Monday, January 27, 2014

Surgery Is Scheduled

 I talked with the neurosurgery clinic today. Libby's surgery is officially scheduled! The surgeon wants to give Libby ample time to recover from the angiogram. So he's pushed surgery a couple of days. Her first surgery is scheduled for Wednesday, February 5th. It sounds like she'll stay in the ICU until it's time for the second surgery. And that one is scheduled for Friday, February 7th. We're very thankful to have a "plan" in place.  Your prayers continue to sustain us.
In the meantime, we're good! BEYOND thankful for a relatively warm day. And the rare opportunity to get outside. We spent time at the park. And the duck pond. And I'll leave you with this little snapshot of our days...
 We saw a group of girls at the park wearing their school uniforms. The same uniform our cousin wears. Libby was upset. She couldn't grasp why Hadley wasn't there. She kept asking the girls. They humored her for a bit. But Libby just kept asking. Hadley? Hadley? Hadley? They went to play. I tried to explain. And eventually she got over it.

Annie was very disappointed we didn't see a lion? She had her heart set on seeing the ducks. And a lion. The lion never showed. Bummer. Other than that, we had a blast!
We love y'all!!!!

Friday, January 24, 2014

Angiogram Is Complete!

I wish I could describe (I mean, describe well) how extraordinary I felt today. I woke up a tad anxious. Mostly just due to pulling everything together. Getting the girls ready. And getting in the car. And then. Peace. That inexpressible peace. I'm taking my daughter to the hospital. I know what the day entails. Lots of possible outcomes floating around in my head. Fear is justified. I can tend towards fear. It creeps in. But not today. I woke up smothered with messages of love. Prayers. Bible verses. Encouragement. I know I say it all the time. But I can't stop. Libby is so loved and prayed for by you.  Our family is so loved and prayed for by you. There were times today I felt like I was floating. I'm not kidding. We are in awe of you. We are in awe of Him. Thank you. Over and over again, thank you.

The angiogram procedure went well, and Libby is doing well! Praise God!!!  I wanted to update sooner. I knew she had to stay at the hospital for six hours after the procedure. I did NOT know she had to lie down flat for six hours. Have I mentioned she's three. She wasn't thrilled about this. And it took some policing on my part. Luckily, we got a little milk in her. Started our favorite DVDs. And all was good. Since she had to stay for six hours. And that would have put us leaving the hospital at nine or ten at night. They decided to admit us. For the night. We expected this. And actually were pretty relieved. We never mind a cautious conservative doctor. They'll watch her tonight and hopefully we'll be home tomorrow!

I talked to the doctor. He hadn't fully reviewed the angiogram. But he saw enough to come and tell me his tentative plan. It was much like he expected. It looks like surgery is a go. Praise God. We're back on aspirin. And he mentioned doing the first surgery next Monday. February 3rd. The second surgery would ideally be two or three days later. And then recovery. So that's where we stand right now. I'll update again, soon.

These things I have spoken to you, that in Me you may have peace. in the world you will have tribulation; but be of good cheer, I have overcome the world. John 16:33

Thursday, January 23, 2014

Angiogram Update

I wouldn't necessarily call our past couple of weeks smooth. But we survived. Hib was out of town for work briefly. He's back safe and sound (I only almost called 911 once, but it was a false alarm-I'm a little on edge these days). It's been really cold. The girls and I are trapped inside for the better part of the day. Most days. We've had some breakdowns. The girls. And me. But I like to think they're therapeutic. 
Libby is continuing to do well. She has a rash on her face (We're on topical antibiotic). We're having some behavior issues. And she's having a hard time falling asleep. There are nights. Most nights, actually. She's extremely upset going to bed. And sometimes an hour or so after falling asleep. One night she cried so hard she actually passed out (hence, the 911 call). We don't know if some of this is simply because she's a three-year-old. Or if she's struggling a bit with her inhibitions and emotions (I say this because the doctor mentioned the area of her brain affected by her stroke controls all of this). Of course, the last couple of weeks it's pretty apparent I'm having trouble controlling inhibitions and emotions, as well. So maybe it's just where we are. Anyway, I would like to ask for your prayers. Here, too. For Libby. And for us. I talked with the neurologist about stroke recovery.  And the bottom line is there is only so much information available as to how the brain is specifically affected. It varies from person to person.  It depends on your baseline. And it takes time to recover. Our struggle is deciphering where we can (and should) push Libby. Where we shouldn't. Where we can parent (and discipline) "normally". And where we just need to give her more time. 

She's doing fantastic, after all. We just want to help her the best we can.  And you know this is exactly where I desperately begin my grasp for control. As if I can ever do anything of any significance without Him. Thank you, God. All that said, she's amazing. We're enjoying our days together with no real agenda. It's been easy to schedule appointments and therapies with our open schedule. We're letting minor things go. We're having fun play dates. Going out to lunch.  
Libby's angiogram is scheduled for tomorrow at noon. We'll be heading to the hospital about ten. My understanding is they'll want to watch her for several hours after the procedure. It's a long day. I don't know if we'll get the results of the angiogram tomorrow. But I'll update here, nonetheless. And again as soon as I do get angiogram results. And hopefully our surgery plan. I know you all are praying for us. You tell me this.  But even better, we FEEL THIS. As always, your love overwhelms us. Your love inspires us.  Thank you!!!! We love you all!!!

Tea Time-Table For Two, Please.

Wednesday, January 15, 2014

Happy Birthday, Annie!

 I CANNOT believe you are two years old.
 It's been a crazy two years. But it's been an AMAZING two years. 
 Annie, you love fiercely. Your mom and dad. Your sister. Your grandparents. Your aunts and uncles. Cousins. Anyone, really. Except the occasional stranger in Target.

