much junk and this has been going on for a WHILE. He has vomited a total of 5 times. So not fun to deal with!

Not that I want to give Hyperbarics any credit, because we know that God is the TRUE miracle worker, but I have seen a difference for the worst since we haven’t been going these past almost 2 months. We need to get some money raised up so we can get back into that.

I just get frustrated. I don’t get it. It is like his body is fading away right before our eyes. I don’t know what to think. But I am going to keep believing for complete healing if that is God’s will.