I just need answers!

So yesterday I took Santana in because Sunday night he cried a lot. He also seemed to be in a bit of distress. I thought, with all the congestion, it HAS to be his ears. Plus he would flinch when putting in his ear plugs for his bath. Well, his ears was Clear. GO FIGURE! But they are starting to think that his scoliosis, now at 52 degrees, is causing his ribs to compress down on his lungs. Absolutely NO BUENO! This explains why sometimes he has shorter, shallower breathes. It is so frustrating because while it seems to be cutting off his air supply, we have been discouraged not to put a rod in his back…which we don’t want to anyway. So what are you supposed to do? Just watch him slowly quit breathing? I just don’t know why we don’t have answers.

He will be sent to his pulminologist to see what is going on. Most likely another Sleep Study will be ordered. Oh boy! At least those are nicer than a hotel room. Not your average hospital. But this will be his 3rd one if that is what they choose to do. I really do NOT want him on a by-pap or c-pap machine at night. He has too much going on with him now.

I am so tired and worn out from dealing with all this. All I want is answers. No one has answers on his seizures, no one has answers on why he is so junky, no one has answers about his spine curving every day, no one has answers about his hips being out of socket. Just tell me. If this is what is going to take him down, tell me. I want to know if kids die from these issues that can’t be solved. I need to know. I am tired of researching everything myself. Everything that can help him they won’t allow, such as suit therapy, intense therapy. His body is in too bad of shape, he is not aware enough to participate. I can only do so much therapy myself. I honestly can now see why people put their children in an institute. I would NEVER EVER do it. But living through the exhaustion and negativity, I understand their decision and will no longer question why they do it.

For now, I will keep doing what we are doing. Get him back into chiropractic care and try to maintain him to the best quality of life he can endure.

Thank You East Valley Sol and Everyone That Came Out!

I can not even begin to tell you how much fun I had last night!  That was the first time we have gone, out out, in a long time!  It was so fun, we didn’t get out of bed today except take shifts with the baby whom also slept a lot today! I guess that is what happens when you get home close to 1 am.   For those who didn’t come because you heard fundraiser and didn’t think much of it.  You really missed out!  It was more fun than a club would be for sure!  The band was AWESOME!  The food was YUMMY!  There was MORE than enough to drink on tap.  Plus MY drink of choice…MONSTERS!  It was flat out amazing!  The stuff that was donated blew me over!  How awesome are all those who brought stuff forward to give for the cause of Santana and Luke and other charities!  

To the members of East Valley Sol (Corona Del Sol Alumni’s): Thank you.  Thank you for the time you took away from your families to put on this amazing and stunning event for our families.  Thank you for choosing us.  You guys are a blessing to many and it is unbelievable to see that there are people who really truly do care about families like ours.  

Of all things last night, I was so excited to see Luke.  What an amazing boy he is.  His family is SO special to me and Stacey is WONDERFUL to have access via email because she is great to bounce ideas off of.  I love the picture of Luke and Santana.  Stacey told Luke to hold Santana’s hand for the picture and just look at Santana’s face.  He totally reacted to Luke’s touch!  He has heard the names Santana and Luke in the same sentence a lot since I have found out about the fundraiser so I am sure that was a familiar name to him. If you haven’t already, please visit their site and drop them a line or 2 for encouragement as they have been an encouragement to me.

Santana started crying a lot this evening.  For a good half hour straight.  James gave him a bath and he cried through it.  He got his breathing treatment and passed out.  I am wondering about his EARS!  They have been clear the last 2 times I have taken him in.  But with him being SO congested and snotty, I am wondering if it didn’t back up into his ears. He seemed a little distressed with his breathing tonight also. There was a lot of wind last night as a storm went AROUND us (a lot of wind and dust went through, but it cooled everything down) and Santana doesn’t do well respiratory wise with that junk.  So I really pray he gets over this.

James and I were talking tonight about surgery and stem cells.  We need to wait 3 months or so out from surgery to do stem cells.  So we were wondering if maybe we should put of his surgery for 3 months or so and just go ahead and do stem cells.  Number 1.  His feet are dropped now or 3 months from now.  Number 2, his abductors have been tight since we brought him home.  And number 3, his brain is only going to get more damaged with these continued seizures.   So the logical thing to do is to see if we can stop these damaging seizures.  According to the message boards, there really is only 1 med you have to get out of the country that helps his Infantile Spasms.  BUT… it causes tunnel vision!  I refuse to let any part of his eyes go blind.  Everything in those eyeballs are in tact.  I will not risk the chance of never letting him see again if his brain ever chooses to do so again.  The other option is ACTH which is a steroid and causes him to get all puffy and gain weight.  Hmmmm…No thanks.  So his feet and hips are not an emergency.  We are thinking about maybe putting off the surgery and go do stem cells.  I just pray we get clarity on this decision.  

