Drugged

I keep thinking, I need to blog.  But I just haven’t felt like it.  But here I am again pouring my life out to complete strangers.  Complete strangers who have been AWESOME supporters.  If I haven’t thanked you.  I mean it.  Every little comment and email means so much to James and I.  So THANK YOU!

It has been a crazy week.  I had to take all 3 kids to the doctor  Tuesday.  Tyree had 15 month check up (although he is 16 months) and Santana had his 4 year check up.  Tyree was lucky to get 2 shots when poor Santana had 4.  He cried.  We had 2 crying and one saying…mom…mom…mom..can I?  Can I?  That would be Jett.  I took him in because he has had a chronic cough since December.  He sounds like Santana just before Santana chokes.  He gets an ANTI-BIOTIC and something else that helps with cough.  Tyree left with a cream and an anti-biotic as he got MRSA (staph infection) which starts off looking like whiteheads.  But then he had 7.  So lots of hand washing around here!  Santana was doing great.  But he felt a little warm in the night and he has thick junk…AGAIN!  One of his chiropractors had him all cleared up but we hadn’t seen him since Friday and then Tuesday the junk came back.  FRUSTRATING!  

We only have a week and a half to clear him up and get him well.  We need prayers poured in!  I can’t believe stem-cells are right around the corner!  It was very hard to seal up an envelope with that much money!  Especially when it is a craps shoot.  You don’t know if it will work or not.  But… I know that God  is the one in control and I believe that he will put it where it needs to be.  He will allow this to work IF it truly is in his will.  But good and perfect health is in the will of God so I believe he is giving these doctors wisdom for this.

These picture are meds meds and more meds!  The one with ONLY 7 is the one I came home from the pharmacy with on Tuesday night.  It includes Jetts and Tyree’s.  I was so disgusted about it I had to take a picture then I decided to take one of Santana’s daily routine.  It is A LOT and it is missing 2 of his meds.  How crazy is this?  I dread doing meds at night.  When I am not tired I can get through it pretty fast.  Other nights I feel like I am cross eyed.   I am hoping these can ALL go away someday.  Especially the seizure meds!  Oh, sorry the one is sideways.  I am to lazy to bring it into photoshop and rotate it now. But you get the idea…

I have a 6 year old tugging at me.  I got to get my day rolling.  Thanks for the continued prayers!

Rant-n-Rave

We had a great birthday party!  It was fun to get out of the house.  Although, the park was a bad pick because the ramada was too far from the playground.  But we were by the grill and that is all that mattered!  It was a nice warm day for it!  

Speaking of being outdoors.  I have been searching and searching for some adaptive outdoor play for Santana but not having much luck for his case.  Even if it was something that Jett could get involved and help him out with.  I remember reading a LONG time ago a bike type outdoor car that was built for a paralyzed guy and I can’t find that anywhere.  I think it would be fun to have Santana outdoors with Jett playing more.  

So pulmonology appt.  We were given an anti-biotic.  Are these doctors going crazy?!  He is going to have C-Diff if they don’t stop prescribing this crap.  But this is one he hasn’t been on in a while blah blah blah.  So we will try it.  He thinks maybe the milk too.  So…anyone know where I can get allergy testing done?    I want to see why he has constant congestion.  The doctor said he could run a camera down and see what is going on.  But that is the last thing they want to do.

I will say, he had a VERY clear weekend.  I really think God put me in the right path when it comes to the chiropractor.  Dr. Warkentin has been doing the cold laser therapy on his bronchial tubes and I think that is why he may be getting clearer.  So he has only had 2 treatments so maybe with time this could help.  I really pray it clears up before Los Angeles so I don’t have to worry about having someone with me while driving.  Maybe he will control his secretions by then!

I can’t believe it is 2 weeks from today almost to the minute we will be saying see ya soon to Santana as they put him under for stem cells!  I do worry about not being in there with him.  But I BELIEVE there will be great progress from this.
We really really really need prayer in the State of Arizona.  While I was never a huge fan of Governor Janet Napalitano, I wish Obama would give her back!  I am VERY disappointed in Jan Brewer who took over.   She made the decision to cut 0-3 early intervention for special needs children that are not in the long term program.  How DARE someone take the right  away from these children who need a better quality of life. I want to march up to her office with Santana and show her what she could be causing.  If these preemies don’t get help right away.  They could be like what Santana is now.  They need the proper care.  Not to mention they cut music therapy pay by 55%!  If I was a therapist, I would quit for sure!  It seems like such a minor senseless therapy but Santana really looks and is attentive during music.  Ho can they take that away from him?!  Please…pray for DDD.  This is not fair.  I can’t believe a REPUBLICAN put in charge of our state would do such cuts as if our children were diseases to her.  Pray for a change of heart.  Pray that there are no more cuts in the system and pray for the school programs for the special needs because we know the schools are looking for money and we do not want them to find it by taking our children’s programs and well being away from them!  UGH!~  I feel better!

