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

Blessings, smiles, and (lack of) sleep

We have been so incredibly blessed over the past few weeks to have been surrounded by wonderful friends and family. A huge thank you to all of you who have prayed, emailed, called, messaged, sent notes, and brought meals. It is such an encouragement to know that we aren't alone in this journey. Please forgive us if we're not able to respond to your message, but be assured that we are grateful for the contact and for knowing that you care. There are just some days (actually, most) that we're doing our best to keep up with vital communication with doctors offices, insurance companies, drug reps, etc. Thanks for understanding!

In other GREAT news, the past three days we've seen some smiles from our girl. Each day, there has been a short window in the afternoon where she has brightened up and been herself. For the past few months, a favorite part of my day has been our little bedtime routine with Grace. I nurse her in her room, say a few sweet things to her, put her in her bed, and then give her a kiss on her cheek. Before she was on the medication, she would anticipate the kiss and start smiling as I bent down over her crib. The smile vanished once the meds started, but the last two nights, she started doing it again. I love it. It's the little things that keep you going, right?

A huge prayer need of ours right now is nighttime sleep. Last night was our most difficult night so far, as we were up with Grace way more than we slept. There was much weeping and gnashing of teeth (not really clear on what gnashing of teeth means, but I'm pretty sure it happened). Really, all three of us are shot. After only being up 30 minutes this morning, Grace started falling asleep to her Baby Einstein video. It was either really boring, or she was really tired.

Tonight marks the end of Phase 1 (see the post "28.5%" if you don't know what this means). Tomorrow we start only having to give her one shot a day!

-Michelle

Stress

Yesterday I picked up Chick-Fil-A for us to eat in the car on our drive down to the neurologist. Michelle was sitting in the back seat with Grace to feed her sweet potatoes. I had Michelle's lemonade on the armrest and as we were about to pull out of the garage I knocked it over onto the passenger seat next to me. It landed upside down so naturally lemonade started to run out of the straw. I quickly turned the cup right side up but what I didn't realize is that the straw had impaled the bottom of the cup when it landed on the seat. So lemonade was now running out the bottom of the cup leaving a liquid trail through the car and across the garage floor as I whisked it away to the garbage pail outside. The leather seats made for a pretty easy cleanup, but since we were running late for our appointment I got pretty stressed. Let's just say I did not respond like Jesus in front of my family. I feel like I'm trusting God through our situation, but I think He used this to unearth some underlying stress and anxiety so that I would be aware that it's there and could take it to Him. This is indeed a journey. Not just for Grace, but for her mom and dad, too.

-Derek

Today's meeting with the neurologist

What should be our response when we receive good news? "Praise the Lord! God is good." What should be our response when we receive bad news? "Praise the Lord! God is good."

See the difference? Oh wait, there isn't any difference. See, too many times our faith parallels the peaks and valleys of our life rather than the steady love and faithfulness of our God. When everything's good, we're believing in God and that He's in control, and we follow Him passionately. When things go south, we accuse God in our hearts and question His involvement in our lives--perhaps even His very existence. God gives us joys and blessings because He loves us and has good plans for us. He gives us trials and sufferings for the same reasons.

This afternoon we did receive some encouraging news. We met with the neurologist (who's from my hometown in Merrick, NY) and he feels very optimistic that the treatment will succeed for Grace. This is largely due to the fact that Grace has "cryptogenic" Infantile Spasms (IS), which means there is no underlying reason for the condition. This is the type we were hoping it would be because children with this kind of IS respond better to treatment than those with "symptomatic" IS, where there is an identifiable underlying brain malformation or disorder. (About 80% of children with IS are in the symptomatic category.)

We're also encouraged because we haven't noticed any spasms since Friday, which is the longest Grace has gone without any episodes since before starting her treatment. Grace also seemed a little more "engaged" today and gave some more smiles. But again, our faith should never be circumstantial. If the prognosis and all the signs were negative, we should still be rock solid in believing for Grace's healing and in trusting Christ.

Job's an awesome example of the kind of faith I want to have. In the course of a single day, he lost almost everything including all 10 of his children, and yet he worshiped the Lord rather than accuse Him. Job acknowledged that the Lord both gives and takes away (Job 1:20-22) and he said to his wife, "Shall we indeed accept good from God and not accept adversity?" (Job. 2:10). For Michelle and I, the same God who gave us our baby has also given us this trial. In a sense, He has also taken her away from us for a while, as much of her soul is gone for now.

