Crazy Busy Week

There was a time that we prayed for Santana to come off the ventilator  only if he can walk and talk and not lay in a semi conscience  state.  Today, James and I reflect on that.  Then all I can see is our ICU nurse Melanie telling us that he will not be the same Santana and if we choose not to let him go off the  vent, we will have a long road ahead of us. If only we could have seen in the future at the time we had to make that decision.  

I guess what has set me off this weekend was when we were sitting at Jett’s opening day baseball game (YAY JETT!), James points out that if life was the way it were, Santana would be playing his first year of little league next season.  Wow!  I can’t believe that.  It actually made me miss him so much!  

Instead of fitting him for a uniform, we are fitting him for braces and a wheel chair.  Which NONE are working at this point.  Santana, sadly, looks like one of those kids you see on the commercials of children out of the country you can send a few bucks a month for to keep them alive and give them healthcare.  But instead it averages out to hundreds, yes… even with state aid, and he is well taken care of with LOTS of therapy, yet his body is all mangled up still.  I am so sad for him.  He has been crying a TON! Coughing and spitting up a TON.  I am sad for him.  I am frustrated for him!  I wish I could get amnesia and forget everything before December 16th, 2006 so I can live life like this is the only life I know.

Oh, I just thought.  I haven’t updated for a while, so you guys don’t  know the rough week we have had that may have set me off.  First, I took Tyree to urgent care about 11 pm Tuesday or Wednesday night as he was struggling with his breathing.  He had a good solid case of CROUP.  Arg.  No sleep.  Poor baby.  Then Thursday night, James took Jett in for a severe ear infection.  ARE YOU KIDDING ME?!  Oh, and did I mention, all week, we keep getting pinkish blood in Santana’s spit up.  Doctor thought it was irritation from suctioning.  But 6 days is WAY too long for that.  Well, Tyree did GREAT Friday and Saturday.  Then he woke up today with runny nose and yet coughing again.  Coughing till he gags.  I feel so bad for him.  So I have no idea when we will see the end of this.  But I PRAY Santana does NOT get croup as he has enough issues with his airways.

So, after all that blah, blah, blah… I guess I am just tired.  I am tired. DAY IN DAY OUT…tired.  And more than me being tired.  Poor Santana has about 3 hours of therapies (including chiro) all together.   He works so hard.  Yet, his back is so torqued.  Today, we had him on the wedge face down with his head lower.  This helps drain out all the junk.  It is the ONLY position now that he doesn’t cough and choke.   He is so clear, he gets a good stretch and his back looks a tiny bit better.  But he isn’t a bat.  He can’t live like that.  

I am distracted.  I can’t write. This is probably all over the place.  I will look over it later and add baseball pictures tomorrow.

Happy 8th Anniversary!

8 years ago when I said, “I do” I had know idea what kind of journey we would go on. But I can say that God has truly blessed our marriage! It takes more than the average couple to go through the loops and scoops we have gone on through this roller coaster of a life. No one knows what the future holds. But when you are all dressed in white surrounded by fresh flowers. That moment is what really mattered. The moment you look into your soon to be husbands eyes as you walk down that aisle. That love that bubbles in your stomach with every touch and every gaze. When things get tough. Those are the moments I think of. We had so much fun together. Sometimes that fun is hard to find in the midst of the pain. But we both know we love each other more than anything! I could not have been blessed with a better man. He is absolutely amazing to me. He works and works and works… in fact, it is 8:30 pm and he is still not home and I haven’t seen him since before 6 am. I miss him on days like this. But I know in his mind he is focused on getting us that house built. He is just so amazing and I could not be more proud to say that man is MINE. He works many hours and comes home and still fulfills his home life above and beyond! I can’t thank him enough. If it wasn’t for him, our house would be even more upside down! These last 8 years have been the best and worst years of my life. But if there was anyone I could choose to go through this Santana journey, I would still choose him. He is an awesome man of God. I love when he picks me up when I am down as I know that he too is knocked down. We may not get to celebrate our anniversaries like we imagined every year would be (full of vacations and getaways)… but as long as we are together, that is all that matters to us. I love him so much. Every girl should be jealous. =D James, Happy 8th Anniversary! I love you more and more every day! Thank you for all you do. I appreciate every moment spent together! And if you would ask me again… It would still be, “I DO!” – always & forever-

Facing My Monsters

It has been a good week.  Santana slowly shows new little things.  First.  He is LOVING music… I think I wrote about that already.  I need to get the video up here but iphoto won’t get it off my camera.  He is shaking those bells.  That is new since Stem Cells.  Not to mention, we have seen, ZERO, ZIP, NADA, seizures since stem cells.  That is worth it in itself!  Pray it stays that way!