Thank you all for the birthday wishes and prayers!  We really appreciate the positive you guys send our ways and thanks for holding our head high when we don’t have the strength!  

OH wait…  I almost forgot!~ Santana has a lot of blood in his drool this morning.  I am not going to be too alarmed until I see more.  Pray for whatever that is. WE NEED A HEALTHY BOY! You do not understand how important it is for him to NOT BE SICK when we do stem cells and thereafter.  PRAY PRAY PRAY!  NO MORE SNOT!  NO MORE FEVERS!  oh..you can pray for a smile too.

Prayer Focus…

Santana can NOT be sick when we do stem cells.  Otherwise, the cells will go and heal the virus and not go to where it needs to go.  So needless to say, when I was putting him in bed last night, I thought he felt a bit warm.  Well…102.7 warm.  So whatever is going on better get out before we get to Stem cells.  Plus..he can not be sick 4-6 weeks after stem cells.  So I will be VERY strict with him like when we first brought him home.  Time to get some masks and extra Purell!  

We go to Pulmonary today to see what is going on with him.  He has had excess green junk for almost 2 months now.  The dr. in Florida said if she was our ped. she would get sinus xrays.  So that is that.  I can’t wait to see what they want to do.

So pray he doesn’t get sick right before!  We need a healthy boy.  I rather him get it out now since we still have a little over 2 weeks.  But we need to pray the cells attach where they need to in the brain.

Today is a busy day.  Horse Therapy, Chiropractor… which is crazy how he is responding to the cold laser therapy now.  Dr. Warkentin did it on his chest where all his congestion is and he was clear for the night…not as much now.  So  we will see what happens!

Saturday is his park birthday!  It should be fun!  Nice to get out and about.  Pray for good health!

Happy 4th Birthday Santana!

Wow!  4 years ago I had the WHITEST white baby! (Jett was really dark)  In the hospital he used to “sing”  all night.  It was a beautiful humming noise.  But so loud I had to have them take him to the nursery so I could get some rest.  He brought such joy to our lives.  Jett was one proud big brother.  They did everything together.  Baths, tear up bean bags, jump over the banister onto the couch, play outside on the power wheel.  Santana was born with a lot of curiosity and got into EVERYTHING.  He would look up with his big cheesey smile and all you could do is smile back and let it go.  Very rarely did we see Santana throw a fit!  He melted my heart.  He still does.  

For his birthday, I got him a musical card that sings Tim McGraw’s Just to see you SMILE.  It was for a wife…but I used a sharpie and wrote son. The part of the song that is on there is:

“Just to see you smile
Id do anything
That you wanted me to
And all is said and done
Id never count the cost
Its worth all thats lost
Just to see you smile”

THAT IS IT!  But it’s not my birthday…it is his so he can do whatever he wants!  Saturday we are having a picnic at a park.  We were going to put an open invitation… but we can’t afford all the food…  But someday we will have a giant party for him.  

Monday Jett had the day off.  This was the day we originally had set for stem cells…. this time around as I had cancelled so many times.  But Jett didn’t want to miss school on Tuesday.  So we were all going to go to Peter Piper or something…but my nurse called in too late so it was too late to get my primary nurse here as she had her own appointment.  So Jett got to go with his cousins to see a movie.  I did some more organizing and then took a nap with Santana when Tyree laid down.  That was nice.  But I wasn’t feeling so great…at least I got to relax.

Yesterday we jumped back into a busy busy day.  Santana had speech at home overlapping with the nursing companies RN coming out to check him out and take down any changes.  Then we loaded up to go to Hanger to get his TSO fixed so he can wear it again.  Oh…I forgot to mention…Jett was home sick so I had to drag him with us along with Tyree.  But what could I do?  Oh…please note…he didn’t want to miss school so we switched the stem cell dates…yesterday was the only day he would have missed.  Anyway…  then we went to the chiropractor.  When we got there, I leaned him up to sit more and I expected him to tilt towards me when I leaned back and he stayed.  He held his head completely on his own without me putting it there to try!  It was for a few minutes and it was really good!  Dr. Warkentin got to witness that and we were all amazed!  It was so random and on his own so that is what was really exciting!  Then we went back for an adjustment and cold laser therapy.  I haven’t seen him personally since we got back from Florida so I filled him in on the blood flow.  He tried some different areas, as Dr. Prisbrey has also.  This time was different.  When on the right side, Santana rotated his shoulder on his own.  It was AMAZING!  His hand was moving like crazy and his little fingers.  Then we went to the left side of the head and he had a lot of movement.  He had a lot of sound and he had a look like, “WHAT IS THIS?!”  It was so good!  

