Santana takes the limelight!

April 30th, 2008 – 1 Year 4 month 14 days

Score! I called it! I knew something good was about to happen. Yesterday was phone call after phone call and email after email of good. I was busy with that stuff all day! And I can’t speak of it all yet, but I can tell you that GOD IS GOOD! One thing I can tell you is that someone at 3TV saw the flyer and got a hold of us and is doing a story on us today. Stay tuned and I will let you know what time this afternoon and I will put the link up too. But they want to do a follow up and promote this fundraiser and OF COURSE talk about Water Safety! Santana is the PERFECT spokesmodel for that! If I can make a billboard with his ICU photo on it and warn parents to watch their child at all times…not just around water, I would. The pool is so dangerous and I am not looking forward to taking Jett swimming this summer. I am so spastic and he is great.

I have to thank my niece Brittney for helping me hang flyers. That was fun. Sorry to your teachers if you were sleepy today! “what time is it?” ;D

I gotta go get things ready while Tyree is sleeping. If you want to watch a miracle unfold, keep up with Santana’s site. I promise you he, or God will not let you down.

Thanks 3TV!

April 30th, 2008 – 1 Year 4 month 14 days

Today was another crazy day! But I survived, as usual. We are survivors in this house for sure. Before Tess Raflos came to do the interview, our air conditioner went out. Not only that, lights for TV recording are really hot. So sadly, we have been sweatin’ it out. A company can come tomorrow, late morning. So let’s pray that it gets fixed! Santana’s cheeks have been red red all day!

So, I just watched Tess’ story and it was awesome and VERY well put together. Thanks so much Tess and Gibby! I appreciate you helping us get the story out.

The next big thing for Santana is the Arizona Diamondbacks are helping us out with a fundraiser. The same people that helped me get the word out for the Barro’s Pizza Fundraiser has worked hard for this. Basically…You buy tickets through us, Santana gets half the proceeds. They are 1st level bleacher seats for June 17th against the Oakland A’s. We are going to prove the Diamondbacks that we can sell at least 450 tickets! We believe, with all your help, we can get the word out and who doesn’t want to go to a Dbacks game for $15? More detail to come!

Thank you so much! I believe that with all this going on and without a doubt, we will get his stander! Thank you so much for your help! We appreciate all of the support and prayers! Go Eat Pizza tomorrow!

Quitters

April 28th, 2008 – 1 Year 4 month 12 days

As we all know, Songs speak to me frequently. The first song that hit me in ICU was Casting Crowns, Praise you in the storm. (see icu slideshow in photos section or on Youtube.com). I know that song spoke to me. And the word believe kept whispering in my ear when I first saw him all puffy and attached to tubes. I have loved the word BELIEVE ever since Matthew Barnett came from the L.A. Dream Center and spoke that he walks around telling the disciples to Believe, just Believe. But today as I was cleaning, I heard a song that caught my ears. I had it on the Gospel Music Channel (funny because about 3 years ago I had a dream to start a christian MTV style station…Glad there finally is one, less work for me) and I ran in to see who the artist was. Collin Raye is known in the Country Genre. I tried to get the song on this site, but no link was available. But I do have it on my myspace. I wrote the lyrics below.

Everything is going well. Well, except the fact that insurance denied our appeal for the stander. So the next step is to go to court and argue why I need this so bad. What a waste of time, but much needed. And you betcha I am going to sit Santana right in front of that judge. Unbelievable. I find it strange that some of the therapists kiddos can get approved and we don’t. I think they just draw names out of a hat. It had nothing to do with the kind of stander we requested either. The one he got fitted in was perfect. He stood in it for 15 minutes the first time
with no issues. The retired O.T. and Santana’s BEST THERAPIST EVER, thought it was the best fit. The O.T. had worked with Near Drowns for YEARS and really knew what she was doing. Plus, this stander goes from a sit to stand position which is the natural way to do so. My therapist does not like the "Frankenstein" style where he just lays and the table lifts up. But we would take whatever we can at this point. But no luck.

So today was a frustrating day. Besides the denial of the stander, negative talk and people were around Santana and it was not appreciated from any of the team that works on Santana at home. Thank you to the ones who are in similar situations that emailed me about how excited you were about Santana lifting his arm. Apparently some people didn’t find it amusing or great…in fact I think the question was, "what was the point of that video?". If your son didn’t move his arm for 16 months, you all would jump for joy too.

