Looking good today!

Looking good today!
July 29th, 2007 – Day 222

Santana is having an awesome day filled with being ALERT! Today in church he was so cute! He kept making noises and MANY different facial expressions. He also had 3 big, loud, wet coughs and I started to panic thinking that I would have to take him out to suction him, but he swallowed it every time. So tell me this…how can a child get denied speech therapy when he is swallowing on his own and making all sorts of expressions and sounds? Love the state system!

So, I should have blogged out of excitement on this one yesterday, but sometimes I get sick of the computer. Now I am going to tell you. Santana was taking a snooze yesterday, as was I on the bed in his room, and we woke up about the same time. I was laying there trying to really wake up, but then I looked at Santana in amazement because as he lay completely on his right side, he started twisting his head to the left which was making his head bury into his bed. I jumped up to fix him because I thought he was having a spastic movement and the next thing you know he was on his stomach and his head was flipped completely to the right! I was in shock! I fixed him back up and went to the bathroom and he was back in that position! He rolled twice! He is just doing so awesome!

We napped today together while Jett spent time with James in the pool. I love cuddling with Santana! I get my best snooze when he or Jett is in my arms. Santana was so cute when he was waking up. He kept doing these big yawns that were so cute and stretch his little body. He is a doll! I wish you could see him now, he is in the old chair eating (by tube) and his legs are hanging at ALMOST SO CLOSE, a 45 degree angle. Oh, and speaking of his wheelchair, the new one, what a joke that they finally send it and he has already outgrown his first fitting. He looks AWFUL in it. Even his Neuro Rehab Dr. couldn’t believe that we waited this long and this what we got! What a joke. But what do you expect when insurance is involved?!

This week, we may try to get Santana in for a few hour and a half sessions in the oxygen chamber. I want to keep moving through this because for sure I am seeing a difference. I want to show these traditional medical doctors that THERE ARE IMPROVEMENTS! They don’t understand, they won’t understand…but that is because man will never understand what God is doing! It is not for us to understand, but just to believe!

I thought this would be a short one…

Day 220

Today I woke up in excruciating pain and could hardly get off the bed or even roll over. James called in because he did not want me taking Santana to all his appointments in the shape I was in. I am not sure I would have even been able to get Jett to school without James home. Yeah, it was that bad. It is all part of being pregnant and carrying that extra weight. I got an adjustment at Dr. Yeager’s today (see add on right). It helped TREMENDOUSLY! But then as I was rolling myself out of the car at my Dr. appointment, I felt the snap again. My pelvic is so out. My WONDERFUL OB doctor that we just love, wants me to take it easy and wrote a script for more rest and less lifting (Santana is 32 lbs HEAVY). We are just trying to figure out all of these appointments we go to and what not.

Santana is doing ok. He has been pretty junky this week and today was running low grade fevers so James took him to his Dr. at Gateway Pediatrics and she wrote a script for an antibiotic so we don’t have to do the weekend with the chance it gets worst. His ear was slightly red but nothing compared to what it has been. At least we don’t have to stress about it this weekend. His heart rate is higher than what it should be. Normally when he is sleeping it is around 90-100 sometimes 80’s. But now he is out and it is at 125 which is better than the 137 it was at 10 minutes ago.

The last 2 days he muscle tested for 6 minutes in with the vibe machine. Yesterday, he came out of the room with both knees completely down! I was shocked! He is doing great with that. MUCH more flexible! WE DON’T NEED NO STINKING BACLOFEN PUMP! We will prove them wrong. I know everyone in the traditional medical field (brainwashed by the FDA) is so not liking my experiements…that are working. But oh well. I know what is working…WITHOUT SURGERIES!

Jett had a great first week of school and only cut holes in 2 shirts with scissors. He was grounded for the day when we saw the second one. I am sure he will not be doing that again. But all in all…he is excited and it is fun when he comes home and talks about what he learned and then spells the color R.E.D. for me. Yay!

