Sermons in Stones

Making Progress

2012-02-13T12:21:00.000-06:00

I'm really glad that we came down to Little Rock last night. For one, it actually did start snowing overnight, and I've heard that some parts of the interstate between here and home are very treacherous. For two, Ella had a seizure this morning, and since she was already hooked up to the EEG here in the hospital we were able to record it. Had we come at noon today as we were originally scheduled, we would have missed it. Since she only has a few a week, each one is very important. And like the 2 previously captured when we were here in November, this seizure originated in the left side of her brain.

So now we need 3 more recorded seizures to satisfy the request of the surgery board in Detroit. The doctors want to be sure that Ella's seizures are only coming from the left before giving the green light for surgery. It would not do her any good to remove a portion of the left brain if the right side had damage/seizures too. And in the past, some of her infantile spasms seemed to have some right-sided spikes associated with them.

Our 2-year-old cousin Stella Rose had another MRI today. This is a big day! I think the family will get results around 1pm. Pray that the brain cancer is completely gone. She has recently finished up the big-guns chemo, so the doctors are hoping that she will show a huge change on the scans. We believe she will be healed!!

To Little Rock. . .Again

2012-02-13T01:08:00.002-06:00

I should probably be sleeping since both my girls are. But for some reason, I am wide awake.

I am sitting in a mostly dark hospital room, one of the smallest I have ever seen. If memory serves me, this was the room we had when Ella was first diagnosed with infantile spasms almost 3 years ago. How weird.

We are back at Arkansas Children's. Ella is already hooked up to her EEG leads tonight. Originally, we were not supposed to check in until tomorrow afternoon, but with the looming bad weather, they had us come in a day early. We were already planning to drive down tonight and stay in town anyway.

So Ella did not love the leads being attached. At all. She protested more than any previous time I can remember. It was really rough there for a little while. But about midway through, I was able to convince her to let me play her favorite song--Beyonce's Single Ladies--on repeat until they were done. She stopped screaming and snuggled and danced with me, barely noticing any new leads being placed. They tell me it doesn't hurt, but the smell of the adhesive and the sound of the air gun they use to rapidly dry the adhesive are quite overwhelming to my little girl.

It's flu season here at Children's (and everywhere else). Which means the hospital is operating under its flu policy, namely that children under 16 are not allowed to visit. Trying to figure out how to continue providing Corie's sustenance through breastmilk while not leaving Ella in a hospital room by herself nor bringing the baby up to the room was proving to be nearly impossible. We had come to the conclusion that we would need three adults to get the job done--one to stay with the baby, one to stay with Ella, and one to courier milk back and forth and to relieve the other two as needed. Can you say logistical nightmare? So, I asked the doctor if she would be willing to speak on our behalf to our unique circumstances, to see if the higher-ups would allow an exception to the policy and let Corie stay with us. I hate asking for special treatment, but I really didn't like the alternative either. Worst case scenario, they'd say no and we would go with our backup plan. My mom & dad are in town for this reason.

But, thank goodness, they have allowed us to keep Corie here in the room. This means I don't have to pump and my dad can get back home to take care of his appointments, providing that the weather cooperates, that is. My mom will continue to stay here in town with us and help with the girls, getting food, etc.

Pray that we catch lots of seizures this week. Our doctor is not on call until tomorrow morning, and the one that is on did not feel comfortable with Ella being off her seizure medication, so she got her full dose of both tonight. I anticipate that Dr. Luat might discontinue them again when she comes in tomorrow. We shall see.

I'm off to sleep, just as soon as I figure out where to lay down. Ella is currently taking up the middle part of her bed, and Corie's bed is taking up the floor space where this chair I am sitting in would otherwise fold out into a bed. Decisions, decisions.

She is here!

2011-12-28T05:37:00.002-06:00

And already a week old, if you can believe that. This is the best picture I could get this early morning in the low light of our living room, as she and I spend some quality time together while the rest of the house still sleeps.

This is sweet Corie Elise, our fourth child. She was born at 5:40 pm on December 21st. She weighed 9 pounds 15 ounces, and she is by all accounts absolutely, deliciously perfect. My love for her was fierce and immediate, and as with my other children before her I know I would go to any length to protect her from this mad, mad, mad, mad world.

So much of my knowledge and experience with newborns had been packed deep into the recesses of my mind after three years of not having one, but it's all coming back to me now. Every little facial expression and noise--it's all so familiar yet just as endearing as ever. The routines, the sleepless nights, I remember them well now.

Our older children have been a mix of curious to doting. Ella, whose reaction to being unseated as the youngest I most worried about, has been sweet and for the most part gentle in her dealings with Corie. I had envisioned something with more jealousy and/or rough play. She doesn't really understand why she can't touch the baby when she's sleeping, but that is totally manageable. Cooper tells me he loves "our newborn baby", but in typical Cooper fashion has been mostly hands off so far. He helps me when I ask him to bring me things and doesn't seem to mind doing so. And Jackson is over the moon in baby love. It was all I could do to properly take care of Corie in between all the times her oldest brother wanted to hold her those first few days we were home. He too has trouble understanding not to disturb the baby's sleep, but he "just loves her do much" he can hardly help it. I totally can relate. My cup overrunneth.

