Friday, June 25, 2010

The Bag O' Meds

Going to go out to dinner tonight with my beautiful family and then make a pit-stop at Target pharmacy to get Hunter and Ren their meds.
It's amazing to go out to dinner and bust out the bag of meds. The reactions we get from people is overwhelming. There has only been one woman that has ever asked me "why" they take them.
People, instead of the daunting stares and hush hush of the talking (that we can still hear) why dont you ask. If people would just ask, I would be more than willing to not only explain the numerous meds they have to take but also inform them of this disease, Cystic Fibrosis.
We just do what we have to do and if it doesnt bother me, it wont bother the kids. This is who they are. This is all they know. Nothing wrong with it.
I am so proud of my children in the way that they take their meds the way that they do. They are so much stronger than I ever could imagine being.
There WILL be a cure. We need to keep praying. To think of a day where the kids would no longer have to take 12-15 meds a day just to eat and stay healthy is unimaginable at this point...BUT POSSIBLE.
I am going to stay positive for my children. They feed their energy off of me.
God is good. God is great. He can perform miracles. This I know. This my husband knows. This my children know. They are going to be taken care of no matter what. Jesus Loves Them and they know it.
I love my babies.

Thursday, June 24, 2010

Death-So Final

Tonight, my mom called me and told me that one of my cats at home had to be put down. She was in so much pain and so old. It was kidney failure on top of blindness. I know she may be just a cat to some, but she was a part of the family. My cat, B.B., past away a few years ago, and was so hard on me. I think the hardest part with Sissy passing, is that Hunter had grown so attached to her. He was crying and praying to Jesus that he take care of her. He is writing a letter tonight to Sissy and wanting Jesus to come tonight and take it to her.

Death, is so final.

I am at a place in my life where I trust God with everything I have. Especially my kids with them having CF.

I don't understand though, and never will, why some go through so much pain. It's not fair. It never is. I see so many of my friends who are parents of children that have lost their kids to CF and it breaks my heart. Why? Why children??

The only thing I know is that the Lord has a bigger plan for them. Something, we here on Earth, will never understand.

Even though it was my cat that we lost tonight, she was a loved one who was part of the family, just like any child.

My heart just aches. It aches for my parents. It aches for Hunter. It aches for Me. It just aches. I am sad.

I ask the Lord for understanding and strength.

My Kiddos

This is going to be the first blog of many to come.
Just to update on the kids:
Serenity was taken off of Creon last Saturday and put on Zenpep. So far, she has been doing pretty well. Her stools are still a little thick but at least her tummy doesnt hurt like it did.
Hunter will be getting off the Ultrase that he was put back on in about a month to go onto Zenpep. He was on Creon and that did not work for him either.
I get so mad at the FDA for not approving the pancrecarb and ultrase that so many people with CF were using. For so many, those were the only enzymes that would work. I just dont understand it, I never will. All I can do is pray about it, that they do eventually get approved, and do the best I can do to keep these kiddos healthy.