I have definitely battled fear, doubt and unbelief through this process, but I can say with certainty that I will not curse God or accuse Him. I will not throw in the towel. I will keep hoping and trusting in God. I will not give in to fear or doubt or unbelief. God is big and He is mighty and even if He were to take away Grace's very life, I would still serve Him and worship Him for the rest of my life. I love my baby, but Jesus is my life and my source. He is my reason for living, not my daughter. Through this journey I've had to come to some hard realizations and admissions about how much of my heart and my life belonged to my child and I've needed this trial to bring clarity to these issues. More on that some other time... Need to go to bed.

-Derek
P.S. Only 2 more days of 2 injections per day!

She smiled

Saturday the Lord gave us a little (actually huge) blessing. During Grace's bath, she suddenly snapped out of her lethargic, expressionless state and gave me a smile. I called for Michelle to come in right away and for about the next 5 minutes, our little girl was back. Amidst our tears of gratefulness and joy, Grace made good eye contact, splashed around in her tub and smiled in response to us playing with her. For a brief moment it was like the good ol' days and Grace was "there". I hadn't seen her smile since Tuesday and as Michelle mentioned, it's like we had forgotten what it looked like.

We know this was a merciful gift from the Lord for us to enjoy and sensed it was also meant as a foreshadow of her healing. We were greatly encouraged. I can't wait to get her back--for good!

-Derek

PS: Here are some recent pics (Blogspot's not the most user friendly when it comes to pictures, so things are not in the order I wanted, and you'll see one particular picture 3 times. Oh well.)

During Grace's hospital stay, geting hooked up to the EEG

Trying to break out of her crib at home

Sweet potatoes! Michelle makes homemade baby food,
saving us tons of money.

Michelle and Grace love laying out together on the driveway,
under the shade of our trees.

Grace loves "hugging" the armrest, curling her toes,
while enjoying some fresh milk.

Notice Grace is ready for her next bite.

A little acorn squash.

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Grace loves books. She can actually already read! (As long as there's pictures.)

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Grace voted in last weeks runoff election. Never too early...
In the picture above this one, you can see how big Grace is getting.
She's eating ALL the time, because of the steroid.
(Incidentaly, we've had a few professional athletes email us about
using a dose every now and then.)

Keepin' it real

I told Derek tonight that through this blog I feel like I've only shared half of me (tragic, because this blog has been up and running for such a long time). I've written things, and then deleted them. Imagining that some of our readers might be our Pastors or Elders from our church (Hi Pastor John and Mr. Toon!), and knowing that my sweet grandmother reads this (Hi Nana!), has made me want to keep things...dignified. And sometimes dignified comes across as way too serious.

So. There are some things I need to get off my chest about the past few weeks:
1. We're going to kick Satan's butt through this process. Well, God's going to kick his butt because He's got the power (Did you know that using the word "butt" in my house growing up was like saying a cuss word? Sorry Mom, but I feel liberated.)
2. I'm suffering some serious reprecussions from Grace nursing 12 times a day now. I'll leave it at that out of respect for our male readers. You're welcome.
3. I've eaten almost an entire bottle of Hershey's Chocolate Syrup and jar of peanut butter since Grace's first seizure. Together. By the spoonful. Because Hershey's Syrup is my life.
4. Derek and I got into a huge fight over a bell pepper a few nights ago (yes, you read that right), which brought about a 20 minute sobfest by me. And, no, my husband is not married to a drama queen. Those were legitimate tears.*
5. Some medical professionals are lovely, kind, and helpful. Others make me want to stick a fork in my eye.

I feel cleansed, liberated, and free. Thank you. That is all.

*This was posted with the express permission of all involved parties.

Sing

I miss my girl. I know I've said this before, but I feel like she's slipping away from me and I don't know where she is. I miss playing games with her and hearing her squeal and laugh. I miss hearing her coo and seeing her smile. I know this is a side effect of the medication, but when I see her so exhausted, still, and staring off into the distance, it feels like my heart is being ripped out and shredded. There's a constant physical pain in my chest that doesn't go away.

Today as I was talking with the Lord about this, I felt Him say to my heart, "If you never get her back, will you still love Me?" I know Grace is going to be healed, but even if she isn't, I will still love Jesus Christ. The reason? Because Grace is not my world. I do not live for this world or the things or people who are in it. Yes, the people that I love and adore make up a part of my world, but they are not the end. Jesus is my world. He is the One I live for.

I've been thinking a lot lately about Shadrach, Meshach and Abed-nego and when they were about to be thrown into a blazing furnace to be burned alive for refusing to worship false gods. This is what they said: “If it be so, our God whom we serve is able to deliver us from the furnace of blazing fire; and He will deliver us out of your hand, O king. But even if He does not, let it be known to you, O king, that we are not going to serve your gods or worship the golden image that you have set up.” Daniel 3:17-18.

