Superfly Shimmyboy

Showing Some Love

2010-04-08T15:50:00.005-06:00

My co-worker's roommate is a starving artist who specializes in sports paintings. I enjoy his stuff and figured somebody else might appreciate it too. You can check out his online gallery here.

A Post for my Gaming Friends

2010-04-06T16:32:00.002-06:00

4/17/2010 Computer Gaming for Good Cause!

Digital Knights presents: Knight at the Park

Computer LAN gaming event to benefit Pagnozzi Charities. All door earning and earnings from raffle will be donated to Pagnozzi to help provide scholarships for underprivileged youth to help them attend athletic summer camps.

Doors open at 10:00 am and we will game till about Midnight. Entry is $20.00 and will include food and one ticket for the raffle. Come out and test your skill on our driving simulator. Get some frags against other local gamers in games like Team Fortress 2, Battlefield: Bad Company 2, Call of Duty, L4D and L4D2, and many more!

We will have the video-blog Ones2Zeros on site capturing the event, and shooting an episode of their show.

Feel free to contact me with any questions or for preregistration information.

Come out on the 17th for a great time and a great cause!

For more information, contact:
Greg B Young
Lowell Operations Center South
479-750-6121
gbyoung@arvest.com

Ella's Questcor Photo Shoot Part Deux

2010-04-05T22:44:00.002-06:00

More photos have been added and can be seen here.

Ella's Questcor Photo Shoot

2010-03-20T05:14:00.005-06:00

The first batch of photos from our day with the guys from Questcor can be seen here.

Hobby Farm for Sale by Owner

2010-01-29T16:35:00.002-06:00

My sister's farm is for sale. It's located at 16045 Trapp Hill Rd., West Fork, AR. Full details can be found at http://westforkfarm.blogspot.com/

Who Likes Money?

2010-01-29T16:33:00.001-06:00

$50 to anyone who refers a renter to us that signs a lease!

The Not-So-Latest

2010-01-29T16:30:00.002-06:00

For those of you that don't read my wife's blog, the below is her recap of our latest trip to Arkansas Children's Hospital last week:

Well, we made it home around 10pm last night. So glad to be back. But. . .

I am fairly frustrated by the trip.

Yesterday was a whirlwind of different medical professionals in and out of Ella's room all day. It was very confusing and seemed like none of them were communicating with anyone else. Each time a doctor came into the room, I asked about the same things, but I really never got anywhere with any of them. Our local neuro had told us she'd like genetics to see Ella while we were in the hospital, and I'm fairly certain that it was more important for her to capture an event on the EEG and not just go for an arbitrary 24 hours. But, even though I asked several times, we didn't get to see a geneticist and the minute we hit 24 hours on the EEG they took the leads off.

I have had concerns about feeding difficulties with Ella. The nutritionist spent some good time with me and listened to my concerns and gave me some specifics to work on. She recommended that Speech and OT come to evaluate Ella and left to set that up. But time was running out.

Soon after that, the nurse was there to discharge us. At this point, I hadn't heard whether genetics was coming, I really wanted Ella's eating to be evaluated, and we still really didn't have a good answer on "fine, the EEG is not showing anything now, but what does it mean if she has these abnormal facial movements at home?" thing. So I started asking questions. The nurse sent the discharging doctor back in. Said that genetics would follow up later, pending one more test result yet to come in. Huh? Well, okay then. That's not consistent with what I knew from before, but I just let it go for now.

I spoke with Chris on the phone, and he said "Can you at least have the doctor look at the video of Ella's facial movements before you go?" So I went out to the nurse's station and played the clip for the doctors, who then called their attending and described it to her. She believed it was a tic movement and not a seizure. So, we'll continue with current course of treatment. And if Ellie starts to have them more frequently again, they encouraged me to video as many of them as possible and keep our neurologist posted. Okay, I can do that.

I really wish I could think of something that makes this trip worthwhile, but even for an optimist like me that exercise is proving difficult. I guess I can focus on the nutritionist's suggestions and try to get Ella's eating on track. Fortunately, the early intervention program that we are in the process of getting Ella admitted to will be doing speech and OT evaluations too. And of course, we learned that Ella's EEG shows no evidence of residual infantile spasms. Which is just awesome! And we did get to see Aunt Kristin and Uncle Shawn, and my friend Jennifer, so that was good too.

A Repost Update

2009-12-22T10:10:00.002-06:00

The below is an update from Megan. I have added the latest informattion.

