WE SURVIVED TODAY, WHAT WILL TOMORROW BRING

Monday has come and gone. No migraine. No meltdown. Mama is happy. Even though his oxygen was fine, Colby's heart rate was even higher than yesterday. Mama is not happy. It's the old, "hmmmm, let's start ruling out what is causing this" song and dance. I can tell you after a double dose of Miralax and 2 of the fullest diapers I've ever seen, the problem is NOT constipation. I talked to Colby's pulmonologist today. We agreed to discontinue Claritin and start him on Zyrtec. Check, did it. He also recommended starting Colby on Zantac. Many SMA kids have issues with reflux. Although Colby hasn't had this problem before, I'll try anything at this point. Colby simply CANNOT get sick when I'm not going to be around for a few days to take care of him. It's not an option Colbster. So, Colby is now on Zantac. Check, did it. Then when I was giving Colby his afternoon shaky vest/cough treatment/bi-pap break, I suctioned a bunch of yellow-green nasty booger stuff out of his nose. Yeah, I know, TMI. So in the morning I'll call the pulmonologist the updated snot status and we'll take it from there.

This is the kind of stuff we SMAers talk about all the time. Something is up with my kid. Oh no, what does his/her snot look like? Is it thin, thick, what color is it? Something is up with my kid. Oh no, what does his/her poop look like? Is it thin, thick, what color is it? You think I'm kidding, but any SMA parent out there reading this is going yep, been there, done that. As a matter of fact, just had a conversation with an SMA mom last week because her kid was having, and these are her words, "applesauce poop". So, as many times before, in the upcoming days I will be keeping an eye on Colby's poop and snot. If that ain't love, I don't know what is!

It's hard to explain how I'm feeling right now. I haven't had the fatigue the last few days like I had been having. I'm sure it's just anxiousness disguised as extra energy. My nerves are a complete clusterfuck right now. As far as I can tell, things are pretty much lined up around here for when I'm gone. Did I mention Colby and I will be spending 120 horrible, long, painstaking hours apart? I keep telling myself stop worrying, stop obsessing, stop whining, at least it's not chemo, the people taking care of Colby will do a great job, it'll be over soon. You know that noise when you put your finger on your lips and move them up and down and hum? That's what going on in my brain right now.

So let's talk about something else. My Hoosiers had an impressive road win over the weekend, beating rival Purdue. Way to go IU. I'm also thrilled with the outcome of the Super Bowl. I really liked Madonna's half time show. I thought the choreography was amazing. I hear there was a kid from my hometown in her routine. That's pretty impressive for a Henryville boy, to be performing with Madonna at the Super Bowl. Talk about a once in a lifetime event.

I stayed busy while Colby was at school today. The Spongebob border in my bedroom is gone, got that finished. The mountain of mail I usually have overflowing on my desk is now just a few pieces of paper (mostly medical bills). Laundry is caught up. Got Colby's supplies and supplements ordered for the next couple weeks. While Colby is at school tomorrow, I go and get a shot to lower my thyroid level to prepare for my iodine therapy. Now that's a good time if I've ever heard of one.

Many family and friends have called to offer help while I'm getting this thyroid stuff done. Colby and I are so blessed to have so many loving, wonderful, thoughtful people in our lives. I've said it before and I'll say it again. I've made many bad decisions and made many stupid mistakes in my life. But my choice of friends sure isn't one. My support system means everything to me. I can't imagine my world without my bestest girlie friends. I also have the best family in the world. Both my aunts have contacted me just to say hey, thinking of you, love you. And of course my parents have been awesome, as always. They just can't help themselves!

Guess I'll sign off for now. Can't wait to see what tomorrow brings! You just never know around here. Night all.