Pray for our Family

Pray for our Family
August 30th, 2007 – Day 254

If ever our family is in need of prayer, it is now! After Saturday, we are living by faith and James is taking the FMLA leave for 3-4 months. Which yes we will have insurance, but no we will not have a pay check. But we are believing God will provide. James being home is going to help me out so much! I am exhausted being about 31 weeks. The heat is getting to me. I don’t think people understand why we are doing this and they won’t unless they are in our shoes. But pregnant or not, this is hard emotionally and physically. It is VERY wearing. James is so awesome to do this. He loves his boys and family more than anything and there are many husbands out there that are not man enough to put their family first so I must say that I am the luckiest wife in the world!

Santana is starting to get better with less choking spells like he had with his ear infection. His heart rate is coming down 10+ degrees awake and asleep. Which is GREAT because he is too high for normal as it is. He is making A TON of babble sounds with multiple sounds in one “word”. His eye contact is getting much better. Now I just wonder about his feet. I may just push the heel cord surgery and get them straightened up even though the doctor said he would just push out of them anyway. Well, I disagree with that. He does not have tone like he did. The reason his feet are like that is from drop foot, not because he is pushing them. I think if they would fix them they would be fine and we can get him in. Who knows?!

Please remember to keep us in prayer that we get through these next few months and we don’t get to sick of our stash of Mac and Cheese and Ramen Noodles. I have faith GOD WILL PROVIDE! We have no fear! And Praise God for all he is doing in Santana’s life!

A Rushed Update…

Day 251

I am tired, but I thought I could give a quick update. We did not make it to the sleep study. Santana had diarrhea in the worst way from his anti-biotic that I was not going to deal with changing their bedding with him hooked up to a machine with wires everywhere. So NEXT Sunday we will be doing that. I have not heard back to when we are going to put his tubes in. But I will let you know.

The Spasticity clinic called and set up an appointment for next Wednesday for a baclofen pump consultation. I told the nurse that I will go, but I will not promise that I will go through with the pump. I know for a fact I will not. Not yet anyway. But it will be interesting because first we see an OT and PT and then go to that appointment with a team including Neurology. So I am anxious and scared to what they will say…like I should expect them to say anything positive, so I just HAVE to keep my ground. But this is when I REALLY NEED YOUR PRAYERS! He has been REALLY stiff the last few days. If they see him like he is, there is no doubt they will push me into the pump. Pray that we see his ankles and knees bend again like they have the last 3 or 4 weeks! If we need prayer, we REALLY need it now!

I will go into more detail later of some other things going on. But I am so tired and I have 6 meds to draw up tonight (antibiotic and a supplement to calm the tummy has been added for the rest of the week). My tummy has been bouncing around with the little one in there and have been experiencing some tight and sharp pain so it is time for me to lay down since Santana’s heart rate is 78-85 which means he is OUT COLD! So I need rest. Love ya all!

Update…Sorry So long…

Day 249

Sorry to have disappeared there for a while. I have not been feeling well at all. Santana hasn’t either. In fact, I took him back into the doctor yesterday to find out he has another ear infection. Do you know what that means? Tubes. Yup, but it is not a big deal to me because Jett had that done and it was so quick. With him, he has to stay overnight at a hospital, most likely St. Joe’s. YAY! Just so he can be monitored. Dr. Sudha did not think that outpatient would be best for him. I will let you know when that will take place.

Sunday night, Santana has to go in for another sleep study. I guess the center didn’t follow orders the first time so they are redoing it. No big deal, but PRAY they don’t send him home on a bi-pap machine. Especially now that he is rolling over in his sleep. This time I have pictures to prove it! 3 nights ago I wish there was a camera on my face because I know I shook my head in shock with my mouth wide open when I got up to check on him around 2 in the morning. While he was laying on his right side, he was all the way on his stomach (his favorite sleeping position since an infant…I know…I don’t follow orders well of not doing that) and his head was all the way to the right of the bed (he was facing to the left of the bed. I was going to fix him but he was sleeping so good that I just left him. Then at 5 I got up to check on him and he was still on his stomach but his head was back to the left. I wish I had a before picture of how he was laying. Actually, any of the pictures that have been posted of him laying is ALWAYS how we lay him down. It was just awesome!