Catching you up
So, here's the deal. Ella's been having these strange facial movements for approximately the last month. I haven't mentioned them here previously for several reasons. For starters, they were isolated enough in the beginning that it was hard to know if I was just imagining things; enough time would pass between events that I would convince myself that it was just rare and normal baby stuff. Also, let's be honest, I've been in denial. Lastly, and this one's hard to explain, when you have a (not sure what to call her but let's go with) chronic child, it's difficult to be objective about what you see; you don't want to automatically assume the worst, but you know that the chances of what you are seeing being more of the disorder are fairly high so it therefore shouldn't be ignored. Oh and one more thing, when writing about aforementioned chronic child on my blog, it's important to me that I'm not constantly crying wolf with regard to her status because I know that many others are invested in her well-being too.Instead of blathering on and on here about what Ella's face may or may not have been doing, somewhat sheepishly, I first called about these facial movements (along with the few potential head drops I had seen) to Ella's neurologist right before Thanksgiving. Dr. B had me increase Ella's dosage of Keppra (her only remaining anti-seizure med) and then saw her in the clinic the following Monday. At that appointment, the doctor asked me to describe what was going on, and I described the events as best I could. She also asked about frequency, and I felt completely silly having to admit that it hadn't even occurred to me to keep track of that (again, I think denial played a role here). I couldn't even ballpark it for her. Dr. B told me that we would continue with the new dosage of Keppra and follow up in 2 months. She also asked me to try to get this stuff on video, which I hadn't thought to do. Another duh! moment for me.It took me more than two weeks to catch anything on video because the strange movements are brief and infrequent. Two nights ago, though, I finally did observe several in a short time frame and ran to get the camera. I filmed her for about a minute, then I uploaded the clip to youtube and promptly sent the link to our local neuro Dr. B and Dr. C--one of the foremost experts in infantile spasms. I asked them what they thought she might be exhibiting. What I really wanted to say was, "Please tell me the infantile spasms haven't come back, please tell me the infantile spasms haven't come back."Dr. C emailed back within a few hours. My admiration for this man grows with each interaction. He said that Ella was adorable and that he could tell she'd made developmental progress since the first video. His guess is that it is either seizures or a movement disorder. He recommended a video EEG to determine which one. In a second email, I asked Dr. C if they did end up being seizures whether he thought they were infantile spasms. He replied that he suspected them to be partial seizures instead. So that's a relief for the time being (though partial seizures can evolve into IS). He also further clarified that he was not terribly convinced that Ella had a movement disorder--which is usually a genetic malfunction in nature and has nothing to do with her brain malformation--because it would be unlikely that she would have two rare and completely unrelated problems. Seizures just makes a lot more sense. He then reiterated the need for a video EEG to confirm.But there's the rub. As far as I know, long-term video EEGs (the kind of EEG he's talking about which typically run for a minimum of 24 hours) for children are not performed in Northwest Arkansas. So, if our local neurologist (who apparently isn't an emailer) requests a video-EEG (and I certainly hope she does) (after I take a hard copy of the facial movement video to her tomorrow), I think we would have to return to Arkansas Children's Hospital for that. Which is three hours away. During the week of Christmas. Not great. But God is good all the time, so we'll manage, with Him as our strength.
===============
To sum up: Ella's having new facial tics, caught on video and sent to doctors, partial seizures suspected, needs EEG confirmation, waiting for actual order from OUR doctor, may have to go to Little Rock (and if so, most likely sooner than later), God is still good.

UPDATE

Ella is scheduled to have a video EEG tomorrow at 7:30AM in Lowell. Meg has to wake her and keep her up starting at 4AM. We are praying that she has her tics so that it will be captured on the EEG so that we can get a diagnosis and subsequent treatment. If the 4 hour EEG doesn't capture the tics, we have to go to Little Rock for the 24-48 hour EEG.
===============
There is another story to be told here, one that involves abnormal labwork from Ella's hospital stay and pending follow-up testing for some pretty serious disorders. But it is late, and I'm having trouble keeping my eyes open. Besides, other than the lab levels that were outside of normal limits, she's had few if any signs or symptoms of the disorders in question. I'm fairly confident that her follow-up tests will come back normal. Specifics on this to come later.

UPDATE

The labwork came back abnormal again, but in a different way than it did back in July. We are still awaiting other test results and will undoubtedly have to get new tests done due to the second abnormal result from the initial test in July.

Duplex for Rent

2009-12-16T17:40:00.002-06:00

Located at 5513 Roxanne Place, Springdale, AR

2 bedroom, 1.5 bath

Approx. 1,250 sq. ft.

