Update on clinical trial

Wow, I am just realizing that I really haven’t written on my blog in a while!!  Guess I have been busy!!

I went to Cincinnati this week for my lung appointment.  I did my lung tests and met with my doctor, and unfortunately, my lung function did decrease further from the last time I went.  This is very disheartening b/c I am in this clinical trial, and was hoping that I would not decrease any further, and I just keep going in my downward spiral.  So, now, I am at about 27% lung function of a normal person.  If I am being completely honest, I don’t have much more room to decrease further.  I am about at the limit here.

I also have to admit that I have really been feeling the lack of lung function that I have lately.  EVERYTHING is becoming so difficult these days.  And I mean, everything.  Being a stay at home mom has been so difficult with the two boys.  Especially with it being warm now.  They want to go out and play, and my oxygen tubing really does limit me a lot.  I make it work, but that certainly doesn’t make it easy for me.  I will say it one time, and then I won’t say it again…I HATE LAM.  It is so horrible.  I would really like LAM to go away.

Outside of that, God is a loving and a HEALING God.  He has touched my life so much in just the last year.  Here, I am dying of this horrible disease and have horrible days EVERY DAY.  Yet, I am so hopeful and so joyful knowing that I can do all things through Christ who strengthens me.  And I have faith in the promises that He makes to us that He can heal us!!  So, I know that through a miraculous healing or new lungs that will last more than the short time that they usually do last, I WILL BE HEALED.  Thank you Lord.

Man, I am tearing up just writing this right now.  And I am not a crier, either.  I just am in a point in my life where I do just feel so fragile.  This is a lot to go through for any person.  Yet, I know people who have worst things than me and do not have even a small percent of the people that I have pulling for me and praying for me.  I am just so thankful, thankful, thankful.  I have so much to be appreciative of.  And I would never forget all of the support that all of you give me.  If you are even taking a minute out of your day to read this blog, then you are one of those people that I am talking about.  People who care about me and my family, and keep us in their thought and prayers.

I would like to dedicate lots of love to my husband, Jay, who is there for me day in and day out every day.  Working all day, coming home and cleaning, taking care of the kids and doing what I can’t do…and never complaining about a single thing.  And I am so thankful for his acceptance of how I look with tubes in my nose every day.  And as always, he makes me feel beautiful every day, despite my shortcomings and my limitations.  In 2 months, we will celebrate 7 years of marriage, and 11 ½ years of being together.  I love that man.  He treats me the exact same as he always did.

I am just so thankful for a God who is forgiving and loving and that He died so that we might live.  By His stripes, we are healed.  Thank you so much for all of your love and support and encouragement.  xoxoxoxoxoxoxoxoxoxoxoxoxo