Duplex for Rent

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

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

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.
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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

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

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

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

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

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

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.