Monday, March 31, 2014

Treatment Update

Libby is off to see her neurosurgeon tomorrow morning. Just a check-in. Then, we'll go to clinic for our first chemo treatment (IV) since December. We would love for you to pray for us. Libby has been doing SO well. We're praising God everyday. So far, she has had seemingly zero nausea from her oral chemo drug. It's a little nerve-racking thinking about adding another drug. Although, the one she'll get tomorrow doesn't typically cause nausea. She'll also be getting her IVIG treatment. Sometimes this makes her feel lousy, too. It's a lengthy treatment day. And these lengthy days are getting tougher. This little stinker is growing up. And she's feeling better. There's not a lot of enjoyment just sitting around anymore! We appreciate your prayers for tomorrow. And for continued doctors' wisdom as they tweak her treatment plan. And add additional drugs. We'll be there bright and early in the morning. I'll update more, soon! Thank you! We love y'all!!!

Tuesday, March 18, 2014

World Down Syndrome Day

This Friday is World Down Syndrome Day. Libby will be four years old in two months. It's funny to think about where we were four years ago. Just a couple months away from welcoming our first child. Unaware of the fact that our world was about to be turned completely upside down. In the absolute best way possible. We knew we were getting a gift.  We just didn't have the capability to understand the magnitude of our gift. How she would force us to examine our own lives. And everything we valued. How she would help us see this temporary world we live in differently. How she would help us see the eternal world we were really made for. How she would reshape our dreams. How she would change the way we see people. How she would inspire us to love people.

A few weeks after Libby was born, I went back to see the doctor who delivered her. She wanted to check in and make sure I was doing okay. It was another one of those encounters God so clearly orchestrated for me. This doctor shared  personal stories with me. She told me about her sister who has special needs. She told me about another friend who has a child with autism. And then she said something I've never forgotten. She said, Every single child, every single one of us, has special needs. You just have the advantage of knowing Libby's needs up front. Well put. It think about this statement all the time. Because it's true. Every one of us is uniquely designed. Perfectly designed. By Him. Every one of us has weaknesses. And every one of us has strengths.
Libby was given to us with a laundry list of what would be her weaknesses. From day one. We heard the list over and over again.  She has low muscle tone. Her little body is fragile. There will be significant developmental delays. Things are going to be harder for her. I struggled under the weight of this laundry list. Sometimes I still do. But from the very beginning her weaknesses only seemed to highlight her strengths. Her peacefulness. Her willingness to go straight from school to physical therapy with a smile on her face. Her unbelievable patience with doctors and appointments. Her fierce tenacity in everything she does. Her joyful disposition. 
I took some videos of Annie and her cousins playing in the snow last month.  Libby was recovering from her second round of brain surgery. All I could think was what a contrast Libby's life was to theirs. At that very moment, anyway. And as a mom, my heart ached. Then, I showed the videos to Libby. She watched them with the biggest smile on her face.  She asks to watch these videos over and over again. And her smile never fades. Her best friends playing in the snow. She genuinely loves they're having fun. She's delighted for them. It happens in different kinds of scenarios. All the time. And her reaction is always the same. Happiness for others. That's Libby. 
Are things harder for her? Sure. In some ways. But it didn't take me long after having my daughter to recognize my very own laundry list of weaknesses. Guess what? I'm not very willing to do things I don't want to do. I'm not very patient. I can be tenacious, but mostly it's just because I want my way. And I tend to be envious when others are doing something I wish I could do. There are so many ways I wish I was more like my daughter.
We're so thankful for the way Libby has opened our eyes. We're thankful for the new friends she continues to bring into our lives. We don't just want to raise awareness about World Down Syndrome Day. We celebrate World Down Syndrome Day. We are all wonderfully made. He loves us more than we can imagine. Weaknesses and all. May He help us love the same way! 

