Thursday, July 26, 2012

I got nothin' {insert catchy title here}

The glowing red numbers on the nightstand mock me with each passing minute.  I toss. I turn. I envy my husband who is snoring softly beside me.  He has mastered the art of falling asleep mere seconds after his head hits the pillow.  Unfortunately, I have almost always lacked this ability and my brain tends to shift into overdrive when it should be shutting down.  Tonight is no exception.  
Earlier this evening, I received a call from Tyler's pediatrician about some labs we had run.  Let me back up though.  Last week, we attended our first 4p- national support group conference (more on that in a later post).  We attended a session highlighting nephrology/urology and the importance of monitoring blood work due to the high level of chronic kidney disease and renal failure associated with 4p-.  Upon returning home, I discussed this with our pediatrician who suggested we go ahead and draw the labs since we were already there.  Fast forward to the phone call were she informs me that the levels we were originally looking at were within normal range.  However, his calcium level was high and raised a red flag.  "Way too high" were her exact words.  She will be consulting with another doctor and we will try to pinpoint the exact cause of the elevation.  She is off on Fridays (of course) so we won't get any more info until next week.  
Now, I should of learned my lesson after googling "Wolf-Hirschhorn Syndrome" after receiving Tyler's diagnosis.  But nooooooo: I have no patience.  I want to know.  I go into Nancy Drew mode and try to channel my inner Dr. House while researching all the possibilities for elevated calcium in the blood.  I scare the shit out of myself reading about cancer, kidney disease, and so on and so forth.  Hopefully it's nothing.  I'm praying it's nothing.  But now I am wondering.  Will it always be like this?  I feel programmed to think the worst.  Goodnight for now, I'm off to sleep (hopefully!!!)


  1. Bless your heart. I continually wonder why no one ever prepared me for the constant worry that walks alongside a parent. And at the same time, I'm pretty sure I've never shared that with any new parent, rather have comforted another that they are "normal" for worrying. Although our boys do not have the struggles that your precious Tyler has, I know from Hailey's family, as well as our new nephew that their health is so fragile. It can change in a mere split second.

    Will it always be this way for you? Probably so. It will always be a worry for all parents whom love their children, you will just have more opportunities for worry being Tyler's mama. And you know what? God chose you to be Tyler's mama. Long, long ago, you were chosen to be his, and him yours. I know that doesn't make it all better, but He believes in you. He has entrusted you with sweet Tyler... He's got your back when you're scared, mad, and exhausted.

    I will be praying for you and your husband, and Tyler's health. Hang in there.

    Even when it's so hard to TRUST, I've realized that trusting is the best option... what else can we do?

    I leave you with this...

    Trust in Him at all times, O people; pour out your hearts to Him, for God is our refuge. Psalms 62:8

    Get comfy in His palm, and let him carry you until you meet your doctor this next week. Please keep us updated as you all will be on my heart.

    Hugs to you.

  2. Sending love your way! I also hope it is nothing and that you find that out soon. Waiting stinks! It seems like the more I hate it the more I have to wait! Thinking of you.