When we got home, his nurse had him on the floor working on his head control and he did it again!  He was just awesome yesterday!  With today being his birthday… I believe there will be more awesomeness to come!

I talked to SRI yesterday for final details of stem cells.  We are not going to do the typical injection.  We are going the route where they stick a catheter in the artery and run it to the brain and then inject the cells.  This will take them right where they need to go.  I am so excited about this!  The only thing I have to change is our hotel room.  I need to find a 2 room suite because I can’t see Tyree going to sleep when we are all in the same room.  That could be an equation for NO SLEEP.  So I gotta get that changed.  It is just pricey.  Normally not so pricey… but I have to find a hotel for 3 weeks in May.  THAT is PRICEY!  

CLICK ON THIS LINK

The link above is a 60 minute story from New Zealand of a 2 year old that had stem cells done the way we are going to do it.  I wish there was more time post stem cells to see the kid…but for only 8 weeks, it is awesome!  Plus the mother says what I always says…if it can take away his seizures, the rest is just bonus!

So lets cross our fingers and pray for the best!  we are less than 3 weeks away from that!  

Happy birthday Santana!  We love you and many are pulling for you!  SMILE BOY!

I will see you again

Happy Heart Day everyone!  I have the best 4 valentines that anyone could ask for!  My boys have my heart for sure!  James and Jett are at work today.  The funny thing about it is they are ordering in Carlos O’Briens Mexican food.  Funny because 9 years ago is when we got engaged.  Carlos O’Briens is where we ate!  Wow.  When I made that commitment to James I NEVER thought this is our life.  9 years ago I didn’t even picture us with kids.  Especially since there was a HIGH chance of James not being able to ever have kids due to a surgery or something.  So here we are with 3 amazing boys who can carry on the Black name because they are the only next generation Blacks.  

As I was playing iTunes and listening to my music while doing taxes, I ran across the first song that plays on this site…as of today…we all know I change it depending on my mood.  The lyrics are below.  I always said that I wanted to make  a slideshow to this song so if ever anything happens to me it can play at my funeral.  Who would have thought that it is my son who was born not long after I first heard it, would be the one I think about.  I actually did a short film when I was doing filmmaking with this song set as the theme.  It didn’t turn out like I wanted.  But I LOVE THE SONG and the videography was pretty good for students.  

Anyway.  I listen to this song and think I may not have the smiling Santana I had almost 26 months ago…but I will see him again.  I will see him in eternity and he won’t be suffering like this anymore.  He won’t be in any pain.  He is free there.  This is the Santana I have now.  I know that smile is running around somewhere waiting for me when my time passes.  I can’t wait to hold him and run with him.  I will see him again.  I don’t understand in this life.  But maybe someday I will.  Someday it will all make sense.  I don’t think in this life.  I wish…but I don’t think I will understand here on earth.  I just have to learn to accept that and let go.  It is so hard though.  My fingernails are dug into the thought of my boy coming back to “normal” I fear that if that thought gets pulled away, I will scratch and tear into what I wanna believe.  So I continue to hold that thought as if I were a little kid grasping onto her teddy bear during a storm.  I will hold on to my belief…but one side of me knows I need to let go.  So with that said.  I will do what I can do…but I give him away.  He’s not mine to hold on to.  But I know that I will see him again…

I will See You Again
Joel Engle

Verse 1
I don’t understand, why you went away,
I don’t have the words that I need to say
I can’t seem to find all the answers now,
How the darkness falls down on me like rain
There’s a light that shines with His love and grace,
For my Jesus holds you in His mighty arms

Chorus
I will see you again, in a place that has no pain,
I will see you again where there’s no
More sin and shame, there’s no more tears to cry,
No more questions why, someday on
The other side, I will see you again

Verse 2
Though you’re silent now,
I can almost hear you sing,
Joining with the angels bow before
The King of Kings,
And even If you could,
You would never leave

Bridge
When this world of uncertainty and change,
There’s a hope that stands the test of time
For God so loved the world that He gave His only Son,
That we would never die

Chorus

Baby Steps

Okay…I need to get my complaining out of the way first cause I have more good.  Yeah yeah…I know.  But Santana’s dumb feeding pump!  I get up at 6 am and it says he has gotten 408 ml…which is his dose.  The problem?  The 500 ml bag was still filled to the top!  AAAAAAAAAH!  I am so annoyed.  It should have beeped at me!  But it didn’t.  So I quickly got another bag and threw a can in and am doing a dose cause he needs energy to go ride his horsey!  Poor little guy.