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14

Little Miss Independent

Wednesday, March 5, 2014

Little Prayers, Little Conversations and Big Grace

I had to take Libby to the dermatologist today. And Annie had to go with us. At nap time. I usually try to coordinate Libby's appointments so that I have childcare for Annie. But we have lots of appointments. Some days it just doesn't happen. And today was one of those days. I'm always a little apprehensive taking both girls to appointments. You just never know. Some of our doctors actually have signs on their walls encouraging you to leave your child's siblings at home. Luckily, Libby's dermatologist isn't one of these. But Libby hasn't been 100 percent this week. I wasn't sure how she would feel after school. Annie doesn't like to sit in a stroller for more than a few minutes if we're idle. And this particular visit would creep well into nap time. Just so you understand my doubts. But off we went. Annie was super excited to go with us. She knows we go to the doctor all the time without her. And I guess she thinks she's missing out on something. If she only knew. Libby was thrilled to have her partner in crime. When we pulled into the parking garage I threw up a few prayers. You know, Lord, please let us get through this unscathed. In and out, God. In and out. I looked back at the girls after I parked. Right? They just smiled.

The man stuck in the elevator with us sounded like he had pneumonia. I was trying my best to shield the girls from his coughing. He looked us up and down and told me how beautiful they were. I thanked him. Then, he proceeded to tell me he was exhausted just looking at me.  And he followed that up with, And you know this is the easiest it'll ever be. Just wait. I laughed and told him I'd heard that (and secretly wondered if we were stuck in the elevator with the devil in the flesh).   Annie told me she pooped the minute we walked in the office. And our stroller was too big to fit in the room. Otherwise, we were good. We saw the sweet doctor. Got our prescription. And made it back to the car. Thank you, thank you, gracious God. I muttered as we were getting back into the car. And here's a snippet of my conversation with my girls as we drove away....

Me: We did it girls! That was a successful, relatively pain free visit to the doctor.

Libby: Doctor. More doctor. More doctor (she loves her dermatologist).

Me: I'm glad you like your doctor. He is so nice. And you did a great job today, by the way. Good listening to me. Good listening and talking to the doctor.

Libby: (beaming) Okay!

Annie: I so proud of you, Libby.

Me: And I'm proud of you, too, Annie. You were very well-behaved in the doctor's office.

Annie: I so proud of you, too, Mommy.

Me: Well, thank you, Annie.

Thank you, thank you, gracious God.

Tuesday, March 4, 2014

Chemo Update

I had hoped to update you all before today's appointment. But Libby was running a low grade fever yesterday. And for us, unfortunately, that warrants a trip to the ER. We spent the afternoon there. And I went to bed last night at 8:30. :) Thankfully, her labs were good. And she seemed to be fine. We had an appointment scheduled for today. They let us come home. We're praying it's just a little cold/viral something going on. And that she continues to feel better. All of that said, I never got around to updating the blog like I wanted to.

I wanted to ask for your specific prayers regarding the doctors' plan for Libby's to be continued chemotherapy. I know you all have been praying. I'm so thankful for each and every one of you. And I like to give you some of the things we're desperately leaning on Him for these days. Libby is doing very well. It's been incredible to watch. She's doing so well, in fact, they're ready to start her chemotherapy up again. And as much as I don't relish the idea of chemo. I relish the idea of leukemia way less. I trust our doctors. They have been on this journey with us from the start. They are so in tune with us. With Libby. The doctor even told me today he thinks the Moyamoya still trumps leukemia at this point. He knows we're in a precarious place. The plan is to start slowly. He's going to take the drug that has proven to be most beneficial in this maintenance phase (even though we know Libby's big side effect with it is nausea). We're going to start with a very low dose. We're going to give it at a different time of day (this drug has metabolic side effects and we want to see if this makes a difference with the nausea). And we'll couple it with zofran. Our goal is to get some of this poison in her. To keep fighting any annoying leukemia cells. While trying to keep her from vomiting. The vomiting seems to be the biggest concern from the neurologist's standpoint. We'll check in with the leukemia team in a couple of weeks and let them know how it's going. They may add another drug at that point. Then, maybe another. We'll see.

Here we go. Would you continue to pray for Libby and her continued recovery as we add this back into the mix. That she would stay well. And would you pray for wisdom for our doctors as they monitor her progress and make further decisions. And please pray for us. It's times like these when I feel the responsibility begin to mount. And with that, the anxiety. Trying everyday to focus on Him. Not me. I mean, really, what can I do? :)

But Jesus looked at them and said to them, "With men this is impossible, but with God all things are possible." Matthew 19:26

We love y'all!

All It Takes

It seems all it takes for this mama to maintain a little bit of her sanity is....lots of prayer. Gobs and gobs of God's grace. Daddy back in town. Little ones back in school. Reinstated mariachi night at the Mexican restaurant. And a margarita.