Thank you so much for your outpouring of love and prayers. I don't have a lot more information at this point. I'm still very overwhelmed. I'm still a lot of different things. But with all that, I have these great moments of peace. I attribute this to your prayers. I really do. And...we made it home! I can't believe it. At one point they were talking about keeping us in the hospital for a couple of weeks. And two days later we're home. We're so thankful. And, of course, quite nervous. Please keep praying for us. Libby is doing amazingly well. This seems impossible, but she seems happier than usual. She's a little weaker. You can tell she's not 100 percent. But she seems to be gaining her strength back slowly. She's talking. And she laughs constantly. This little girl!
I'm hoping to find out a lot more information this week. Where exactly we go from here. I know the next few weeks are recovery weeks. Rehab weeks. And the goal is to take every precaution to try to keep another stroke from happening. This entails taking baby aspirin everyday. Aspirin poses its own risks, but the benefits for Libby outweigh these risks. Keep those prayers coming!
I'll let you know what unfolds...
Friday, December 27, 2013
I'm not sure I'm in a place to actually be writing this post. I don't really feel like writing. But I'm going to write anyway. I write for Libby. I write for myself. For our family. I write because I believe in our Father's goodness. I believe He is in control of every detail of our lives. He's working every single thing for good. He loves us more than we can begin to comprehend. And somehow this is all part of His perfect plan. I don't like this part of His plan. But I don't see the entire story like He does. I'm stuck in a chapter. A crappy chapter, by my standards. A chapter that is breaking my heart. Luckily, I know how the story ends. I know it's beautiful. Glorious. I'm just struggling a lot with the in-between.
Things have been crazy since Libby's last treatment. That's why it's been a little radio silent over here. One thing is for sure-we do have a compelling story. We were in the hospital. Made it home for Christmas. And then ended up back in the hospital. She has a virus. Chemo has done a number on her blood counts. And this morning, we got even more news. Libby had another, more significant, stroke. Totally unrelated to leukemia and chemotherapy. She has something called Moyamoya Disease (I know, it sounds like I'm just making stuff up). It's a cerebrovascular disorder. It's rare. But it's more common in children with Down Syndrome. It's pretty scary stuff. It's progressive. Without treatment, it's terrifying. Thankfully, there is treatment. Brain surgery. If they determine Libby is a candidate. We pray she is. However, the brain surgery-equally terrifying. To me, anyway. But I'm not a neurosurgeon. So that's where we are. We're still in the hospital. The doctors are orchestrating next steps. We've got more tests. We've got rehab for Libby. And we'll go from there. I wanted to get this out to you, our faithful prayer warriors. Because we need every single one of your prayers.
Our nurse cried with me, today. She told me how amazing Libby is. As Libby giggled in the bed watching her TV show. She told me she's always thought children with Down Syndrome are angels. I can't tell you how many times we've heard this. I don't know if it's true. But, for me, the evidence is mounting. Libby impacts my faith. Daily. She rewires my thinking. She teaches me about His love. But I digress. This nurse, she shared chapters of her life with me. The messy ones. The painful ones. And she shared how she can sometimes see, often in hindsight, God's miraculous piecing together of her story. She shared how He's strengthened her faith. He's proved Himself true. And I told her I'm really just sick of all of it. Especially for Libby. I just want her to be happy. That's it. I just want her to be happy. And she looked at me and said, But you already know our bodies are just our shells. Underneath SHE IS. She really really is. You know this. And I knew instantly it was Him. Reminding me, the truth so often unfelt by me, true joy is found only in Him.
Please pray for us. We love y'all.
Friday, December 13, 2013
Christmas is in full swing around here! And my girls, like me, absolutely love it.
We watch Elmo's Christmas at least twice a day. I try to deny the third and fourth (and fifth) daily requests.
Annie, a girl after my own heart, is ever the little shopper. Libby has taken a trip to the North Pole with her daddy! We're wrapping presents. Eating too much. And loving getting all the fun cards in the mail. Did I mention both our girls flipped off our ottoman while we were trying to get our own Christmas card picture? Apparently, Hib and I are hilarious. And they laughed so hard they both just rolled right off. The laughter quickly turned to tears. But we got a picture. At our sweet little girls' expense. Yep, 'tis the season!
It's also time for Libby's chemo treatment. This Monday. Would you pray for us? She'll be sedated. She'll be getting a drug she's never had before. It's replacing the drug she was having so much trouble with. Unfortunately, this new drug causes even more nausea. And she struggles with a lot of nausea as it is. She'll also be getting her IV chemo, and an IVIG infusion. It's a long day. My prayer is for Monday to go smoothly, but also that Libby is not horribly sick afterwards. As you can imagine, there are lots of fun festivities in the coming weeks!
I hope everyone is having a wonderful and blessed holiday season! We love y'all!!!
Tuesday, December 3, 2013
This Thanksgiving was one for the books. :)
No need to walk you through all the grisly details. Let's just say we weren't well. Not Libby. Not Annie. Not Me. Not Hib.
We made it through Thursday. But things took a turn for the worse during our weekend in the mountains with our family. I have a feeling this will be one of those Thanksgivings we'll remember for the rest of our lives. And that's what the holidays are all about, right?! Making memories. Mission accomplished. :)
We're well now. All of us.
And we're so thankful. In fact, even amidst the nasty virus that ripped through our entire little family. Taking us all down. One by one. I desperately tried to keep practicing thanking Him in ALL things.
I mean, it was Thanksgiving after all.
And you know what?
So THANKFUL for all of you!!! We hope everyone had an amazing Thanksgiving!!! And that you stayed well. :) We love you!