Whew, I feel better. I just know that something AMAZING is going to happen because negativity surrounds me just before. But I will not lose my focus on Santana’s healing and the fact is Jesus is the true healer, the rest is just details.

PRAISE GOD for all the flyers getting out! THANK YOU SO MUCH! My support Rocks!

Quitters lyrics
By
Collin Raye

VERSE I: Nobody thinks about that stuff.
Like, how tall he might have been, or how fast he could’ve run.
They just stare as he rolls by.
All they see is a helpless kid, with no chance to live a life.
If they only knew . . .

CHORUS: He’s got dreams of breaking ribbons in a hundred yard dash,
Climbing up a snow-capped mountain & planting his flag.
He believes one day he’ll stand up & walk away from that chair.
He’s got faith, he’s got hope, and all his Mama’s prayers.
He’s not jaded or bitter,
He’s gonna leave the giving up
For the QUITTERS.

VERSE II: The doctors say no way he’ll walk,
He just smiles and says , I’m gonna prove you wrong.
Lots of falls and failed attempts,
His legs keep giving out but his heart ain’t giving in.
What they don’t know is . . .

CHORUS: He’s got dreams of breaking ribbons in a hundred yard dash,
Climbing up a snow-capped mountain & planting his flag.
He believes one day he’ll stand up & walk away from that chair.
He’s got faith, he’s got hope, and all his Mama’s prayers.
He’s not jaded or bitter,
He’s gonna leave the giving up
For the QUITTERS.

BRIDGE: He pulls himself up on the bars and takes a long, deep breath,
Lifts his right foot off the mat and with all that he has left
He takes a step, one step

CHORUS Toward his dreams of breaking ribbons in a hundred yard dash,
Going long for a touchdown with his buddies out back
He believes one day he’ll stand up & walk away from that chair.
He’s got faith, he?s got hope, and all his Mama’s prayers.
He’s not jaded or bitter,
He’s gonna leave the giving up
For the QUITTERS.

Babble Boy!

1 Year 4 month 11 days

We have had a great couple of days! Santana seems to be doing REALLY well on the ketogenics diet. He has been much more vocal. Thursday night he made noises until after 11:00pm. And since that day he hasn’t stopped. Yahoo! Praise God! He continues to stay looser also. He is now getting Physical therapy 2 times a week (we of course paying out of pocket for the second one). I believe he will start striving more.

The downfall, I know, I tried to keep it all positive… It constipates him really bad. He has not had a bowel movement on his own since the diet. We have given him 3 suppositories, but not sure we will be doing that anymore. They made him rash out completely for at least 5 minutes. Because he is limited on what he can have, we did find that he can have Phillip’s Milk of Magnesia. So as weird as it may sound…Pray for poop! We want that stuff moving!

Jett and Santana did not have school on Friday so we, along with Santana’s nurse, went to Peter Piper Pizza. You can just see it in his eyes that he wanted to get up and run around. I felt so bad. The good, but sad part is, We were trying to get him on the rides (Chuck E. Cheese has better ones for him) but they would not fit him. I went to check on Jett to make sure he knew where we were and I turned around and Santana was bawling. His nurse said he bumped his head. Talk about turning the faucet on. He had tears pouring out. I think more or less that he was upset that he could not ride anything. I felt horrible. How would you feel if you were placed on a ride and then taken off and then hear, that one won’t work. No, that one won’t work. I felt HORRIBLE. Not to mention I JUST got Tyree calmed down after his finger got pinched between the stroller and his car seat carrier. Poor babies!

It is a struggle going to places like that because I just can’t help to think how much easier, and crazy in a different way, it could be. Do you have ANY idea how hard it is just to go anywhere? We are trying to schedule a trip to the L.A. Dreamcenter like we did last year at the end of May, but it is such a struggle to find the right place. Not to mention with Tyree, we have double the stuff. I am not sure how we will all fit, but we will make it work some how. It is just a pain not to be able to load up and go. Disneyland would be nice, but nope, can’t do that. I am not going to lie. Sometimes we do get frustrated that we are the ones who have to deal and pay for the aftermath of one persons careless mistake. And to be honest, it probably would not hurt as much if that person didn’t just completely disappear. Sometimes we question why not a simple email or something. We did our part and opened the door and called her to tell her she was forgiven. I guess it isn’t easy from that direction either. Besides praying for Santana, please pray for our thoughts. We have been getting frustrated and we can’t do that. It is not healthy. Pray for Lorili’s niece, who was watching Santana. I know many people have asked me how she is doing, and sadly I have no answer. I can’t get that answer myself when I ask.

