It is what it is…

And Surgery it is. I am ok with that. I rather just get it done. The weird thing that happened today is when we got to Santana’s appointment and took his AFO’s off, he had a HUGE welt. It looks really bad. So basically his AFOs are no bueno. They didn’t think Botox was for him and surgery it is. I don’t like the things I have read about botox and it didn’t work on him last year anyway. Now I am just PRAYING that we have a stander by the time the surgery is recovered so we can keep him in position. Without that, we are going to keep dropping and getting back to square one. Surgery would probably not be an option if they would have approved the stander back at the end of ‘07 when we got fitted for it. At his point he has grown so much! His doctor could not believe how tall my little man is getting. She basically said that he is going to be a tough one to be lugging around. Oh no my friend…he will be lugging himself around!

I was at the other house doing laundry till 1 am last night and I was really sad to see the empty house. I just laid my hand on Santana’s coloring and cried. I couldn’t help but picture him running around that house, jumping off the banister onto the couch, going upstairs getting his blankie and coming down to the living room and pointing up, knowing his bed was above us. He just wanted to lay down and go to bed. Now all he does is lay in his bed all day (except when I have him on the weekends to myself). How depressing to sit in that quiet empty house and hear his little voice ringing in my head. After cleaning I sat on the stairs and had a little heart to heart with God. I was so tired waiting for my laundry that I laid down and prayed, and cried. I don’t think ANYONE knows how much it hurts to leave that house. I don’t think the people who bought it, or basically stole it from us knows the sentimental value of that house. I was pregnant with Santana when we moved in and I saw him grow into this beautiful boy who melted your heart with his dancing brown eyes and his beautiful smile, then I saw his fall in that house. I saw him go from that ear to ear smile and when brought home from being gone 6 plus weeks, I see a blank stare. Maybe leaving this house gives us closure. I don’t want the memory of him to fade, but maybe getting away from those reminders of how life used to be may be best for our mind. Not to mention, we just could not live in the living room like we are for much longer.

I have a TON to do at the new house, but I need to relax tomorrow as much as I can. HA HA! Whatever that is. Not to mention that I am SO sore. My arthritis is hurting me really bad. I feel like my right leg is 18 inches longer. My hip joints hurt so bad. A lot of it is because I have been too busy to stop and take my arthritis meds. But I am sure all the lifting and what not hasn’t helped either.

Oh, and how great is this! Santana has not gone to school yet, due to his ear infection and his appointment today. We saw his bus go to the other house (that shows how close we live) even though we canceled it. I told them the new address the week before school started. But instead of telling me then that I needed to fill out new paperwork, I found out today…even though they took my address over the phone last week. The bad part was they told me I had to take him to school because once they receive the paperwork it could take 5-7 days to transfer. So dumb. If it wasn’t so hot I would just have my nurses walk to the other house, but that is not right. The school said I need to bring him. Well, that does not work since his school starts at 8 and Jett at 8:30. I think I may just skip it. It is a joke anyway. It is too bad because I really liked his teacher and she seems to have experience with kids like him. But apparently, it will be a few weeks before Santana actually gets to start. VERY UPSETTING!

I am beat. I still have a lot to do. I have been all over the place this week and the biggest hold up was having to take him in for his anti-biotic shot the last 3 days. So EXHAUSTING to go out and about. But with the ketogenics diet, we are limited to what we can give him. Speaking of the diet, I think it is not doing him any good at this point. Not when he has seizures that are worst then we have ever seen. There has been a few times where we have had them for up to 3 minutes. NOT so good.

