Fear vs. Faith

Since the beginning of this journey, Derek and I have known that God has had some specific lessons that He has wanted to teach us. We have both felt impressed that this is a "testing of our faith" as it talks about in James 1, and that God is wanting to mature and complete us in our walk with Him. Many times we've talked about the fact that we want to "get" what God is trying to do in our hearts - we don't want to have to re-learn any of these lessons again any time soon! I've been earnestly asking God to give me extra doses of His grace and ability to learn and grow so that this suffering isn't wasted.

A struggle in my life for many years has been fear. Whether it has been small things - like fear of spiders or fear of driving next to a tractor trailer truck on the road, or big things - like fear of rejection or fear of losing someone I love. A lot of times we disguise fear to ourselves and others by calling it nicer names - stress, worry, anxiety, insecurity, concern, etc. Fear can even be manifested in other ways like being controlling or being really affected when people aren't happy with you.

It wasn't until about about 2 years ago that I realized that fear is a sin (you'd think I would have realized this after reading the Bible for the past 25 years). I guess for some reason I just thought that fear was something God tells us not to do in the Bible, but didn't really mean. I thought that there are just some things you get a pass on due to your circumstances.

But the root of all kinds of fear, whether it be anxiety, worry, or stress, is a lack of trust in God. And a lack of trusting God, I have come to realize, is indeed a very big deal to Him. Over and over again in His word, He tells us that He is our refuge, our protection, our shield, our defense, and will never leave us or forsake us. The emphasis here is that He is trustworthy. Whatever we're going through, or whatever we need, He's on it. When we get afraid, but don't turn that around to trusting in Him, we are in essence calling Him a liar in our hearts - that He's not really going to do what He said He was going to. I'm not saying we're supposed to deny the way we're really feeling, but rather we're supposed to acknowledge that fear and then turn, give the fear to God, and rest in Him.

Fear has been raising it's ugly head again in my life through this journey with Grace's health. I know that through this time, God is wanting to further purge my heart of fear and increase my faith and trust in Him. I am totally out of control. Fear tempts me to worry about the future - What if the seizures come back? Did you notice that movement? Could it be a seizure in another form? What if the EEG comes back abnormal? But God tells me I can trust Him, that my hope is not in the medication that Grace is on or in the doctors she sees, and that He is on it. He has not forgotten us. He loves my precious darling even more than her daddy and I do. I do not get a pass to worry because I'm a mom. No stage in life or circumstance gives me a pass to not trust God, because He is worthy of my trust now and forever.

-Michelle
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In other news, my *baby* sister just went away to school this past weekend. Yay for her, sad for us. Grace is going to miss her Aunt Rebekah.

Grace with Aunt Rebekah the day before she left for school.

Lower dosage

Today we lowered the ACTH dosage to .20 of a cc, rather than .25. We're still doing one injection every other day as we will until treatment is over but will reduce the dosage 2 more times in the process.

Grace is still seeming more like herself and actually seems even happier and more smiley and vocal than before all this started, even making some new vocal sounds. With Grace doing so much better it's hard to keep her just around the house although we definitely need to for her immune system. It's very tempting to want to start plugging back into normal life with going out to stores, the pool, church, etc., but that will have to wait for a couple of months after the injections are over.

She had developed a tremor in her left foot a few weeks ago and that seems to be gone as well. It's neat to see how God is healing Grace so thoroughly. When He does something, He does it completely, not leaving loose ends.

We're still battling reflux and there was rough patch for a while last night, as we were up with Grace for a couple of hours in the wee hours of the morning.

The doctors gave Grace a 20% or less chance of getting well and living a normal life. However, my Bible tells me that 100% of the people that came to Jesus for healing were indeed healed. We've had opportunities to share our faith with a good number of the medical staff we've been working with--people we never would have even met if all this hadn't happened. Reminds me of what Joseph said in Genesis when he said "What others (in this case Satan) intend for evil, God uses for good." That's a bit of a paraphrase of course.

Grace has her EEG (brainscan) this Wednesday and we meet with the neurologist for a general checking-in on Friday. He might possibly have the EEG results by then, but more likely we'll have them early next week.

-Derek
P.S. When all this is over, I'm taking my girls to the beach to celebrate and get some R&R!

Today's news

An even better night of sleep last night. Grace went to bed at 8:45, got up to eat at 1:45 then again at 6:40 when we all got up for the day. Those are 5-hour stretches, people! Michelle and I went to bed at 11, but still that's the best night of sleep for all 3 of us in a long while. Grace had an awesome mid-morning nap as well, which allowed Michelle and I to get a good nap in ourselves.

