Hanging On

I was really frustrated this morning. Santana’s seizures last night and this morning were odd. He would cry a bit and then like it takes his breath away and then he pulls his head back and rolls his eyes back and then cry in a different tone. That alone is only 10 seconds long, if that, but they keep going every 15-20 seconds for about 10-15 minutes. Not so good. I was talking on the phone with my mom and as I was telling her and while I was not too upset, I started crying. I wasn’t so worried, at least I thought. But then she reminded me not to focus on the negative and think about how far he has come and what he is doing that the doctors said he would never do. To remind you, we were told that he would have no cough…he does. He may not ever open his eyes …he did. He will not have a gag…he does. He will be in an open-eyed coma (Vegetative state) for life…not so much.  He will be brain dead. But how can he brain be dead if he is doing something new every month? How can you tell me that his brain WILL NOT regenerate cells. He is living proof that there can be change. 

Last year at this time, we were in the hospital 2 times in June, one because he stopped breathing and another because he was having seizures, and an odd bowl movement (which ended up being the med Omnicef). He did not have movement in ANY of his hands and arms. A few months later he got movement in his right hand and NOW he has movement in BOTH. Last year he only let out wimpers while getting tough therapy. NOW HE CRIES IF HE POOPED HIS PANTS!!!! So… I shall hold myself together and Thank God that Santana is slowly being healed in the name of JESUS! I will look past the fact that Santana’s body tenses up in seizures. I will look past the fact that his spine is twisted. I will look past the fact that I can’t get his feet in his AFO’s anymore. I will look past the fact that he does nothing with his mouth on his own. I will look past the fact he can not cry out and tell me what hurts. I will look past that he can not stand. I will look past that he is nothing like the other 3 year olds at the playground. Instead…I will walk by my faith and I will only BELIEVE that there is more. I will BELIEVE that, in the name of Jesus, Santana will be healed. I will no longer look at the whole picture because it is too big for my eyes to see it all anyway. I will take it one step at a time. I will focus on one issue at a time. (mmm…maybe 2 or 3). God is so good and I know that he has not ONCE left or forsaked me. He does know the big picture and I am going to believe and trust in him. It may be a long and painful process and I am sure there will be days that I cry…but NOTHING will break me. My faith is Titanium. You can’t break this. You better believe that I am going to stand up tall and I will not back down from this fight and I will use all my strength (and prayers) to move this mountain out of my sons life. YOU WILL WITNESS A WALKING TALKING MIRACLE. Believe it!

A Dream or a Sign?

I had the absolute most AMAZING dream last night that woke me up smiling! I dreamed that Santana was babbling like he does every morning when he wakes up but he kept saying the same thing over and over until it became clear that he was saying “mo milk!” which was his favorite phrase. I lifted him up and straddled him on my waist…which was good because it meant his hips were fine and could do that! We were frantically searching for a sippy cup and he acted as if he hadn’t drank for years…well, technically. I was scared. I remember yelling, I need to get a hold of Dr. Sudha! I need to find out if he can do this? What do I do, who do we call? We were so excited and shocked and NO ONE WOULD ANSWER THEIR STINKIN’ PHONE…which always happens when you really need to say something. He drank and he was a cuddle bug. I remember I was wondering about his feet but they were wrapped behind me I could not see them. I was then woken from this WONDERFUL dream by the sound of the suction machine. I kept squeezing my eyelids as tight as I can and had no luck getting back to where my “happy place” was. Oh, but what a dream and a hope to hold onto. I have been praying almost every night for God to give me a dream of what the future holds. I will take that! Also, previously in the night, I had a dream I was at some place to get stem cells. So now my question is…hmmmm…where those 2 dreams hand in hand. If I do it will I eventually see this? It doesn’t matter. It is just like a big breath of release when I think of that dream!

Because of my dream and everyone else being tired, we over slept for church. We were debating it anyway because there is a big fire in the West Valley and we can smell it out our front door and that is HORRIBLE air for Santana to breath. He gets too many breathing issues for us to chance that. But the stinky part about keeping him inside is that 2 agents are bringing people to look at the house today and I don’t like being here when they are here. AWKWARD. But whatever.