My life is hectic and all I can do is wonder why God doesn’t respond to our cry for help. It hurts the most when Jett is praying and he is begging God to allow Santana to play with him again. A child is having to learn patience. It does not make sense. But it is not for us to understand. So, while I do cry in sadness that our house is no longer ours and Santanas coloring still on the wall (really wish I knew someone who did drywall so I can take it) and I will not be able to lay my hand on it and think about what a stinker he was… I will still wait. I will wait upon the Lord, MY GOD until I understand why my boy was ripped from his happy go lucky life. I lift my hands up and say, “THANK you God. I don’t understand you AT ALL, but I trust you! I believe you are using Santana for a bigger purpose! I know that one day I will shout I GET IT NOW!” I believe his promise is yet to come. I will wait. I will pray that I do not grow weary because I have about lost it already. I will cling unto the hand of Jesus and say THANK YOU in advanced. I will NOT be defeated because I am not a victim but a VICTOR!

We Survived…

What a long week it has been. I am lacking lots of sleep and just want to curl up in a dark room for a few days and catch up! Thanks to everyone who helped us on Saturday! You guys ROCK! I can’t believe we got so much moved before we had to return the Uhaul at 9:00 am. I certainly could not have done it if Amber wouldn’t have come to work and keep an eye on Santana, and then some. You don’t realize how much junk you have until you move. We dumped truckloads to Goodwill. I am exhausted and am still cleaning over there. I would have a lot more to do if my WONDERFUL neighbors, Karen and Regina didn’t come to help. Thanks guys! It is always humbles me to have someone help clean my house.

Our rental house is not looking bad at all. It works MUCH better than our tri-level house. We have no Stairs and Santana can be put anywhere we are now. I LOVE IT! The AC isn’t working well so it is a bit hot, but the living situation is MUCH better. It feels good to downsize and get rid of junk. It feels like FOREVER until we get our house built… especially since we do not have the layout drawn out yet. But I am sure with all the meetings and what not it will go by fast.

I haven’t talked much about our plans for the new house, but lets just say… You don’t need a Television Network to do a feel good story about helping a family out and building a house that fits their needs. It is not free, but there is a TON of help being put into this. As long as they are not dipping into their own pockets, we are getting as much help as possible. They don’t want the attention… at all. But I have to thank Vineyard Custom Homes. I can’t go on without saying anything. Jay over there is incredible and has a lot of the sublets jumping on board. The only issue we run into is that a construction loan is MUCH different than a home loan. We need A LOT to put down up front and the sell of our house did not get us there. We just pray that we can come up with the payment. We have less than 30 days to do so or we lose the lot we put some money down on and absolutely fell in love with. Not to mention, it is like 1/4-1/2 mile from horse therapy (for when we get to that point after surgery). Just pray that God opens up doors and allows us to get this going so we have a house that fits our needs better. I call it the Santana house. It will have a therapy room, but most important, his room will be attached to ours with a sliding wall so we can shut it when the nurses are here and at night he can seem like he is still right there with it open. NO MORE BEDS IN THE LIVING ROOM! 19 months living like that is getting old. We can move on and make life normal again. I am praying that before this house is done, he will be swallowing better, or should I say, at all… and we won’t have to worry about 24 hour suctioning! I can only believe at this point.

So, tomorrow is a big day at CRS for us. We are deciding if we should do botox or surgery for his ankles and abductors. I say BOO to botox. Not a fan and DO NOT LIKE the things I have read. My therapist I think agrees with me, but he can’t push me one way or the other. They can not persuade a family what to do by their opinion.

I got to go get Jett ready for school…oh yeah, WE ARE BACK TO SCHOOL! YIPPIE! But Santana did not get to go yesterday, he woke up with a puddle in his ear, yes, another ear infection. So he gets to miss the first 2 days. LOVELY!

Keep praying and believing! Don’t forget to pray for his SEIZURES!

Busy!

So if you don’t hear anything from me in the next couple of days, just know that we are SUPER busy. We are moving on Saturday and the biggest dreaded thought about it is that it has been so stinkin’ hot and sticky here. Usually we are pretty dry. I would take dry 115 degrees over this humid 107 ANYDAY! But we are starting at 6 am so we pray we get most everything over there before 1. It is the next street up so it should not take too long. I have been up to 2 am the last 2 nights packing. What would I do without my purple Monsters? The only thing that keeps me going. I gave up my favorite, Pepsi and soda. Thank goodness I did not add Monsters there. I would not have done all this without em!