So We had his IEP meeting yesterday.  It was kind of funny.  The therapists go around and talk about goals and where we should go with them if Santana has not reached them.  There was like 3 times they said he hadn’t done such and such….until THIS week.  So yeah.  It has been an amazing week!  

To start… would be Santana doing his sign with Jett and sticking his tongue out on command.  WHICH he did again for his nurse on Tuesday while he was in the stander!  Woo hoo!  I deleted the video but she has one on her phone…I will try to get it up here.  The FUNNIEST thing that happened this week was when his speech therapist started reading he turned his eyes way over to me on his right and looked at me like…”Are you kidding me mom?!”  It was the funniest little look.  He is my own child with that look!  It was very cute!  Then he did good with Vision therapy!  Kids with CVI (cortical Vision Impairment) need to be introduced to one color objects with a black background.  This week they did that with a yellow slinky..his color of choice…  Then when the black when away and his teacher let him feel it, he looked at it.  Generally with CVI, the 2 senses, even any sound, can not connect all together.   Because his ears work…he will shut his eyes down and use sound instead.  So they just need to be connected together.  So this was all with school therapists.  THEN!  With OT, she had him on a bolster weight bearing on his elbows.  He heard Tyree and I walk up and his head was already looking to the left and he picked his head up like an inch off the bolster, still kept to the side, and looked at us!  Then she put him on the wedge to get a good stretch and leave him.  He had an hour before PT.  He SNORED asleep in that position.  Then when Greg came, he looked up at him!  Now…I mean and inch off…but it is off!!!!!  Oh and I forgot!    He is also lifting his knees up when laying down and his arms too.  We don’t think it is seizure because his face is alert.  Ever since Jett was working on him Monday night and telling him to get up to go play with him and Tyree, he started that.  

Oh and I forgot!  The best goal EVER was made….  Smile upon familiar faces!  WOO HOO!  Who rocks!?  Jackie, his teacher ROCKS!  Thanks… =D

It seems as though as he is taking small steps to the right direction…maybe shuffling to the right direction.  But it is the right direction!  However…his body still stays tight and twisted.  We really need prayer on that.  It makes me worry about going to the Napa Center.  I am not sure if his body can handle it.  So many prayers!

Less than a month away from stem cells!  Woo hoo!  I can’t wait for that.  But we MUST pray for a healthy little Santana.

Thanks for the prayers and the encouragement.  We couldn’t do it without you all!

Jett misses Santana

Jett was really sad and told me he misses his brother and wants him to get up and run around with him and Tyree.  Jett plays with Tyree just like he did with Santana.  But Tyree is still small so Jett gets in trouble for being a bit rough.  What set him off tonight was he was laying on the bed telling Santana to do stuff.  Like…he was squeezing his fist like the sign for milk.  He was showing Santana and telling him to do it.  Santana must LOVE Jett.  His hand started moving on command open and shut!  I think that is crazy good!  Then he told him to stick his tongue out and SANTANA DID!  Whew!  God is pretty much Amazing.  What else is there to say.  I have video…I PROMISE to post that tomorrow.

This weekend we all hung out.  Jett had counseling so my brother and his wife came to watch the babies.  Then Lorili came over so we could take Jett to FX at church.  After church we went to look at our land and walk around on it, for the first time.  I walked to the back of the lot and the horse whisperer that I am got the horses behind us to come to me!  I fell in LOVE with this black horse.  I told James instead of finding me on the computer when I have been missing for a while, he can find me at the back of the lot.  Yes Jaimee… I was giving your horse some loving too!  He…or she….didn’t look…finally came over but the fence was a bit higher to reach and the black horse kept nudging yours away.  Poor baby!  However…I think I got the loving more than the horses did.  I LOVE THEM!!!!!!  