I also wanted to take a paragraph or so to thank my friends and support. To me, it AMAZES me that there are people out there you have not seen in years and when you get together, you pick up like no time is gone. We had some friends over last night and what a BLESSING Jason and Kristen Miller are. They have done so much to help us and they had their small groups bring us dinner and what not. They are just awesome caring people. It is friends like this that get us through. They don’t treat us like we are different. I think some people think we can’t have fun and we are depressed all the time. But that is not the case. I thank the friends I have made going through this too. When everyone else walked out, it was complete strangers…that I can now call friends…that lifted us up and encouraged us. I have never met some of you from Tennesse to Alabama and I do wish some day I get to. All of your comments and emails lift me up daily. To know that their are people out there that care about a family that they have never met is AWESOME. Thank you. I thank the ones who got us involved in fundraisers. If it wasn’t for Nick, Shawna, and Kerry and whoever else was behind the scenes, we would not be here discussing stem cells as an option for therapy. I thank Melissa who is looking into getting us the stander at the best possible price…I know, I owe you a picture . I thank all my family that does the best they can to pitch in and help. I know that alot of you don’t know what to do or say. But know that we don’t expect you to. We don’t need you to be sympathetic, we just want you to stay who you are because we are still who we are with some limitations. Thank you to those who take the time to understand and have never left our side and those whom we have not seen in forever but came right back to pick us up when we were down. You have shown yourselves as a TRUE friend. Thank you.

Life’s A Circus!

As if I needed the extra stimulation and because my life IS a circus, I took Jett to the Ringling Brothers Circus. The girls, whom I can call friends, that arranged the Diamondback Fundraiser, had some extra tickets so we went. It was so stinkin’ cool! I have not been to a circus since before I can remember! I think I enjoyed it more than Jett. But either way, it was SO AWESOME!!!! And some good momma time for Jett. I have been fighting headaches ALL week. I have not been feeling 100% but today took my mind off of that.

Santana’s hips have been bugging me. They are SO tight. His therapist made a point that it is probably more the muscle than the hips not being in place. He says in most cases with the kids he has that their hips are not in socket they are loose and all over the place. Which makes sense. But I was talking with his nurse and she has seen many kids get the hip release surgery. So if that is what needs to be, than so be it. I think getting that fixed before intensive physical therapy would be the smart thing to do. I think he will benefit more. It is just stinky to think of a surgery!

Yesterday, I emailed all his medical records and application form for Umbilical Cord Stem Cell Therapy. The soonest Available will be end of July. So, I need to find out if we need a passport cause by experience, that takes a while to get. Oddly, I already got mine 2 years ago and never needed to use it… until now. I am excited. I am also looking into another place that goes over to Mexico and have an appointment over the phone on July 7th. I have just been thinking about long term effects of this. Like, what are the chances of Santana contracting Bipolar. I know they can test for HIV and Aids, but what about personality disorders? What are the chance of different stuff like that? I know I can ask the doctors, but how honest would they be? I guess it is silly stuff I started thinking of. But I will discuss and see where we are.

TEE-SHIRTS… I will be putting the order in Monday. Let me know your sizes. If you have emailed me about those and you have not heard back, I am sorry. It has been CRAZY! I am getting there. Also, Brenda made some more Quilts for Snuggle Up For Santana. I will put them up as soon as I can. I am going to have to charge for shipping on the shirts and quilts because it keeps us from getting the full benefit. Shipping was so much that we only made a few bucks last time. Thanks guys!

One more thing I want to talk about. There is going to be a BIG HUGE fundraiser hosted by East Valley Sol! The best thing about it is that Santana and Luke is their featured Kids they are raising money for! I will find out more details next week. I am really excited! Basically it is a BIG Dinner party and from what I understand, their will be a silent auction and MORE! But in the mean time…All you in the EAST VALLEY! They are doing a bowling night, Bowl for the Sol. For $10 and a backpack with school supplies for underprivileged kids can get you a night of bowling and LOTS OF FUN! Help a good organization and your community out!

