I really don’t want to blog but I have left out a big thank you that needs to be stated.
When we were at The Native New Yorker for Wings… YUM… a gentleman came up and said he was taking care of our dinner. He thought Santanta was just sleeping but when I had to suction a SERIOUS choke, he realized there was a lot more going on and wanted to be the good person you rarely see these days. It was nice to have someone come and do that and an extreme shocker! I wish I could name off the water company he owns in Queen Creek but I can’t remember… Sorry about that. But I do know there are still good people in this chaotic so-called life! God Bless you sir!
Not to mention, our waitress just ROCKED! I met her earlier in the day when she acquired about my purple hair and I told her about water safety and Santana. She gave us first class service when I brought Santana in later that night. What a day of being blessed by the people surrounding us!
Not much else going on. I really just want to crawl back in bed and catch up on some serious sleep.
Santana is junky. VERY junky today. PLEASE pray he does not get sick or surgery will be a no-go! =( AND SICK PEOPLE STAY AWAY!!!!!! DO NOT SEND SICK KIDS TO SCHOOL! SERIOUSLY! If he is around one more puker… I am gonna be ticked. People just do NOT GET that he is NOT your average kid and he has a suppressed immune system and it does not take much to get him sick. WARN US BEFORE YOU GET AROUND HIM WHILE SICK! I can put a mask on!
thanks.
Oh… besides the water safety stuff and school starting. I did get to meet someone from a blog I read yesterday! While it was brief, it is SOO awesome to meet people face to face! All these amazing moms of these amazing kids makes my world go round and give me so much hope! Thanks Shauna for hanging around and waiting!!! Christian looks amazing!!!! When are you going to dye your hair purple?? =)
Ok.. No video… no pictures. My eyes need toothpicks to hold them up. Maybe I need to find someone to go have a purple monster with!
I can’t help but sing this Adam Sandler song from Billy Maddison….
Ohhhhhhh
Back To School
Back To School
To Prove To Dad That I’m Not A Fool
I’ve Got My, Luch Packed Up
My Boots Tied Tight
I Hope I Don’t Get In A Fight
Ohhhh
Back To School
Back To School
Back To School
Kick off is Tuesday at Phoenix Children’s Hospital! WOO HOO! Or… boo… It is a mixed emotion kinda thing. I am so thankful for the volunteers that get the word out and Water Watchers is an AMAZING program! Speaking of Volunteers…. Tiffany over at PCH is looking for people to tie ribbons onto cards!!!! There is like 6000 more to do and then pass out!!!! Anyone willing. Maybe I will have a ribbon tying party? Anyone interested?!
Which also reminds me… WEAR YOUR PURPLE RIBBONS for the month of August so when people ask you can tell them the importance of water safety measures. I am going to dye my blonde peek a boo’s PURPLE for the month! I AM DEDICATED! Shoulda made shirts. Shoot. So if you are interested in helping pass out purple ribbons, please let me know. Or getting a group together to tie!
So what a busy week I have. School starts tomorrow, so I will be there all morning, then I rush to St. Joes to do PRE OP APPT! YIKES! Then Tues I will be in Phoenix for the DIAM kick off! Then it goes and goes from there!!!
This was Posted on Santana's Facebook Group's wall. Thanks Natasha!
DEEP BREATH!
So I am really excited cause Costco is featuring the Vitamix blender! THe special needs community really knows about this blender! It is the ONLY one that can blend to the point of getting it all through a TUBE! I WANT IT! ALL day I have been looking for Santana’s check book! I can’t find it. I am in tears cause I want it so bad!!!!! They are only here this week or until they are gone. =( I gotta find those stinkin checks! My week is too busy to get money out and go later! It is for $394 and I know people who have paid over $600! I WANT IT!!!!! SANTANA NEEDS IT! I hope and pray I find those stinkin checks. It is giving me ANXIETY!
AAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHH! WHEW! Ok. Pray I can get this blender and get Santana some HEALTHY food!
“Can we pretend like Airplanes in the night sky are like shooting stars… I could really use a wish right now!”
I wish life was different.
I wish I can redo December 16th, 2006.
I wish this NEVER happened to Santana.
I wish he could get ALL better!
I wish these wishes were doable. But they are not.
But Santana could make a wish without a doubt. And he doesn’t need a star or an airplane in the night sky. All he needs is Make a Wish Foundation! This is the first I have talked about it… besides a few… WHAT TO WISH FOR??? posts on twitter and fb. So here goes.
