Requesting prayer

Hi folks,

We are requesting prayer for our little munchkin (and for us). Grace is having such a hard time right now with day and night sleep. She is getting hardly any sleep during the day and very unrestful sleep during the night as she's waking up many times throughout the night needing comfort. This past Sunday night was her last dose of the Clonazepam which relaxed her brainwaves and also worked as a sleep aid. She's going through withdrawal right now. Please pray that her brain and body would regulate and that the Lord will heal her sleep so she can sleep deeply and restfully at night and have good naps during the day.

Thank you for your prayers!

Derek

Attn: Molly Long. We just replied to your comment on our previous post.

Pictures of our little sweetie

Only two more weeks of keeping Grace at home! After that, we'll still have to be careful about having her in crowds and around sick people, but at least I can take her to the grocery store. After over three months of staying at home, that sounds like a dream come true.

Grace has had some really good nights this past week, and some not so good ones. We're still weaning her off of her medication, so it may be awhile before her sleep regulates for good.

Here are some recent pictures of our little darling. She turned 8 months old this past week.

Today's EEG results

We went to see Grace's neurologist today to go over her EEG results from this past Wednesday. We're praising the Lord that the EEG came back completely normal! Dr. Schub seemed surprised at how well Grace is developing (he said she's right on track) and how well she has done overall through this ordeal. He commented, "I need to make Grace my poster child for the ACTH treatment." Actually, Grace is a "poster child" for the healing power of Jesus. We're grateful for doctors and medicine that God sometimes chooses to use in the healing process, but ultimately, Grace's prognosis was grim by all human standards. We are so grateful for God's healing power in our daughter's life and for how He has poured His love and mercy out on our little family. We don't deserve one ounce of it, but that's what makes our God so amazing - He sees us in our need, has compassion on us, and gives us what we don't deserve.

From here, we're weaning her off of the rest of her seizure medication. This is the medication that can cause insomnia when you're coming off of it, so please pray for us about that. We'll take Grace back to the neurologist in January for a follow up appointment. In a few weeks, we'll be getting Grace back into society as her immune system is strengthening, but we will still have to be careful all winter about having her in large crowds or around sick people.

Thank you for all of your prayers and support. No matter what is going on in your life, remember that there is NOTHING impossible with God through Jesus Christ our Lord.

- Michelle

Sick and tired of being sick and tired

Sick again this weekend, this time with some kind of sinus thing. That means no break for Michelle the past few days with her running full day and night and weekend duty. Please pray that both she and especially little Grace will be protected from catching anything. I miss my family so much as I've hardly touched or been close to them over the past 9 days, having been sick these past 2 weekends.

Generally, Grace has been doing better at night, still waking up several times needing help changing positions, getting gas out, etc. Daytime naps are still very few and far between though. For example Grace was awake about 12 hours total today but only napped a combined 55 minutes during that time. Michelle's tried a variety of things to help Grace get longer naps, but nothing seems to be working. Again, Grace used to nap 3-4 hours a day between 2 naps, which is normal and ideal for a 7-month old. Still she manages to be very happy and content, which is such a blessing. In other words, she's always a joy to be around and is extremely low maintenance. She's pretty much an angel baby. :0)

This Wednesday is Grace's 3rd EEG (brain scan) and we'll discuss the results with the Dr. on Monday the 25th. We are believing God for a completely normal EEG.

Derek

Sick

Yesterday and today my whole body felt pretty achy. This afternoon my temp was 99.6 so I'm taking Ibuprofen and keeping my distance from Grace, being quarantined down in the den--that means I'll be unable to share the load with helping Grace during the night tonight. Please pray for Grace and Michelle and for a full, restful night of sleep.