1 car garage

Dishwasher, oven, central heat and air

Includes washer, dryer, and refrigerator if needed

Quiet neighborhood, cul-de-sac, privacy fence

$625 month, $500 deposit.

Arkansas Children’s Hospital Climbing in Rank to Win Gameroom Makeover from Children’s Miracle Network and X-box

2009-09-26T07:19:00.001-06:00

Please go here http://xbox.childrensmiraclenetwork.org/ to help ACH win a gameroom makeover.

LITTLE ROCK, Ark. (September 22, 2009) -- Arkansas Children’s Hospital currently is ranked fourth in a national effort among pediatric hospitals to win a gameroom makeover for the young patients who are confined within the hospital. The public is voting for their favorite Children’s Miracle Network hospital and Arkansas Children’s has climbed from the eighth spot, to within 100,000 votes of third place.

Children’s Miracle Network is an international non-profit organization that raises money for 170 pediatric hospitals, including Arkansas Children’s Hospital. The three hospitals with the most votes receive a playroom makeover valued at $10,000 that can include items such as Xbox game consoles, games, plasma TVs, computers and other entertainment.

Individuals who vote are automatically entered for a chance to win one of five Xbox 360 Elite consoles that will be awarded to the public. A maximum of ten votes are allowed each day at xbox.childrensmiraclenetwork.org. The contest ends October 16. Winners will be announced in early November.

Arkansas Children’s Hospital is the only pediatric medical center in Arkansas and one of the largest in the United States serving children from birth to age 21. The campus spans 29 city blocks and houses 316 beds, a staff of approximately 500 physicians, 80 residents in pediatrics and pediatric specialties and more than 4,200 employees. The private, nonprofit healthcare facility boasts an internationally renowned reputation for medical breakthroughs and intensive treatments, unique surgical procedures and forward-thinking medical research - all dedicated to fulfilling our mission of enhancing, sustaining and restoring children’s health and development. ACH has ranked twice on FORTUNE 100 Best Companies to Work For®, most recently at No. 85. For more information, visit www.archildrens.org.

Sometimes I wish I Were in Italy; Sometimes I Enjoy the Tulips

2009-09-26T07:12:00.003-06:00

Megan's last two posts bear repeating. So, I've posted them below:

Common Ground
Because of my Ella and our crazy summer, I've spent a lot of time thinking about what it would mean for us to have a daughter with special needs, persistent developmental delays, a handicap or whatever you want to call it. (Not to be a broken record, but we still don't know what her future holds; we're hoping for the best while trying to prepare for the worst. God, grant us wisdom and grace.)I've thought a lot about the time before we knew anything was wrong, how even the simplest of things brings on a new wave of grief as I struggle to embrace this new (potential) reality we find ourselves in. (The tears don't flow quite as freely now, but it's certainly a process--more of a marathon than a sprint.) I have come to the conclusion that I am not alone in feeling this way. That there was likely a time for every special needs family, a time forever known as Before--before the tests, the scans, a diagnosis--when the hope grew with an ever expanding belly and plans were made that didn't include durable medical equipment and frequent doctor visits.I've had opportunity to understand this sooner, but sometimes full knowledge is only gleaned through experience.Opportunity in my own family even. My grandmother is one of the strongest people I know. Until recently, when a series of devastating strokes took much of her physical ability away, she was my handicapped uncle's primary caregiver for more than fifty years. To me, that's the way it has always been. But not to my grandma. For her, there was a time when having a handicapped son was not her lot in life. And you might think that perhaps half a century's worth of time would be enough to forget the grief and the what-might-have-beens, but it would not seem that way. She and I only spoke about that season surrounding Arthur's birth (wherein he suffered from erythroblastosis fetalis, also known as Rh factor incompatibility) once, but it is a vivid memory for me; and even in my adolescence I could appreciate the very palpable and raw emotions just under the surface in the telling of her story.And yet another opportunity to understand. When my husband was born, he was two and a half months early and suffered a brain injury when he stopped breathing soon after birth. I had heard snippets of his story along the way, but I knew there must be more. Ella's condition has given me boldness to ask about what I might otherwise shy away from. One afternoon last month, I asked my mother-in-law about the circumstances of Chris' birth. You wouldn't know that she was describing events from more than thirty years ago; the fear, the questioning, the unknowns--these are things you never forget.