Cousin Stella Update

2011-11-15T10:25:00.000-06:00

Sometimes, my heart is filled with such heaviness that I can hardly be distracted by anything else. I want life to be fair and sane and predictable, and for as often as it has proven not to be, I still hold out hope for the next time. I want there to be a limit to the suffering any one person must endure, yet I have yet to be witness to it. I think that's what makes Jesus so appealing to me. He never promised this life would be easy; in fact he said quite the opposite: "In this world, you will have trouble." I would have a hard time putting my faith in a god who says otherwise because, often, everything is NOT okay, and refusing to acknowledge how difficult this life can be is intellectually dishonest and leaves people feeling tricked.

That being said, Stella, our 2 year old cousin, is no doubt in a life or death battle against this apparently very aggressive, malignant brain tumor she has. The family received bad news yesterday that the tumor is spreading faster than anyone expected and that the chemotherapy will have to be started sooner than later to give her the best chance for survival. It is risky because she is still recovering from shunt surgery, but they are running out of time.

Stella, whose parents have already endured so much heartache in the loss of their infant daughter Charlotte 4 years ago; Stella, whose 7-year-old brother Davis has had more than his fair share of exposure to death and dying. Why, why this family? Why can't this cup pass from them? No one should have to be strong even once in the face of the uncertainty of whether their child will make it, and now here they are a second time. There are no easy answers. There are no magical words. There are no guaranteed happy endings. But there is still hope. And as Amanda (Stella's mom) says, there is still today. There is still prayer. God is still who he was yesterday, and while I will never understand these things in this life, I will trust & I will pray.

If you'd like to follow her story, Stella's caringbridge page is here: www.caringbridge.org/visit/stellamulhearn

The beginnings of confirmation and a plan going forward

2011-11-08T10:28:00.000-06:00

I think this is our 5th day in the hospital. Time is passing sowly and the days are running together a bit, but Ella has handled being cooped up really well, which is a blessing.

Dr. Luat came to see us this morning with printouts of the EEG from before, during, and after Ella's seizure yesterday. She said that everything she sees indicates that the seizure started on the left side and generalized to both sides shortly after. Then when the seizure was over, there continued to be abnormal spikes on the left side for a while. This correlates with what the PET scan showed--a likely left-sided brain abnormality--which is what we were hoping for because it means that surgery could help her.
The doctor would like to capture at least one more seizure if not two because then we can see a pattern and know for sure that this is typically what her brain does, rather than being an exception to the rule.

It seems we will be here at least one more day to give Ella time to have more seizures. My mom continues to be here with us, which is a huge help since one of us has to stay in the room with her at all times. It is an active job to make sure she doesn't get tangled in her wires or accidentally pull her leads off, let me tell you.

That's what we know so far. Thank you for keeping up with us and for your thoughts and prayers. We miss our boys at home, but I'm glad we're getting some useful information and making the trip worthwhile.

Making progress

2011-11-07T18:41:00.000-06:00

Right after waking up from a long nap this evening, Ella finally had a seizure while hooked up to the video EEG. It was exactly like the ones she's been having since March, which is what needed to happen--a typical seizure while hooked up. I've never been happy to see a seizure before now.

I hope they got lots good information from it. And a bonus was that the nurse was here at the onset & observed the whole thing too.

Our doctor would really like to see at least two typical seizures, so we have at least another to wait for. But her pattern has been to have a second seizure in fairly close succession.

Ella Update

2011-11-07T16:14:00.000-06:00

It was brought to my attention that some might want to follow Ella's progress while in the hospital here (instead of just on Facebook). I have copied my last several status updates so those who want to can be brought up to speed. And going forward, I will do better about posting in both places.

Friday Evening

We made it to Childrens. Ella's all hooked up to the EEG; the actual hook-up was not her favorite thing. The doctor asked us to keep her up until now because sleep deprivation may help trigger seizures. No news yet.

Also, in this huge hospital the chances are crazy slim but we are actually 2 doors down from Stella! We got to see her smiling during a blessed visit from her brother Davis. She is precious.

Saturday morning

Good morning! We're up bright and early today--again because of the doctor's orders. No seizures upon waking. Next opportunity will be nap time probably. Ella is missing her second straight dose of medicines this morning. Perhaps we'll start to see something soon.

Saturday evening

No seizures today. Still just waiting. Ella had a pretty good day. She's handled being tethered to the wires with considerable charm and has been mostly pleasant all day. She got to see her daddy, papa, and brothers on skype, which she loved. We have to keep her up late again tonight. I hope we capture some useful information tomorrow.

Sunday Morning

No seizure again this morning. The attending was just here. She wants the EEG tech to try some flashing lights and have Ella blow on a pinwheel, hoping to trigger some activity. Today begins the third day without medication.

Sunday Evening

Not trying to be a broken record, but still no seizures for Ella. She continues to be a pleasant little girl though and has been running circles around the room.

I went out today for wifi access (children's has the app store blocked) and got some new free apps for mom's iPad so that Ella has a variety of games. Ella is blowing me away with how quickly she is picking up how to use it and what the different games require of her.

Pray we get seizures recorded soon. We are looking forward to being back home.