Here are some recent photos, including our visit to Burt's Pumpkin Farm last Sunday--Grace's first such adventure. We stayed in the back corner of the patch to keep away from other people. :0)

-Derek

Requesting prayer

Thank you for continuing to keep up with our blog about Grace. Friday will be 8 weeks seizure-free, praise the Lord and Grace is still very happy and content. Those are the blessings. We would like to request prayer for the following challenges:

Nighttime sleep: Sleep has gotten really bad again and all three of us are very exhausted. Michelle is feeling extremely run down and I'm starting to get that way too. Grace is just very restless throughout the night needing comfort, a change of positions, etc. Sometimes she's not even fully awake, but Michelle and I wake up hearing her on the monitor making moaning or grunting or fussing sounds. For example last night she needed intervention about every hour so none of us are getting any good blocks of sleep.

We think the latest sleep issues are related to recent cut back of her Klonopin, which is the medication she started a week before the steroid, which relaxes the brain waves and made her incredibly sleepy and lethargic at first. One of the side effects of withdrawal is insomnia and her body probably got dependent on the medicine for sleeping.

Rolling over: Please pray that Grace will master the art of rolling over both ways--including in her crib during sleep time. During the day if you put her on her stomach she'll roll onto her back in a few seconds. She rarely rolls from back to stomach though. During the night in her crib, she seems unable to roll over either way. When she gets uncomfortable and tries to roll over, she gets distressed so we have to go in and manually flip her to help her change positions. She should be able to roll both ways at this stage but up until last week her mattress was propped up at a 45 degree angle and she slept between a stabilizer, all because of her reflux. She's probably also a little behind in this area because of the effects of the seizures and the medications as well.

Daytime sleep: Daytime naps have almost disappeared completely meaning no rest for Grace or Michelle and no break for Michelle during the day. Grace was sleeping 3-4 hours total during the day but the last week and a half it's only been about 1-1.5 hours total sleep during the day. The decline in daytime sleeping also coincided with the reduction in her Klonopin.

Thank you guys. We really appreciate your prayers and please know that they work, big time.

Derek

Update

It's been 6 weeks with no seizures and nighttime sleep has been much better over the past week. One recent test of faith was last week she had several full body shivers. We first noticed these when Grace was a few months old and after everything came about with the Infantile Spasms, we concluded that they were probably an early sign of her neurological condition. So when we noticed some last week, the temptation was to go into fear about the seizures coming back. We had to cling to the Lord and to His promise that Grace would be made completely whole.

It reminds me of the Garden of Eden when Satan's first words to mankind were "did God really say...". He was asking us that same question. "Is Grace really healed? Is she going to start having seizures again? Did God really mean what He said?" But to doubt what God has said is to call Him a liar since He never goes back on His promises. We're not afraid anymore and we know that Grace is healed--completely and permanently. Even if there are indications of regression or what have you, we will believe what God said and the special word He gave me in Is. 43:1-7. That is the essence of faith--believing God rather than your circumstances. It may be an emotional struggle at times and we may have to make a choice to believe when we don't feel like doing so, but God is faithful and will strengthen and enable us.

By the way, we didn't see any of the full body shivers this whole week.

Thanks for your continued support and prayers. (I wonder if anyone's actually still following this blog--it's been 2 weeks since we last posted). :0) The next milestones are Oct. 20 (EEG) and Oct. 25th (learn and discuss EEG results with neurologist).

-Derek

Monday's appt.

We met with Dr. Schub, the neurologist on Monday and he continues to be pleased and surprised with how well Grace is doing. We once again told him about all of your prayers and that that it's because of Christ. The next time we go back to his office is for Grace's third EEG on October 20th and then we'll meet with him to discuss the results on October 25th. Grace is going to remain on the Clomazopam, which is the medication she started on even before the ACTH, which is designed to calm the brainwaves. She gets a quarter of a pill twice a day which is crushed and mixed with water and given to Grace in a syringe.