Santana got accepted a while back. Not because he has acquired CP. Not because he is a near drown. Not because of his seizures. But because his Chronic Lung Disease had him fighting for his life last summer and his quality of life was very GRIM at the time! I hated adding that diagnosis on him last year. It wasn’t fair and it only meant we were going backwards. But Make a Wish has come to color a dark world. It is bittersweet. Great they will make a kid feel so Loved and like the rule the world. But the bitterness comes when you think how they have fought death and in a moment could be there again!
Santana gets 1 wish till he is 18. Would it be best to wait and MAYBE he can vocalize his own? I thought that… But we have MAJOR MAJOR MAJOR surgery coming up and we don’t know how he will come out of that. So we thought, Let’s just do it.
What to do?! A Disney Cruise is cool, traveling is cool, but what would Santana get out of it? And HOW STRESSFUL would we all be?! So we stayed close to home. We told them for our first choice to make over his therapy room with all sensory stuff. If that doesn’t pan out… our second choice is a swim spa (they do not do in ground pools). We can’t go wrong with either and he can benefit in a long run. Both of these things are what is FUN for him and to be able to enjoy something… beyond his disabilities. The granters were SO nice! They brought gifts for all the boys! Santana’s eyes LIT up when he saw his spongebob movie!!!!! IT was so cute!
And let me tell you… THE SKY WAS SO BEAUTIFUL WHEN WE WALKED OUTSIDE!!!! Like the heavens were opened up for us! =)
Gotta Love Arizona Sunsets!
Santana woke up coughing a bit. PRAY HE STAYS HEALTHY! He has school and surgery in… 26 days!!!!!!
OH! I ALMOST FORGOT!!!!!
Last night my friend and her kids along with Jett and I went to go see our FAVORITE Air 1 Band… and my moms church (Angeles Temple’s) Worship team… PRESS PLAY! WE HAD SO MUCH FUN! Jett has always loved their stuff! But now that he was standing by them in the music video… he thinks he is hot stuff!!!! I have been talking back and forth to Sada K. cause she is releasing a song called believe so I wanted to get permission to use it in Santana’s next video. Well… she recognized us outside before the concert and they all said hi. Jett had THIS HUGE grin on his face like… OH YEAH! I am famous. HA! It was too cute!
We went to the front for the concert and stood with the rest of the screaming preteens. HA… I wonder if we were the only adults? Who cares! I HAD SO MUCH FUN! Then we went up there to do the NY2LA dance on the stage with them… once Sada K. showed the crowed the moves, like 50 to 100 people were up there. It was so fun. She pulled Jett up to ask him his name and that boy was on CLOUD 9!!!!!! I thought I was going to lose my voice for today. It was just AMAZING! Jett bawled his eyes out cause we didn’t stay and get autographs! HA! Crazy kid… I told him Grandma can get that ANYTIME! IT was AMAZING! They will be touring all over for the NY2LA tour so check them out at www.thisispressplay.com!!!!
This video below is Santana during aqua therapy. It blows me away that the thing that took his life is the thing that relaxes him the most! LOVE IT! Let it load or IT WILL skip…. just leave this page open a minute then play…or go directly to www.prayforsantana.org/watertherapy.mov
This Vlog has nothing interesting to say… just the highlight of our last few days… We were at the vet for around 2 hours and my boys were at each other and I put this on here to show why I beg for babysitters all the time. This is how it ALWAYS is durning appointments. It also shows Santana on the trampoline and sand rail. RARELY do we get sprinkles in the day in Arizona and it cooled us off enough to play outside at the end of July! WOO HOO!
Don’t forget to vote on my poll in the post below. I wanna know what you think of the vlogs! They will get better when I learn to manage my time better!
Hey my lovely people! My Vlog… not so much of a vlog… is exporting… just some video mix of the last few days. Like, the boys on the trampoline, and Santana on the sandrail! And my whiney boys to show you WHY I AM SO DESPERATE FOR SITTERS!!!!
So look for it tomorrow!
I wanted to share this picture one of Santana’s readers made and posted on the new Facebook Group page… Join the group prayforsantana.org That is where most info from surgery/post surgery will be updated. This is just a group… if you join, your profile is still private from me… so no worries. =)
Thanks Natasha for making and posting this!!!!!!
Made by a loyal reader... Natasha! THANKS NATASHA!
Please take my poll on the Vlogs… you don’t have to join anything to do so! Just click!
Follow the story of Santana who fell into a pool at 22 months in the care of a babysitter. By God's grace, Santana survived after 45 minutes of no oxygen and 30 minutes being clinically dead. His journey to a miracle begins December 16th, 2006.
Please help with therapies for Santana to have a better quality of life! It is much appreciated and I pray you will be blessed in return.
Uncategorized | Santana's Mommy | 
July 31, 2010 12:54 pm | 
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