Sunday night update - things are looking up!

Thank you for your faithful prayers! We are experiencing the fruit of them.

The end of 3 full days at Scottish Rite, probably released Tuesday evening.

Blessings:
Fever totally gone.
Much improved appetite and energy level today.
Much more like herself today. For once, Michelle and I were pleased with Grace's orneriness. :-)
Still no definitive blood work results. The blood culture is being continuously scanned by a machine that aims to identify specific bacteria.

The test for Rocky Mountain Spotted Fever was sent out to a lab in Utah on Friday (maybe it helps to have a lab closer to the Rocky Mountains, heh heh). It takes 4-5 days to get the results, so that puts it at Monday or Tuesday. Grace could go home right away if this is the diagnosis, because she could finish up her 5-day round of antibiotics orally at home. In the meantime, they continue to treat her for that and also the Meningococcal meningitis (the more serious of the 2 possible infections). The later infection HAS to be treated via IV, which is one of the reasons they are keeping Grace admitted.

Been meeting daily with the attending pediatrician here, along with infectious disease doctor and met a couple of time with 2 different hand surgeons who checked out her infected right hand which has had a mark that could be a bite, along with some swelling and the main concentration of the tiny little red dots that are all over her body (hence the possibility of Rocky Mountain Spotted Fever).

Adeline turned 4 today and we had a little birthday party at the hospital, thematically centered around the Frozen movie. We recently moved and our awesome new neighbors Brad and Brooke hired a young lady who plays Elsa for little girl birthday parties. She came to our house this afternoon to surprise Adeline and it was a huge hit!

Adeline is a trooper through all the care and attention Grace has needed over the years related to her developmental delays and various ongoing therapies, and now this happening over her 4th birthday. She is a special little girl that I am extremely proud of.

We have had great peace in the midst of this scary storm. A peace that surpasses all understanding, which is a testament to the power of God, and the prayers of God's people.

Love from Michelle and I and Grace, to all of you.

Saturday night update

Staying overnight again tonight. Lots of poking and prodding today. Grace is being a champ.

She wants to go home really bad and is missing the family. Visits today from Mommy, uncle Zach, Grandmommy and Poppa.

Staff here is being very communicative and great to work.

Grace was able to get out of the room today and go on a wagon ride around the hospital and play some games in the playroom and in her bed.

Her appetite is still pretty much nonexistent.

She has had flu-like symptoms for several days but the Great news is that she had no fever all day long, which is a huge praise.

She has tiny red dots all over her body and redness around the eyes, which would be in keeping with a diagnosis of Rocky Mountain spotted fever, although that is still not confirmed as the official diagnosis. Another possible diagnosis is meningococcus, which would be the more serious of the two.

The palm of her right hand is where a possible insect bite occurred and around the bite area is very blotchy. The good news though is that the blotchy area is much lighter than it was yesterday. It was dark red yesterday and today was more pinkish.

Specific prayer requests:
That a diagnosis would come to light as soon as possible, and being treated quickly and effectively. Out of the two possible diagnoses, we would want to Rocky Mountain spotted fever, as it Has the better prognosis, and can be treated just as effectively at home as at the hospital. The other diagnosis would need to be treated at the hospital which could mean several more days here.

Another Journey of Grace

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Posted by Derek:

Dear friends,

5 years ago, my beloved firstborn Grace Elizabeth was admitted to Scottish Rite Hospital in Atlanta, facing a  life threatening illness at only 5 months of age. Today, at 5 1/2 years of age and now as the oldest of four, she finds herself in that same place again.

Having experienced persistent fever and other symptoms for several days, Grace was admitted to Scottish Rite yesterday and has been undergoing testing and treatment for what appears to be a bacterial infection in her blood, possibly tick borne. Still awaiting exact diagnosis, the Doctors are treating her for the 2 most likely suspects, both of which are are fatal when untreated.

Her prognosis is good and she is receiving world class care and medicine. But much more importantly, we have a mighty God that says that when we walk through the valley of the shadow of death we should not be afraid, because he is right there with us. (Psalm 23.) Additionally, Psalm 91 says "You shall not be afraid of the terror by night, nor of the arrow that flies by day, nor of the pestilence that walks in darkness, nor of the plague that destroys at midday. A thousand may fall at your side, and 10,000 at your right hand, but it will not come near you." We are trusting our Heavenly Father, in the name of His Son Jesus, by the power of His Holy Spirit, for Graces's healing.

Grace and I stayed at the hospital overnight last night and will do so once again tonight. We don't know exactly when she will be released, but are hoping to be sent home tomorrow, which is also Adeline's fourth birthday. We are missing being home, being with our family, and seeing our brand-new baby brother Levi who was born on the couch at home Tuesday morning.

Grace has been in the valley of the shadow of death before. Michelle and I have been there before with her. Most importantly, the Lord has been, and is once again, by her side.

Grace's continued journey - one year later

A year ago today we were at Scottish Rite hospital digesting a very difficult diagnosis and prognosis for our little 5-month old daughter after a series of seizures called Infantile Spasms. A year later, Grace is 17 months old, seizure free, incredibly happy and for the first time today, started crawling. As a result of her seizures, Grace has been delayed in the development of her gross motor skills, but has been on track or ahead with fine motor skills, verbal comprehension, problem solving and social interaction.

We're going to the beach a week from now for a family vacation and Michelle had been praying and hoping that Grace would be crawling by the time we went to the beach so that she could have some freedom to explore. God lovingly has given my wife the desire of her heart and ahead of schedule at that. :0) Grace has been on the threshold of crawling for the past week or so, but today it's like everything just clicked for her and I'm actually blown away to see how confidently she's moving and with a little speed, even if it's only for a very short distance. It's been somewhat surreal for Michelle and I to witness this significant developmental milestone and we can't believe that the day has finally come for Grace to crawl.

Since last December we've had a weekly session with a physical therapist in our home to help Grace develop her gross motor skills which were significantly delayed because of her previous seizures. The therapist more or less teaches us how to work with Grace on a weekly basis so Michelle's really been Grace's therapist, working with her on a daily basis. It hasn't been easy, having to manually manipulate Grace's every move with things related to sitting up, pushing up, pulling up, shifting weight, etc. in order to teach her how to be mobile. I'm amazed that children just normally do all of these things intuitively--it's hard to imagine, really.

We continue to teach Grace about walking, using the parallel bars from the therapist, so that Grace can hold on to each side and take steps. Up until recently, where Grace has started taking some steps on her own, we had to manually shift her weight and move her feet. She's starting to catch the vision though. We're praying she'll be capably walking by the time of the arrival of her baby sister at the end of October so she can help with chores around the house. :0)

Thank you guys for your continued support and prayers as many of you have continued to check in on Grace and see how she's doing. We are grateful most of all to the Lord for healing our baby girl and we're seeing the completion of his promise to us in Isaiah 43, that Grace would walk through the fire and not be burned--that there would be no evidence that she ever went through the fire at all. That promise is coming to pass more and more as time goes by.

Grateful for our loving Heavenly Father and the healing power of his Son, the Lord Jesus Christ,

Derek (for Michelle and I)

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