Today was a sad day in the media world here in Arizona. Because of some bonehead that stole a car and was hijacking others to escape police, 2 helicopters from News Channel 3 and News Channel 15 (ABC) collided in mid-air and we lost 4 respected news cast members, a pilot and photographer from both stations. Both these channels did THE absolute best on Santana’s story of recovery and I ached for the news teams. But what really got to me? Jett saw the yellow tape behind a news reporter and asked, “Will they put that yellow tape around our house if Santana got better and then fell in the pool again?” I of course said no way will that EVER be around our house and WHEN Santana gets better, we will teach him how to swim. He went off to play and then curled back on the couch with the cat. He was really quiet that I thought he fell asleep. The next reporter had fire trucks behind them. It is obvious in the voices that what happened was not a good thing. But when I turned to see that Jett was glued on the TV with red watery eyes, I couldn’t help but just hold him and want to cry with him. I asked him what was wrong because I know he didn’t understand what the smoke on the ground was from. He pointed to the fire trucks on the screen without saying a word. He was obviously choked up. I asked him if that makes him sad and he barely got out a “yeah” then I asked if it made him think of something, then sadly he responded, “Santana” I cried and held him and told him it will be alright. He is obviously hurt still and having flash backs. He understands SO MUCH MORE than we could imagine. It broke my heart. I don’t want him to be reminded of that AWFUL day. But what can I do about it?

It has been a rough couple of days. I am praying that I even make it out of the next 3 months of pregnancy and I don’t even want to know what my future will then hold. All I know is that things are going good with Santana, but is this it? It is always hard to go to St. Joe’s for his appointments because I see other kids that look like they had some kind of TBI also and I can’t help but to wonder if this is it. Will that be what Santana will be like in 10 years? How can I possibly handle this? Then I remember that God didn’t take me here to leave me in a panic. But I will tell you it is not easy.

Oh, and the neurology appointment was cancelled and not rescheduled for another month or 2. That is okay. Santana will have more time to show them whose boss! He can get that brain going a little more by then! There is a reason they cancelled and I think it is because God wanted them to see more in Santana.

Whew, I am exhausted and tired. But first I want to clarify that it was my own fault I got the message I got that was rather blunt but I don’t need to be reminded that someone would point out the negative when it has been a couple of days filled with negativity. I am moving on so lets all just move on. It was my mistake and if you missed it, I am sorry, I am not going to explain myself or the video any more. But…I do know their are a lot more people for me than against me.

I am going to bed. Hopefully I can find a comfy spot since I feel like I am going to just tear in half like a wish bone. But I know God has his hands on the baby and will protect us.

This and That

Day 219

Today we head back up to St. Joes for Neurology. Yippie! (sarcasim) Santana had an AWESOME night. He fell asleep after 8 pm sometime and is still sleeping at 10 till 8 in the morning! I got to wake up him up in a few to take Jett to school, whom wants to be dropped off and not walked up…boo hoo. He is loving school. Lets just hope he doesn’t cut anymore shirts with scissors.

Last night when I was showing a friend Santana’s feet, I noticed that his heel cords have major break down like a knife slit them both. I am sure it is because the skin was grown together and now that we are getting movement in them, it ripped apart. Yesterday in the O2 chamber, he cried for like 5 minutes straight. It was so bitter sweet! When I noticed the breakdown last night I called Lorili to see what part of his legs she worked on for him to cry and indeed it was his feet. So they may have split then. Good thing he is getting treatments in the O2 chamber, they will hear MUCH faster! I better get some Vibed water to put on it too.

Anyway, just another day of appointments. Yesterday we made it back JUST IN TIME to pick Jett up. But, we did not get to do the second vibe session. But I must thank Lori at HBOT of Arizona for opening a session for Santana on her lunch hour so we did not have a super long wait till the 2 o clock session since we were up there anyway. OH! I GOTTA GO GET JETT TO SCHOOOL!

FYI!

Day 218

Jetts school is at the end of the street…a neighborhood street…not a main road. It was too hot to walk Santana. Yeah…we sardined it in the car. The airbags were off. Sorry to offend you all. I will no longer post any videos because people always find fault in all pictures or videos posted.

