Baseline Day - August 26, 2015

Pleasure and pain. Yesterday was a resting day. I didn't really need it, but you have to take a day between screening and baseline for the doctors to determine whether you meet the criteria.

So, I spent the day resting. I tried to sleep in, but it turns out that sleeping in is really waking up at 7 am and not being randomly woken up by Aulton and Lyla in the 5 o'clock hour (or earlier). Uninterrupted sleep is really so nice - one of the pleasures of my trip. I went and got a pedicure, went to lunch, did a little shopping, went to dinner and went to a movie. And, made a fairly quick trip to the hospital to sign some more papers and get the holter monitor removed. It ended up being a pretty fantastic/pleasurable day.

Today, was filled with some pretty good experiences, as well. I did PT for several hours this morning, same type as I explained in the earlier posts. I ran faster and performed about equally as well as I did, two days ago, on the other tests. Afterward, I had quite a bit of down time; I did a bit of reading (am I ever going to get into "Code Name Verity"?), made some important phone calls, talked to Mike (yes, he's important, too) and ate lunch.

After lunch, a friend of mine, who I met on Facebook is there with her sweet son, Dallen, who's 8. He's seriously adorable. I imagine Aulton would talk like he does, if Aulton ever speaks. He and Aulton share the same laugh. Deanise is Dallen's amazing mother. They are there so Dallen can participate in the same study that Aulton does.

When I was done for the day, I went into Dallen's room to say goodbye to them. Dallen was crying from the stickers they put on for the EKG. I asked him if he knew that I thought he was incredibly brave. Between little sobs, he said "yeah." it was the cutest matter-of-fact answer ever.

After my first visit with Deanise, Dr. Johnson came in. I jokingly asked if I had passed the screening. He seriously replied that they don't usually give biopsies to people who fail the screening. This was my warning.

First, he performed the EMG. The needle hurt a bit more today. He only pulled it in and out 20 times. The last five really hurt. I asked him to be really honest about how much the biopsy was going to hurt. He said, most people say it hurts less than the EMG.

Apparently, I am not "most people".

Getting the second sample

The Lidocaine

OUCH!

The tissue - for research that can help for this and future studies

The Incision
 

The biopsy is an interesting little procedure. First, the doctor rubs a huge area by the front of your left tibia with iodine. Easy. The doctor then takes a needle pumped full of lidocaine and numbs the area. A little harder. Then, he takes a scalpel and makes an incision about half an inch long above the muscle and approximately 2-3 tablespoons of blood starts pouring out of it. Still not too bad. The worst is over. The doctor puts a needle into the incision to extract tiny pieces of muscles, you can't feel anything, then he hits a nerve. The pain is excruciating; it travels from the incision down your leg, to the tips of your toes. The doctor knows you are hurting because you are gasping and the researchers are telling you to breathe. The doctor needs to get his sample. He does it quickly and hopes it is enough. It's not. He finds a new place within the incision, gets more tissue and the whole ordeal is over. He lets you look at the tiny pieces of muscles. He tapes and bandages your legs, tells you he is sorry and that he will see you in 5 days.

Can't wait.

Symtoms Today:
A throbbing left leg, that I'm really not supposed to put weight on. Good thing you don't have to walk at all at airports
Less back and shoulder pain (I haven't lifted any big kiddos for several days)
myotonia in hands from exercises