I am tired and the house is sleeping so I am off to bed.  Thank you all for your support and most of all your prayers and for believing with us.  I really need prayer for the next 2 weeks!  Jett is out of school!  I am not sure what I am going to do to keep him occupied.  Oh, and pray for it to cool down here!  I can’t take this 100 degree weather much longer.  I don’t like Arizona.  I am not sure why we chose to stay here.  Well, our support and friends kept us here, that is for sure!  God Bless you all!

PARTY!!!

I am so excited!  Tonight is a big night!!! I can’t wait.  I can’t wait to meet all you mysterious people I talk to via myspace and email.  HA ha!  Please make sure you come up and get a picture with Santana!!!  I really am going to do a slideshow I am!  I know I promised California.  But I got my exporting issues figured out and will do one!

Jett and Tyree are going to go to my mother-in-laws.  It works for us.  Santana of course will be with us. It is hard to get a nurse in the evenings and there is not too many, maybe 2 that can watch Santana of our family.  But I am sure you all want to see him anyway!

Surgery is rescheduled to October 16th for sure now.  It is amazing we got in the VERY next month!  He only does surgery 2 days a month!  But what is with Santana!  I swear he heard me make that cause then he got all junky again!  Snot and all.  Not as bad as he was, but still!  Pray he stays HEALTHY!  No sickies touching him tonight…PLEASE!!!!

I have a lot to do before tonight!  Gotta run!  Love you all!  AND PLEASE PLEASE PLEASE!  For those of you who choose to drink, please don’t be stupid and drive.  We don’t want to have to do a fundraiser for your family!  Please be wise and DON’T DRINK AND DRIVE!!!  

Babysitter…

So, I am really excited about Saturday night!  PARTY FOR SANTANA!!!!  But I ran into a rut in the road.  I don’t have anyone to watch Tyree and Jett.  I know someone emailed me about their daughter, but I accidently deleted it.  If there is ANYONE willing to help us out with this, we would really appreciate it!

Today, James and I met at the design studio for our house.  I have to say that Jay and Brian at Vineyard Homes are an AWESOME blessing in our lives and are working hard to make Santana’s  (our) dream home!!!!  Steve Simpson and Simpson Design is Brilliant and have put together a layout better than we could imagine!  And Misty at Courtyard Interior Design is AMAZING how she can put together flooring, counters and everything!!!   I can’t wait to see the finished product!!!!

Santana started his new food today, and since I got home about 20 after 5, he has not coughed or gagged once!  Hmmm…hmmmm?  Who knows there child best?  SCORE!

I have a headache brewing so I need to get my eyes off the screen.  THANKS GUYS!  I will see a lot of you Saturday night!!!!!!  

AND FOUND!

I put up posters everywhere and last night we were leaving and guess who was in the bush meowing!  I think someone may have had him and let him out when they saw the posters.  He has gotten out before but never past the walk path and yard.  But he is back.  Awe man.  Just kidding.  The boys were happy!

Where did we go last night?  Well, James took me into urgent care because although I have had many in the last few months, I had the migraine of all migraines that got so bad it was making me vomit.  After my nurse left at 5, I prayed Tyree would stay asleep and Santana wouldn’t choke.  I had Jett next to me playing a game and my head under a pillow with all sound off.  It hurt so bad.  Every time Jett moved I thought my head was going to explode.  Since I took 2 of my migraine pain killer meds 3 hours apart and it didn’t help (rarely it does), James took me in. They did a pain killer shot and another shot for nausea and sent me home with pain and anti-nausea meds.  I have to recheck with my PCP in a week.  They suggest a CT scan. I woke up today without a headache but very weak and lots of nausea.  Don’t know what is going on with that.  Today was just a yuck day.  I really need to sleep it off but I had to pick Jett up from school at 11:30 for half day and had to go to parent teacher conference at 2:20 my nurse left at 4:30 and now I have to deal with it for another 2 and a half hours until James gets home.  Of course I had Tyree screaming, Jett running, the dog chasing and jumping all over, the phone rings and it was a doctor office of all calls.  Right now, I want to go to a dark room with absolutely NO noise and SLEEP!  Pray for my energy!

I called our company that send his formula and they said they saw Santana’s picture with an article for the big fundraiser.  They knew the name and they posted it in the office and it sounds like some are going!  I thought that was so cool for them to support!  

My eyes are hard to keep open, I am so drowsy still and I never took ANYTHING today!  I need to get in my dark place before it comes on again.  PS.  Santana is still junky but doing great!  

Lost…

I feel bad tonight.  I should have never said I wish we didn’t have cats.  Jett and Santana’s cat got and didn’t come back.  At first I was like, one less animal to clean up after.  But then I thought of how I cried my sophmore year when I called to check on some stray cats that made a home outside my bedroom window and I found out animal control came and got them.  And they were not even my cats!  So I feel bad for Jett and Santana.  Especially since Dellucci used to hang out with Santana and lay with him.  

Yesterday was an all around good day!  I went to the gym with my neighbor (although I am paying for it today).  Then Santana’s tumbleform chair came that the Halo Foundation got him!!!  I am pretty sure I mentioned them before.  They help out Near Drown families.  The only foundation dedicated to near drowns.  They got Santana a roll in shower chair (our new house will have a roll in shower in his room) and the tumbleform feeder seat.  They came to meet him last night and they were so very nice.  What a blessing they are!  