On a less positive note, Michelle was feeling achy today and had a headache. We don't think it's a bug or anything, just the sleep deprivation and exhaustion catching up to her. Grace is still having issues with acid reflux and it was especially bad today. She feels pain and discomfort when this happens and we try to help her by spraying some saline into her nasal cavity and giving her a little Milanta through a syringe to help coat her throat and esophagus. We would appreciate your prayers for these things.

-Derek

2 weeks seizure free

Today marks 2 weeks of no seizures, praise the Lord. Aside from a short window yesterday afternoon, Grace continues to seem more like herself and is gaining back more of her energy (she's been an extremely active little gal from the time she was in utero). I'm lovin' this whole every other day injection thing. The days like today when we don't have to give her a shot feel so liberating. Tomorrow is the last injection at the original doseage of .25ml and then we gradually decrease the doseage about every 5 days for the next few weeks.

God continues to chase us down with blessings (Dueteronomy 28 talks about this). We're still receiving regular meals from our awesome church family at Grace Community Church, and we just received a large financial gift in the mail from some dear friends, to help toward Grace's medical expenses.

There are still some skirmishes with acid reflux and we would appreciate your continued prayers regarding that.

With much gratefulness,

-Derek

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*For all of you who have so kindly offered to help with meals, our church has set up a coordinating website where people can sign up. Here's the information: Go to http://www.takethemameal.com/, and then the login is under LoVerde with the password being 4801. We were reluctant to post this information as we would certainly never want any of you to feel obligated to serve in this way (your prayers are the main thing we covet), but we've been advised that this is the easiest way to get the information to all who have requested it.

God's power

I'm sitting on the front porch waiting for UPS to deliver the next vial of ACTH while Michelle and Grace are at the pediatrician for a checkup. The air outside has cooled down, the Crape Myrtle tree is in full, beautiful bloom, and the birds are chirping away cheerfully. This morning my heart is especially filled up with gratefulness to our Lord Jesus Christ and I am amazed (but not surprised) at His power and goodness. Grace is back! Our bubbly little girl's personality has come back complete with smiles, giggles and cooing. Her energy is coming back strong as well. Guys, for all this to be happening at this point is an absolute miracle.

Grace even rolled over from stomach to back for the first time yesterday, something most babies do by 6 months (she had already rolled from back to stomach a couple of weeks ago). Well, today is Grace's 6-month birthday, so she was ahead of schedule. :0) When we first met with the neurologist he pointed out some developmental delays in Grace such as the lack of rolling over and her inability to transfer an object from one hand to another. Well, since that time she's done both of those things and more. In fact, I'm praying for God to give Grace a double-portion in her mental and physical development, and that she will exceed her peers as a reward for her trial (sorry to all my friends who have kids).

Last night was an amazing night of sleep as well, as Grace only got up twice to eat (as opposed to 5 or 6 times), making for some longer stretches of sleep for all. And she went right back down to sleep each time, showing no signs of acid reflux. This is a huge answer to prayer! Michelle and I even had some time together last night after we put Grace to bed because she went down so easily.

Jesus has done all of this and the prayers of His people are being answered.

-Derek

Here are some pictures from the past week or so.

Bathtime with Daddy

Uncle Zach feeds Grace sweet potatoes. A new hero is born.

Smiles with Mommy.

Daddy love.

Our little smiley girl is back, just much chunkier than before. ;)

Acid reflux issues

Grace's acid reflux has come back with a vengeance. So much so that on Monday night all three of us got just a few cumulative hours of sleep. Grace has had reflux since she was a newborn but it's been under control for a while now up until the last 10 days, with Monday night being the worst. She had projectile vomit, had multiple episodes of milk coming out her nose, and screamed most of the night out of pain. I feel horrible for not catching this sooner, but when the reflux reared its ugly head initially when she was 3 weeks old, it was mainly characterized by Grace refusing to eat. Let me tell you, that has NOT been a problem this time. Our girl would nurse 24/7 if I let her right now.

Monday night was spent alternately trying to get Grace engaged in a Baby Mozart video, holding her, rocking her, and taking her on walks outside, none of which worked. We finally decided to go for a drive in the car around 3 am. I volunteered, since Derek tends to be able to fall asleep anywhere, including at the wheel. Right before I drove out of our driveway he casually mentioned to be on the lookout, because "this is the time when drunk drivers are on the road." Whaaaa??? So I ended up driving around my brother's road about 245 times since he lives on a circle and that means all right turns and no stopping the car, all while praying that there are no drunks living in his neighborhood.*

Thankfully, our pediatrician upped her reflux meds a bit. (Side note: Have I mentioned how much I love our pediatrician? I love him so much that sometimes I just want to pinch his cheeks, but I refrain because I'm afraid he would put a restraining order out on me.) There are some other things that we can start doing to help her out, one of which being not letting her eat so stinkin' much. Poor darling, food is her life right now. And when food is her life, food is my life. I spend my awake moments plotting ways to eat Chick-fil-A every meal for the rest of my life. Just kidding. Sort of.

