Monday, January 17, 2011

I took Jonathan to an appointment today with an Immunologist in Denver. This doctor was recommended by a family that our new pediatrician has taken care of for years. He has been instrumental in providing the children in that family a life with tremondous relief from chronic sinus infections. I was so pleased with this doctor.
We repeated allergy testing just to see if there was any chance that there were allergies that could be aggravating his situation. The good news that he no longer test positive to any of the allergies ( those must have been some good allergy shots that Dr. P made him in Knoxville!). The next step is to begin the process of testing his immune system. Dr. Voltz believes that he definietly has some thing going on with his immune system. Most of his immune type labs have not been repeated since 2005. The doctor was kind of shocked by this. I am not shocked at all...for the past several years I have just been put off and told to deal with it.
Dealing with it just doesn't work...not when your child is so sick and then becomes so psychiatrically unstable that he is begging you for a knife so he can cut his nose off. Or when the infection has lasted so long that he is not able to hold his head straight, walk steadily or speak without slurring his speech. Its so easy to say "I don't know" or "It's just how it is" when you don't have to live with him or watch him struggle twenty four hours a day!
So...we are drawing blood tomorrow for 17 different labs...ranging from basic CBC and CMP levels to vitamin levels and all the immunology levels. These labs will take about two to three weeks to get back. I am anxious to see what they say. I am hopeful that they will give us new insight on what to do to help Jonathan feel better. Thank you for praying for us so faithfully.

Tuesday, January 11, 2011

The Balancing Act...

This is what I woke up to this morning. This is game we call " To Worry, Not to Worry". We were supposed to have an MRI yesterday but because of the snow we had to cancel it. It will be three weeks before we can get another scan done. A lot can happen in three weeks. The hardest part of this is how much things change sometimes right in front of our eyes. Jon has been struggling since the end of November. About a week ago things started to concern me..mostly his eyes. So finally I emailed the dr and they agreed to do a scan. Of course as soon as I call then he does a turn around and seems ok (but the eyes are still funky). I even took him to the pediatrician who remarked at how he doesn't seem like himself...but no one seems overly concerned. So maybe I am just a crazy mom. Maybe I see too much, maybe I am too I convince myself nothing is really going on (and really..there probably isn't). I convince myself that its ok that the MRI is three weeks away. I tell myself and my friends that if something is wrong it will still be wrong in 3 weeks and I move on...until I wake up to this this morning. I know that if I showed up at the hospital with Jon looking like this that would not only scan him today they would probably admit him. Problem is that if I actually call and take him in he will be fine by the time I get there and they will pass it off as this is just how it is with hypothalmic injury...
I get the whole hypothalmus issue. Really I do. I know there are up days and down days. I have lived through enough raging to understand how his body doesn't work the way ours does. I have watched as my child has literally turned purple right in front of my eyes and then just as quickly returned to a normal of shade. I get it. But I wish someone could explain to me what to do with the way my heart feels and how to not hold my breath when I wake to this every morning and I know something is wrong and the balancing act begins...

Monday, January 03, 2011

I was listening to songs on New Years day and wondering what song could be a theme song for this new year for me. This song came on and immediately I knew it was the one... the single line " Jesus, keep my heart alive," is my prayer for 2011. That is the desperate plea ringing out from my heart.
The last half of 2010 was rough. Really rough. Rough in ways that I can't share. So many things happened that left me emotionally shaken and questioning everything I thought was true. When you are hurt deeply, its hard to keep your heart alive. Its hard to keep pressing on. It is so much easier to shut down and become numb.
Thankfully, the Lord went before me and prepared the way even in the midst of so much pain. I am so thankful for two people in particular who God gave me during this time when it felt like I was loosing everything and everyone that were important to me. One person has reminded me daily that healthy, mutually edifying relationships can exist...I am so thankful that when many others forgot the song my heart needed to hear that this person sang that song every morning and every night for as long as it took. The other person has become the person to walk through the very deep things that I needed to walk through, lovingly and graciously willing to get messy with me. She wasn't afraid to step into the mud puddle I had found myself in and pull me out. Her words are straight from the word of God and are a never ending challenge to press on and not give up hope.
With 2010 gone and 2011 waiting to be lived... I am choosing to forget what lies behind and press forward...praying as I walk and things getting messy...Jesus, keep my heart alive.