What a Mighty God We Serve!

Things I have done this week for the first time since Haley was born:
1. Took her out by myself somewhere-ok if BigLots counts
2. Lifted her into the car by myself and took her out
3. Lifted her out of the bathtub for the first time since she was born
4. Took her to see Daddy at work
5. Raised her up on my shoulder to hold her
6. Walk around the house holding her
7. Moved her around in her fun play toys-lifting her in and out of her swing and then into the bumbo etc.
8. Actually got on the floor with her to play and could get back up by myself

Things being sick teaches you:
1. Never take a day for granted
2. Live in the moment because you never know what tomorrow might be like
3. Don't store up treasures on earth because when you are at the bottom nothing really matter but how you have treated people and how you have lived your life
4. Nothing in life in guaranteed and it could change at any moment
5. Everyone has a struggle in life, whether its family problems, financial problems, health problems, etc. Don't feel sorry for yourself, but learn to adapt and manage the situation you are in
6. Prayer is the most important thing in life
7. When you feel good, use the money and time you have to help others, it makes a huge impact on a person when they are feeling low
8. Small petty things in life don't matter
9. Never take your body and health for granted, be thankful when you wake up to go to work that you can get up and put your clothes on
10. Last but not least, love your family, they are the ones who will come through in tough times and stick by you through it

Next Sunday we are heading out! I've become pretty attached to my little girl, we have been through a lot together the past 11 months or so. It's going to be hard to leave her, even if it is a couple of days and I know her Gramma and Grandfather are going to spoil her while they are here, but her mamma's got to go get some answers from the experts. I'll post a big blog next week when I get home! Please keep praying for our trip, save return, and for Dr. Engel and the people at the Mayo Clinic who I will be seeing!

Steriods=Chipmunk Cheeks

So my new name is Alvin, since I look like a chipmunk with swollen cheeks. Prednisone does crazy things to your body. I had to go buy a Claires fake diamond ring this weekend cause my fingers are so swollen my wedding ring doesn't fit. George thought I was joking when I sent him a picture of my new ring. He didn't mind that I bought it when I told him it was $5.

Good Week

I have felt exceptionally good this week. Probably the best I have felt since December with several good days in a row. My right hand d0es not want to corporate, but everything else seems to be getting the messages right. Here is what I have done this week:

Sunday-Church and Wal-Mart
Monday-Cleaned House
Tuesday-Haley's Doctors Appointment
Wednesday-Went to Mom's school and ate lunch with Haley, Church
Thursday-Hobby Lobby, Rosa's, Target
Friday-Barrera's for dinner with Brandon, Mary and Lindsey
Saturday-Plans to go to Hillsboro to the Gap and eat at iHOP

WOW!!- Big week for me and I felt really good doing all of these things. I have no real explanation for it, but I'll give the credit to God and prayer.

Our flight, hotel and rent car are all booked. Two weeks until the big trip. I feel kind of like I'm going to see a movie star or something. Dr. Engel is one of two people in the USA that does the research and testing for CMS, and I think I might just get my picture made with him when I see him Monday the 4th!

May 4th

The date has been set!!!!! May 4th I will be at the Mayo Clinic in Minnesota to finally get some answers! I think we are flying now and they said plan to stay at least 3 days! Haley will be staying here with Grandma. George, Mom and I will head North!!

Update

Dr. Engel has agreed to see me at the Mayo Clinic and hopes to get me in the week of May 4th. They have to make sure all of the doctors that will be doing tests on me that week will be there so I'm waiting on a call back from his secretary. Dr. Engel is like the researach king of CMS. He actually helped to discover the different types of CMS and has done so much research on it, so out of anyone, he is the man.

They are also sending me a test kit where Mom, Dad, Sara and I have to give a blood sample where they are going to do some genetic testing on it before I get there. I think they are going to let Haley off the hook on the blood work since she is only 8 weeks old.

Keep praying......

But You Don't Look Sick...

http://www.butyoudontlooksick.com/2009/04/my_roulette_kinda_life.php#more

If you are in need of some reading material, here is a little essay written by a lady that kind of sums up how I feel right about now. My favorite line is "The disease is in control, I have to accept not being able to spin the wheel and I have to just live with the results. Hopefully, those around me will learn to accept this too." So true!!


Another example is called the "Spoon Theory". I'll shorten it for your reading pleasure..

I start the day with 12 spoons. Each time I do something it take a spoon away. The spoons represent energy or movement. So, you say you first get ready for work. No, I say I wash my hair-minus 1 spoon.

Brush my teeth-1 spoon
Dry my hair-1 spoon
Get breakfast-1 spoon
Eat breakfast-1 spoon
Put my shirt on-1 spoon
Pants-1 spoon
Walk into work-1 spoon
Work-Lets just be conservative and say -3 spoons which we know would be more
After work-1 spoon left... what shall I do.. shower, eat, clean, oh and if I do more than that one spoon then it takes away from my 12 spoons that I start with tomorrow..

Thought this was a good little example of how to explain to someone about a neuromuscular disease like CMS.

My appointment is still set for May 26th in Minnesota at the Mayo Clinic. I am working daily to get that moved up asap, but I have to jump through the hoops first and beg. I have already done some begging this morning with them on the phone, so maybe if I nag them daily I will be in Minnesota in no time! Please begin to pray for this trip and for some answers and help!

Doctors Appointment Today

I saw Dr. Nations at UT Southwestern today. She basically said she thinks I have Congenital Myasthenic Syndrome which means I was born with it and did not just develop it in adulthood. She thinks this because I have not responded to any of the treatments so far, so thats her conclusion. She wants me to go to the Mayo Clinic in Minnesota to see a specific doctor and have some more tests run. So, that is my mission is to get the appointment and everyone squared away for our big trip to Minnesota. Who would have thought I would be excited about going to the doctor, but if it means helps and understanding I'll do anything at this point.

She wants me to up my prednisone 60mg for a month just to try and see if anything happens. She also wants to stop my IVIG treatments, but I talked her into letting me finish out the month and do 2 more treatments and then stop, just to see.

So, thats the news. I didn't get the real answers I was wishing for, but with this diagnosis, things arn't crystal clear. So now my hope is in Minnesota and the doctors there. Road trip!!