Last night was a much better night however with Grace's reflux not keeping her up near as much and she even slept for 3 hours straight one time--the longest stretch in about a month.

- Michelle

*This story by no means implies that Derek was slacking that night. He's burned his share of the midnight oil (and the 2 am and 4 am oil) since Grace has been having a hard time - really, since she was born. He's an amazing husband and daddy and I can't imagine going through this without him.

The latest

It's been 10 days now with no seizures, for which we are very encouraged. We started the steroid weaning process last Thursday and it seems Grace has been feeling a little more like herself yesterday and today. Still far from her true, bubbly, energetic self, but we saw some smiles yesterday (the first I'd seen in a week) and a lot of smiles today, even a giggle. We were able to play with her, doing silly little things she could anticipate that would make her smile. She's still really tired and doesn't have near the strength and mobility that she did before treatment, but we know that will come back in time.

Also, Grace's blood pressure was back to a safe level today, which is a huge answer to prayer. Based on that, the neurologist suggested continuing on the original 7-week treatment plan, rather than expediting the weaning process like he suggested the other day, which would have shortened it by 2 weeks. So we have about 30 days to go now.

Next Wednesday is a significant day for little Gracie as she has her first EEG (brainwave scan) since the hospital stay 4 weeks ago. I would be very surprised if they're not dramatically improved. We serve a mighty God Who is able to work mighty miracles and we continue to look to Him for our hope and peace. We are not without moments of fear and doubt, but Jesus pulls us through those back to a place of trusting in Him.

Thank you for your continued prayers and support!

-Derek

More sleep deprivation

So, that last post about better sleep? Yeah, not happening any more. Last night was really rough. Grace was up solid from about 12am-4am. I remember the days back in middle school when I thought staying up until the wee hours of the morning was fun. Yes, I said fun. What the heck was I thinking?? Now I would seriously like a bedtime of about 3 in the afternoon. At least we know that this is just for a season.

I wish we knew what was going on with our girl. She's seemed especially miserable yesterday and today. Is her body going through withdrawal from the ACTH? Is her blood pressure still high and making her fussy? Our sweet little darling just has a lot going on right now. She has thrush (a side effect of the medication), which is making eating (especially nursing) painful for her. She has horrible diaper rash from the thrush which is really hurting her (she cries more when we change her diaper than when we give her a shot). I think she's teething. She's starving all the time. And she's sleep deprived. Pretty sad to see such a tiny little person in such a state. I know that the Lord Jesus is able to comfort her when we can't, though. He loves her more than we do and sees what she's going through.

Pray for our sweetheart. We love her.
-Michelle

Better sleep, less seizures

Praise the Lord, it's been a week since we last noticed Grace having any seizure activity! That would indicate that the medication and even more so, your prayers, are working. Last night (Thursday night) was also a much better night of sleep for all 3 of us and we could feel your prayers regarding that. The biggest difference was that Grace went back to sleep much more quickly and easily after each middle-of-the-night feeding than she has been over the last 9 or 10 days. Things weren't going good initially though. We started trying to put her to bed around 8 p.m. but it wasn't until around 11 that she finally conked out . After trying a walk in the neighborhood, the bouncy seat, food, the swing, rocking, etc., it was some late night Baby Mozart that finally did the trick. Hey, we all fall asleep watching TV every now and then, right?

Thank you for your continued prayers and support! We're not out of the woods yet, but little Gracie is making some positive progress.
-Derek

Blood pressure

I took Grace to her pediatrician this morning to get her weekly blood pressure and weight check. Turns out her blood pressure was significantly high (which is a potentially serious side effect of the ACTH). Our pediatrician spoke with Grace's neurologist on the phone, and it looks like we're going to be weaning Grace more quickly off of the ACTH than the original plan called for. The wean off will consist of about 3 weeks vs. 5 weeks. Pray that Grace's blood pressure goes back down to normal and that the ACTH will still work in spite of the shorter treatment time.

Off to bed (sort of). Grace has been crying for the past couple of hours and it doesn't look like she has plans of settling down any time soon. Continue to pray for our nighttime sleep.

- Michelle