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