Speaking of which, Stella got to go home today. Pray for her increasing strength and all her upcoming treatments.

Monday Midday

We are set to stay until at least tomorrow at this point, since there's been no seizures. Dr. L wants to take advantage of this test since we've come all this way and gone to all this trouble, so she thinks we should keep trying. I'm glad that we aren't settling for nothing, but my heart has turned toward home, which makes staying here difficult at the same time.

Ella maintains her pleasant & playful disposition, and I'm very grateful for that.

Odds are in our favor that a seizure should happen soon. Her last one was last Wednesday, and they average around twice a week in frequency.

If you see them, hug my boys for me. I'm missing them like crazy.

On Being Known

2011-10-14T11:05:00.004-05:00

Some of the best conversations with my kids happen with breath intermingling, eyelashes tickling cheeks. I see their people-ness and their goodness, as yet (mostly) unadulterated, and we talk superheroes or God or The Day. We nod in agreement about the rightness of it all. We Know each other in those moments and find belonging there. Even my sweet Ella, with undoubtedly much to say yet a brain that keeps most to herself, likes to get close and pretend to whisper her secrets to me. She too wants to be known.

It is important work to be the confidante of a child. It may not seem like it at times and can get lost in the busyness, but oh the fleeting wonder of it! It is mere seconds before I will hear my middle child ask that I read him a bedtime story for the last time. I know better than to take that for granted, yet selfishness wins out more than I care to confess.

I remember and recommit to being present in these moments so freely given, knowing that just over the horizon is a sea of "fine"s and "nothing"s. And surely those years will have their parental rewards as well; I'm just not ready for them yet.

How we loved

2011-09-09T10:01:00.002-05:00

(as if the title doesn't give it away, I feel I should make a disclaimer that the following post is gushy. You've been warned. ;)

(you might be interested to know what spurred this post. Here is the background.)

I remember it like it was yesterday, the wooing and the breathlessness. The I-can't-wait-even-one-more-minute-to-see-you palpitations.

It surprised me, how I had begun to care for him without knowing it at first. He says he knew how he felt from the beginning. I was clueless about that too, but looking back I see it now.

Much of our courtship was spent apart. I still haven't decided, years later, if that was a blessing or a hardship--probably a mix of both.

We got good at letter writing and too-brief, often poorly connected phone conversations. We longed for more time, more words, less miles between us.

When things got hard for him in South America, I just wanted him home. He made that happen just after Valentine's Day my senior year. Kevin Thiemann made him sit in a huge, uncomfortable box delaying the surprise until our Bible study was over that night, not wanting to derail our group. I can still picture it, and it still makes me smile. Only love would make him stay in that stupid box, for what had to have been an hour and a half or more.

We were engaged soon after that, and then, as it had defined our relationship, we were apart yet again. This time it was me who left. To India. For two months. Again with the letter writing and broken phone calls.

We set The Date right after I got home. Two months out. Enough was enough. We made quick decisions about flowers and cake and dresses and tuxes, longing for the day when we could just be. Together.

We spent the whirlwind of our wedding smiling till our faces hurt, full of joy and excited to start our lives together. We drove to Tulsa that night to catch an early plane the next morning. We must have said, "I can't believe we're married!" at least 20 times a piece in the two hour drive there.

We loved big and strong but not yet deep, that would come over time. And it has. Through career changes and diagnoses and moving and babies, we have clung to each other. Through selfishness and immaturity, through stubbornness and perhaps because of it, we are still here together, clinging and loving.

I loved him then, and I love him now. May God's grace continue to make our youthful promises of forever a reality.

Next Steps (Detroit Day 4)

2011-09-02T18:41:00.000-05:00

Yesterday was a day full of information. We met with Dr. C and his team for quite a while at his office. We looked at scan results, pulled up YouTube videos of ella's past and current seizures, answered lots of seemingly unconnected questions, and basically had our minds blown.

I'll try to summarize but there was so much to digest and much of that is difficult to explain. Here goes nothing.

I tried to go in with no preconceived notions, but as it turned out I couldn't help it. I went in with the assumption that Ella's development level would be too advanced to be considered a surgical candidate. I was also unsure that a single focus (one bad part on her brain where the seizures are likely coming from) could be found since her MRI was clear.

I was wrong on both counts.

Ella's development, especially her speech being at the level of (in my layman's estimate) that of roughly a 12-month-old, is concerning to Dr. C. He believes that not only will she NOT eventually catch up (as many practitioners have told us) but that the gap will continue to widen between her and her typical peers. I had become discouraged with the slow pace with which she acquires new words and how she is still not putting phrases together, so I guess it's not entirely a surprise that she may not do it on her own after all, but it's still disappointing.

I'll get back to the speech thing in a minute.

The PET scan (which measures brain activity) that we had done earlier this week showed that Ella likely does have a seizure focus, perhaps at a microscopic level that would not show up on MRI. And instead of being on the right (like the original MRI suggested) it's on the left; Dr. C believes Ella has a cortical dysplasia (bad spot) in the temporal lobe that is affecting Ella's speech center and that what speech she does have is coming from her right brain (which is not naturally what occurs and could therefore account for her great delay). He also thinks that she might have some abnormality in her left frontal lobe. This makes more sense to me than any CD being on the right side because Ella has always had more right-sided involvement during her seizures which would suggest a left-sided problem.

