June 26, 2012 mcfadyena

Less Eventful, but No Less Amazing or Humbling

Trey got his ninth dose of intrathecal Elaprase today. No one got sick, no flights were missed, there are no ports to be broken or leak, lumbar puncture and anesthesia went as well as can be. This trip went as planned. We have our routines: we shop at Whole Foods, swim in the hotel pool, stop by Southpoint Mall, go to clinic, and get into our groove.
But it’s not a groove like any other. My son has a progressive disease. He is supposed to be dying. Since his diagnosis, I have been dreading, anticipating, fearing or adjusting to the different pieces of news Trey’s various doctors present us with. Things have either progressed, or at best, things have remained the same. But what do you do when your son’s progressive disease is reversing itself? For 9 monthes now, I’ve not been sure what to make of it. I’m still not. Every four weeks we go on this trip and I contemplate what we’ve chosen- to say yes and no to- to participate in this trial. It seems crazy, what we’ve done and what we do (physically, emotionally, spiritually and logistically), to get this little shot of drug into Trey’s back. But each month, there’s something new to report. Whether it’s the letter typing and focus that I blogged about a couple weeks ago, or the spatial awareness and ability to get along with his siblings from a couple monthes ago, there is always something new and amazing.
Yesterday I told Dr. Muenzer about my most recent discoveries: at first I thought Trey’s tongue was less dense. Brushing his teeth has become easier. But in the past couple of days, I think his tongue and surrounding tissue is actually reduced in size. Numerous people have commented on Trey’s physical appearance- he is growing like a weed and his facial features are changing. Trey’s speech therapist commented last Thursday that Trey is making connections he never did before, which has led conversation to flow much easier and be much more natural. Dr. Muenzer’s nurse, Heather, was boggled when Trey used the word ‘tangled’ this morning while we were waiting for his dose (his pulse ox was ‘tangled’)- like Trey’s new ability to type a letter, most don’t ‘get’ how amazing Trey’s use of a word like ‘tangled’ is, but Heather, after being around kids with MPS II for decades, gets it. I have also recognized over the past little while, but have not been able to put it into words until the past couple of days, that Trey’s behavior changes have led me to use less physical intervention. Before, whether stopping Trey from grabbing or hitting or doing something he knows he’s not supposed to (like eating something after his teeth are brushed or jumping into a pool without an adult), I would have to physically stop him. There was no way he would stop solely with verbal commands, although I gave those plenty. Now, however, I may have to repeat myself, but I don’t have to restrain Trey. I can just tell him NO. It is a shockingly easy way to parent and SUCH a relief.
But then there’s the flipside and the reality of our situation. Right now, and every four weeks until we have a cure, Trey is asleep under the care of an anesthesiologist to infuse an artificial enzyme via lumbar puncture into his central nervous system, to keep him healthy and alive. And I sit here thinking about what they’re doing to him while he sleeps and the fact that he has no say about what happens to him. Yes, this drug is worth it, and I don’t doubt our participation for a moment, but my stomach, and my heart, is in my feet. My stomach (and heart) falls to my feet again, when I think about all the MPS II boys (and parents) out there who need what Trey is getting right now. UNC never fails to bring forth a tremendous, wide-range of emotions in me. I can’t wait to go back into Recovery and see my beautiful little guy, who goes through so so very much.


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