Welcome to Holland
I happened upon this essay in the first few days after we came home with a diagnosis for Ella. It is an excellent read for anyone walking the path of having a special needs child or trying to understand someone who is.
------------------------------------------------------------------
WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Getting Closer

2009-06-18T13:11:00.000-06:00

Ella continues to have seizures and they are getting stronger instead of weaker, more frequent, and are starting to cluster again. She is back on an IV. The MRI showed polymicrogyria in the right frontal lobe of her brain, which is a malformation or disorganization of the neurons that can be just coincidental or a cause for seizures. In Ella's case, the neurologist currently believes this is the likely cause of her seizures as no other factors have been discovered. But, we are still awaiting the results of all the blood and lab work from yesterday. The cause only partially determines the course of action to be taken. We still don't have a firm diagnosis, which means we don't have a firm treatment plan either. With seizures, the type is usually determined by which medicine is effective in controlling the seizures instead of the type being determined and then, prescribing a medication. Kids with polymicrogyria either have infantile spasms or other seizure disorders. So, it makes sense that she is showing signs of both infantile spasms and other disorders. The amount of developmental delay and disability associated with polymicrogyria is across a broad spectrum. In some, delay is so mild that polymicrogyria is not discovered until the child is much older and starts having seizures. In others, it's totally devastating from the start. There is no predictor of severity of delay. The neurologist believes her deficiencies aren't the most severe since she is responding to us, but there's no way to know how severe they are at this point. She's not the worst she could be, but not necessarily the best either. Since she initially responded to the Keppra, her dose is being increased to the maximum allowed. If that fails, we will start the ACTH. Even the doctor wants to avoid this if at all possible. Her prognosis is best if the seizures are stopped within the first thirty days of symptoms to avoid further damage. We now understand that it's not the number of seizures that do damage, but how long before the seizures are controlled that is the determining factor. The initial damage is done. We don't want it to be prolonged. We know she was having seizures as of May 25, but don't know if it started prior to that. Assuming May 25 was the start date, we still have enough time to take a final attempt with Keppra and if it fails, start ACTH before the optimal window of time closes. We'll know within the first 24 hrs. if Keppra was successful. If Ella requires ACTH, we will be here into next week. If not, we'll be home this weekend. We want to go home. In the future, her further treatment will likely require us to come back every so often. We are hoping that this isn't the case and that her treatment can continue at the Children's Hospital Clinic in Lowell, just up the road from our house. Please pray that the test results would give us a definitive diagnosis of something other than infantile spasms with the corresponding developmental delay and disability so that we can have a definitive treatment plan and avoid ACTH and the undesirable side effects that come with it. Pray that she would have no developmental delays from polymicrogyria and would continue to respond to us, laugh, coo, and smile, developing as a baby of her age should. Her laughing and smiling is a big answered prayer for us as it is the thing we missed the most. It lifts our hearts and spirits. Please pray that she would respond favorably to the Keppra and that her seizures would stop immediately and permanently so that damage is not prolonged, we can go home, and her diagnosis points to something other than infantile spasms with the accompanying developmental delay and disability. Please pray that we can continue her treatment in NWA instead of Little Rock. Please pray that we get approved for ARkids. Please pray that Ella avoids any extraneous illness while she is here as she is battling congestion and a cough that is moving toward her lungs and a diarrhea bug. Cooper is sick and is on antibiotics and breathing treatments. Pray that he gets well and doesn't get Jackson sick. Pray for our families as they care for our kids while we're gone. We're just waiting to see what happens next.

The Roller Coaster Continues

2009-06-17T19:52:00.000-06:00

The morning was spent prepping for a day of tests. Ella had blood drawn at 10AM, then the EEG and IV removed, the MRI at noon, then the spinal tap. She has spent the rest of the day recovering. We are awaiting the results of all, but expect them tomorrow morning. Ella started smiling and laughing at us this afternoon, something we hadn't seen in more than 3 weeks. She had been seizure-free since starting the Keppra until 5:30pm today. Unfortunately, this has been her pattern, a medication change, 48 hrs. without seizures, then back to where we started. The roller coaster continues. She has had 2 more since 5:30pm. They've called the doctor and we are in a holding pattern. If the seizures cluster, increase in frequency or intensity, they'll consult with the neurologist again as to the appropriate course of action. There was talk of us going home tomorrow, but now that's up in the air. Yesterday, the neurologist had said if Keppra didn't work, ACTH was the only other option, which means more time in the hospital for monitoring, training, and more side effects. Thanks for all the phone calls, emails, messages,etc. A special shout out to my peeps at Arvest for the nice azalea. Thank you, Stefanie :) The receptionist was overrun by pollenating insects. I apologize for the run-on paragraph. The Tab and Enter button on this keyboard don't work.We are physically and emotionally drained, but we are hanging in.