Thursday I got an ultrasound. A 3D/4D ultrasound. Some friends from the church had offered me a baby shower and I thought if it was going to be a girl, I want to go all out and go PINK! So, it looks like we are going blue and James almost has his basketball team. When you see a face like this (which is a total cross between Jett and Santana) you can’t help but to be excited, but I am not going to lie, I really thought this was going to be a girl and had all girl bedroom stuff picked out online. I was a bit disappointed and could NOT believe my mother instinct was that off. But I am ok. I am going to FOREVER be out numbered in this house. But the good thing is… I only have 2 more months from today! Yahoo!

I want to thank the girls at Arizona Hair Co. again. They just want to keep helping. A few of the girls that work there go to Basha High School and they asked if they could take Santana’s big sign to their school for a pep-rally they were having. I don’t know much of the details yet, but they had Team Santana shirts made that they wore and they took what was left of our bracelets and tried to raise awareness. It was just awesome! I wish I could have been there. I will fill you in with more detail as soon as I find out! Thanks girls and GO BASHA BEARS!

Speaking of shirts. I found a place that I may be able to print them at a decent price. So now I have to figure out how many to order and maybe set up a store on here for more fundraisers and to get the word out! I will let you know as soon as I get it squared away!

I am still fighting off sinus junk and have not been feeling real well lately. I feel very weak frequently but I just ignore it and try to do my best at fulfilling my duties at a wife, mother, nurse, resistor therapist, transport driver, therapist, friend, daughter, and it goes on. I don’t have time to catch up and get over this crud. I know it is just going around because Jett has had an ear infection, Santana now has an ear infection (I think he has sinus issues too) and many other people too. So lets just pray I can get some strength! As if the emotional side is not wearing enough, I have to fight this too?!

Keep praying for the little guy! Don’t give up because you WILL see a full miracle on here someday!

Email Change!!!!

Day 244

Sadly, there are people out in the cyber world that have nothing better to do then send out these bots to collect email addresses so they can sell them and the site owner can open up dirty junk mail all day long. So, Praying@prayforsantna.org no longer exists. Please click on the email link to email me. Apparently, if it is written out like it was on the contact page, they can find the email and snag it up.

I made it to the doctor today to find out I have a sinus infection. At least now I can take the anti-biotic and get it over with. James is off on Mondays so he took over the appointments for Santana. Tomorrow I have to mount up and get back in the swing of things. Santana did good today for his appointments. We got to lay and cuddle after his nurse left. That is the best feeling in the world.

I would rather be sleeping right now, but I was looking through an old folder of pictures and just lost all emotion when I stumbled across some pictures of Jett’s birthday party, my birthday party, and my nieces birthday party last year. Santana’s face, his smile just makes you melt. I could not help but to say “WHY?!” out loud. Not that I was asking why this had to happen to Santana and my family, but “WHY CAN’T HE BE RESTORED TO THAT?!” I know it is possible in the realm of the power of God, so when. When is what I should ask. When will I see this miracle? When will I get what I asked and begged for? What else will it take?

I know he is already a miracle. He should not be alive after 45 minutes of oxygen and 30 minutes cardiac arrest…. DEAD. By the books, HE SHOULD NOT BE ALIVE! But by God’s grace, he is here. For some reason, he is here. He is a miracle. But I know God is not a half way God and I know he can and will do better than this.

Whew, I am sorry. I was doing REALLY well, but those pictures set me off. I miss the little booger! Just to see his smile. Really, that is all I want at this point. It hurts to sit and make all these silly faces and tickle him when all I get is a buggy eyed stare back. I can almost see it once in a while. But almost doesn’t count. I want to see his eyes light up and his teeth shine!

I will post those pictures later. I need to go lay down. OH! But before I do! I have to say thank you to the girls at Arizona Hair Co. They raised around $1,600. That just amazed me! I would never have imagined! For those who are reading that went there and got your hair cut, thank you very much! This means so much to us as we are getting ready to lay out another 5 grand for another round of oxygen treatments. This helps us so much! God Bless all those who participated!