Then in speech, we can get his jaw open with the big chewy thing we use in speech.  We don’t have to pry it open with lots of massage.  He open right up and practices biting!  THAT is new since Stem Cells.  Sunday we had him going down on the wedge so his head was lower than his body, this helps drain the junk out.  And I stood about his head and kept telling him to look at me.  He lifted his head a little.  But even more, he was FRUSTRATED in his face.  Then he started making these new noises that was like babbling.  It was so cool!  So I really feel like something is coming out of this.  This isn’t little things that are questionable… these are big changes.  I believe this is just the tip of the iceberg!  
The only bad report I have for Santana is the fact that his nurse noticed he had a bite this morning that has a rash about an inch and a half down.  He kept having rashes pop in and out everywhere else too all day.  But the one by the sting or bite stayed there and is still there.  His breathing his fine, I just need to keep an eye on it.  For know, benadryl…

Well, last night was a big step for my family.  For the first time, we went back to the scene.  We hadn’t been at my dads house since before the accident.  But my brothers birthday was yesterday (Sunday) so we were invited to go to dinner up there.  I knew my Grandma is going back soon and I hadn’t got to enjoy any of her cooking really.  So we took the plunge.  We faced our Monster.  Our fear.  Well, sort of… the blinds were shut, at our request.  I couldn’t look at the pool.  Although Jett was peeking for a few minutes and walked away.  I could not help but wonder what his little mind was thinking.  But before I went I called my counselor to see what she thought.  She said to call and report when I left.  All was good.  I can’t wait until our next session!  She will be proud of us.  She told us from the beginning that we have to get to the stage of going there before she will think her job is done.  WE GOT A LONG WAY TO GO YET.  But I was pleased we did it!  

Thank you all for praying for Baby Channing!  He is off ALL tubes and home with his mommy and daddy!  Woo hoo!  Not to mention!  His heart murmur closed up!  He is a completely healthy 5 lb 12 oz baby!  Pray he gets to a healthy safe weight.  Also, pray that they can get help to cover the heaping mounds of medical bills!

Please remember to pray for the cells to implant them selves in his little brain and start making repairs!  Pray for this bug bite that scares me a bit!

B-E-L-I-E-V-E

That is what I need to do… Believe. I have been getting a little frustrated. Santana has rotation going on in his spine. He had GREAT head control over the weekend, and now he is floppy again.  He has a TON of tone (where he gets really stiff). His left leg is stiff straight out and his right leg won’t straighten out but it bends. I seriously can’t keep up with him. Just when one thing gets “fixed” something else comes up. He had been really JUNKY but his nurse got him cleared out and he has been good. He cries a lot. ALOT. 2 days in a row if he wakes up and I am not right there he cries until I pick him up! This is when he sleeps in the afternoon on my big bed in the living room. I think he has gotten SPOILED! But I love it!

On a positive note!  Santana did AWESOME in music therapy!  THEY CAN NOT take that therapy away from him and kids like him.  Arizona is trying to do so to save money. The last 2 weeks are the first he has actually participated!  Hmmmm… Since we have had stem cells.  Visually this therapy has been great.  He has learned to look and follow the instrument.  The last few weeks he has been shaking his bells that are strapped to his extremities and this week was good.  

We have been trying to get him to use the button.  Now we figured out how he can!  He kicks on command!  He LOVED kicking the little instrument… I don’t know the proper name, I call it like the clams that click.  He did so good!  I was proud of him!  His therapist really enjoyed it too!  I am sure it can be frustrating to sing and what not and not get a reaction.  Even when I am playing with him and he just stares at me blank!  So it was good he gave her feed back!  YAY!  Go Nanas!

Earlier on in the week, we were outside (evening with no sun) and Jett and Tyree were running around and I felt bad for Santana.  So I got up and pushed him around in his wheel chair really fast and spun him until I almost puked. He loved it!  We played tag with Jett.  I thought I was going to drop over but it was fun and I am sure Santana felt a part of it and it made Jett feel like he was actually playing with his brother. 

This week, we closed on our construction loan! So now we can break ground on the chunk of land we have owned for 4 or 5 months now. I am really excited about that. Praise God for the bank funding that! We had a lot we had to come to the table with but we did it! Now we cross our fingers and pray for a miracle! We have Rent and mortgage payments now. That is the downside of construction loans. You pay for it as if you already lived in it as soon as you sign. So please pray we can make it. Our monthly payment almost tripled. But we are believing God will allow us to make it through. We may be getting tents to live on the land for a while. =/ 

The pictures I have posted are the empty land. The last picture is the view from our front porch.  I will post updates and pictures on that too. If you know anyone in the trade of anything to do with putting a house together, please contact me and we can get them on a bid sheet! We need help getting the costs down!!! =D

Oh.  And baby Channing is a FIGHTER!  He has all his tubes off and he just might make it home SUNDAY!  Yay for Amber and Brandon!  Thanks for all the prayers!  Keep praying for his heart murmur!  May it just fade away!!!!

Thank you all for your continued prayers. Believe with us!

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I haven’t felt like posting anything to be honest with you.  I am so stir crazy!  Who invented spring break anyway?  AND 2 WEEKS OF IT?!  Jett is bored. I am bored.  Tyree screams, Santana Cries.  Seriously!?