Anyway…just a little peak into my brain and thought process. Thank you all for your support and understanding. I am only human. God is about to move something great, I always feel a bit down right before something new happens. Maybe it is going to be the awesome outcome of the fundraiser! Who knows.

Here are the Videos!

Here are the Videos!
April 24th, 2008 – 1 Year 4 month 8 days

Southeast Valley We Need Your Help!

1 Year 4 month 8 days

So here is what I need. We have details and an e-copy of the flyer for the fundraiser. BUT…I can’t figure out how to put it in .pdf for download. It is a .pdf file, but when I upload it, the browser does not recognize it. Hey…I have been done with school since 2003 (well at least when I graduated with the web degree). So I put a .jpg version up but it is not the full version. SO…either take that version (link on bottom of this entry) or email me and I can email you the .pdf files. Oh, what do I need? I would LOVE LOVE LOVE it if you all can get the word out. Tape it on the mailboxes in the neighborhoods, church groups, put on car windshields. Whatever you can do. If you can email or post in the guestbook that you are willing to do this, I would love to know how much the word is getting out. So, the details are as followed.

With East Valley Sol, they helped us team up with Barro’s Pizza on Germann and Alma School, Queen Creek and Power, and Gilbert and Ray….those 3 location ONLY, and they are having a fundraiser on MAY1st! It is all day, dine in, carry out, or delivery! THE KEY IS: YOU HAVE to mention Santana or take in the flyer! We only get the proceeds from those who mention Santana. You gotta eat right? So enjoy some YUMMY pizza and with no extra cost you are helping Santana out too!

Please DO NOT use the flyer above to hand out, it WILL NOT print clear. Now, there was 2 fliers made up. The first one, fundraiser_orig.jpg has Santana’s actual website and the scripture reference. The second one, fundraiser_mod.jpg has been modified by taking scripture reference out and the website is actually listed as www.santanablack.info, which redirects to here.

If you are not in the state, pray that we raise some serious money so we can do the high end therapies with Santana! Help us improve his quality of life!!! He will strive amazingly through this! You guys pretty much ROCK and so does the support you give! God will multiply this. I BELIEVE! And there are going to be some people sick of tossin’ Dough!

Update and Videos

1 Year 4 month 7 days

Today was total chaos! Santana had School until 11, then I had to show his nurse how to mix his formula. He got hooked up to that. Then my new support coordinator came (thank goodness the state nurse could not because there was a lot going on. The coordinator came in, Tyree starts screaming, then the phone was ringing and I had to get it because it was his food delivery place. Sadly that phone call was to find out I was not getting enough food for Santana and he may miss his morning feeds tomorrow because I was shorted and they did not want to deliver. After arguing it out (with my poor new coordinator there) we managed to get the order right…for this month anyway. I tried talking to the new coordinator as Tyree is screaming, then Santana’s Physical therapist came in on top of that! I think our new coordinator is ready to trade us in! RIght after that came Occupational therapy…not long after that, Santana got to calm down with his message Therapist. Whew. I was angry and stress but it really doesn’t matter. What does matter, Santana is doing REALLY well. Monday was a great day at school, he got to go in a stander! Yahoo! I guess his blood pressure was GREAT. I worried because when his P.T. was standing him on Friday, his legs turned REALLY purple. But he stood with his P.T. today and he did great! He has had a few seizures but NOTHING compared to the 4-8 he was having a day. He continues to stay loose also.

I have some BIG news to announce and if you are in the South East Valley, stay tuned. You can help just by having dinner! Ya gotta eat right?! More info to come! But what I can tell you is how awesome East Valley Sol is! They are a non-profit organization who helps out families like us. And just like The Missing Piece Foundation, these guys are an angel! Total heaven sent. They are working on some fund raisers! I will get the flyer posted tomorrow! Save the date for May 1st and be hungry for PIZZA!