Interestingly, Dr. C thinks that Ella's left-handedness is pathological. That she was born to be right-handed but because the left brain is damaged she switched to her (right brain controlled) left hand. This theory is complicated by the fact that I am left-handed, and there is some left-handedness on Chris' side of the family too, so it COULD be inherited but the doc says it's still suspicious for a damaged left brain.

But I digress.

All that to say that preliminarily Dr. C thinks that Ella's best chance of a good outcome (which he defines as not just seizure control but allowing the child to catch up to her peers' development) is surgery. Specifically surgery that removes the damaged parts of Ella's brain--up to almost all of her left hemisphere (leaving the motor cortex intact to prevent weakness on her right side) if necessary.

Before we can go forward with surgery, which he believes should happen sooner than later to protect Ella's intellect, there's a few things we need to do first. Namely, we need to make sure that Ella's right brain is normal. It won't do her any good to remove some of the left brain if the right brain cannot compensate. Dr. C believes that Ella is too high functioning to have bilateral damage. I happen to agree with him too. But to make sure that the seizures are coming from the left side only, we need to get an actual seizure on EEG. He recommends that we take her off her meds cold turkey right before hooking her up and keep the test going until she seizes. We will probably do this at Ark. Children's within the next few weeks. We did have an EEG back in May or June that showed left-sided spikes, which at the time didn't make sense but now may be the evidence we need. Dr. C wants the squiggles from that test (his words), not just the written report. I'm not sure how to get that, but again he wants it within the next few weeks.

Once we get these last bits together, and as long as nothing contradicts his preliminary determination of left sided cortical dysplasia, Dr. C will present Ella's case before a board of 20 neurologists and epileptologists who will make the final determination as to whether Ella is a candidate for surgery.

This will likely happen pretty quickly. Her age is fast approaching three years (an unwritten marker for when damage from seizures starts to become irreversible) and I am only getting more pregnant by the day as well which would make it more difficult/less advisable that I travel.

I'll save the specifics of surgery for another post, as this is already quite lengthy and we haven't really gotten all the specifics anyway--not wanting to put the cart before the horse so to speak.

As to whether we will give the green light for surgery should Ella be approved, the short answer is yes we probably would. I'll save the long answer for that for another time too.

Thank you for following along with us, for your prayers, your encouragement. We'll continue to lean on your support as we go forward.

Detroit day 2

2011-08-30T11:34:00.001-05:00

We are waiting, waiting, waiting today. After a long morning, Ella, as far as we know, has finished with her PET scan and should be somewhere in the process of her MRI. Soon she will go to recovery and begin waking up from anesthesia. Where we can then be reunited with her.

I learned today that because I am pregnant, I am not able to be near Ella for the 12 hour period following the injection of the radioactive glucose used during the PET scan. Which is more than a little disappointing. I can sneak a hug or kiss in briefly and infrequently and that is all until late tonight (essentially tomorrow morning because of her bedtime). It means Chris will be on diaper and bedtime duty for the rest of the day, so I'm even more glad that he made the trip with us.

The overnight EEG finished around 8 this morning without us being able to catch any noticeable seizures. It was a long, fitful night for Ella wherein she slept only 6 of her usual 12 hours. I slept for a few hours at the beginning of the night, while Chris watched her and then I stayed up from about 3 a.m. on while Chris dozed. So, really none of us got much sleep.

The EEG tech came this morning and had to reattach many leads that had nearly come loose in the night, while also needing to rewrap Ella's head entirely. This is because the PET scan includes a simple EEG as well. It's really interesting to hear the explanation of the science involved in what they are testing for. I'll spare you the geeky nurse stuff, but I am really hopeful that lots of useful information will be obtained.

After recovery, we'll drive back to my sister's house in Ann Arbor and take it nice and easy tonight into tomorrow. We are spending some time with my dad's brother & his family tomorrow night, and then we will head back to Detroit on Thursday to meet with the doctor and review Ella's results.

We got to see my cousin on my mom's side last night, too, which was a nice treat to break up the monotony of sitting around in a hospital room for hours on end. So good to see you, Kelsey!

To Detroit

2011-08-29T21:04:00.000-05:00

We are in Detroit this week with Ella, seeing a child neurosurgeon who is a renowned expert on epilepsy and infantile spasms. We've known about him from the beginning of Ella's diagnosis and have exchanged emails with him in the past. We always thought we might head this way if it became clear that seizures were persistent even through many trials of medication. While some have had longer med trial periods and have "failed" more meds than Ella has before making this trip, we felt it was time to see if there is anything else we could be doing for her. This includes surgery, which would not happen on this trip nor would we make such a decision without ample analysis of the pros and cons. At the very least, we want to seek more information about why these seizures are occurring, and hope to gain insight about where we go from here. We don't want to get years down the road, still battling seizures, and look back and wonder if there was more or something different we could have done.