A Busy Day Tomorrow

2009-06-16T18:34:00.003-06:00

Ella was hooked up to the EEG and had a few seizures that have been documented as we are under constant audio and video surveillance. She will be monitored until the MRI tomorrow. We saw the neurologist this morning. Ella had a seizure while he was here. He thinks the EEG further points toward a diagnosis of infantile spasms, but the other neurologist thinks it could be something else as she is not a classic case of infantile spasms, but has half the symptoms of infantile spasms and half of something else, which they haven't named. Ella is to have an MRI tomorrow and will be on the EEG until then. We're told that we'll be here at least this week if not the beginning of next. Ella's prognosis is better if the MRI shows nothing. That leaves the possibility, however slight, that Ella could eventually not have seizures. She is also scheduled for more bloodwork and a spinal tap tomorrow. She has been put on Keppra to see if that will stop the seizures since this is one of the main goals. A reduction is seizures doesn't really do much good. It's all or nothing. We'll know after 24 hrs. if Ella is responding to the Keppra. If so, this points to something other than infantile spasms. If Ella does have infantile spasms, she'll be put on a course of ACTH, which has a host of undesireable side effects, for up to 8 weeks depending on how well she responds. The quicker she responds, the better the prognosis. Please pray that the MRI comes back clear, that she responds well to Keppra and has no more seizures, and that the spinal tap goes well. We'll also meet with the financial aid dept. to determine whether Ella qualifies for ARKids or TEFRA insurance. ARKids is the better option. So, we hope she qualifies.
It's a slow, methodical process of elimination. We're just waiting to see what tomorrow brings.

We've arrived

2009-06-15T19:53:00.002-06:00

We are here at Arkansas Children's Hospital. Ella is hooked up to the EEG and has already had a few seizures that have been documented as we are under constant audio and video surveillance. She will be monitored through tomorrow until we see the doctor. We'll then know if Ella is to have an MRI, but we suspect so. It's one step at a time. We hope that we are only here a few days before we are sent home with a diagnosis and an action plan. Please keep us and our families in your prayers, especially Jackson and Cooper.

Headed to Children's

2009-06-15T11:55:00.002-06:00

The dr. called regarding Ella's EEG. It was "abnormal" and "worrisome." She thinks it may be infantile spasm. Not good. We are out the door to AR Children's hospital to get Ella admitted for an overnight EEG, MRI, bloodwork, and other tests. This is all we know and will update once we know more. Please pray.

Back to the Lab and Then the EEG

2009-06-11T14:38:00.005-06:00

Ella has been having seizures more frequently and they are becoming more clustered together. So, we went back to the lab to have a phenobarbital level drawn again yesterday. We'll see if her medication is increased. We are still waiting to hear the results from the doctor.

Today, Megan had to keep Ella up all day in preparation for the EEG. It was a tough task, but she was successful in her endeavor. We had to keep her awake for the first portion of the EEG. She slept for the middle portion. Then, we had to wake her up again for the final portion.

To start, they measured her brain activity while they flashed a strobe light with different patterns in her eyes. We think she might've had a seizure just after the lights, but couldn't tell because it was so dark in the room and she was swaddled very tightly so as to restrict her movement. We were told it wasn't necessary for her to have a seizure while being monitored as the doctor would be able to tell regardless. Then, they measured activity during sleep, then wakefulness. She was so tired that she wouldn't wake up with me clapping as hard as I could in her ear. We used noisemakers and were jostling her to no avail. She finally woke up when we were about to put a wet rag on her face. Megan took pictures of Ella hooked up to all the electrodes, which I'm sure will be posted soon.

Megan writes:

"The EEG went well. We don't have results yet, but we have a little bit better understanding about what they might learn from it based on what may or may not have been in the tracing.

Praise: We happened to run into a social worker as we were checking out who hooked us up with an application for supplemental medicaid for chronic illnesses (called TEFRA). She was incredibly helpful and friendly. She advised us to wait until we are billed to pay anything on the test right now, whereas we were originally told to expect to pay for it in full today (over $600!). The application for TEFRA is a long process and the sooner you get started the better, so it was great to have this information essentially at the beginning of Ella's illness. And the coverage backdates three months from when you put in the paperwork, so if Ella is approved (please pray that she will be :), it would even cover her recent hospitalization, as we understand it. That's huge!

Thank you for your prayers."

Now, we are waiting to see Dr. Balmakund on Thursday to go over the results of the EEG.

