Wednesday, June 30, 2010

"Now faith is the assurance of things hoped for,the conviction of things yet seen"-Hebrews 11:1.....Please Pray Hard!

    I wanted to let you all know that our cardiology appointment went really well.  Dr. Wienecke did another ECHO, EKG, and a detailed Ultrasound of Parker's heart and has reassured us again that Parker's heart is completely healthy and clinically looks and sounds great!  Thank you Jesus!  His thought on this episode is Parker's autonomic nervous system.  This is the part of the nervous system that controls the feeling you get just before throwing up.  Parker has all of the symptoms of this...flushed, sweaty palms and feet, shakiness, and scared.  He just doesn't throw up!  I know that sounds really gross but this is how it was explained to us.  Dr. Wienecke will be sending us a "telephone monitor" sometime this week for Parker's heart.  Even though his heart is healthy he still may be having some pressure issues.  The telephone monitor is actually a portible EKG.  When Parker is having one of his episodes we can hold the monitor up to his chest, press a button, and it's an instant EKG that will read out for the cardiologist.  Hopefully, this will give them some kind of idea about what is causing them.  Unfortunately, Parker is not having them on a regular basis so they may be hard to catch, and we would be more than fine if he never has another one...but at least we'll have this to fall back on for answers. 
   Our MRI today went really well.  Parker did go a solid 8 and a half hours without food or water and it was a bit challenging at times.  I am so proud of him though because at his age he should have been going crazy and he was just about as happy as one baby can be given the circumstances.  The propofol injection went very well and Parker did not scream like he did last time.  Thank you Jesus!  I had a heart to heart with the doctor before we went down and he understood that the last MRI did not go so smoothly and this one had better be a far different experience for all of us.  And that it was.  Parker did cry when they administered the propofol but he didn't scream out thankfully.  We have a major prayer request tonight though.  Before our first MRI Dr. Morgan explained to us that we would have a scheduled follow-up visit with him to read the results to us and as long as we didn't hear from him or his staff that there would be no need for worry.  If there was concern on his end then he would definitely give us a call instead of waiting for the follow-up exam.  Today, while on the way home from the hospital, my cell phone rang and it was Dr. Morgan's office.  Our follow-up appoinment was scheduled for July 30th and he is requesting to see us with Parker tomorrow at 2:00!  We are extremely concerned about this appointment being rescheduled for tomorrow because of how it was explained to Willis and I before.  Obviously he has seen something that needs some kind of attention and we can not be more nervous.  I have knots in my stomach and tomorrow couldn't come soon enough.  Please pray for us tonight and be much in prayer for tomorrow as we may be facing some difficult news.  No matter how you look at things, the unknown will drive you insane.  So tonight, we are trusting in the truth, and leaving this in God's hands, because this is yet another thing that is too big for our minds  to wrap around.  I know that God's plan is SO Perfect, and this is only another piece of God's love to draw us nearer to His Throne.  Thank you so much for the love you all have shown to us through your heart felt prayers and sincere concerns....we need them more than ever right now.
Love In Christ,
T he C rafts

MRI number TWO!!!

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...I was really nervous when I saw my nurse with that BIG I.V.....

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...But once it was in....I made sure all of my monitors were working...

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I double checked on my nurses hallway directions to the MRI machine...

Posted by Picasa mom sure knows how to keep a smile on my face...even when it hurts...

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...the propofol really knocks me out....

Posted by Picasa took me about 30 minutes to wake up...

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...and after 8 and a half hours, I was ready to EAT!!!

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Monday, June 28, 2010

"Being Confident of this, that He who began a good work in you will carry it on to completion until the day of Christ Jesus" Phillipians 1:6

Hey Everybody...
    We are finally home and settling back in to a regular routine....even though we are missing the 60 degree weather in the mountains.  And so they say...all good things must come to an end.  Today Parker's developmental therapist Mr. Tim came to our house for therapy and is still so impressed by Parker's willingness to improve.  We are still suffering from hypotonia and Parker is still continuing to "Army Crawl".  But, Tim said that as long as he is doing something...then it is far better than nothing.  Tomorrow we have an appointment with Parker's Cardiologist in regards to those weird episodes that he is having periodically.  I do believe that they will do a follow-up ultrasound just as a precautionary measure.  On Wednesday we are headed to the Children's Hospital for our follow-up sleep med MRI.  I am not looking forward to this at all.  I'm sure you all remember our last MRI.  We were up for over 23 hours with Parker and a 104.5 fever and spent 3 days in the ER, chest x-rays, two rounds of antibiotics, a culture for bacterial meningitis and a week of work missed for me.  Pretty exhausting to say the least.  Willis and I both have discussed them keeping Parker more than the 30 minute observation time, just to be on the safe side!  We are asking for all of you that are keeping up with our blog to be in prayer for Parker this week, and until we hear the results with the neurologist.  Our little man has fluid on his brain and we are asking God to work a miracle in Parkers brain for Wednesday.   God has not failed us yet and I know full well that Parker has the most knowledgable doctor there is and his name is JESUS.  Our plan would be that all the fluid is gone but God's plan could be brain surgery...but no matter the end result, Willis and I will continue carrying out God's plan for Parker's life.  I will be going to Charlotte again on Friday for another adjustment for Parker's helment so pray that we have traveling mercies. Thank you all so much for your prayers and support.  You will never know how grateful we are to all of you.
Love In Christ,
The Crafts    

Saturday, June 26, 2010