Thank you so much for supporting us and supporting the organizations that support us! Keep on praying and believing! We are seeing more movement in BOTH arm…This is just the beginning of a Miracle Journey!

Summer Sun for Santana!

Today, I did something I NEVER thought I would do with Santana. With the help of his nurse, we took him in the pool. I put Tyree down for a nap and took the baby monitor out and we went out there with Jett and his cousin Blake. Honestly, I was nervous. But in reality, the hardest thing was to keep his stinkin’ ear plugs in. They HAVE to stay in since he has tubes in his ears. Usually he shows reaction of pain or disgust in his face, but not happy. He had no emotion in his face so I an only assume that he liked it! He laid in a float, and then we put him in a tube and put floaties on him and let him dangle. It was nice because we were able to move his legs in a jogging motion…but without the weight of gravity. Unfortunately we couldn’t get much bend out of his left foot, so pretty much, we are back at square one and surgery may be the case. If it fixes it, I am A-OK with that. In reality, I think they could have done 1 more week of serial casting, but I think they chose to stop because there was a BIG broken blood vessel after the 3rd casting.

Well, whether swimming helps him or not, I am not sure. But I can say one thing. Before we took him outside, his heartrate was at 165 bpm. Something was bugging him without a doubt. But after we came back in, his nurse gave him a bath and hooked him back up to his monitor and he was at 98-100 bpm. That is usually his sleeping rate! That is totally AWESOME! In fact, right now he is sleeping and is 88-90. That is great! He must be pooped!

After swimming, he had Physical Therapy. We put him on a Rocking Horse (Elephant) and he did well, but when we tried to spread it out over the exercise ball, it was not happening. He cried out in pain. Which puts a damper on doing Horse Therapy… for now. We were going to try that and his therapist said we can side saddle him, but I want the whole and true effect. So for now I will just keep stretching him.

One amazing thing that happened is when his therapist first sat down with him to work on him, Santana Scanned the whole room. I think for a moment he saw with 100% vision. He looked all the way left, which is where I was walking by, and then scanned all the way right. It was Crazy Good! He did really good and his head control is REALLY picking up. Now I need to start counting how long he is sitting up, because he is just getting better! His spine is still a MAJOR issue. It bugs me. I am sure if they xray him next month at his appointment, they will see that it is more than 41 degrees. But I am praying NOT and that it is at least the same.

Another Issue is… ( those dots should represent…DUN DUN DUN) I have seen some seizures. Not a lot. But for some odd reason he is having some breakthrough seizures. I don’t get it. I just don’t understand. But We need to get rid of those COMPLETELY because they are definately not making his brain any better.

I have been doing the best I can with Jett. Last week we went on our date to see Kung Fu Panda. Then of course he was bored the second we walked in the door. This week he has been going to my sister-in-laws church for Vacation Bible School. But that is in the evenings. Luckily, he has kept busy with his cousin. I have been trying to find things to do with him but ideas are running scarce. If anyone knows of any Vacation Bible Schools coming up in the SE Valley, please let me know. I will sign him up for anything at this point.

Tyree has been keeping me super busy. He has been getting around for 3 weeks now and boy am I busy! I have to keep all doors shut so I can see him at all times. 

Lucky for me he has not attempted stairs yet. I spend most of my time tracking down Tyree. It seems like any time I have to do something with Santana, Tyree disappears. He has figured out when I am occupied. He is fun.  It was really cute the other night. It was just Tyree, Santana, and I and I was working with Santana on the floor and Tyree kept staring at Santana, screaming once in a while to get a reaction. He could not figure out why Santana would not look at him. But then I was working on Sitting with Santana and by this time Tyree was already off and playing with toys. When Tyree saw Santana sitting, he crawled over there really fast with a big smile on his face and stared into Santanas face and then started crying when Santana didn’t react to him. I would love to know what Tyree is thinking. I can tell he is frustrated about Santana. But This is all he will know so I guess he will eventually get used to it. It is so hard to imagine what Santana would do with his brother. He would probably take all his toys away and knock him upside his head with them. But we will not know.