 You're kind. I love watching you take care of your sister. You don't just grab your own milk off the table. You grab Libby's, too. Somehow. Even as a toddler. You're already compassionate.

 You're fun-loving. Everyone who knows you, adores you.
 You love to play. And laugh (you have a fantastic laugh). And dance. And hug. You told me after your birthday, I love presents! We do too, sweet girl. Our good and perfect gift.
We are so thankful for you. We are beyond blessed. Happy Birthday!!!!

Tuesday, January 7, 2014

Libby Update

Cannot say it enough. Thank you for your prayers for Libby. And for us. Libby is wonderful. I have these great moments of peace. Peace that's so hard to understand. Peace from Him. From your prayers petitioning Him. I'm sure. :) Thank you for praying for our doctors. For their God-given wisdom.

We had our neurosurgery appointment. We loved our surgeon. He explained, in an encouraging way, that Libby's condition is critical. Both sides of her brain are being affected by this disease. The major arteries that supply blood (and thus, oxygen) to her brain are essentially blocked. Her body and brain are already doing amazing things to compensate for this. It's remarkable. And this surgery will help aid her brain to get the supply it needs. Since both sides of her brain are affected, she will need two separate surgeries. One on each side. The doctor's current plan is to perform one surgery one day. And then have the subsequent surgery about two days later. All in one hospital stay. They normally don't do two surgeries this way. This quickly. He feels Libby needs this. Our next step is the angiogram. This will take place on the 24th. She'll have to go under general anesthesia for this. The angiogram will give the doctor more information about the blood supply she's getting, and just exactly how they'll proceed. I asked about her being a "for sure" candidate for this surgery. He said it would be extremely rare if she wasn't. (I didn't tell him how well-versed we are with rare...but he knows :)) Even if things do look different after the angiogram. There are still things that can be done. And it may even be that one side is compensating well enough on its own. There's definitely still information to come.

He mentioned surgery taking place at the end of this month. As soon as possible. He wants us to keep her out of school. Mostly because we don't want to risk her getting a run-of-the-mill illness that could prolong the surgery from happening. So she'll be resting. Doing her therapy. Getting stronger. The biggest risk in all of this is apparently the peri-op surgery period. Not surprisingly. Before, during and after surgery are crucial. The anesthesiologist is paramount. Because of oxygen flow, blood pressure, her high risk for strokes, etc. her body is particularly vulnerable. However, if all goes well and she recovers as beautifully as we hope and pray, this disease is virtually cured. The surgery is hopefully a permanent fix.

These doctors are incredible. They continue to work together for the best care of our precious child. Our neurosurgeon had already spoken with our oncologist before we had our appointment at 9am this morning. They have a plan. She won't have chemo until after we get through all of this. She's at a greater risk for a stroke if she's dehydrated. She can't overexert herself. Consistent vomiting, the way she tends to be on her chemo, is not good. So, we'll hold off. Oncology is totally on board. There's still the pesky issue of keeping the leukemia at bay. When we get through this, we'll most likely start back with the maintenance phase of treatment. They'll keep fighting the nasty cells until her doctors rest assured.

It's a lot to absorb. It seems like a heck of a lot for a little girl to endure. I'm trying not to think too much about all the logistics. Instead, I'm relying on Him. If you had heard this doctor talking about all he can do. All he will do. It would be evidence enough of what we already know- God has always been in the business of miracles. If you had seen Libby's MRI scans. How much of her brain was affected by this stroke. And if you sat with her in the doctor's office today and watched her play. Listened to her talking. Laughed with her as she mimicked the nurse practitioner trying to elicit even more laughter. You would've known you were witnessing a miracle right in front of your very eyes. He is moving.

Keep those prayers coming. I'll keep you posted. We love you!!!

Wednesday, January 1, 2014

Happy New Year!

I love the start of the new year. For me, the new year signifies a fresh start. I like the resolutions. The whole deal. I'm just that person.
I'm so incredibly grateful for how richly God blessed us in 2013. The list of obvious blessings is ridiculously long. 

And there were things that, at first glance, might not appear to have been blessings. But they were. I believe one day I'll see that even more clearly. I wouldn't even be surprised if I find those were actually our biggest blessings. God is good like that. He knows exactly what we need.
  Hib was getting on to me for worrying over the holidays. Libby wasn't feeling well. My head was all over the place. He could tell I was spinning. And he was pleading with me to just stop.

 And I told him I couldn't. I would love to. But I couldn't. I told him it would require me to not think the way I think. Or feel the way I feel. I can't change that. Right?
  Someone would have to change me entirely. Somehow. I told him it was impossible. It took a few days removed to realize that's what God calls transformation.   

 I pray wonderful things for all of you in this new year. MANY blessings, much love, good health, name it!

  I hope and pray these same things for us. Of course I do. At the same time, I'm kicking this year off timidly praying a prayer. I've been praying it for a while (it's the basis of this blog for crying out loud). But it's still hard for me. Sometimes I can't even pray it. I hope to pray it more boldly this year.

Father, help me EMBRACE every single thing You are doing in my life. No matter how I perceive these things. I want to praise You. Help me trust in Your unfailing love. Let me rest in knowing You are working it ALL for good. May all my hopes, and all my dreams be a distant second to truly knowing and loving You. The best dream I could ever hope for.

And do not be conformed to this world, but be transformed by the renewing of your mind, that you may prove what is that good and acceptable and perfect will of God. Romans 12:2

(Thank you so much for your prayers!!! We're amazed everyday at how well Libby is doing. These last three pics are from tonight. She's a rock star, I'm telling ya. I should have more information about what the next several weeks might bring for us at our appointment next Tuesday. We love you! )