So at this point we stay the course and continue to pray for complete and permanent healing, that the seizures will never come back and that Grace will develop normally. Speaking of which, her voice is getting stronger and louder and she seems to enjoy vocalizing. She's also drinking from a sippy cup now, with just a tiny bit of help. She's actually been dying to do this for a while but we haven't let her. For example in her bathtub, we use a plastic cup to scoop water and pour it over her. She always tries to snatch it out of our hands and drink the water. We're considering these new sippy cup privileges her reward for all of the injections she endured.

Nighttime sleep is continually a challenge. I know we say that in every post. The last couple of nights were especially hard. We're tired and Michelle especially is feeling really run down. She hasn't had a full night's sleep since before Grace was born. Sometimes I really dread nighttime and after a hard night, it's a relief that morning has come. Please pray that all of our immune systems will be strengthened so that none of us get sick, especially Grace of course, but Michelle and I can't afford to get sick so as to not pass something along to her.

Thanks,

Derek

Monday's a significant day for Grace

Tomorrow morning (Monday) we give Grace what should hopefully be her final ACTH injection. She will have had a total of 44 injections over a period of 5 1/2 weeks of treatment. We also meet with the neurologist tomorrow afternoon to get his take on where to go from here.

Grace has now been seizure-free for 4 weeks and 2 days now, after experiencing seizures over a period of 3 weeks initially. She continues to have her personality and energy back, but also continues to struggle with sleeping soundly through the night. She does pretty good up until her second feeding of the night around 4-4:30 a.m. and then needs TLC to carry her through the rest of the night.

We are incredibly blessed that Grace responded so well to the treatment and we know it's because of Jesus.


We'll post about the outcome of tomorrow's appointment.
 
-Derek

Recent Pics

Here are a few recent photos of our precious girl.

Our little Nun loving some kisses from Daddy (with her bib over her head).

On a walk with Mommy.

Grace is absolutely in love with baths.

Singing songs with Mommy.

Granddaddy and Grandmommy came with us to the lake on Labor Day.

Out for an early morning walk in her jammies and jean jacket. :)

Days and Nights

Sorry it's been a few days since we've posted. Grace is still doing well, and is a delight to be around. She's actually more content and smiley than before all of this started, which we can only attribute to God's blessing on her and us. Other than feeling a bit stir crazy since we can't take her anywhere (due to her weakened immune system - doctor's orders), life is good from 8 am - 8 pm. I thank God for giving us some daytime relief, I thank my husband for taking over with Grace when he gets home, and I thank my mom for coming over and taking Grace for walks and folding my laundry. Days are awesome. Grace is fun to play with and easy to be around.

Nights, on the other hand, are still being quite the bear. Grace is waking up often and often staying up for literally hours at a time. Poor little darling, she doesn't want to be awake. She cries and moans and keeps her eyes closed most of the time. She will fall back asleep sometimes if we bring her into bed with us, if I press my face against hers and sing "God's Beautiful World" over and over again. Still, this sleep is terribly restless, which means Derek and I don't sleep. Plus I'm terrified of her suffocating, so sleep really is out of the question for me when she's in our bed.

I take Grace to her pediatrician tomorrow morning for her weekly blood pressure check, so I'm going to ask him about her sleep. I've already asked him about it---three times, I think. Basically, he's said that he isn't surprised that she's having trouble with sleep while she's on the steroid. This may just be something that we have to ride out.

As usual, we'd really appreciate your prayers regarding sleep. Brain power is getting less and less by the day, and both Derek and I are feeling a bit like zombies. Actually, I'm not really sure how zombies feel.

We're counting down the days until Grace's last shot, which is this coming Monday! After that, we'll still be sequestered at home for the next couple of months due to Grace's weakened immune system, but we are so looking forward to getting this steroid out of her system.