For now, enjoy the 2 videos below. The first was Tyree hanging with Santana. The next one was Santana holding his arm way up. He had it up longer, but I could not find the camera. All in all, we are doing great and God keeps shining through and showing up when the world gets dark. Amazing how that works.

…Umm…the videos are still uploading to youtube. So, I will get them and Fundraiser flyer up tomorrow. I am so beat! Oh, and thanks for praying for Luke! They are doing great down there! If things go well, that will be our next option for Santana! Thanks for the prayers, we all know that it is our faith and prayers that is really going to bring Santana back to the spunky little boy he SHOULD be.

I have some BIG news to announce and if you are in the South East Valley, stay tuned. You can help just by having dinner! Ya gotta eat right?! More info to come! But what I can tell you is how awesome East Valley Sol is! They are a non-profit organization who helps out families like us. And just like The Missing Piece Foundation, these guys are an angel! Total heaven sent. They are working on some fund raisers! I will get the flyer posted tomorrow! Save the date for May 1st and be hungry for PIZZA!

For now, enjoy the 2 videos below. The first was Tyree hanging with Santana. The next one was Santana holding his arm way up. He had it up longer, but I could not find the camera. All in all, we are doing great and God keeps shining through and showing up when the world gets dark. Amazing how that works.

…Umm…the videos are still uploading to youtube. So, I will get them and Fundraiser flyer up tomorrow. I am so beat! Oh, and thanks for praying for Luke! They are doing great down there! If things go well, that will be our next option for Santana! Thanks for the prayers, we all know that it is our faith and prayers that is really going to bring Santana back to the spunky little boy he SHOULD be.

Hi-diddley-Doo…

Hi-diddley-Doo…
April 14th, 2008 – 1 Year 3 month 28 days

Off to St. Joe’s We Go! Thank you to those who jumped on those quilts! Within a half hour half of them were gone. Thank you Brenda. This bought us 2 Physical Therapy Sessions!!! Or 1 Oxygen Therapy!

We are heading up to St. Joe’s today so you can read any updates on the guest book or on myspace. On myspace, just look to he right and you will see the blog and click on it to open. Keep us in your prayers that he transitions well and we can get of these seizure meds!!!! THANK YOU GUYS!

PS. Quilts 8 and 10 are the last ones left! WOW! You guys are AMAZING!

PSS. FORGOT ONE! There is a number 14 now. There were 2 other ones, but they were bought and taken before I could even take pictures. THANKS!

Quilts are up!
April 11th, 2008 – 1 Year 3 month 25 days

SNUGGLE UP FOR SANTANA! The Quilts are up! Please visit the page for more information!

I totally need to update this first page. Like I have time to think of that. I really would like to redo the whole site, but I know it would be a big project and I just can’t do it right now. Well, we have been hanging out since we got home from Jett’s game. We all are still not feeling 100%. Tyree is cutting teeth…FUN! Santana still has a lot of junk. I only have vomited once, but still feel crummy. I feel bad today I think because my arms got FRIED sitting at the game. Glad the boys were under and Umbrella. LOVE Arizona Sun…errr. James is feeling a bit better, he never lets anything bother him and gets over it fast.

Well, 2 more nights at home and we head to St. Joe’s for the week. I am not thrilled at the most, but it’s what is best for Santana. I am going to miss my other boys at home. =(
It will be lonely without them all together. But everyone says good about the ketogenics diet.

Last night, I was watching the first slide show I made with the Casting Crowns "Praise you in this Storm" and also the Lion video. If you have not seen them, go to youtube.com and search for the user iheartmyboys. But anyway, I put the video of Santana in the lion costume in front of him and played it a few times and his eyes welled up RED and he had tears. HE HEARD HIMSELF! HE KNEW IT WAS HIM! He kept lifting his hand up. It was so sad! But awesome at the same time! I took him to bed with me and he was stiff but just melted to me when we laid down. He has been sleeping with me until midnight the last few nights. 2 nights ago Jett and I made a Santana sandwich and I had my arms around both the boys. It was the best feeling. Santana is trying. He will fight through this.

