Days 4 & 5 - September 3 & 4

Walk like an Eygptian....... if Egyptians limp.

This song has been running through my head lately because before I left, Lyla had been asking me about Egyptians. I think her class is learning about them and I introduced her to the song with hand movements and all.

I have a Vivofit pedometer that I'm kind of hyper-focused on most days. I always try to get pretty close to 10,000 steps, which sometimes is very easy, considering how busy my kids are. Sometimes, I run up the stairs a few times at night to reach it. More often than not, when I go to bed, my steps are between 8,500-9,000.

This week, I have spent a good deal of time sitting around. It is not easy for me to do. Yesterday, was a resting day, which I kind of needed because the moment I put weight on my right leg (the leg I got injections in), it hurt. It hurt every time I took a step. I decided I wanted to go to Trolley Square to see what was new and I also had fun lunch plans with my cousin, Machelle, in Bountiful. I also went to dinner and to the Salt Lake City LDS Temple with my dear friend, Becca.

So, last night, when I was ready for bed, I checked my step watch and realized I still ended up walking 7509 steps. So, my right leg, where I got the injections, hurt about 3700 times yesterday. It still hurts today when I walk....not as bad, though.

As I thought about it, I became a little discouraged. I didn't want to walk yesterday, but did out of necessity and desire. I imagine Aulton would feel the same. I don't want him to be in pain for days. It makes my heart hurt thinking about it. This is probably the most difficult thing about Aulton's various diseases: his inability to talk and tell me how he is feeling. He goes through so much; more than me, more than my husband and more than my other kids. His little body honestly goes through more than most adults. His muscles most likely hurt all the time, I don't want to make things worse for him, but it will really depend on what kind of results the medicine produces in the long run (in all the participants). It's so hard thinking about, though, because just like the infusions we give him every week, he won't understand why I keep doing things that hurt him. And, that is hard, it just is.

Baby Mark

But, this is important for everyone affected by this disease. One truly bright spot, a tender mercy, if you will, happened on Wednesday (day 3). I met Keith Taylor, whose son, 6-month-old, Mark, was here, from Anchorage, Alaska, for the study. Kids with Myotonic Dystrophy have a marked hypotonia. Sometimes people call them "floppy" babies. Aulton felt this way and although it is an indication of the disease, it makes for a super snuggly baby that just kind of melts into you. I got to hold Mark and while he was tucked up against me in his melty way, my heart also melted. I got a chance to hold
Aulton again. It was heavenly and time just seemed to disappear, while I looked at this baby and thought of his future. I know it's going to be hard, but this made my work and the drug trial all that more important. Just like when I met, Dallen, last week, this is beyond me and my littlefamily's life. I want to thank Keith and Nikki (she has a great name, right?!) for sharing their baby with me. It made my day of walking easier to bear.




Injections in my left arm

Today, I got injections in my left arm. I ended up with two pretty good size bruises on my leg from the injections there 2 days ago. The arm is the third option, so I wanted to try all three sites to see which I like better. Also, when Dr. Johnson came in today to do my physical, he said that all the data I'm providing them (which includes pictures of my reactions, stinging time, etc.) is helping them to determine how to make the shots more comfortable. This was good information for me to have because I know Aulton is tough and he would be ok, I just want it to be as easy for him, as possible, when he gets the drug. FYI- Myotonic mommies - a woman in Utah gave birth to a baby, this week, with this disease. Dr. Johnson asked me for our Facebook group, I told him about the congenital one and he is going to talk to her about it today. I know you will all do great in welcoming her. Her baby is in the NICU.  
So, the shots felt about the same, although the insertion of the needle hurt a little less in my arm than the other areas. As I'm getting the injection, the last ML of each needle really starts stinging, no matter which area gets the injection. The burning on the arm lasted longer than the other sites, too, about twice as long at 15 min. I will have to see how the arm looks tomorrow to determine whether I want to walk around with the redness, bruising and swelling for everyone to see.

So long, Salt Lake City, see you in 3 days. Cannot wait to see my beautiful family!!!

Symptoms Today:
This is the most exciting one--- I was able to slightly lift my left ankle off of the floor into a miniature tippy-toe. I don't know if it was because I was super determined to do it, or if I got the med and it is working! I had a lot of calf cramping after, but I did it.

muscle pain in my left quad- all week, so weird

muscle pain in my right quad from injections

bruises from blood draws on right and left arms

bruise on my stomach from injection

pain in my left tricep from injection

Overall muscle pain - very mild (possibly due to inactivity) It will be interesting to see how it goes in the coming weeks, as I have short trips to Utah and am going back to my regular routine of taking care of my kids. A quick aside- my respite workers are gone. Kylie got a full-time CNA job and Wyntre is going back to BYU-I next week. I have no prospects and am not hiring someone new, so I will be doing the daytime stuff all alone. So, we shall see how this pans out, in terms of muscle pain.