Today, Ella is hooked up to an EEG and video monitoring. She has been so good to lay in bed most of the day, which is not her normal m.o., and this was by far the least traumatizing hook-up experience we've had, thanks to the tender care from a gentle giant named Lomar. Chris & I are supposed to take turns watching her throughout the night and record any suspected events. We don't typically pray for seizures, but today we have prayed for that very thing. The more information we have about what happens in her brain during a seizure, the better chance we have of finding the proper treatment for her. (Of course realizing that seizure medications lose effectiveness over time and that we may not find the end all be all treatment, we hope to find at least something that will stop the seizures in the short term.)

Tomorrow, Ella will be sedated for an MRI and PET scan. The MRI machine here has a higher resolution than the one in Little Rock, and she's never had a PET scan before. During the PET scan, she will continue on EEG so that the information they obtain can be overlapped to give simultaneous comparison of brain function & activity.

On Thursday, we will see Dr. C who will do a full exam and will go over the results of all the tests with us. We are looking forward to finally meeting him in person.

I will post updates when we know more, providing that my phone will stay charged, as that is what I am using to tap out these entries.

We miss our boys and send tons of hugs and kisses back home.

Girls

2011-08-15T01:19:00.002-05:00

There was a time not too long ago when I was terribly outnumbered in my own house. My husband, two sons, and heck even a boy dog were my posse. Then we had Ella, and a bit of pink and purple and wisps of curls entered my male-dominated life. I didn't even know what I was missing, but our family felt all the more balanced and complete with our sweet girl in it. We've added a female dog for good measure since that time as well.

Content with the thought of either a boy or girl, I entered the ultrasound room last week with great anticipation. What a joy to learn that we would be having another girl! The boys were there with us and learned the news at the same time. Though they were a little distracting and grew tired of the process, I'm really glad we were able to bring them.

While we are on the subject of girls, our daughter gave us quite a scare last night. Ella developed a very high fever in a very short time and began seizing. I was already at work, and Chris was home alone with the kids, but in no time, Chris' mom had come over to watch the boys, my coworkers were able to take over the care of my patients, and I met Chris downstairs in the ER. We were there a really long time, both because it was very busy and because they were trying to find the source of Ella's illness. Everything came back negative so it is assumed to be viral, and today she has remained seizure and fever-free, so that's good. We'll probably go see the pediatrician tomorrow just for follow up.

In other Ella news, I discovered tonight as I was trying to get everyone's things organized for school tomorrow a note from Ella's physical therapist recommending she be fitted for orthotics. While I'm not surprised by this, I am a little sad. Once she gets them, friends and strangers alike will immediately see her as "different," whereas up to this point she has been able to blend in pretty well. I guess I won't have to explain anymore to people why she doesn't readily answer their questions, which might be a little easier for me. I'm sure they'll assume not talking goes right along with "walking funny." I just don't want her to be treated differently. She's very smart and though she doesn't talk much, she is very good at reading people and I worry that she will notice any change. And she primarily learns by observing and mimicking others, so it'd be a shame if her opportunities to interact with people were lessened by these devices making her seem less approachable. Also, I have a feeling that Ella will not be very keen on wearing them, so it may be a battle to keep her happy in the darn things. As with everything else though, I'm sure we will adapt and make the most of it.

And now I really must be off to bed. Tomorrow is Cooper's first day of school, his last year before kindergarten! Jackson will start 1st grade on Wednesday. Where did the summer go?

Normal

2011-07-19T09:52:00.001-05:00

When you enter the world of special needs parenting, words like "normal" and "typical" take on a whole new, emotionally charged level of meaning.

You find yourself thinking and saying things like, "this is our new normal" and "she's not typically progressing, but she is making progress in her own time." You veer off the path you thought you were on and try to make your way on a less-traveled, perhaps bumpier, certainly less predictable path.

So when doctors tell you things like "your daughter's MRI is normal." You immediately filter it; it's a knee-jerk reaction, part defense mechanism, part acceptance. "You mean 'normal' for her, right?" Normal as compared to the chaos we thought we were gonna see. Surely not normal normal.

But yeah, against all expectations, Ella's MRI is indeed normal normal. No polymicrogyria in the right frontal lobe or anywhere else for that matter, and no other cortical displasia or various abnormalities either. As confirmed by a whole team of child neurologists even.

Normal.

I think I could get used to that.

So now, we are revisiting old metabolic labs and perhaps Dr. B will order additional ones. Because there may still be a cause we have not found yet, a cause we stopped looking for when polymicrogyria became Ella's label.

It's strange, new territory. We knew what we were facing before, and that knowledge had, unbeknownst to us, become somewhat of a safety net. Now that we don't have it, I feel less secure for the moment. If we never find a cause, I'm sure I'll adjust, in time, to this new normal. But for now, I'd rather know the name of the thing that makes my daughter have global delays and seize multiple times a month. And I will keep searching for it as long as it makes sense to do so.

Ella Update

2011-07-11T01:10:00.003-05:00

It's been a while since I wrote about Ella's progress. It's probably time to do so.

First of all, she's amazing. Seriously. I am blown away by how far she has come. There were days early on in the diagnosis of infantile spasms where it was unclear whether she would ever walk or talk, interact with us, be aware of her surroundings, and so on. She has accomplished all that and more in the two years since being diagnosed. Sometimes we just laugh when she does something new because it's just such a joy to see. Yes, she is still delayed but is making gains all the time. I told somebody the other day that Ella is not on "the" curve, but she's on her own curve and is still trending upward. I think I'll use that explanation from now on--it's the next best thing to observing her for yourself.