Please Pray for Continued Restoration and COMPLETE healing in Santana. The doctors and nurses are already amazed at how far he has come. Remember, he was only supposed to be in a Vegetative Comatose state for life! When we first brought him home he was in an opened eye coma, and now he blinks and looks around and reacts! PRAISE GOD!

SOLD

1 Year 3 month 28 days

Quilts are SOLD! Thank you! Look out for more from Brenda and Sewing For Santana!

Miracle Diet?

1 Year 4 month 3 days

We made it out Thursday night and got home by 8 pm. It was not a bad stay, just crowded in a 4 bed room with 3 beds full. EH. Santana did good. The second night, he was in Ketosis (no sugar or carbs) and his blood sugar went down to 42. 80-115 is normal but they were allowing him to go down to 40 before giving juice. But 6 hours later he was back up to 57 so that was good. Last check before the hospital was 76. I will just need to check it when he seems different or lethargic. Speaking of, he was REALLY lethargic the first day and night. But that was when his blood sugar dropped.

The only bad thing about the diet, I had to drop a LOT of natural stuff, well, all of it for now. But most of them have a rice (carb) base. The dietician did say that the GABA is being used in research so we were on the right track with that! It helps with his tone! Speaking of tone, that is the good thing about the diet. They didn’t say this can happen, but it is the only thing I can link it to. HIS TONE IS LOOSER! He is so loose, I can’t believe it. He is a wet noodle! Maybe we can go down on his baclofen. If it doesn’t take away his seizures, it is worth it for looseness! Or maybe the pill form of baclofen is stronger. Who knows, but God is so good!

My stay at St. Joe’s was good because the staff is ALWAYS wonderful, but horrible because I got no sleep and the bathroom was down another hall. But what can I say, we survived, until 4:15 pm on Thursday. Those last few hours of being there was CRAZY! I walked over to the CRS pharmacy to get all his new meds (Pill form only) and the lady, which I have had attitude issues from her before, rudely said too bad, we didn’t get anything under that name. Well! The neurologist faxed it over late morning/early afternoon. But they didn’t check the machine (NOT THE FIRST TIME THIS HAS HAPPENED) so I ran outside to call the Pediatrics floor since we could not leave without them, and they said they would fax them over, then the lady came running after me saying she found them, mmmmmm hmmmmmm. But with the stress of that it bothered me more that I was away from Santana for like an hour, and I was not the only one she was rude to. You betcha I complained. NOBODY deserves to be talked to the way she was talking to everyone. So anyway, I get back to the room and NO Labetalol! (his blood pressure meds) So they are contracted with a local Walgreens and were directed over there. Then I am sitting there and thinking food! I I need to make sure they delivered! Oh shoot! So I called Lorili, who was staying at the house with Tyree, and nope, no delivery. So I ran back to the nurse freaked out. They had a social worker come in and let me know that they would be making a delivery later to get us by. Whew. I felt so bad for my nurse Maram and the East side Peds front desk Peggy. They were so good to me while I was stressing out. Why was I stressing, I did not want to stay another night if I didn’t have to!

So, we are off to the Walgreens pharmacy. That was not fun. It was not their fault. Just the weird way I have to mix his Labetalol. I have to drop the pill in 5ml of water but suck up only 1.5 ml and give him that. So, the pharmacist was confused and wanted to compound it. Well, NO, we can’t do that because it is compounded with sugar, which is how we used to have it. So I went in (James did the first time while I stayed in the back with Santana) and explained the diet. Then insurance would not allow it to go through because it is an adult dose. But then I realized she was billing our primary insurance and not CRS. So about a 1/2 hour later, we were headed home! SO MUCH FUN!

Doesn’t matter really, we survived and I am believing and seeing that there is change in Santana. Not to mention, I am just happy that we made it home so we can be with the boys! I was so dragging yesterday that when James got home and after dinner, I went straight upstairs and got peaceful rest. James did too because the boys all slept through the night! So now I feel caught up enough to blog and take Jett to his baseball game (James works today).

Pray for Luke on the 22nd as he is getting the Stem Cell injections. Pray that they go to the right place in his brain and pray for their safety! Go Luke! We are Believing with you!

Time to crush some pills! Thanks for your support. And for the ones who ordered quilts, I will get those out on Monday! Thank you so very much for your support! With Therapy being $90 an hour out of our pocket, this helps TREMENDOUSLY!