I believe our enemy (Satan) is trying to take Grace from us through her mind. I know that God is going to deliver her. But even if He doesn't, I will not bow down to the gods of fear, self-pity, doubt, unbelief, or bitterness. I will trust the Lord, because He is good and His mercy endures forever. His heart is good toward our family and He is for us. Romans 8:31-32 says, "What, then, shall we say in response to this? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?"

One of my favorite pictures of Grace, taken the night before we checked into the hospital.

Below are the lyrics and link to a song God has used in my life these past couple of weeks (thanks to my awesome sister for sending it to me).
http://s0.ilike.com/play#Josh+Wilson:Before+the+Morning:143556922:s56102032.13624421.6749593.0.2.287%2Cstd_0de82357ccc346728181ad9cad11a748http://s0.ilike.com/play#Josh+Wilson:Before+the+Morning:143556922:s56102032.13624421.6749593.0.2.287%2Cstd_0de82357ccc346728181ad9cad11a748

BEFORE THE MORNING - JOSH WILSON
Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Chorus:
Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning

My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so just say a prayer.

and hold on, cause there's good who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the hurt before the healing

Once you feel the way of glory,
all your pain will fade to memory
once you feel the way of glory,
all your pain will fade to memory
memory, memory, yeah

- Michelle

Today

Today Grace was less fussy but seemed kind of "checked out". She was very quiet and still (except for when she was ready for more food) and sort of lethargic. We're not sure why. Probably somewhat due to medication. If only we knew what she was thinking and feeling...

Would love to write more but gotta go to bed to rest up before the next feeding. :0)

Derek and Michelle

Ups and downs

Today marks the 7th day of ACTH treatment and after tonight's injection we'll be half way through Phase 1. Overall, the number of spasms has decreased both in volume and intensity since starting ACTH, although for some reason yesterday she had the most spasms since the treatment began.

One of the side effects of the medication is a ravenous appetite, and man, that is an understatement! Grace is starving ALL the time, even 30 minutes after eating a big meal. Even though Grace is eating sweet potatoes and now formula to help supplement breast milk, this still means a lot more work for the nursing momma. My little girl is chunking up pretty fast and if this keeps up she should outweigh her daddy by the end of the week.

Here's Grace with her little buldging belly after one of her many meals.

Her little thighs are chunking up nicely. Mommy calls them delicious. Note the Hello Kitty band-aids from her shots that Grandmommy (Michelle's mom) got for her.

By way of prayer request, all 3 of us are pretty exhausted. Grace got up to eat 5 or 6 times (it gets kinda hazy) during the night last night, reminiscent of when she was a newborn. She's only lasting about 2 hours in-between meals.

Trusting and hoping in God's mercy for the journey,

Derek

Through the fire

Last Wednesday night, on the eve of beginning Grace's ACTH treatment, I asked the Lord for a word from Him that Grace was going to be ok. I had already been believing that the Lord was going to totally heal her and believing that He could keep her from the ill side effects of the medication, but I hadn't received a confirmation through His word. I had read been reading lots of good Scriptures on healing, the Lord being with us, Him defeating our foes, etc. But as I was wrestling with my inward anxiety about beginning treatment, I said "Lord, I've gotten lots of good verses about Grace, but I need a God verse. I need a special word from you (rhema) that Grace is gonna be ok." I sat down, flipped open the Bible and read these words:

Isaiah 43:1-7

But now, thus says the Lord, your creator, O Jacob, and He who formed you, O Israel, "Do not fear, for I have redeemed you; I have called you by name; you are Mine! When you pass through the waters, I will be with you; and through the rivers, they will not overflow you. 

When you walk through the fire, you will not be scorched, nor will the flame burn you. For I am the Lord your God, the Holy One of Israel, your Savior; I have given Egypt as your ransom, Cush and Seba in your place. Since you are precious in My sight, since you are honored and I love you, I will give other men in your place and other peoples in exchange for your life. 

Do not fear, for I am with you; I will bring your offspring from the east, and gather you from the west. I will say to the north, 'Give them up!' and to the south, 'Do not hold them back.' Bring My sons from afar, and My daughters from the ends of the earth, everyone who is called by My name, and whom I have created for My glory, whom I have formed even whom I have made".

The Lord is so good and that totally bolstered my faith.

-Derek
P.S. 5 days of injections are in the books--10 out of 28 Phase 1 injections.

28.5%

Today marked day 4 of treatment and 8 needles are now in the books. That's 28.5% through Phase 1, praise the Lord, and after tomorrow we'll be more than a third of the way through. We're mentally breaking up Grace's 7 weeks of injection treatment into 3 phases, corresponding to the schedule the doctors have given us. Essentially, it's 3 weeks of focused treatment and 4 weeks of weaning from this powerful steroid (kids that aren't weaned go through a tough withdrawal).