Fundraiser Flier

No Pickels here…just catch-up

Day 242

It has been a crazy week. I have been meaning to blog, but Thursday night I came down with something and have been fighting it since. I felt like I had morning sickness all over again on Friday. But there is nothing I could do except take care of my duties as a mother and caregiver to Santana and I hit his 3 appointments. My dad and Lorili came over last night to spend the night, so we (James and I) could go out (FINALLY!!!) but I felt so horrible. But we went to dinner anyway and I got some soup to calm the tummy. It was so nice to get out with just him! We missed out boys, but it is nice to have a conversation with NO interruptions! We rented some movies and headed upstairs, just the 2 of us. Although I felt worst than I have in a LONG time, it was still the best night I have had in a while.

Santana has been a bit junky this week…but so has our good ole Phoenix air. He has been pretty vocal and responsive in his own way too. The best thing with him this week was when my sister-in-law drove to him and his nurse to his appointments and when I said bye and shut the car door, he cried a big cry. As soon as I opened the door and said it was going to be okay, he stopped. This just shows that he is VERY aware of what is going on around him!

I didn’t get any rest while they were gone because 1. I had my OB appointment, but 2. I had to finish the Cuts for a Cause flyer and get them printed so we could get them out. Weds. night, James and a friend of ours went and posted some on all the mailboxes and anywhere that looked like people would see it. In fact, as I write this, the girls at Arizona Hair Co. are working hard and helping us raise money for more therapies! I can not thank them enough! This is so awesome that they all agreed to do this!

Lori at the Hyperbaric Oxygen Treatments of Arizona wanted to help out so her and Dr. Reach (owner) gave us a gift certificate for 2 sessions. By the way, that is $300 worth. I could not thank them enough! This is there way of helping out with the benefit this weekend and I totally appreciate that they would do this! They have been so good for us. If I have an appointment at St. Joe’s and I don’t want to wait around 2 or so hours for his O2 treatments, she will open a session for him on her lunch hour. She is just amazing over there! We have been doing 1.5 hour sessions because we are pushing through to hit 120 sessions before the baby is born. We are at 60 or 70 now. But Lori will make a way for us.

The vibes are still doing GREAT on Santana. His legs are so much looser and his ankles are getting more bend too. Between the energy from that and the oxygen, they are loosening him up and he is looking amazing. He is amazing! God is amazing! We are in the 8th month since the accident and every week God shows us how amazing he is and gives us something new to praise him about.

So, are you ready for Jett’s phrase of the week? Oh first! I forgot to tell you all about Jett and the wishing well at his Dr. office. He wanted a coin so I gave him 5 pennies. The first one was, "I wish Santana could get all better." Then second was, "I wish Santana could play with me." The third was, "I wish Santana could grow really tall.", the fourth was, "I wish Santana could drive the escalade (power wheel)." and the last one was a mix of all of them and then closed with "THANK YOU JESUS, AMEN!!!!" He was not selfish one bit and it amazed me! Ok ok….so then yesterday, a therapist and the nurse and I were in the living room with Santana and Jett says, "I wish I can trade brains with Santana." To make sure I knew that he knew what he was talking about, I asked, "why?" He goes on to say, "so he can get up and play and run around." So to make sure I knew that he knew what trading was, I asked, "Then what would happen to you?" and he says as simply as can be, "I can be a baby for a while!" If the nurse and therapist were not there, I would have bursted into tears. He is so selfless that I am amazed. There is nothing he wants more than for his baby brother to get better.

I did put a call into a counselor for him because the other day there was like 5 police patrolling our neighborhood when I picked him up from school. Then on the way to the store there was a fire truck leaving the station that is in our area and Jett went into a panic. He was scared and he got worried that something happened to Santana. I assured him that he was home with his nurse and He was in his bed before I left to pick him up from school. Then he says, "maybe someone else drowned." and was worried for them. Somehow he needs to get the association of what happened on December 16th and cops out of his mind. He just went into a hyperventilation panic. But then was fine after we talked about it.