In the mean time, we just really need Santana to be uplifted in prayer for his posture, spine, feet, and seizures. This is tough. We need that boost to get us going again. A smile would be perfect!

Short update…not much to say.

It has been a relaxing weekend. We were going to take Santana out in the pool, but it never happened. So maybe sometime. I spent most of the weekend researching therapies and what not. One thing I do know and want to do is Intensive Physical Therapy. I am looking into the Napa Institute in the Los Angeles area. It is right near the beach we just went to. Not to mention, one of the ladies that runs it was in my shoes years ago, in desperation looking for the right therapy for her near-drown. I feel that they would be the ones who would really understand my son.

So now, the biggest issue is not if we are going to do it or not, but if we are going to do stem cells or not. If we do, do stem cells it would make more sense to do that first. But, when I first was Gun Ho on this last summer when Dr. French gave us the information, we didn’t have the money, now that we have the money, it is a bit more scary. I don’t know. I really felt like I was led there last year, but now I don’t know what to think. It is something I really, really want to do, but it has to be something my family agrees on completely. So please pray for discernment with that whole thing.

I have some video of Santana sitting, but I need to put it all together and upload it. He seems to be in a LOT of pain still. His message therapist says his groin is pulled. And let me tell you! I pulled my groin when I was like 4-6 months pregnant with Santana and it was painful! I feel for him. He has been crying a lot lately.

So I really have not had much to write about lately, just getting frustrated with our house and what not. I don’t think it will ever sell and we will be stuck living in the living room forever… I am really annoyed with all that, but we won’t go there. If only we could live a normal, as normal can get, life.

Thanks Dbacks and News Channel 3!

I have always said that bad days are a sign of something AMAZING coming.  While Monday was a stressful and emotional day…and I did find my wallet…yesterday was AWESOME!!!!!!  Thank you to EVERYONE who came out to support my little fighter Santana!  I did not get to sit down and watch the not so great of a game…I still love you Dbacks!…We had so many people coming by to say Hi and meet Santana! Some we have never met, some we have not seen in a long long time, and some who are new in our life that have been AMAZING supporters..uh hmmm…Kerry and Shawna (this would not have happened without them, thanks for the time away from your lives that this took!!!!). It was awesome to see some of the staff from Gateway Pediatrics…The best doctor office EVER!  And thanks to a big group… MGA whom is the staffing company for our home nurse!  It was GREAT to finally meet some of you mystery people I have only talked to over the phone!  I was bummed I couldn’t get a a picture of you all with Santana, but I was a little busy with the news camera.  Sorry guys!  I hope you had a blast.  It was awesome to see Santana’s DDD support coordinator from when he was in the early intervention section. Thanks so much Tawnya!  One of his nurses came out to support.  Thanks Amber!  Thank you Pastor Jeff Allaway and Big House Inc.!  And Phoenix Girls of Phoenix First Assembly of God.  And of course, Thank you Power Nissan, Chandler.  And to all of our other Friends and family!  It was so good to see you all after a LONG time!  Oh, and I finally got to meet Luke’s mom!  What a great family.  I just feel so bad that I did not get to go meet Luke.  But I am sure that day will come! More than the money we raised for therapies, it was a BLESSING to see the people who want to support us!  

Thank you to Brad Cesmat and News Channel 3 for doing another interview to speak out on Water Safety. Changes need to be made.  This is becoming too frequent!  I will do what it takes to get some laws changed on pool fences and responibility charges.  If you can get charged child neglect for leaving your kid in the car or not having their seatbelt on, then you should get charged for not having proper water safety measures.  This is not just a pool, this is buckets, dog bowls, bathtubs. If I find it on the net I will post the link. I don’t think I posted the link to the last story.