Being around Ella is one of the great joys of my life. I think I appreciate every little thing more because I take nothing for granted. That's not to say that she doesn't wear me out because sometimes she does, and the girl can throw a killer fit which is less than endearing, but on the whole there is much to smile about.

The spasms are a distant memory now. Ella passed the two-year mark of spasms-cessation a couple of weeks ago. Two years is a magical number in the epilepsy world (much like cancer). It makes me breathe a little easier to know that both her chronological age and the time since her last spasm combine to make return of the IS very unlikely.

But there's still work to be done. Since March, Ella has been having a new type of seizure, complex partials. Always within about ten minutes of waking, she gets a funny look on her face, breathes deeper and makes a distinct noise with it (what often tips me off when all else too subtle, i.e. when she's sitting in her carseat), often loses her balance if she's standing or sitting, and occasionally kicks one leg repetitively. The seizures only last for several moments, perhaps up to a minute or two, and when she comes out of them it takes her a little while to recover--which I define as being able to respond with words to my questions.

Over the course of the last four months, the frequency of these seizures has varied between daily to 15 days apart. We've tried increases in her doses of keppra, a second medication which failed (trileptal-- didn't seem to improve things and had undesirable side effects of extreme drowsiness and drooling), and we are now going to add lamictal as soon as the pharmacy gets everything approved with our insurance. We've also had her in for two more EEGs, the last of which was puzzling enough with it's change from abnormal spikes on the right (coinciding with her malformation) to showing spikes only on the left that it bought her a trip to Children's for another MRI, which she had on Thursday.

Here's the kicker: the scan this time around was normal. As in, no visible polymicrogyria in the right frontal lobe or anywhere else. Normal! I was expecting almost anything but that. Dr. B was puzzled too. It could mean any number of things. It could be that a miraculous healing has taken place, and we certainly make room for that; PMG (which was seen on her MRI at 5 months of age) doesn't just go away. But it could also mean that either the first scan or the most recent one was interpreted incorrectly. To that end, Dr. B is going to present both scans to the entire neuro team at Children's on Thursday to see if they can come to a consensus. We should know something by Friday, one way or the other. Ultimately, whether she has a malformed brain or not, SOMEthing is causing her to seize right now and it is most likely not just her past history of spasms. For that reason, I'd almost be more comfortable with the PMG still being there--as Hamlet put it best we'd "rather bear those ills we have than fly to others that we know not of."

To sum up: no spasms for two plus years, new seizures we're still trying to control, surprising MRI results awaiting further clarification, and amazing developmental progress.

So there ya go. And if you made it this far, here's a little photographic reward for you:

Three Questions with Shaun Groves

2011-07-06T09:32:00.001-05:00

Shaun Groves is one of my favorite Christian artists. He is a self-described "soft rock star," tongue fully in cheek; his songs are catchy without being kitchy, with deep and meaningful lyrics.

But more than his music, I like his mission: Shaun travels the country singing and storytelling for the ministry of Compassion International, casting vision in caring for the global poor through child sponsorship. He also travels outside the country a few times a year, leading groups of bloggers to tell the stories of the children at Compassion's child development centers. The purpose being to encourage people like you and me to give out of our excess to bless the less fortunate--that we might both benefit.

Yesterday, I had the opportunity to ask Shaun three questions about his latest music project.

Me: what is the meaning behind the title of your latest album, Third World Symphony?

Shaun: A lot of people don't like the term "third world." It relegates millions of people to second class status...or third class, I guess. For many more the words conjure up images of starving children, flies on their faces, buzzards overhead. And I suppose I was in both these groups once. But today, after years of spending time in the third world, or developing world, I don't think this way at all. The developing world is packed with wise, beautiful, hopeful, brothers and sisters. People who've taught me, challenged me, loved me, served me, helped me, God's used to change me. This album is an attempt to connect the first world and the third world for the betterment of both - to share the gifts of these third worlders with my listeners so that they too are changed and inspired ad more alive. And I hope, in the process, the label "third world" is redeemed and becomes something beautiful to many more too.

Me: What impact do you hope its release will have for the ministry of Compassion International & beyond?

Shaun: I hope that releasing new music will allow me more opportunities to speak and sing on behalf of Compassion's children. I'm in eighty cities each year and so if this album causes just ten more people to come to every city to hear me sing and speak, well then that means 800 more people every year who could go out into the world living more simply, more generously and gratefully - partnering with God through Compassion and countless other ministries to take the gospel in word and deed to those in need of it.

Me: From reading your blog, I understand you and your wife are in the process of international adoption. Has it changed how you view yourself and your relationship with the Father?

Shaun: It hasn't. That change happened for me in college when I worked at a children's home in Waco, Texas. It was there that Romans came alive to me - there's a Spirit in us that cries Abba father, it says. I taught these verses to the children at the home and it was one of the many times I felt I got more instruction from the lesson than my students. Teaching orphans that God is their father - walking away understanding for the first time a bit of what it means that I am an orphan adopted into the family of God. What a beautiful metaphor adoption is.