As for Santana, not a good appointment. Really…don’t feel like talking about it. Tomorrow, yeah…I am sure it will be that much better. We all know how I LOVE NEUROLOGISTS and their frame of thought!

Must not be needed…

Must not be needed…
July 25th, 2007 – Day 218

Jett is loving school! The second day he told me he just wants me to drop him off instead of walking him up. (*tear *tear) But it makes it a lot easier to see him go when he is excited! Yesterday he came home with holes in his shirt. Well, lets just say he was a hazard to himself. I guess I should have taught him to use scissors before sending him to school. All I could really do is laugh about it.

Santana is doing well, but has a lot of junk this week. In fact, just as I was pulling out with Jett this morning, I had to pull over because he was choking. It is hard to get that stuff up with it is slimy like it is this week. My poor baby. His legs had GREAT bend in them last night. I kept them bent with all sorts of pillows.

Today is Neuro Rehab. Pray that Good things are said and good ideas to help those feet are presented. NO SURGERIES! I really want them to do serial casting on his feet because I believe they will move. I want those feet to work so we can start standing him and doing weight bearing.

My first baby growing up!

Day 216

As you know, my mom was here from L. A. and it has been a busy week of appointments. I felt so bad as they pulled away today because I maybe saw them a whole 36 hours when they were here for 7 days. But it was way too tough with all of Santana’s appointments. We have 3 outpatient appointments…as of now …a day and need to add another hour appointment of out patient appointments with physical therapy. Since we have been adding more, Santana has been doing amazing things as you have read in the past 2 entries! His legs continue to bend well and now his right knee cap is showing…this is the one we could barely get bent. So while tiring, all these appointments are SO rewarding. But I could not have done these without James. His work is so good to him as they let him come help with these appointments as I can not do the Vibes or O2 treatments being pregnant and all. But with his help and a few days off, I think he is ready to go back to work not realizing that his is an 8 hour non-stop job of running Santana all over town not to mention meds, feeding, and suctioning in between.

Today is one of the hardest days I have had in a while. I was doing GREAT because Santana’s improvements are so encouraging. But today is the day we watched Jett go through his classroom doors with a backpack bigger than him. He was doing great and super excited, but when it came for this kids to line up and go to there classroom, many of the kindergartners started crying and Jett went right along with them. I then bursted into tears. But, after they walked through the doors to the school, we realized that all the other parents walked their kids in so we followed behind to peek in on Jett. He was so cute putting his bag down and getting into his chair. He then saw us and just waved. He was excited when he got his own pencils and crayons from the teacher. I felt more relieved to leave when he was okay. But then at lunch time I could not help but wonder if he could open his chips and what not by his self. I know, I am just a little worried. But now in about an hour we will be leaving to get him. It went by really fast!

But I got a double dose of sadness today, my mom just left about a half hour ago. It made my eyes well up with tears again. James and I were so busy with appointments and going around Jett’s schedule that I don’t feel we spent the quality time we could have. We did get to take the boys to Chuck E. Cheese and that was a lot of fun. Santana was intrigued by the lights on the skee ball machine. You could really see it in his eyes that he wanted to run around with the kids too. It breaks my heart.

Speaking of, that is another thing that makes this day hard. I always said that when Jett goes to school, I am going to spend lots of quality time with just Santana. We were going to go to the mall to play, to the parks, to McDonalds…anything. Anything to spend time and get to know just Santana without Jett taking all his attention. But that quality time is instead spent going to doctor appointments and therapies. I don’t get to push him on the swings or catch him at the bottom of the slide. Not with just him and I. I still believe he will be getting better to his full potential, but by then, he will have the baby to share with. It is just hard. I can’t describe it. I feel numb right now.

Pray for us as we try to find the best schedule for Santana so we can be there for Jett when he is done with School. I am so stressed trying to fit everything in a time slot. It is definitely like a puzzle. I rather work a full time job than do what we have to do. It is so exhausting! You would never have an idea unless you were in my shoes. Pray we all stay healthy and it all works out.