Well, I am still not feeling well, and can hardly move out of position, so I should get some rest. Pray that the fundraiser goes over well! Hopefully this will bring awareness of what can happen to a child if eyes are taken off for a second. It is life changing for the child, the parents, the siblings, and all extended family. I don’t know what it is going to take for people to understand this, but a fence around the pool is worth it but NOTHING will protect your child like your own eyeballs.

Cuts for a Cause!

Day 238

The Arizona Hair Company on Riggs Road and Gilbert are holding a fundraiser for Santana THIS weekend (Saturday and Sunday)! All tips to those beautiful ladies will be donated to the Pray for Santana Donation Account. This will help with all therapies that is not covered by insurance. After 20 more sessions of the Hyperbaric Oxygen Chamber, we will be putting out another 5 grand for the next 40 sessions. Which will bring us to 120 sessions…and yes, we are seeing a difference! So please, help us out! And thank you to all the girls that are making this possible over at Arizona Hair Company. Giving your tips to help our son means so much to us and may blessings be upon your lives! Make an appointment today! (480) 883-6200

I took the boys to the doctor yesterday, originally just for Santana, but Jett came home raspy from school. Santana had a fever that climbed pretty fast and took about an hour to break after Motrin, cold cloths, and a cold bath. Well, Thank goodness I asked them to see Jett with her, because Santana was clear, and Jett had an ear infection. GO FIGURE. I rather be safe than sorry. I just love that office. I have never been to an office where the staff is SUPER friendly. Usually getting past the front desk can be a cold journey, but they are all smiles. I LOVE GATEWAY PEDIATRICS AND DR. SUDHA!

Thanks for the prayers and support. I really appreciate the kind letters that offset my bad/stressful days! Keep focusing on praying for his mouth, vocal skills, and swallowing! I just want to see him smile! Did I mention he does have this Elvis lip going on? It is so cute. I take that as a reactive smile! But I want to see how he was prior! Big Chipmunk Cheek Smile! God Bless!

It is after 1 am…just a quick one.

Day 237

Mom and Craig have been here since Friday so I have been a little tied up. Saturday was Jetts birthday party and it was a blast! The best thing that happened there was when my brother Chad came from behind Santana and gave him a zerburt (spelling…) on the cheek. Not only did Santana react to it, but he turned his whole head to look up at Chad who was standing behind him. It was the most AWESOME moment in a long time. I thought FOR SURE he was going to say something to him or smile or something. But that was enough. He is so awesome! He had tears roll down his cheek as he heard all the kids jumping around on the big inflatables. He tried to sleep it off for the most part. But boy was he responsive when he was awake and alert.

That is enough excitement for the weekend. I am dragging and should try to go to sleep. I have been getting lots of cramps, so I am not sure what is going on there. I have had C-Sections 10 days or earlier before my due date so I would not know what labor was if it hit me. I am sure they are just braxton hicks, but I don’t ever remember feeling them this intense. But I guess stress alone can do that.

Oh, Santana is awake. I better go lay with him for a bit before I go to bed. I will get a slideshow for the party up as soon as I can.

Happy Birthday Jett Lee!

Happy Birthday Jett Lee!
August 9th, 2007 – Day 233

5 years ago, we found out that Jett was going to be a stubborn his way kind of guy. We went to the hospital to try and turn him out of the breeched position. He would not budge so instead of waiting until the 26th, which was his due date, they decided to take him by c-section right then. Unexpected, but no more waiting! Now it amazes me that he goes to all day school and can hold wonderful conversations. It amazes me how fast these kids grow up. James and I took cupcakes and juice to Jett’s class today. It was so cute to see all the kids and how he interacts with them all. I still can not believe he is as outgoing as he is. Prior to the accident on December 16th, 2006, he was very shy and refused to speak up to anyone. I am thankful he didn’t shy off more, which you would think this situation would have made him be more timid, but no…sometimes we can’t get him to stop talking or showing off.

I can’t help but to wonder what Santana would be doing if life was "normal". I can tell you one thing, he is so big! He is getting heavy! It is getting hard to even hold him due to my baby belly. I can hardly breathe when he is laying across me. He has got to be around 35 lbs. now. But realize that it is "dead" weight!