Speaking of the tumbleform chair.  I think Santana really liked it cause he was ground level with everyone else.  It was so amazing!  Tyree rolled by in his walker and Santana totally followed his path.  THEN.  I kept calling his name and he got his head to turn back towards me.  THEN.  His dog ran by him and he followed him.  It was so awesome!  

Santana may have surgery scheduled on October 16th.  They just have to check with the O.R. to make sure it is open.  I pray that it is because his doctor only does surgery 2 days a month.  I want to get it over with.  I really want to do cord blood stem cells.  But we will have to wait a while before or after the surgery.  So needless to say, that is not priority right now.  So we need to pray for COMPLETE health on October 16th!!!!

That is all for now.  Santana is still junky.  Hopefully the formula change will help that! 

Oh, and it is NOT to late to sign up for the fundraiser!  I have tickets if you need to get them from me but we have been pointing most people to go register online.  It will be a fun night out!!!!

Oh, and a side note.  For the fun of it I went back a year ago on the blog to see what was going on.  And on the 25th last year I wrote this:

“Thursday is a GI doctor appointment. A doctor that goes to the Oxygen Chamber looked at Santana’s food and saw that there is cow’s milk in it, even though it is lactose free, and suggested getting a formula that would suit him better. How are we to know he isn’t reacting with a lot of mucus from that. So we will see what happens. I also want to get a swallow study ordered too.”

SOME people think I am nuts to think it is his formula and that he is just sick.  BUT I KNOW MY CHILD and I had this issue a year ago!  Why do people argue a mother?! I know my child best. 

Added to the Auction Block!!!!

Can you believe that the fundraiser is here NEXT Saturday? I have had a lot of people say how fun it sounds…but keep “forgetting” to sign up! If you are NOT comfortable signing up online, WE HAVE TICKETS!!!!! You can get them from us! But we need to do it soon so I can get the money to them for the expenses. $35 a ticket or $50 per couple! That is a great price!!!! If you were going out to a club, you would have to pay a cover charge plus your drinks! This includes all you can eat YUMMY Someburro’s Mexican food and all you can drink!!!! You get to jam out to a live band! And bid on AWESOME items such as:

*Dinner for 10 at the new Outback Steakhouse at the San Tan Mall

*$250 gift card to City Hall Steakhouse

*amongst tons of other sports stuff, fitness packages, kids stuff, etc.

There is something for EVERYONE! If you don’t want to bid at least come enjoy the food and AWESOME band! It will be so much fun and depending on how little man is feeling, I will be there with him. For those readers who are not 21 and would love to help….I am in need for a babysitter for Jett and Tyree.

Please help promote this. We have a little more than a week and we want to make it worth the time and energy the EAST VALLEY SOL members have put into this. This is an AMAZING blessing! Tomorrow I will list the things this money is going to so you all have an idea of what we could possibly be so desperate for any type of funding for. You are all a blessing and thanks for the support!!!!

FOR THE LADIES!!!!

Here is a fun way to do Christmas and help out the charity East Valley Sol.  I was really excited she started this because this helps a group who has in turn helped us!!!  Visit www.acosmochristmas.blogspot.com

No Surgery…

So I got a call from CRS (Children’s Rehabilitative Services) this morning and they are canceling his surgery. Because his cough his productive they will not do it. So I don’t know when it will be rescheduled. It is so frustrating. He gets sick so often that chances are he can be sick the next time around. So most likely it could be 3-6 months from now. I JUST WANT TO USE HIS STINKIN’ STANDER!!!!!!!! Needless to say, this call at 8 am has made me grumpy. I need to go find some junk food to eat.

Antibiotic NOTHING…

Well, whatever Santana has going on, can’t be stopped from an antibiotic. I am up at 2:30 am and staying up for a while due to his coughing and the junk following. I have suctioned more in one episode than I have had to ever suction out of him. It was more junk than a child his age pukes. His eyes are watering, his cough is wet, his nose is running, but no fever and his lungs sound clear. But I have a really cheap stethoscope…that would be NOTHING to invest in compared to all his other costs… Not sure why I haven’t. However. He is feeling really bad. Please, Please, PLEASE lift him up in prayer! We may have to put off his surgery. I truly have never seen him this icky. His heart rate is hanging around 165. Pray for calmness and healing in his body!

3 more days until Surgery!

Well, I am happy to report we did get the land we have wanted (yay Jaimee!). But pray we can get the house we need to support Santana’s needs.

Thursday is Surgery day. Coming up quick. He has been junky, but what can I do. Hopefully he will be well and healthy enough to press forward with it. We don’t have much going on until then. The good thing is we got set up with music therapy and a new Occupational therapist (since ours left to go work with the school system). I am excited about that. It only took like 3 hours after an email went out that we got set up. That is a blessing. Only parents in the system can understand…it is usually a long wait!

Oh by the way…have you signed up for the fundraiser? If not, you will miss out on a lot of fun!!!!