Still Searching

Stanton is still just not himself. He has thrown up at least once a day (yesterday three big times). His nose is constantly running, his eyes are watery and his cough is still croup sounding. He seems to tire out easily when playing so we’ve just been watching a lot of movies! I think I have all three Toy Stories memorized. And to think I was one of those pregnant moms who said my unborn child wouldn’t watch TV until the age of two! Hahaha…..if only I had known…..

I’m experimenting a bit with how to give Stanton his medications. When we came home from Cincinnati, I just put everything together in one bottle three times a day. Since Stanton has shown an increase in vomiting, John and I started to wonder if the medications were effecting each other. The doctors say they shouldn’t….but something just isn’t right. So, this week, I’m putting a couple of medications in one bottle and the others in the next. He’s still technically receiving all meds 3 times a day (that is when he drinks all of his formula for the day….which actually hasn’t happened in a while). Anyway – I am hoping to land on the right combination soon. Or maybe, after 6 weeks of trying, the team will decide we aren’t on the right medications and we’ll start over with something else.

Stanton and I survived the cystic fibrosis test last Thursday. He was nervous and scared because we back in the lab. I assured him there were no needles, but I don’t think he believed me until it was over! The nurse was sweet and gentle. The test was really simple: they cleaned his forearm with alcohol, then attached two wax looking circles to the area. The nurse called them “watches” as the circles were attached to an elastic band much like a watch band. The “watches” were attached to a box with wires and held on his arm for about 10 minutes. They sent an electric charge to Stanton’s arm which stimulates sweating. The nurse removed the two circles and replaced them with one metal “watch.” She then covered it with saran wrap, plastic, a glove, an ace bandage, a bag and Stanton’s long sleeve. The instructed me to run Stanton around the hospital and get him hot….keep him moving. After 45-minutes or so, they took everything off and we were free to go home. The circle was full of Stanton’s sweat which will be sent in for the testing. I’m not sure when the results will arrive, but, based on our past lab experience, it will be around 6 or more weeks.

Our geneticist, Dr. Martinez, sent us the letter explaining the results of the amino acid lab work from August. I’m not really sure what it all means, but Stanton has elevated levels of dicarboxylic and 3-hydroxydicarboxylic acid.  We need to go back to the lab and have some plasma tests, metabolic tests and a repeat of the amino acid test. I believe these tests require both blood and urine samples.  The letter stated that this abnormality in enzymes and acid levels can be seen in patients with metabolic disorders including fatty acid oxidation defects or organic acid defects.  I'm clearly just stating the letter here and can't yet say what any of this is, what it could lead to or what it might look like.  I do feel, however, hopeful that we are one step closer to something here though.

We’ve scheduled an initial appointment with Dr. Holland, our new allergist for this Friday at 2:00. This is just a meet and greet - not the actual allergy testing. 

In our house, we call the season between Thanksgiving and Christmas Advent. For many years, I thought of Advent as a time to remember the miracle of Jesus’s birth experience and what that experience means to me. The story of the birth of Christ is amazing, don’t get me wrong. Who could really top the miracle of God becoming man through a virgin? However, since having Stanton and dealing with all of his health difficulties, this Advent season feels completely different. I have truly used this time to focus on the specifics of the season. Last week’s Advent focus was “hope.” I tossed around questions such as

What is hope?
what does hope look like?
What gets in the way of hope?
How do I live in hope?
What are my hopes?
How does hope manifest itself in my life?
Where does my hope come from?

This week’s Advent focus is “peace.” While I feel I live in hope and have hope for Stanton’s future…..peace is a different story. I’m really wrestling with this idea. Instead of peace, I find worry and to do lists and distraction inside my head. How can I stop and feel “at peace” with so many unknowns and so much to do and fight for? Do the words fight and peace work together? A fight is what we’re in the midst of. I feel we are fighting for answers, fighting for solutions, fighting for doctors to listen and work hard for Stanton. I’m not sure I’ve even considered the possibility of peace. However, I do believe that there will be a day when I am at peace with even the unknowns and the unanswered.

In honor of this Advent Season, I must share this with you:

Verse 12 is our promise of a Savior. Verse 13 answers our human condition and how I am trying to live daily.  Verse 14 is my hope for the therapists, doctors and nurses who surround Stanton.

Romans 15:12 - 14 
 12) And again, Isaiah says,


“The Root of Jesse will spring up,
one who will arise to rule over the nations;
in him the Gentiles will hope."

13) May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

14) I myself am convinced, my brothers and sisters, that you yourselves are full of goodness, filled with knowledge and competent to instruct one another.