Holding Pattern

2009-06-10T11:44:00.000-06:00

Below is the latest from Megan:

We don't have any major news on Ella, still waiting for what we hope will be a very productive and information-gleaning neurologist appointment in eight days. We go for the EEG on Friday, but I don't expect that they will be able to tell us anything right then; we will instead get the results from the neuro. After the pediatrician upped Ella's medicine on Thursday and a short adjustment period, E went almost 48 hours without seizures. They've started to breakthrough again in the last few days, about four to six times a day right now.

I wrote the following on my facebook page yesterday:

"I wanted to update, but I don't want to sound despondent or hopeless. I'm actually in a pretty good place right now.The seizures that she's had since starting the medicine are not as bad as before we went to the hospital, in my opinion. They used to come in clusters and now they are rare and isolated events. This is incredibly encouraging to me.I think we can manage with just a few breakthrough seizures if that's the best we can get with the medicine, but if we can find a dose, a different med, or a combo of meds that gives her seizure-free days for good, that of course is the goal.(She's at the maximum recommended dose (mg/kg/day), but her blood level was low enough last week, that maybe there's room to increase it yet?)I told Chris that I think (and hope) that this waiting period before our first appointment with the neurologist will be the most uncertainty we will experience."

Chris asked if there were any specific prayer requests that we could share regarding the EEG. First off, they want her to be sleep-deprived. (How exactly do you do that? Isn't it that they only sleep when you don't want them to? :) Please pray that I would know how to manage her day so she will stay awake and meet this requirement. For the test itself, pray that they would get a good reading and get it as quickly as possible. I think she may have to be strapped down during what I understand is--best-case scenario--a twenty-minute evaluation, so it is important to me that this be swift. Pray that she will hold still and not be too upset. And finally, please join us in praying that it is a normal EEG. True, if there is nothing to be found on the tracing, we may not get a diagnosis right now, but a normal result may be able to help the doctors rule out some of the more serious types of seizure disorders, which is our hope.

Thank you for checking in on us.

Grieving the loss of the Perfect Child

2009-06-07T22:36:00.002-06:00

I'm reposting Megan's latest blog entry below. It's a good assessment of what's happening with us. Today is the first day since this all began that we haven't noticed any seizures. But, I can say that I haven't been watching very closely as constant vigilance is exhausting. We've hit the maximum dose of medicine allowed for Ella. So, we hope that it does the trick....

In the spring of 2004, I spent six weeks in maternal and newborn nursing. I did not have children of my own at the time and would not be pregnant with Jackson until that summer. In clinicals (hands-on experience in the hospital), I got to witness the miracle of birth and hold itty bitty babies in their early hours of life. It was an exciting, baby-fever-inducing season.

In addition to our hospital hours, we also spent time in the classroom. One lecture stands out to me above all the others, even five years later. During one tearful morning, our instructor guided us through a discussion about providing care and support to families in perinatal loss and the birth of special needs children. We talked about the grieving process in miscarriage and stillbirth, but then she said something that floored me; it was something along the lines of: "Additionally, when a child is born alive but with birth defects or chronic health problems, the family often needs to grieve the loss of the Perfect Child."

Whoa.

Being healthy myself, I assumed, as many women do, that I would have uneventful pregnancies and healthy babies. It never occurred to me to think otherwise. Intellectually, I knew that these things happen and that no one is immune, but no sense in being all doom and gloom, right? And besides, pregnant women have a tendency to be a bit on the paranoid side anyway, so why try to prepare oneself for such eventualities that statistically do not happen all too often (thankfully).

Even when--during my very first shift as an RN, while pregnant with Jackson--three out of my four pediatric patients had significant birth defects, I did not linger too long on the what-would-I-do-if's.

And fortunately, all three of my babies were born healthy. I counted fingers and toes, watched them take breath after breath, and felt peace in knowing that they were okay. Therefore I thought (assumed is a better word) that we were out of the woods on this one.

Fast forward to now. Where I'm trying to wrap my brain around this new reality we find ourselves in. The one where our baby girl has seizures and needs medicines and all manner of tests and such. In digging into why I have been tearful the last few days about all this, I am realizing that it is because I am indeed in this process of grieving (the loss of) the perfect child.

Now, please don't misunderstand me. I am not saying this perfect-child-ness is lost forever. I do not know what the future holds for Ella. I have no idea if this is a disorder that she will grow out of with no lasting effects or on the opposite side of the spectrum if she will be profoundly handicapped by it. I DO know that the latter is certainly possible. And that makes me sad.

Regardless of the outcome, however, I know that God has not forsaken my daughter. I know that I love her as much as I ever did, and that He loves her more than I ever could. By His grace, we will walk this road for as long as it is necessary, and we will continue to praise Him in the journey.