Tomorrow we go to Hanger to fix Santana’s AFO’S and pick up his TLSO that had to get fixed to form his body better. Once we get the stander, we pray that will help him get his feet stretched out. Then next week we see his Medicine/ Rehab doctor to discuss botox and what not. We raised his baclofen back up. If you remember, we lowered it last November thinking that was possibly what was causing seizures. I rather be done with it all…but no such luck. I know, I know. TIME.

Oh, I meant to tell you all a few days ago. When we went to pick up Jett from his cousins, there was a FULL rainbow. Do you know how comforting that was? God was showing me his promise still stands.

Yesterday we met with our architect for the house. It is exciting to think that Santana will have a nice big room with his own wheel chair accessible bathroom (knowing that one day we can switch all that out) and the best part is the THERAPY room! We may include that as half as his room and do like 2 master bedrooms. I am so excited that we can start living in a better situation and pretend like life is normal…what ever that is.

Anyway. I have a lot to do…switching utilities, finding a cheap washer and dryer for the rental house, and PACK PACK PACK! We can still use all the help we can get! Even if it is entertaining Jett the next few days. (his stuff gets unpacked faster than I can pack if you know what I mean).

Oh, and pray for school for Santana. They are trying to say Santana can’t have his nurses and I DO NOT feel comfortable about that. Not with his brittle bones, hips out of socket, increased choking spells, and seizures. I think NOT. Plus, if they use only the classroom nurse. That means I have to get Santana and Jett BOTH ready for school and that is too much with Tyree getting into EVERYTHING. So, I may make the decision to pull him out. It is not like he gets therapy there anyway. They just need to know that if ANYTHING happens, they would be liable and I don’t think Santana will get the 1 on 1 attention he needs to prevent any accidents. Pray harder that he gets into Foundation for Blind Children. He is next on the list. Pray they either get new teacher or someone drops out of the current class. I really want him to go there!

Thanks and don’t panic if I don’t update for a while. If I do, it will be something AMAZING or something…ya know.

He’s My Son

It is almost 2 am and Mark Schultz says it best in his song He’s My Son: (song is playing…turn speakers on if you want to hear)

I’m down on my knees again tonight
I’m hoping this prayer will turn out right
See there is a boy that needs Your help
I’ve done all that I can do myself
His mother is tired
I’m sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he’s not just anyone
He’s my son

Sometimes late at night I watch him sleep
I dream of the boy he’d like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He’s so tired and he’s scared
Let him know that You’re there

CHORUS

Can You hear me?
Can You see him?
Please don’t leave him
He’s my son

Stop This World! I want off!!!

So… today I get a letter from United States Department of State stating that they are denying Santana of his passport because of his imperfect picture. His face was not facing front and center enough. When you have a special needs child…what do you expect? His neck is tight and pulls a bit to the left so I can’t help that his head isn’t straight and center. So basically I paid an extra 60 bucks plus the overnight shipping both ways for NOTHING! And they won’t do a thing about it. I was really frustrated because it was the post office that took the picture. You would think they would know the rules. What a shame.

So because of a few lame incidents, I am taking that as a don’t go do it for what ever reason. I will not shove the door open (that was once wide open) because it seems to be sealing shut. So again. We do nothing.

So needless to say. I am OVERLY frustrated and can’t get anything done. So I am putting this out there. Anyone willing to help us out with our move this Saturday…we can use it!!! Just call or email me. If you don’t have much to do this week I can use all the help I can get with packing too!

On the upside, we met on our property with the builders to talk about the land and what not. It is something to be excited about. But it is still hard to think about leaving this house that Santana was running around in. But it is time to lay that to rest and move on. This is our life now. This is how it is. So now, I try to excite myself and think about living life in a more normal way in our new home.