Sunday we relaxed.  Which I think I need to go do now.  Oh… and about my cell number…. don’t send me your numbers because the one I am using now froze up on me and it is now unusable.  So I have no phone.  = (

Pray for Santana’s body.  He was so torqued crooked rotated and every which way.  When we laid him face down on the table, it looked like he had a pillow under him and on the right side.  He was lifted so high from rotation.  We really  need to have God work a miracle and fix his spine to where Santana can be comfortable again.  This hurts to see him like this…

Random Update

Sorry for the delay.  First I want to say thank you for your support.  Thank you for the nice comments.  I really got set off last week and it was tough.  But you guys picked me up when I fell and I thank you.  I have been meaning to jump on but I have been so busy with taxes and what not.  Not to mention for 2 weeks now I have been looking for my phone that Tyree lost.  I had to go in and hook up an old phone to get by, but now I don’t get mail like I should.  Not to mention, I don’t have your numbers.  So friends…send me your numbers! I  miss sending dorky pictures to those who are lucky enough to be on the receiving end of those.  So pray I find my phone!  

Thursday we had Neurology.  It went pretty good.  We discussed the Vasodilation therapy we did.  We discussed the films.  The ONLY downer he said  was that there is no blood flow to the frontal lobe because it isn’t needed because of  the damage to the frontal lobe. So I guess this is where it is where it is different opinions and a questionable therapy.  One says blood can go to the frontal lobe and POSSIBLY restore.  The other says…we’ll see.  The Brain itself is so amazing that no one really knows.  Well, just the creator of course.  So it wasn’t negative at all and he was interested in what we were doing.  

Then began the talk of Stem Cells.  We got a much more positive reaction from him.  We talked about the different ways we can inject the cells.  The way most people get them done is through the vein.  This is the safest but possibly the least effective.  The vein will travel down through the body then up through the organs, heart, and last stop brain.  The problem is a lot of cells can be lost along the way and become skin or whatever.  The next option I have been dabbling with is through the artery in the neck.  This will go up through the brain first and then down the heart and rest of the body.  Better chance of cells sticking where they need to stick.  Santana’s neurologists likes that idea better….IF they are prepared to fix an artery that may bust…ha ha. WE KNOW about Santana and his artery’s busting.  Eh.  But he said the BEST way is if they can inject it through a spinal tap right into the spinal fluid.  That way it will keep running through the brain and spinal cord only.  The down fall is…they puncture his spinal cord, he can become paralyzed.  If it is not clean, he can contract meningitis.   So the risks can be great.  But the placement would be more accurate.  

So now I have to sit back and write some questions out so I can call SRI and figure out the best way to handle Santana.  I am really  excited to get this done.  I have to work on our room stay in San Diego.  March 9th will come up fast!  I also need to work on my 3 week stay in Los Angeles for the Napa Center.  I have no idea how those 3 weeks are going to work. 

So anyway…we then went to his Medicine and Rehab Doctor on Friday.  Not much going on.  We were just talking how he got more tone when starting the vasodilators and she said that is the bad thing with these kiddos is they get tone with change.  She said that HBOT is the only one that really helps with tone and thinks that is it.  She didn’t want to mess with anything and see what happens with stem cells.  She couldn’t believe how big he was.  He keeps on growing and getting so big!

Then it made me think.  Oh my!  He is going to be 4 on the 18th!  I can’t believe my baby is no longer a baby!  He is going to be the age Jett was when Santana first fell in the pool.  Jett was so amazing.  I can’t believe how smart he was and it makes me think of how Santana can be.  I will never forget  when we first took my 4 year old little Jett to the hospital to see Santana for the first time. They came in with a doll to show Jett what all the tubes were and explained them.  Jett’s first question with true concern was, “which ambulance did Santana come in on?”  He was such a little adult.  Now my baby Santana is gonna be 4.  We are trying to think of a birthday party to do for him.  Coming over to our house is getting boring for everyone, I am sure.  So if you all have ideas…ship them my way.  Last year we did Chuck E. Cheese.  But he doesn’t fit in the rides there anymore anyway.  So I want to do something fun for him, he deserves it.  

I am sorry if this is all so random.  I have Jett screaming at Tyree and Tyree crying in response.  So I have information overload going on.  I will write more when I think of something.

Thanks for your warm letters and comments.  I really appreciate your support and friendships.

Florida Slideshow

Here is a slideshow from Florida.  I will post more later…  Gotta go to church.  Some work places block the site I used to make the slideshow so if you can’t see it…that is the problem…

My Apologies

I am sorry…I had to get that out.  I couldn’t get a hold of anyone to get that out to so that was my release.  I went into an anxiety attack and now I am suffering from a migraine.  So I need to get off here but wanted to apologize for spewing all that….trust me…I held back.