- Michelle

6-week whirlwind

So much has happened since Grace's first seizure on July 23rd. 6 weeks ago I never even heard of Infantile Spasms or ACTH and had no idea what an EEG was. Two emergency room trips, one hospital admission, numerous tests, a serious diagnosis, a scary medication, and 40 injections later, here we are. But my family is strong and we're tight-knit, and I would venture to say even more so now because of what we have gone through. Tears, pain, heartache, hope, fear, faith, encouragement, blessings, discouragement, doubt, sleeplessness, adrenaline, the whole gamut. But us LoVerdes are fighters--all 3 of us including a 6-month old baby. We persevere. We stick it out. We don't just sit back and take the crap that Satan throws our way. We do something about it. We cry out to God. We fight back. We draw strength from the encouragement and support of those around us.

From the day Grace was born I knew she was a fighter. I called her "the little perseverer." This is the little girl who's mother once chained herself to a weeping willow tree in protest, to keep her dad from chopping it down. Who's mother persevered through 10 years of chronic pain and fatigue and finally beat Fibromyalgia as well as food allergies because she stuck it out and kept clinging to Jesus. Grace has persevered through her trial with great patience and endurance, for example not even flinching during most of her injections. Both my wife and daughter are some of my greatest heroes (I never thought an infant would be one of my heroes).

There are still hills to climb and skirmishes to face, but there is a major light at the end of the tunnel for little Grace. And the source of that light is the Light of the World--Jesus Christ. He has brought Grace through. He is the one that has been touching her little mind and body. The night before we started treatment, the Lord gave me a promise in Isaiah 43:1-7 that little Gracie would emerge from this fiery trial without being burned (see my post on August 9th). That reminds me of the 3 Hebrew boys in Daniel chapter 3 who were thrown into a fiery furnace because of their faith and not only did they survive the intense flame, but they emerged without even the scent of smoke on their clothing. And they did so because Jesus was with them in the midst of that furnace.

Grace has responded unbelievably well to her treatment and thus far has escaped the most serious of the potential side effects of the ACTH. She has experienced only the more benign ones such as a ravenous appetite, fussiness, temporary alteration of personality, puffy face, etc. A lowered immune system is a significant side effect that we can't really measure, but we're taking practical precautions while trusting the Lord to keep her "unscorched" from that as well. (About 5% of the children on this medication die from a sickness such as a cold that morphs into something more severe and ultimately fatal.)

My prayer is that Grace will be like the Hebrew boys, having come through the fire not only unscathed, but with no hint that she was ever in a fiery furnace to begin with.

-Derek

Big news today

God is good. The EEG revealed that Grace's hypsarrhythmia (the abnormal brainwave patterns indicative of Infantile Spasms) is gone! She still has some occasional electrical misfiring which are technically seizures in her brain, but she's not having physical seizures anymore and it appears she's getting on track with her development. Dr. Schub measures success based on these latter 2 signs, so in other words at this point she is not showing clinical signs of Infantile Spasms. The doctor also expects further improvement in her brainwaves and Grace will have another EEG in about 2 months. He also said that about 1/3 of the general population have some sort of brainwave abnormality, but since we don't hook up to an EEG just for fun, you never know it. (If they hooked me up to an EEG, it would probably be something like, "Um, Mr. LoVerde, we're not finding any brainwave activity..." But my wife could tell you that.)

Dr. Schub, who's Jewish, was surprised to see how well Grace is doing and we told him it was the healing power of Jesus and about all of you praying for Grace.

When Grace had the EEG on Wednesday, we asked the technician if she had an idea of how things were looking and she told us about the improvement, so we had a heads up. But it was great to get the official word today.

Thanks as always for your prayers.

Derek

Today's EEG

Grace had her EEG today and acted like a champ as usual. On Friday we meet with Dr. Schub the neurologist to go over the results. We are very hopeful.

Please continue to pray for nighttime sleep; things had gotten better for a couple of nights but not so great the past few. Grace is eating a few times and last night she woke up a few other times, needing some TLC. We are very tired and are about to hit the sack for the night to try to capitalize on Grace's first sleep segment of the night.

-Derek

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.)