Appointment with Dr. Simmons

2009-06-04T16:10:00.000-06:00

We met with Dr. Simmons, our pediatrician. He increased Ella's medication and prescribed another to give in an emergency if she has any more big seizures. If she doesn't improve, we'll go back to Dr. Simmons to increase the dose. We will keep a seizure journal. Ella will get another blood level drawn the day before her Friday, June 12, EEG. Now, we wait.

Off to the lab

2009-06-03T12:26:00.001-06:00

Megan just heard from the doctor's office. We will go to Washington Regional to have a phenobarbital level drawn in the lab. No other changes to the plan unless Ella has worsening symptoms between now and her (previously scheduled) follow-up appointment tomorrow afternoon.

Thanks for weathering this storm with us. You guys are awesome!

The latest and thoughts from Megan

2009-06-03T11:17:00.000-06:00

Ella had more seizures this morning that were like her first ones, but stronger than those from last night. We are waiting to hear back from the doctor. Below are Megan's thoughts on the situation:

If I might share my nurse-y thoughts for a moment:

My theory is that the IV medicine that Ella got in the hospital is wearing off (it takes a long time with this one). The reason I think this is because the two periods of time where she's had seizures so far were just before her next dose of twice daily oral medicine was due. So, if that's what is going on, I'm guessing the next issue becomes: "Can her dose of phenobarbital be increased without risk of toxicity (undesirable side effects)? Or does she need a second medicine to try to keep the seizures at bay?"

If she is on medicine for any length of time, which does seem to be necessary *sigh*, they will routinely draw blood levels on her (I'm not sure how often) to make sure that the medicine is not reaching toxic levels or conversely that it is not too low to be considered therapeutic (effective). Since she is a baby and is growing exponentially right now, I expect that her dose will continue to be tweaked up to meet that growth.

I thought I would be overcome with fear if Ella continued to have seizures, but that has not been the case. Thank you for praying for me in this; I have no doubt that it is a supernatural peace that I feel. Thank you for loving on our daughter and loving on us.

Here we go again

2009-06-02T22:09:00.000-06:00

Ella has had more seizures. Megan is home and confirmed my observation. The plan remains unchanged.

Update

2009-06-02T21:24:00.002-06:00

To catch up, you can read the updates by friending me or Megan on Facebook or by checking here and Megan's blog, http://sermonsinstones.blogspot.com. You can also find Megan on Twitter: @ms_megan

Ella had 2 little seizures at 9pm. They weren't as intense as those at the end of this week, but more like they were at the beginning of the week as shown in the video I posted. They were short and less pronounced. But, I knew what I was witnessing this time around. We will contact the doctor in the morning. It may be that her medication needs to be increased a little.

Megan's Prayer Requests

2009-06-02T18:20:00.000-06:00

Could you join us in praying that God will be glorified in this, that we will lean not on our own understanding or strength but fully on God, that Ella will remain free from seizures, that we will continue to have unity in our marriage, that the accuser will have no foothold to try to point blame on us or stir up guilt, that we will have answers to our (many) questions, and that our boys will be insulated from any fears/anxiety they may sense in us?

Also, I am trying to work extra hours this week to make up for the hours I missed while we were in the hospital this weekend and perhaps will continue to work extra in the weeks to follow as we anticipate the medical costs we've incurred/will soon incur; please pray for grace for the boys as I am out of the house a little more, especially Cooper as he is really struggling with separation anxiety right now anyway; and pray for favor for Chris as he is the caregiver when I am gone.

Finally, I am struggling through some of the strong emotions I've felt since this journey began last week, emotions that I shoved down inside while in "survival mode" in the hospital. I don't think I've ever been more scared or felt more helpless than I did as I observed Ellie's major seizure on Friday morning. It continues to affect me, and I pray that God would help me release it soon (though I'm admittedly afraid that if I try to forget that I'm somehow not being a good mother to Ella--does that make sense? I'm also afraid to try to close that off only to have it ripped back open if she has another seizure.) I would like to deal with these emotions in a genuine way while leaving room/pacing myself for the possibility that we are not "through the woods" just yet. I believe that through Christ alone, and with His perfect provision of just enough manna for one day at a time, we will be sustained, no matter the outcome.

Ella's Spells

2009-05-28T17:36:00.003-06:00

Yo Joe! Remix #228. NIV vs. KJV vs. ESV (Bible wars told via GI Joe)

2009-02-19T18:55:00.002-06:00

Cool article for G.I. Joe fans

Interview with Rick Warren

2009-01-22T18:07:00.002-06:00

Here is a link to an interview with Rick Warren, the author of The Purpose Driven Life and the guy that gave the invocation at President Obama's inauguaration.