It just doesn’t stop…

As we all know, Wednesdays appointment was a total stinker. On top of that, today, the Phoenix Suit therapy guy came to the house to evaluate Santana to see if he would qualify for intensive physical therapy. Well, tell me this… how are you supposed to make things better if he gets DENIED everything!? I am grateful he was so honest with us. Most therapist would be all about the money and not care. So I appreciate his integrity and it shows he is all about helping the kids. But what a bummer for us. I don’t even know where to start… or continue with Santana. Not to mention, the Orthopedic Doctor warned us that he can fracture bones really really easily so we need to be very careful. That makes me nervous to do anything.

So basically NOTHING is falling into place like it was a few weeks ago or so. So now I wait. I just let him sit there and we do what we can do with him. Which, in 18 months, has not got us anywhere. So… What do we do now. His minimal therapy at home is all we can do. There is so much out there but insurance don’t pay for squat and we are limited. When we do get his stander, it won’t do us much good at this point because his body has gone down hill so much in the last 2 months. So at least when we do get it and we get surgeries and all that fun stuff, we will at least be able to maintain him better. But maintaining is not what I want. The Captain in Wall-e says it best and I am rewording it for Santana, “I don’t want him to survive, I want him to LIVE!” I don’t want to maintain him, I want to get improvements.

I am just frustrated and have so much to do with no energy. I am not sure what choices to make with him. Everyone has a different opinion and I try to go with my gut feeling, but it is hard to sense when we are pulled in many different directions!

On a lighter note, we are still looking for donations of any items to auction off at the fundraiser. If you know any local news or radios hosts, please give them Nick’s contact information. Thanks Metal Asylum Kustom Finishes for donating a custom paint job for someone’s motorcycle/chopper! See, this even is for ALL types of people and we accept ALL types of donations! September 27th is coming fast…So SAVE THE DATE FOR A ROCKING GOOD TIME!

You Raised Us Up!

Wow. I can’t thank you guys enough for the encouraging messages and emails. I let you deep into our life by that last post and I will give you a bit more. Last night, James, Jett and I were eating dinner and like it was on cue, we all just started crying. Not a word was said, just the tears started to flow. I felt so bad for Jett. But it was kind of cute, this morning he rolls over and says, “why were we crying last night?” So he was going off us, but we loved on him and just got close and poured our emotion out together. Today, I took Jett to see a movie and play some games to spend some time with him. Tonight, James took him bowling. We kind of laughed because Jett and I have been on more dates than James and I have in the last 18 months. But Jett needed that 1 on 1 time. Not to mention he has been bored to tears and I have had lots of appointments. I feel HORRIBLE for him! But he is getting his time now. He and we are doing much better. I am enjoying peace as Santana and Tyree is sleeping and waiting for my brownies to be done. =D (can you say stress!)

Lots of stress to say the least. As of yesterday, we have 10-12 days to get out of here and had no rental lined up. Our situation is tough to find the right place. But the very first one we tried to get a week or so ago, but fell through due to someone wanting to purchase the house, opened back up and we are locked in. PRAISE GOD! Jett can stay at his school for 1 more year before we move 6 miles away in about a year. That took a big hunk of weight off my shoulders. Now we just have to get our blue prints done for our “therapy” house and lock in on the loan. Once all that is all good, I will be feeling much better!

You guys are so great. I can’t thank you enough for what you all have done for us. Without you guys supporting Santana, we would be lost. I try not to mention too much specific details on doctors, nurses, and therapist, but I have to put a BIG THANK YOU to Santana’s nurses! They have been so good for Santana and the family. I love them so much and it is great to have them around. I feel bad that they have to put up with my moodiness on my BAD days. Santana loves you guys so much! Thank you so much Jackie and Amber! You guys are so wonderful and I thank you for all you do!

I smell brownies and I can’t think straight now. But know that we will be okay. We just need to get through these few steps back and pray we are flung forward in a great and mighty way through Christ, My Jesus!

Forsaken?

