October 5 - Day 36 - Dosing and 24 hour blood draw

Bravery and Strength

People keep telling me I'm brave and strong and while I really appreciate the compliments, they are simply not true. Aulton is brave, Evan is brave, Steve is brave, Dallen is brave, Jay is brave, Baby Mark will be brave and Kayla is brave. So are the many other children fighting this disease every day.

I can only really speak for Aulton, but he is one amazing kid. The stuff he does, with a smile on his face, astounds me and is a gift. If he can go through everything he does and continue to be happy, doing this study is something small that I can give to him.

I have not been looking forward to today at all. It is the 24-hour blood draw. So far, my blood has been taken 8 times. Before I leave, tomorrow, it will be taken another 3 times. Sometimes it's just 3 tubes, sometimes it's 8.  My blood pressure has been dangerously low and all these draws do not help. Last week, it was 87/52. This morning it was 89/60. The nurses always think there is a mistake. It is never a mistake. I will have vitals done, again, in the morning and it will be interesting to see how much affect the draws had on my blood pressure today.

My handy-dandy IV (Yes, it hurts).

Today is the last day I actually get any injection. I got this one in my right leg and it still hurts (8 hours after the fact). I only am coming to SLC three more times; once more in October, once in November and the final time in January. I heard, this morning, the new group has to do 6 extra weeks. The purpose of this phase is really to determine how long the drug stays in the body and how high of a dose is tolerable.

I was really healthy while we went to San Diego,

3 of my favorite brave and strong ones

but last night at the airport, I started to feel really sick. I just wanted to sit down and have some water. I got really dizzy and it felt like I was walking in a fog. After I got some water, sat down and ate some fruit I felt a lot better.

I didn't get much sleep last night and my eyes are blood shot and I woke up without a voice. It has slowly returned, but these last 3 visits would have been so much easier had I been completely healthy, but that is not what a body with lupus and myotonic dystrophy does.

While things are not perfect, I want to get a little bit more into some of my feelings about this study and how I think God is involved. If you are bothered by spiritual discussion, now would be a good time to stop reading.

When Mike and I decided that this was something I should do. We didn't know how we were going to make it work, It helped that my mom doesn't work on Mondays and that my dad is Superman and helps with my kids all the time, but.....it's a lot of traveling. It's a lot of time to be away from my kids. Mike just said, "I don't know how we will make it work, but we will."

So, I signed up for the trial without having an idea who would take care of my kids, but feeling the calming presence of the Spirit, letting me know they would be taken care of.

On the very first day of the study, as I was driving around looking for a drugstore because I had forgotten a comb and chapstick, Mike called me. He had been offered a job at Raytheon, in Tucson. He had interviewed for this job many times, with different people, over the past few months. Due to the type of job it is and the way that it may change our lives, we knew that he would accept the job if they offered it to him. I prayed about it that night and so did he, but we both felt really good about it. So, the next day he accepted the job. Voila! Who would take care of our kids? Mike would. He no longer had the stress of a billable hour requirement. He found ways to get all his work done at home and after he gave his notice, the big cases  - the time consuming ones- stopped coming to him. Freeing up time to take kids to appointments, be home when they were home, etc. Heavenly Father swooped right into our lives and made everything work out better than I could have imagined. I could not have planned this myself and it is not a coincidence.

While Mike was interviewing, there were always the questions revolving around Aulton. Where would he go to school, could I find therapy, respite workers, what would I do about transferring his state services, how would I change his IEP. Moving is a lot of work, it is more work with Aulton. But, I told Mike that God has a hand in Aulton's life- ALWAYS. I have found this to be true over and over again. If we are supposed to be in Tucson, God would make it work out for Aulton, as long as I did my part.

It's a big part. I spent the first two weeks of the study on the phone. I had a lot of down time and I wasn't ignoring any kids, while I called schools, agencies, posted questions on Facebook groups, communicated with other parents of special needs kids and made lots of lists.

The first weekend I was home, I had found a realtor, she had time on Saturday and we went house shopping. I planned for this to be a long process. We want a single-story home, with a pool and three garages and lots of other things. We found our new home that day. It was the cheapest home we looked at and by far my favorite. I fantasize about this house constantly. You do not find your dream home, the very first day you start looking UNLESS God is helping.

I have found a school for Aulton, I have found a school for Lyla, I've worked out some of her extra-cirriculars, we close on our house in two weeks, Mike starts his new job next week. Things are falling into place. I still have an incredibly long list of "To-Dos", but things are getting checked off.

Has it been hard to do a study and plan a big move simultaneously? Absolutely. Has is been worth it? Undoubtedly. Is God in the details? I've never been more sure of anything.

I'm thankful he helps scientists cure diseases and I'm thankful for his hand in my family's life. It is always there, but sometimes it's so very obvious that I cannot deny it. If I have any bravery or strength, it is because of  Him.