Pictures of Ella Claire

2009-01-17T18:33:00.002-06:00

Ella Claire Daniel, born 1/15/09 at 12:16pm. 10lbs., 10oz. 21 inches.

Redeeming Social Life Online

2008-12-12T18:18:00.001-06:00

Redeeming Social Life Online

Posted using ShareThis

How to Be Fired

2008-12-03T11:34:00.005-06:00

Thanks to my friend Bill for these great tips on how to get fired.

Step One: Get Fired

Step Two: Freak Out

Step Three: Decide on Your Story

Step Four: Be the Brand

Step Five: Eliminate What You Hate

Step Six: Embrace Repetition

You can read the full article here.

Word!

2008-11-30T15:50:00.000-06:00

Got Jobs?

2008-11-19T12:28:00.002-06:00

I'm officially unemployed after falling victim to the "economic downturn." On the bright side, after seeing my Star Wars t-shirt the other day, Jackson asked, "Who are they?" After explaining each character and their roles, he asked "What is it?" I responded, "It's a movie. We'll watch the trilogy really soon." Then Cooper said, "Star Wars!" for the first time ever. Now I've got the time to introduce my kids to the best movies ever made.

Plus, I am free to join MyBook, FaceSpace, Tweeter, and all the other colossal timesucks, only to completely ignore them once I have better things to do. Gotta run, my AOL account just said, "You've got mail!" These internets are so totally rad.

2008-10-21T20:37:00.002-06:00

Mission Adelante Video from Jarrett on Vimeo.

Jason, my roommate in Uruguay, works for Mission Adelante in Kansas City.

Man's solution for everything: Just blow it up!!

2007-07-31T21:13:00.000-06:00

This is a link to a post by my friend Travis about the true story of blowing up a whale that was spoofed in the Reno 911! movie. Enjoy.

Golf For Charlotte

2007-07-08T15:56:00.000-06:00

Check out the Golf For Charlotte website. In August, there will be a fundraising golf tournament in Conway to help with Charlotte's medical expenses. If you want to help, but aren't a golfer, you can make donations at any First Security Bank. Just make a check out to Travis and Amanda Mulhearn, and the tellers know the savings account number in which to deposit it. If you're out of town, you can mail a donation to:

First Security Bank

1390 Hwy. 64 West

Conway, AR 72032

All donations are appreciated greatly.

Why I love Big Dave

2007-07-01T17:16:00.000-06:00

A video Dave made to roast the senior med students. Reminds me of the Friday nights watching Bruce Lee movies at Hendrix with Dave. Glad to see the one birthday present I ever got him went to good use.

Check out my new links

2007-07-01T17:00:00.000-06:00

Specifically, please visit my cousin's Caring Bridge site. She has had heart troubles and is at Children's in Little Rock and is on the heart transplant list. You can read her blog to get caught up. However, recent good news may mean that she won't have to have a heart transplant after all.

My Photos have moved

2007-06-25T22:00:00.000-06:00

My photos have moved to Flickr since Yahoo Photos is going dark soon. The clock is ticking for the rest of you Yahoo Photos people.

2007-05-19T13:31:00.000-06:00

2007-04-21T14:39:00.000-06:00

2007-04-20T20:56:00.000-06:00

2007-04-14T16:57:00.000-06:00

2007-04-14T16:47:00.001-06:00

2007-04-14T16:21:00.001-06:00

2007-04-14T16:06:00.001-06:00

2007-04-14T14:21:00.000-06:00

2007-04-14T14:10:00.001-06:00

2007-04-14T10:55:00.000-06:00

2007-04-14T00:20:00.001-06:00

2007-04-13T23:31:00.000-06:00

2007-04-13T20:03:00.000-06:00

2007-03-18T09:39:00.001-06:00

2007-03-18T09:30:00.000-06:00

Hospital Pictures Link

2007-03-16T21:33:00.000-06:00

click the link to see the hospital pictures

New Photos on Yahoo

2007-03-14T22:02:00.000-06:00

Cooper's latest pics up on my Yahoo page, video to be posted here soon.

videos

2007-03-09T14:30:00.000-06:00

2007-02-09T20:48:00.002-06:00

2007-02-09T20:48:00.001-06:00

2007-02-09T20:44:00.001-06:00

I can't believe I'm doing this

2007-02-06T21:18:00.000-06:00

Started this blog to easily post stuff. It won't be exciting, just informative and random. I hate blogs.