Not last night, but the night before he gave me a scare at 2am. He set his pulsox off and this time his Oxygen was at 84% and going down and his heart rate was 148 bpm and going up. He had rolled onto his stomach and his face was flat into the mattress. I flipped him over and he went back to normal. But he was still sleeping. I kept him on his back and propped him up. His alarm going off is the worst feeling in the world. NOT FUN to wake up to.

Rest may be coming my way! My sister-in-law went with us on our route to appointments on Weds. so she knows where all his appointments are. She may drive on Weds. and Fri. so I can get some rest. Honestly, it was James idea and I am sorry, but I don’t like it. This is my son, my responsibility. But as everyone says, you need the help, so take it when it is offered! I can tell you now that I won’t rest well because I will be worried about him. But, there is nothing I can say except I do appreciate it.

Today, Santana’s arms (both arms) were moving around a lot! James stayed home to do his appointments today. I missed the little booger while he was gone. His legs were loose, but he is a bit stiff right now, as I type. Maybe he just wants his mom to come hold him.

It is after 1 am… just a quick one.

Oh Mercy Me

Day 231

As always, Tuesdays are absolutely crazy due to therapies. We sadly did not go back for a second session of vibes today…or yesterday. I was too sleepy and I knew our massage therapist wanted to get over to our house to work on him earlier. We are getting everything done early tomorrow then I am going to go get my hair done so I don’t look any more pathetic than I do. Trust me…I just look tired and I think my roots are not helping. Not only am I getting out for a bit for myself, but one of my friends does hair so it will be good to see her.

Santana is out cold right now, his massage did him good. He hit a 99.6 temp today a few times so I am keeping an eye on him. He just got off of a 10 day antibiotic. I think I just might say “put the tubes in!” I have enough appointments going on to squeeze all these check ups in. Speaking of appointments, I still want to do some out patient therapy for an extra push, but we have to get this schedule down first.

Speaking of therapies, today, they had him on his knees and they stood him up. Of course not flat footed, but this is what will help him do so by bearing that weight down. We want to look into a stander for him. He needs to be doing this everyday.

I don’t have much more to report, but I do want to share 2 other songs that have really touched me at this point. As you have seen in previous months, music lyrics mean so much to me. Both of these songs are from MercyMe. The first one is Hold Fast. Just read it and you will know exactly why I feel this is for me!

Hold Fast
MercyMe

To everyone who’s hurting
To those who’ve had enough
To all the undeserving
That should cover all of us
Please do not let go
I promise there is hope

Hold fast
Help is on the way
Hold fast
He’s come to save the day
What I’ve learned in my life
One thing greater than my strife
Is His grasp
So hold fast

Will this season ever pass?
Can we stop this ride?
Will we see the sun at last?
Or could this be our lot in life?
Please do not let go
I promise you there’s hope

You may think you’re all alone
And there’s no way that anyone could know
What you’re going through
But if you only hear one thing
Just understand that we are all the same
Searching for the truth
The truth of what we’re soon to face
Unless someone comes to take our place
Is there anyone?
All we want is to be free
Free from our captivity, Lord

Here it comes fast
Help is on the way
Hold fast
He’s come to save the day
What I’ve learned in my life
One thing stronger than my strife
Is Your grasp
So hold fast
Help is on the way
So hold fast
He’s come to safe the day
What I’ve learned in my life
One thing greater than my strife
Is Your grasp
To hold fast

See what I mean…those lyrics were so me! Trust me, I ask those questions everyday! And this next song is for those who look at me in amazement that I can praise God through this when they may think God turned his back on me. I know that is not the truth and I know in my heart the more I believe that God’s healing power is working on Santana, the more he will show improvement! God is good!

Bring The Rain
MercyMe

I can count a million times
People asking me how I
Can praise You with all that
I’ve gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You

Maybe since my life was changed
Long before these rainy days
It’s never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings
You glory And I know there’ll
be days When this life brings me pain
But if that’s what it takes to
praise You Jesus, bring the rain

I am yours regardless of the clouds that may
loom above because you are much greater than
my pain you who made a way for me suffering
your destiny so tell me whats a little rain

[1st Chorus]

Holy, holy, holy
Holy, holy, holy
is the lord God almighty
is the lord God almighty
I’m forever singing