-------------------------------------
As you can tell, Shaun is the real deal, and I'm excited to hear his new music.

If you want to hear it too, You can go here to get a preview.

And you can pre-order Third World Symphony, which releases August 30th, here.

Frequently Asked Questions

2011-05-19T09:10:00.002-05:00

Being pregnant with a fourth child is a funny thing. In many instances, people really don't know what to say to me. I guess I understand; four is a pretty big number for our generation, but it's not like Dugger-big or even Kate-plus-8-big.

But it does make people forget themselves a bit and ask some interesting questions, mostly people who don't know me very well, that is. So this is my attempt to answer some of the questions that keep cropping up:

1. Were you trying?
If you are asking in a roundabout way if we were using protection or birth control of some sort, that frankly is none of your business. I thought we were "done." God apparently had other plans for us. That's all I'm gonna say about that.

2. What are you gonna do with another baby?
Well, I'm just shooting from the hip here, but I assume we'll clothe, feed, diaper, and love it just as we did with our other children.

3. You do know how this happens, right?
I have so many snarky responses to this I just might implode trying to get them all out. I get that you're trying to be funny, but I really don't think you realize how big of a jerk you sound like right now. We're not stupid, we know where babies come from; do you really want me to answer this??

4. Better you than me.
Not a question obviously, but a response I've gotten more than once. Um, thanks? I agree?

5. Let me give you an "inservice" about all the sterilization methods out there that you may not know about. (really. I couldn't make up the subject of this conversation if I tried)
Well, i actually learned a few things, so thanks for that. I'll probably go ahead and have this baby, and then…oh wait, it's again really none of your business.

Children are a blessing, even and perhaps especially fourth children. But I think it's easy to forget that sometimes, or it's popular to make light of that truth & instead highlight on all the reasons to complain and feel burdened by them. I don't want to focus on that, and I'd love if others would join me in rejoicing in this (fourth) gift from God.

My April

2011-05-10T02:24:00.002-05:00

Let's recap my crazy April: it started off normal enough, but about midway through, things got a little hairy.

Kicking things off, my husband spent 3 days in the ICU a few weeks ago, due to complications of his diabetes. He's okay now, but it was a long week for sure. By the end of that week, the heavy rains started and didn't let up all weekend. So by Monday afternoon, wouldn't you know our rental property in Johnson flooded, water up to 3 feet in both units. Thankfully, we had flood insurance after that last near flood we lived through three years ago. Within two days of the flood, and very much mired in stress about finances & rebuilding & estimates, I realized I was "late" and decided to take a pregnancy test.

It came back like this.

I don't think I've ever been more surprised in my life. No exaggeration. Shocked would not even be an overstatement.

I've been trying to wrap my brain around the number four ever since. It will all come together, I'm sure. But wow! I'm totally leaning in on God on this one.

I am excited and very much look forward to meeting our new baby. S/he'll be here sometime in late December to early January, close to Ella's third birthday and a couple of months before the boys' 7th & 5th birthdays. And then we'll be six!

May, I need you to be nice and easy, k? 'Cause April was a doozy.

Tip of the Day

2011-04-07T14:29:00.001-05:00

Diapers boxes can be hard to get into. Especially if you only have one hand to spare because you've already got your child up on the changing table.

Here's what I do. I turn them over and open them upside down. Whereas there is packing tape on

the top which likely will require scissors, there's only glue securing the bottom flaps. Glue that easily gives way with a little bit of pulling. This is true of every brand I've seen.

I hold the box steady with my foot while using one hand to to pull up one flap and then the other.

Easy peasy.

You're welcome.

Reflecting

2011-04-06T10:15:00.001-05:00

I used to come here fairly regularly and with great joy to process my thoughts, to share myself and our funny things and ask for prayer, but lately, if I think about the blog at all it is with a twinge of regret and guilt at not being able to apply myself to yet another of my responsibilities.

It's too bad that this is how I feel about this space, too, because in so many ways we are the sum of our experiences, and this more than any other medium has allowed me to catalog them for our family. Of course, it isn't only about them, as you well know if you've visited here more than once or twice.

I don't know what it will look like, but I do wish to continue here. Obviously I'm not as frequent of a poster as I once was, but I will keep writing. Even after all this time, I have yet to really find the "voice" for this blog. I am a wife, a mother, a nurse, and, more recently, a non-profit intern, and it's hard to know which hat to put on when I sit down to type. As is it is with my life, but I imagine it can be a little frenetic to jump from topic to topic here, and I do keep that in mind when I write. More than anything else, I want to be authentic. I am still learning, still finding myself, still trying to figure out what the meaning of All This is. Reading back through the archives, I see the transitions. I am glad for them, as it is evidence of my moving closer to who I am purposed to be by the Father. But it gives me pause at times to share things in real time, knowing I will look back and feel foolish about the Me I once was. I don't mind it too much, though, and perhaps others will benefit from these little sermons in the trenches. So I will press on.

Thank you for reading here. For your comments. For your prayers. For sharing life with me. I am a better person for having lived out loud in this small way, and I am grateful for it.

Until next time,
Megan

6!!!

