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