Happy Heart Day!

Bloody drool.. not including the blood tinge foam in his nose

Wow.. so much has gone on since I last blogged.  As usual I will forget something or be all over the place.

We went to his Physical Medicine and Rehab doctor and she really thinks we need to do the spine surgery because xrays are showing compromising of the heart and lungs.  When he gets those xrays every 3 months there is always change.  So I think I am at peace with getting the growing rods.  I do have one of the best orthopedic surgeons… AS LONG AS HE WILL DO SURGERIES (he still won’t do the hips).  So basically the doctor said if we wait to long his lungs will be so badly compromised that he will not EVER have any surgery or be put under cause he won’t make it through.  So I am saying. LET’S DO IT!  It is a LONG and gross surgery.  But His breathing is WAY more important than him rolling around or crawling.  So I called and said to go ahead and schedule it.  Then they say… You need a note from pulmonology.  That cracked me up because his pulm. doc wanted this done back in JULY!  and Ortho doc said NO… his spine isn’t going to cause trouble to his lungs and heart.  Obviously he saw the CT scan and is all about it now.  So Get er done!  Oh no… living in the “country” is turning me hick!

So Wednesday was scary… again.  I walk in the room (was gone since he was sleeping) and he was drooling BLOOD!  I was like.. it’s ok.. probably just a seizure and he bit his tongue.  So out of momma instinct, I got a 60 ml syringe and pulled back his G-tube.  There was a HUGE blood clot!  BRIGHT RED!  NOt coffee ground like an ulcer is.  Not to mention.. his poop was brick red that day… 2 times.  I gotta tell you.  I did not call the doc or go to the ER. If I did that… I would be in the hospital a week.  Selfish?  Maybe… But I can do what they do but better at home.  And once I got the clot out there was no blood drool or blood tinged foam coming out his nose. I have pulmonary and GI coming up so I will show them the pics and talk about it then.

The only other odd thing is he is shaking a lot. Not seizures… although he is rolling his eyes back a lot. He has EXTREME agitation going on. LIke he was right after the accident.  I think he is crying and what not more because nerve endings are opening up.  He has made a TON of change since we have been going to a neurological chiropractor.  Everyone comments on his eyes and how much more in tune he is.  WOO HOO!  So anyway.  His neurologist thinks it may be like a detox from coming off the Valproic Acid.  I asked him if that is what it is and he said it could be since it is used for bipolar and what not and is addictive.  So I am going to go off it a little more slowly to avoid increased seizures.

Cozy at Stacey's. Why does he nap for EVERYONE but me?

Other than that he ROCKED it out in therapies this week.  No crying on the horses!  For speech he not only looked at the picture of the sucker but then looked at the therapist with it in her hand right after! He then sticks his tongue out.  His nurse asked one day if he wanted a sucker and he started smacking his tongue to his lip like he was salivating for it.  It was great!

I think the biggest things we need prayer for is that we get approved for his therapies.  Arizona is taking that away and I LOVE my therapist.  A few came to bat for him but My coordinator didn’t care.  She didn’t even see if he accomplished goals or what new goals we had.  It was terrible.  As long as we get approved that is all I care about.

Then comes the Hallmark holiday that is loved and hated by many.  James and I celebrated FriDAY!  WE had dr. appts so he took the day off.  My WONDERFUL friend Stacey watched Mr. Tyree for the day while we went to a movie and did some shopping for his banquet dinner we have this week.  It was so quiet and we didn’t have to hear whining or have to say, STOP.  It is amazing how you get away but you can only talk about your kids!  They are truly sent by cupid.  Especially Tyree … =P

The Men behind the BEAUTIFUL voices from the Valentines Singing Gram! WE LOVED IT!

My sister in law Janet is coming after church to watch the boys so we can do lunch ALONE.  Then my dad, step mom and grandma are coming later in the day to take over … we should be back by then.  So we have 3 dates in a week!!!!  Next one is on Santana’s birthday.. but we can not Skip it.  It is an award ceremony.  Mr. James who is in his dealerships TOP 5 service sales!  WOO HOO!  My man rocks!

Santana got a GREAT valentine today!  One of his readers on Facebook, Jon, sings with a quartet and wanted to sing to us.  It was BEAUTIFUL!  Then he added You are my sunshine… Santana’s song!  As you can see in the video below… he was out COLD!  Normally you can NOT wake him when he goes to sleep.  But he heard voices of angels!  Seriously amazing!  Jon has been a great friend and prayer warrior.  I am blessed to know him!  Thanks Jon and your  Quartet!  LOVED IT!

When you look around and see all the hearts on this day, remember that it is also Congenital Heart Defects Awareness day. I know a few kiddos with this and has had MANY MANY MANY open heart surgeries. Keep all those kids in mind and be thankful for every thump you got.

Off to bed I must go!  So much to do.. not enough hours in the day!  Happy Heart Day Everyone!  Remember… if you don’t have a Valentine… It is ok. God is the BEST valentine you could ever have!  He will never leave you nor foresake you!  Lean on him and remember his love is what will get you where you need to be in life!  I love you guys and I LOVE my friends!  I could not get by without you ALL!  I can not name them off.. too many and I would NEVER put anyone in order.  xoxo

MAKE SURE YOU PAUSE THE iPod PLAYER ON THE RIGHT BEFORE STARTING THE VIDEO SO YOU CAN HEAR THE ANGELIC VOICES!

2 Comments

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  By Pam, February 16, 2010 @ 12:35 am

  My goodness Tyree look just like Santana! I thought that Santana was napping for Stacey!LOL
  I still believe!!!!

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  By Pam, February 16, 2010 @ 11:49 am

  My Jesus by Todd Agnew. Have you heard this song??

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