So my day kept on getting better yesterday.  Our $5000 insurance cost for a stander went to $2700 out of pocket, which then went to $2400, which is now a whopping $700 plus shipping and handling.  I think we can afford that!  God is so so good!  The hook up came from a friend of a friend of a friend.  Shawna who helped set us up with The Diamondback fundraiser has a friend that is also in the East Valley Del Sol group (I believe) who has a friend in Ohio who owns Brunner Healthcare.  Thank you so much Melissa!  It is all about Pay it Forward!  I pray that blessings return to you and your company.

Thank you to everyone.  Thank you for the support and thank you for the prayers!  Thanks for the emails to order shirts.  If you are interested, they are $10 a shirt, add a dollar for every X after XL.  (i.e. XXL=$11  XXXL=$12)  Just send an email with the sizes and once I get a big enough order, I will put in a new order to the printing company!  Thanks so much guys!  Keep on Believing!

Watch the News!

We will be interviewed with Channel 3 news.  So watch for our water safety segment!  We are really excited and think this is our purpose.  See you all at the game!  I am feeling MUCH better today than yesterday!  Come see us at the top of section 141!!!!!  

Went to Dr.

We went to find out that he has Junky lungs and an Ear Infection.  I could’ve put money down on that!  I am so tired of sick babies but I guess when you have multiple kids you can expect to be in the doctor every other month.  

Today has been a VERY frustrating day.  I was ready to lock myself into a room.  I want to thank all those who donated above their ticket price and those who donated just to donate.  Without that we would have come up a bit short. And for all those who are willing to go out in this SCORCHING heat to support Santana.

But that is how my day has gone.  Not to mention, I lost my wallet so I can’t go anywhere or buy anything.  I am so frustrated!  If one thing could go right today, I would be happy. 

Desperate for Prayers

I have been up the last 30 minutes, since 4:30 am, suctioning Santana and giving him a breathing treatment.  He was crying out in pain and I took his temperature and it is climbing up.  I gave him Motrin and now all I can do is pray in desperation for answers.  He has had a wet cough the last few days.  I just pray that it is a simple ear infection.  I emailed his doctor yesterday and she is going to have the office call and squeeze him in.  Yesterday was 112 degrees as is today is supposed to be and I really don’t want him to go out in this hot and yucky air.  But we got to do what we can.  Just keep him in your prayers because when he is agitated by something, his body stiffens up and we are back at square 1 with therapies.

Happy Fathers Day!

I wanted to take the time to thank James.  I am not sure there are too many fathers out there that can handle what he has been through the last 18 months (to the day tomorrow).  I think ALL men have dreams of their boys playing sports, working on cars, and all that boy stuff.  The day their little boys are born, they hold them imagining the first time they get to play catch  or the the first time they get to talk about girls.  They are proud of their boys because they are the ones who will carry their last name.  Thank God we have two other boys to do so, but those dreams for Santana has been RIPPED right from James’ thought process and I can not imagine how a daddy would feel to lose that bond with his son.  So I have to thank James for everything he has done.  I thank him for the 4 months he took off work to help keep Santana on schedule with therapies as I was swollen with Tyree.  Thank you for putting extra time into work so you can support us, Santana’s therapies, and GAS to get to phoenix for his appointments.  Thank you for spending time with the boys.  I appreciate you so much. Thank you for the faith that you keep to keep this family going.  You are an Awesome man of God and a wonderful father and husband!  I love you.

Santana has been junky the last few days, but so has our air quality.  I will be taking him to the doc this week because he has green globs coming out. Yesterday when we were out and about I had to suction for 10 minutes straight and he was worn out and exhausted after that big choke.  Right now, he sounds like a coffee pot brewing.  I tried to get him to sit, but his therapist does a ton of things that look much easier than they are.  I may be looking into out patient therapy so he can get it 5 days a week.  I don’t care how much it costs at this point.  I believe if he gets more therapy he will really strive.  It is hard to see his spine curving so bad and his ribs flaring out so far.  It makes this all that much harder to see his body unusually formed.  But we are not giving up and neither is Santana.  

Time to hook Santana up to some feeds.  Pray for continued recovery.  Pray for his spine.  Pray for his cough/lungs, pray for his left foot which has dropped again to where we can not get them in his AFO’s.