Okay.  So how do I say this without getting nasty comments from those who don’t understand what it is like to have a disabled child? 

 Let’s start by saying that todays appointment was the worst one we have had.  His spine is now a 47 degree curve where it was a 41 degree curve and stable at that.  His Hips are COMPLETELY out of socket… look towards the bottom of the picture, click on the picture to see a larger version.  Not only are they out of socket, but he has a pelvic tilt and his pelvic bone is worn to where his legs are digging in now.  So if his hips were fixed to go back into place, there is not enough bone in the pelvic to hold them there, they will slip.  They said they can do a release to loosen up those muscles.  He is so tight his legs are crossing over like scissors.  His ankle cords are so tight that his feet are dropping again.  So basically there are 4 places that they can do release surgery.  But putting him under is really not what they want to do.  So they want to pump up the baclofen (medicine that loosens him) and sit and wait.  I don’t like that idea either.  I want the microwave version, let’s get this fixed so we have more options with therapy!

Which brings me to something that has been on my mind.  I talked to James a while about this today.  What Santana is going through is NOT fair for him.  He is in SO much pain.  His bones can easily fracture so it makes me nervous to do anything with him.  He is so tight and is crying frequently.  It breaks my heart and it leads me to the thought… WHAT DID I DO TO HIM?  I made the choice to keep him on the ventilator when I could have let him go and run free.  He could have been whole and happy and running free in heaven, face to face with Jesus.  But I kept him here.  I kept him in this pain.  I kept him from playing with his brothers.  It is so frustrating!  It is not at all a burden to us.  We would do it EVERY day for him.  But it is NOT fair that we left him in this pain.  We gave him a teaser of heaven for 30 minutes and brought him back.  Do you know how hard it is to be with your son who used to have the MOST gorgeous smile EVER, and NOW he has NO expression.  Imagine not ever knowing if your son is comfortable or happy.  Imagine not knowing if he even knows you exist. IMAGINE THAT!

So basically we wait and watch his body become more deformed to the point if his mind were to ever come back, he couldn’t function anyway.  Why won’t they help me!?  You know why.  Because they don’t see a future for him!  Why waste the money to fix something that can’t be used anyway?  They gave up on Santana.  I allowed him to live this this AWFUL life by choosing him to fight above the machines, so I WILL NOT GIVE UP ON HIM!  But without the support of the people who can help him, how can we get anywhere?
“As I was with Moses, so I will be with you; I will never leave you nor forsake you.” - Joshua 1:5

What works for some… doesn’t for others!

So… we were doing GREAT with the ketogenics diet (high fat little to no carbs/sugars) which is supposed to stop seizure activity.  He had very small break through ones, really it just looked like he lifted his hand and looked up.  But needless to say, they have gotten worst in the last week.  The only thing I could link them to is Hyperbarics Oxygen Treatments.  I really do think this helped him, but if you read this link you will find a lot of similar stories that are like what we are dealing with. I am not AT ALL against HBOT. But we did NOT have seizures until we started this May of ‘07. I linked it to the vibe therapy that we did with our chiropractor since that gets your cells moving at a faster rate. I had stopped that last November. It was almost like the diet cleared him out but I feel like I just ruined the whole theory now that we are back to having those nasty seizures. The neurologist put him on a higher dose of Topamax, also known as DOPE-A-MAX. But we have an appointment coming up to see him.

Speaking of that appointment. Because of it, we have to move stem cells back. CRS said his next appointment will be on the 7th. That is the day we were supposed to be the day we returned. So now things may be put off for a while which bums me out because I wanted to get going on intensive physical therapy. But it is not my timing… I do know one thing. There is a big chance that it will help his seizures and then we can go back to HBOT later. But one thing at a time.

Tomorrow is Orthopedics. I am so looking forward to this appointment! I can’t wait to see what they want to do about his hips and feet. I am pretty open as long as they DO NOT mention the Baclofen Pump. No thank you!

