We travelled on Tuesday to North Carolina, to UNC Chapel Hill for our next round of interviews to hopefully get our littlest boy on an experimental treatment for autism. The trip over was a portent and omen I swear. My throat and ear were aching and on fire. I just felt, BLAH. Not good. Plus about halfway there, this annoying MIST started falling that gradually worked up to LIGHT RAIN.
You know the kind - where you ALMOST need your windshield wipers but cannot do without them? It was about this same time that it occurred to me that I was going to throw up. We stopped in NC for dinner at Cracker Barrel (friend to travellers everywhere) and I ordered grilled chicken, hot tea (by now I had chills), apple sauce and something else. I dunno what.
I had some tea, some applesauce and went to the bathroom and puked them up.
At which point I noticed that Cracker Barrel no longer has out their fancy soap and lotion in the ladies room. I know it's a cost cutting thing, but man, when you are on a road trip - those were sort of nice pick me ups, at least to me. I miss them.
We got to Chapel Hill about bed time and found it covered in icy snow and zonked out. I apparently kept the husband up all night moaning, shivering and sweating. He got me some Tylenol and I did sleep some better after that.
Our appt went well at UNC - and we got our medicine for the boy (or placebo) but YAY we found out that after this study we can participate in the NEXT one where he is GUARANTEED to get the enzyme. So, yes, we're IN for that one. I'd like to see if we can't get the OTHER boy in that one.
Everyone kept telling me how terrible I looked. Which is probably a sign that I looked really, really terrible.
After that we went to the 501 Diner which is a place where I am positive that XTA took me for breakfast like 13 years ago. It was still really good. I had an English muffin. And some tea.
And their toilets and floors are very clean - I know this because I threw up in their bathroom.
I want to go back there and eat food - without throwing up.
To add to my vomit highlights I'd like to add that I also threw up in an intersection - hanging out the car window - showering puke all over three lanes of traffic and my car,which my sweet husband cleaned up off the outside and some of the inside of the car. He laughed as he did it, which made me laugh and feel less stupid and helpless. No one is as brave in the face of vomit as my husband. I have 12 years of proof.
I also threw up at the South Carolina rest area- but it wasn't as clean.
He took me to the doctor when I got home, and VOILA my strep test turned colors the second they put it in the tube. Yes. Strep throat. So a ZPAC and another day's worth of sleep and I'm not completely better but MAN am I better.
And the most important thing - the boy got his medicine. We don't know if it's the placebo or not. But this isn't about us. Well it is. But it isn't. Because we know we can get the enzyme in a few weeks for sure regardless. If this works - it could make all the difference in my little boy's life - it could change his world.
If it works - it could change a lot of worlds. So we accept huge inconvenience and travel - and expense, and we accept that we might get the placebo.
And I would puke every meal I ate for the rest of my life, if that was what it took to make my little boys better.
You know the kind - where you ALMOST need your windshield wipers but cannot do without them? It was about this same time that it occurred to me that I was going to throw up. We stopped in NC for dinner at Cracker Barrel (friend to travellers everywhere) and I ordered grilled chicken, hot tea (by now I had chills), apple sauce and something else. I dunno what.
I had some tea, some applesauce and went to the bathroom and puked them up.
At which point I noticed that Cracker Barrel no longer has out their fancy soap and lotion in the ladies room. I know it's a cost cutting thing, but man, when you are on a road trip - those were sort of nice pick me ups, at least to me. I miss them.
We got to Chapel Hill about bed time and found it covered in icy snow and zonked out. I apparently kept the husband up all night moaning, shivering and sweating. He got me some Tylenol and I did sleep some better after that.
Our appt went well at UNC - and we got our medicine for the boy (or placebo) but YAY we found out that after this study we can participate in the NEXT one where he is GUARANTEED to get the enzyme. So, yes, we're IN for that one. I'd like to see if we can't get the OTHER boy in that one.
Everyone kept telling me how terrible I looked. Which is probably a sign that I looked really, really terrible.
After that we went to the 501 Diner which is a place where I am positive that XTA took me for breakfast like 13 years ago. It was still really good. I had an English muffin. And some tea.
And their toilets and floors are very clean - I know this because I threw up in their bathroom.
I want to go back there and eat food - without throwing up.
To add to my vomit highlights I'd like to add that I also threw up in an intersection - hanging out the car window - showering puke all over three lanes of traffic and my car,which my sweet husband cleaned up off the outside and some of the inside of the car. He laughed as he did it, which made me laugh and feel less stupid and helpless. No one is as brave in the face of vomit as my husband. I have 12 years of proof.
I also threw up at the South Carolina rest area- but it wasn't as clean.
He took me to the doctor when I got home, and VOILA my strep test turned colors the second they put it in the tube. Yes. Strep throat. So a ZPAC and another day's worth of sleep and I'm not completely better but MAN am I better.
And the most important thing - the boy got his medicine. We don't know if it's the placebo or not. But this isn't about us. Well it is. But it isn't. Because we know we can get the enzyme in a few weeks for sure regardless. If this works - it could make all the difference in my little boy's life - it could change his world.
If it works - it could change a lot of worlds. So we accept huge inconvenience and travel - and expense, and we accept that we might get the placebo.
And I would puke every meal I ate for the rest of my life, if that was what it took to make my little boys better.
I only took one picture the entire trip. Those of you who know me, KNOW how crazy that is. But here they are, my sleeping Princes in the hotel in Chapel Hill.
1 comments:
Sorry to hear about your plague! That sounds deeply unpleasant. I hate throwing up in public.
But yay for enzymes!
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