This weekend, Santana did AWESOME with head control.  Yesterday he was floppy.  I don’t get it.  Today.  He had too much tone to move around.  Stiff as a board!  Not to mention, he is red at his tailbone.  Apparently you can get bad enough break down to where the bone can come out.  Why does he have to have Scoliosis?!  It stresses me out.  Even if he were to wake up and be “normal” tomorrow, he still has his body contorted in such a way it would be hard to retrain him to ever get off that wheel chair!  UGH!  I think he is the only brain injured child who deals with this.  I don’t get it?!

I am frustrated.  I need to get off.  Was gonna put pics up but I don’t feel like it.

First, PRAISE God to baby Channing!  He is off the vent and the chest tube is out and momma Amber gets to feed a bottle to him and hold him now!  What a little fighter!  If he gets to so many cc’s of formula, they can take him home.  That is the first step.  NEXT… they found a heart murmur.  Pray that when they take him to a cardiologist that they say… “It is gone!”  Continue to pray for them!  Any help for them would be wonderful!

Desperate Prayers for Baby Channing!

Amber text me about 4:30 and the cpap machine blew Channings lungs. Please pray for that baby! He is now on a ventilator and a chest tube! Pray pray pray!

Now for something I may be crossing the line in telling you this. This couple is young. Their insurance was supposed to start the 6th of April and Amber was due the 20th. Now they have no insurance and are dealing with this out of their pocket book!

Please help me raise money for them. They got married a year ago. This is no way to start off a marriage. Money can’t replace health, but it will get their minds off it and be able to focus on Channing! So please contact me if you have any fund raiser ideas.

PRAY PRAY PRAY! Believe!

Update on Santana’s nurse

I heard from Santana’s nurse, Amber around 4:30 and she had her little boy Channing that came in weighing 6 lbs 2 oz. We really need prayer for her and that little boy as he was rushed for xrays and is now in the NICU. That is all the detail I have from her. Pray for comfort!

Pray For Santana’s Nurse!

Hey everyone. Please pray for Santana’s nurse! I got a call at 3:30 am from the company that her water broke and was having contractions. She is NOT due until APRIL 20th! Please pray for her and Baby Channing to be healthy and strong as ever. This is her first child, she is young and scared. Pray for comfort! But most of all pray for health. Last text I got from her was at 4:30 am, she was at 3 cm. Believe Amber!

Everything else is same as usual. Just pray for Amber right now.

Home Sweet Home!

Oh does it feel good to be home safe and sound! But it is WARM here….I miss San Diego weather!

Santana has been doing AWESOME! He has rested, and I mean passed out cold resting! He was awake more today. When we laid him in his bed when we got home he had this refreshing aaaaahhhh look on his face! I am so proud of my strong little boy! And the other 2 did great too! They had a lot of fun with Grandma and Grandpa! Tyree does NOT like driving long distances! He slept MAYBE a total of 45 minutes… all together. But he is out and free and running around now.

So, to make it clear for some people, I wanted to explain exactly what cord blood stem cells are. Cord blood stem cells are collected from the umbilical cord and placenta after a baby is born. Cord and placental blood contain large numbers of blood-forming stem cells. The donated cord blood is screened, frozen and stored at a cord blood bank for future use if it meets screening requirements. In the case of where we went (Steenblock Research Institute), the cells came from healthy born babies and mothers in the US. They take the white and red blood cells out which makes for less chance of rejection.

This is different than what President Obama passed. Although it was cool that he signed for research funds for Stem Cells, it is too bad they are focused on Embryonic cells. Embryonic cells is from embryos. The beginning of life. What you used to be in your mothers womb. From my research, I have found that those type of cells could cause Tumors because those cells were meant to become a whole human being. As far as brain injury, it isn’t proven, but we will probably start seeing clinical trials. Santana probably won’t get to do any trials at this point now that he has had them done already. But it could be years before we see it for his type of injury. There still is no constant proof.

Now, usually, you get the cells injected through IV. That is not the way we did it. If we had, we would have been out of there in a moments time. The way we did was more risky but after lots of prayer and talking to our neurologist, we chose to roll that dice. What they did was put a catheter through his femoral artery and led it all the way to his brain. They were prepared to take x-rays if they felt it didn’t seem right. But they got a straight shot to Santana’s brain. Then they injected the 4 vials. He was put under light anesthesia for this procedure. Light…but out cold. He woke up fine. Except for the rashes. But, I was told something that made me feel good. Apparently there hasn’t been too many people that rash out like Santana did, but the ones who have, have had great improvements. Hmmmmm…..

Besides that, everything just felt right. There were little restaurants everywhere called SANTANA’S Mexican Grill. One had a sign that said… COMING SOON… SANTANA’s. Ha ha. That was like a word from God. I LOVED IT! I will post pictures later when I get settled in. Also, we were behind a car whose license plate was Bananna. Well…it is almost Banana and we call Santanta, Bananas! It was funny! Then the date was 03-09-09 and that adds up to James’ lucky number, 21! Then dinner the night of the treatment cost $21 even! Then if you add 2+1=3 3 is the number for the trinity! I know…I am weird. But I had fun with it!

I got some unpacking to do. I will post pics later! Thanks to my friend Elaine for watching my pets and house! We appreciate it! Thank you all for the prayers! Remember… Coming soon…. SANTANA. BELIEVE!