Phase 1: 2 shots a day for 2 weeks (28 needles)
Phase 2: 1 shot a day for 1 week (7 needles)
Phase 3: 1 shot every other day for the remaining 4 weeks (15 needles). We also start reducing the dosage per needle during this week as well, gradually giving less and less medication over the final weeks.

Michelle and I switch off doing the shots, me in the morning and she at night. The Lord is giving us the grace to poke our little munchkin and He's helping Gracie to persevere and endure.

Here's a shot (heh, no pun intended) of one of her needles. They're pretty long but thankfully we only need to push them in half way.

-Derek

Miserability

When the doctor was giving us the rundown of the possible side effects of the ACTH steroid Grace is taking, one of them was "irritability." I wouldn't say that irritability has been the case with Grace, but something more like "miserability." Ever since we started giving her the shots, our little darling has just seemed to be absolutely miserable. The happy, bubbly, easily amused little girl that is our daughter has been replaced with an exhausted and fussy baby. Grace is so tired that it's hard for her to even have the energy to eat. What's difficult is that even though she is so tired, she has a really hard time settling down to take naps.

The moments that we're able to coax even a half smile out of her are precious and they give us hope for getting our daughter back one day. I miss her. Grace is still a delight to our hearts and we'll take her any way we can get her. It makes our hearts break to see her suffering, but we know that Jesus is wrapping His arms around her and giving her comfort we can't even see.

Some verses that God has given us at the beginning of this journey were Psalm 27:13-14:
"I would have lost heart unless I had believed I would see the goodness of the Lord in the land of the living. Wait on the Lord, be of good courage, and He will strengthen your heart. Wait, I say, on the Lord."
A friend messaged me this morning with those same verses. God is so good, loving, and kind to us. He has taken so many measures to encourage us over the past couple of weeks. We are seeing the goodness of God in the land of the living.

-Michelle

Snake in the kitchen

Yesterday I killed a small snake that was slithering across our kitchen floor (sick, I know). Michelle passed me our biggest chopping knife and I severed its ugly head--we triumphed over our foe. May the Lord deal so with our serpent-enemy Satan. In fact, He already predicted the crushing of Satan's head (Gen. 3).

Ps. 112:8 says, "His heart is secure, he will have no fear; in the end he will look in triumph on his foes."

That is my prayer for little Gracie.

-Derek

Grace's Story

7lbs 2oz, 18 3/4"

Grace Elizabeth LoVerde was born to Derek and Michelle on 2/26/10 at 3:17 pm by C-section because she was breech and wanted to arrive pretty. She was born healthy and whole and was immediately welcomed into our family as our beloved firstborn child.

Aside from the usual adjustments and bumps in the road with a new baby, things were going pretty smoth and we were enjoying watching our little girl grow and develop. On Friday evening July 23rd, life took a left turn as Grace had her first set of seizures at home shortly before bedtime. Two different nurses including our next-door neighbor encouraged a visit to the emergency room where they did bloodwork and a CT scan. Although those came back negative, over the course of the weekend the spasms continued and got more frequent. What they look like is a rhythmic stiffening and then relaxing of the body with arms raising out at her sides and eyes widening.

We met with a pediatric neurologist the following Monday and after being admitted to Scottish Rite hospital a couple of days later, a battery of tests (including a video monitored EEG) revealed Grace had Infantile Spasms. While it may sound like an innocent and temporary condition, it's actually a rare form of epilepsy and a dangerous neurological issue related to brainwave activity. Without successful treatment, the condition usually morphs into more signifcant seizures along with developmental setbacks.

As is typical for this condition, a powerful steroid (ACTH) was prescribed. This medication is considered the "gold standard" of treatment by many who deal with this condition, and as such is unfathomably expensive--$25,000.00 a vial (yes, the decimal point is in the right place!), and Grace needs at least 3 vials. Thankfully we have insurance which is covering all but $4,200 (our copay), but the Lord brought an unsolicited charitable organization our way (NORD) who's picking up that amount. Michelle and I are giving the treatment to Grace at home through injection twice a day in Grace's thigh muscles.

I don't want Grace labeled as a "sick person". She's simply going through a tough time right now (we all have ups and downs, right?) and her mom and I are waiting on the Lord and anticipating His healing touch in His time. Our enemy Satan is seeking to steal, kill and destroy but Grace belongs to Jesus and she has a Mighty God on her side. She also has a mom and dad who love her dearly as well as an army of family, friends, and even complete strangers who are crying out to the Lord for her healing. This is just one part of Grace's lifelong journey, albeit a very challenging one.

To God be the glory!