Today we have the home inspectors here. We have 15 days to get out of here! I am busy busy busy packing up. We still need to find a rental. The good thing is that we are on our way to getting the lot we wanted so we can get that going! God has been so good and things are just falling into place.

Pray for our appointment tomorrow! Pray that we can get another appointment for stem cells soon! Pray for seizures to seize! And continue to thank God for the Miracle in the making! Believe!

Last thing!  If you know of a business that is willing to help by donating services or items for the big fundraiser, Fiesta Del Sol III brought to you by Someburros Mexican Food! Please email me or Nick… see last posts comments… Anything would be appreciated!  There will be many athletes autographs and sports items.  If you have anything like that and willing to donate.  Please contact us!  

What day is it anyway?

You probably won’t read much from me in the next month. I have been crazy busy! I am thinking I should cancel HBOT because we have so much going on and it takes up 3-4 hours of my day. And time is a ticking. I have been organizing all day so the pack will go smoothly. My stomach is turning hoping that everything goes as planned. We did find a piece of land we put a bid down on. I pray we get it. We met the neighbors and everyone was so stinkin’ nice. It looks so much fun to live there. Further than we wanted to be, but the best we found.

Today I took Jett, his friend, and Santana to Peter Piper Pizza. To kill time while they were finishing up the tokens, I bought a dollar worth for Santana to try something (since he slept the whole time before this). There was a slot machine type game that you pull the lever and hit the stop button. I was not paying attention to the numbers, just on helping Santana do the game. He hit 200! Then we did another one where the ball drops into a whole. 75 more tickets. Then another one he got 10 tickets. THEN his luck got better because when the ticket machine added them up, he had a total of 359 tickets! Not bad for 1 dollar. We could have gotten something really cool, but Jett already spent his on a bunch of little things. So I got Santana one of those sea urchin balls. They are Great for textile therapy. What great luck Santana has!

Speaking of luck! You can come try your luck at the fundraiser, Fiesta Del Sol III brought to you by Someburros Mexican Food! There will be LIVE AUCTIONS, SILENT AUCTIONS, and RAFFLES! Listen to LIVE BANDS! And roll the dice! That is right, there will be casino tables. All for the cause of Santana and Luke, and other charities!!! Below was a comment that was posted by Nick, who got us set up with East Valley Sol…

Hello, this is the Nick that Lindsay has mentioned in a few blogs. I along with Shawna Reeves (she set up Barros and the DBacks night) are members of the East Valley Sol. Our event will be September 27th at Tempe Diablo Stadium. Lindsay will have the letter, sponsorship levels and memorabilia request form soon. Stay Tuned.
If anyone that reads this has questions about the event or our organization you can contact me directly at 602-689-2134.

Speaking of Nick, we went to his house to hang out and BBQ with his family on Saturday and had a BLAST!!!!  It was so good to get out with all the kids and be as normal as normal can be!  Thanks for having us guys!

Santana’s seizures are still present.  It bugs me that he did so good on the diet and then it wore off in a blink of an eye.  I just don’t get it.  I guess I am going to have to give his dietician or his neurologist a call tomorrow. UGH.  I was going to call anyway and let them know that I am doing stem cells, but I have dreaded hearing their response.

Wednesday we have Orthopedics!  Santana is really needing this appointment.  His AFO’S (Ankle-foot orthosis brace) don’t fit, his TLSO (Trunk Lumbar Support Orthosis) digs into him and causes break down.  His spine is twisted more, and his hips have to be what is causing him to cry anytime you move his legs a certain way.  He is in great shape!  I am nervous to what they want to do to him or what they will say.  But he needs help really bad.

I am exhausted thinking about the list of things I have to do.  Please keep in prayer that we get the lot we desire to build the house for Santana…which is another big thank you blog, will keep you posted on that later!  I just have a lot to be thankful for, that is for sure!  We are blessed!  Pray for Santana and his little body.  Pray we get his passport…his passport to new beginnings!