Can’t Sleep In…

Day 211

The thought of getting up at 7 am made me dread this day. But I have been awake since 5 am and was awoken by Santana crying. He was fine. I am sure he just wanted to make sure he was not alone. I tried to go back to sleep before getting ready for his 8:30 appointment…but I can’t. I am just too excited about his improvements! He is such a fighter!

Do you remember when I wrote a few weeks ago that I was just crying and begging God to either heal him completely or take him away to a place he does not have to endure the pain? Well, I truly feel this is what is being said to me, “I show you these things so you will wait upon me with patience.” These improvements here and there are Gods way of showing us that he is still here and that he is not done. Which is a relief to me. It would be hard to let my Santana Banana go. So I know for SURE…he is not going anywhere! At least not from this earth!

I just can’t wait for this day to start! I can’t wait to see what’s next! This is the most exciting thing I have ever gone through! After yesterday, I know life can only get better. Maybe busier, but definitely better!

6 Appointments Today and Santana is Improving!

Day 210

Today was absolutely crazy! Santana had 6 appointments! Lucky 3 of them were in-home. But still allot for Santana. So, We started with an 8:30 am appointment at Dr. Yeager’s for the Vibe Machine. Then we rushed back home for a 9:15 am appointment with his physical therapist, then at 10:00 his Occupational therapist came till 11:00 am. She left just in time to hook him up to his hour feed which brought us to the noon hour to where we had to leave to go to his 12:30 Vibe appointment. From there we drove up to North Phoenix for his Oxygen Treatment. Then we came home for a 6:30 massage appointment. What a great way to end his exhausting day!

About the Vibes. I don’t get it. But what I do get, after 2 days and 4 treatments, I am seeing VAST improvements. You should see his legs tonight! They are bent! Normally they are straight as a board! Even when he is awake, I can get them just to flop over! Even his “bad” right leg! You can also see his knee caps too! AND! When Carole was massaging him on the head, he was bending his knee up a little and bringing his footsies up about 10 degrees! YAHOO! It was absolutely CRAZY! Not to mention his little kitty was laying by his feet so he could have been trying to get him! I am so stinking excited! He was not like this this morning. That extra treatment did something! This is a total God thing! He brought us this new therapy…No doubt! If it wasn’t God Given, we would have found it on our own and had spent money to do it. But no, It was brought to us and given to us as an act of kindness to help our family out. NEVER did I expect to see the change I have seen in the last 2 days! AHHHHHHH! I just feel so good! We are doing this twice a day. HE IS COMING!

I think at this point he needs GOOD physical therapy 3-5 times a week. I think this bending of the legs and holding it for an hour therapy is a joke for him. Santana needs more. I am looking into outpatient to do between all of his other treatments. The Vibes need to be spaced out for 4 hours. So we have plenty of time to kill.

I felt bad because my mom and Craig came into town with Kimberly (from the dream center) and I said Hi and Bye because I was off for 2 more treatments! But they hung out with Jett, which was good because he does not like going to any of Santana’s appointments. It’s ok…he starts school on Monday. He is so excited about that!

I am tired! I gotta go to bed. 3 more outpatient appointments tomorrow. I am sure you will read about more good news tomorrow! Just praise God for him being so loose! Oh…and head control is getting a tiny bit better! YEAH! I am just so excited right now! PRAISE GOD!

New Therapy… We Are EXCITED!

Day 209

So, here is the new and exciting thing I have not talked about but now that I know more I am ready to do so! James’ chiropractor got this machine that is new to his office called the Vibe Machine. You can read about it at www.vibemachine.com. I am excited about this because Dr. Yeager and his staff is excited about this. Basically they did a muscle test to find out how long he should go for. If you know anything about this I am glad because I am not sure how to explain it. I will figure that out later. However through this muscle test, they found that Santana can go in front of the Vibe Machine for 1 minute. James went with him because I could not do so being pregnant and all. I am really not sure the best way to explain it but from the other side of the wall, it is a horrible sound of electricity. Now, Santana can not feel anything. He is not hurt or even touched by this machine at all. He just sits by it. Normally others can sit around it too, but they want all the energy to go to Santana. They would like to see him 2 times a day for this short and quick treatment. I am ALL for that! Right when he was done, his head fell forward, but he was able to bring it back on his own! That is amazing in itself! And now, he was in a deep, and I mean deep sleep like he does in the evenings for about an hour. I am just so excited to see the effects this will have!

I need to thank Dr. Yeager and all his staff at Yeager Chiropractic and Wellness center on Alma School Road in Chandler. Please click his link to the right for more information! Many, including myself, would be a bit skeptical about this and wonder if it is just a money maker, but they really think this will help Santana and are doing this as a service to help us out! Praise God for good, caring, people like this!

I AM SO EXCITED! ONE MORE THING TO ADD TO MY DAY! YAHOO!

Just a Quick Update!

Day 208

The sleep study went well. So well that they didn’t find anything. They didn’t even have to put on the c-pap to help him breathe. That is great. It is one less machine that we will have to deal with! He…the little stinker…did GREAT that night! He slept all night and they even put him on his back and he was pretty clear until like 3:30 or 4:00 but I did not have to suction him…thank goodness…I couldn’t figure out how to get the rail down.

So James got there about 6:30 am so I could take a shower and we could head of to the HBOT (Hyperbaric Oxygen Treatment). Santana did well in there with James and he was pretty focused on a movie that was playing in there. He did well looking around at people also.

Santana slept all night for daddy last night! Let’s hope he does the same for me tonight! He must be going through another growth spurt. He slept for about 3 or 4 hours today also. He is a sleepy head.

Oh, his Aunt Winnie was holding him tonight and the boys were all out swimming. We were chatting and all of the sudden loud and clear, Santana says, "blah blah blah blah" Well…not really those words, it was just a babble of some sort that was about 4 to 5 words long. It was incredible! I would love to know what he was trying to say! He is trying so hard!

Tomorrow, James and I have a 9:00 am appointment with Santana at James’ chiropractor… Yes Brenda… Dr. Yeager! We are going to try something with him and we will explain more later! Then of course we have HBOT and my week begins! Actually, not too much is scheduled this week. My mom and Craig are coming into town Tuesday! They are staying till Monday. Normally I give my nurse the time off while they are here, but I am not this time because I want to make sure Santana still does his treatments. Oh by the way, he finished 40! …well, I guess on Monday will be 40! And yes, we are going to do another round. We have noticed change. I don’t want to give this up…yet.

Santana is getting lots of love from his new kitten. I can’t wait till Santana can pull it by it’s tail! Hey…it is a 2 year old thing, I would let him do it! Santana is doing great sitting up in his wheel chair and more of a 90 degree angle. I think this is really helping with his head control. Not to mention, he looks much more lively!

I am going to try to put a video on here that I took of Jett praying for Santana, it is so cute! It is hard to understand him because his head is kind of buried. But it is so cute! I have another video I had taken because Santana was doing his smile in his sleep, UNTIL I GRABBED THE CAMERA! But in the video you see something better than him smiling, you see him SWALLOWING and kind of sucking like a baby! I will try to get these up as soon as possible!

Thank you for your support and prayers! And please! Get the word out about the bracelets! Wear the bracelets! Yeah, the money helps with the therapies but most of all, I want to get the word out! I want people to ask you what the bracelet is all about. I want people to be aware that 2 seconds is 2 long! …or in this case, 20-45 minutes… I want people to follow this story! We are up to 1,878,153 hits! That is ALMOST 2 MILLION hits! Mostly by word of mouth because I don’t have search tags on here. And remember, That is a lot of eyeballs watching! If you are a business and would like to support us, please have your logo placed on the front page! See our sponsor page for more details! You don’t have to live in Arizona, this site is viewed all over the world! Help us, Help Santana! God bless!