2011-03-17T11:31:00.001-06:00

(This was supposed to go up yesterday, but I ended up getting called in to work. Sorry, buddy.)
Look at you, I can't believe it. I blinked and you turned into a young man. Six years old! How could that be possible? I remember the day you were born with intricate detail; how could that have been so long ago? You were my cute little guinea pig, how I got my mommy legs. Thanks for helping me learn how to take care of you.

I have really enjoyed this past year with you. Especially your quest for knowledge. I have watched in awe as you have begun to read. I am amazed at your progress.

I love your questions. So many questions. Sometimes, I really have to think about what you're asking me. And sometimes, I still don't know the answer, like how wind energy is turned into electricity. I mean I get the basic idea, but how it it's stored and then put back out there, well, I just don't know. But with this, like the question about why chocolate is bad for dogs last week, you remind me that "you can check your Google, Mom."

I love how you care for people. You are so good at seeing needs and trying to meet them, especially for me and your sister--you are particularly sweet on the girls in your life. This morning you told me, "If Ella cries in the van, I'm going to give her my blanket." That just melts me, sweet boy. Occasionally you try to help your brother, and he doesn't always go along, but don't stop trying, okay? He may not realize it, but I think he appreciates you very much.

I love that you like to talk to everyone you meet. Your confidence and fearlessness is admirable. And not just talk to them, but tell them about your day and introduce your brother and sister even. You want to be known.

I appreciate your naivete, and I mean that in a good way. The world is a magical, wonderful place in your eyes; I hope you can hold on to that for as long as possible.

I love that you trust me. Like when I tell you that I'll bring a sack lunch to you at school. You know that I'm going to bring it; even if I'm running late, you go to the cafeteria and sit patiently for me instead of grabbing a tray. It's a lesson for all of us really.

I love how funny you are. You are so silly and tickly and are always looking for ways to make us laugh.

I love how you told Ms. S. at school that you were going to marry her when you grow up since she doesn't have a husband. See, you're always caring for people. You love completely and extravagantly.

I love you, Jackson. Daddy and I are so proud of you. Keep working and loving and laughing, and you will go far.

4!!

2011-03-14T10:45:00.001-06:00

Happy Birthday, to my middlest! You are four years old today. I can hardly believe it.

I love your little smile, like you know what's up and it's a secret to be kept from everyone else.

I love that you like to punch and kick and rough and tumble, but you still ask for frequent hugs from Mommy.

I love that you are a morning person, because even though I am not, I have to be up anyway and it might as well be pleasant. You make it so.

I love your feet. Love. them. And this from a girl who pretty much hates feet otherwise.

I love your face too. I love how your nose curves down ever so slightly before turning up again.

I love that you are coming into your own as a big brother to your sister. I know that it has been difficult and that it seems she mostly just takes your stuff, but she loves you very much and is so sweet, and I think you're beginning to see that now.

I love how you say things. Things like, "Where are dee? (they)." I'm not too quick to correct you on this particular favorite of mine. Oh, I guess I will someday, but I kinda like how it keeps you from growing up too fast.

I love that you want to snuggle. Still. Even if it calls you out of bed at 1 a.m. to stand next to mine and ask, "Mom, can I sleep with you?" I usually acquiesce for a moment or two, but you are typically too active for me to let you stay very long--my own childhood sleeping habits coming home to roost.

I love when you ask if you are handsome in your outfit and then you nod in agreement when I tell you that you are. Sometimes you throw a little "yeah" in there even.

I love that you say, "Happy Birthday to you too, Mom."

I am so glad to be your mommy. I hope you have an awesome day at school!

We Who are Ordinary

2011-02-03T22:32:00.004-06:00

If you were someone who studied trends in causes of the Christian church throughout history, you might have all kinds of statistics pointing to "the orphan" and "orphan care" as among the more popular topics today. That is my assumption anyway; since it's likely that neither you nor anyone else I personally know actually studies such trends, I'm only left to guess. Perhaps I'll google it later, but probably not.

Really though, everywhere I look and read, Christians are talking about orphans and their care. And somewhere along the way I finally started paying attention. A girl can only hear James 1:27 so many times before something clicks. Orphans, huh.

My attention gave way to concern. And that concern began to give way to action. Slowly. And almost so subtly that I didn't even notice it at first. Had I noticed, I might have tried to do something to excuse myself from this thing called the orphan care movement.

It's quite easy for me to count myself out from getting involved. I have limited resources, I am currently raising three young children, I have many obligations right here where I am, and so on. This might sound familiar to many of you.

On top of all that, just look at how ordinary I am. I grew up in a Christian home and came to know Jesus in a very non-dramatic fashion. I married a good man who provides enough for us to live here in our average home in the middle of America. We are two of many members in a big ol' church, and we are never called on to preach or anything like that. We don't even lead a small group. There's no way that I have as much to offer as, say, someone who already runs a nonprofit for this sort of thing.

I feel a bit like Moses, who, when God called him to lead His people to the promised land, thought his slowness of speech and tongue would disqualify him from service. "Oh Lord, please send someone else to do it," he said (see Exodus 3:1-4:11).

However plain and ordinary we may feel though, God, who is extraordinary, does seek to use all of us who are willing to do His work. And He calls us to do this work alongside of Him; He gives us the words to say, and in Moses' case even the ability to say them (Exodus 4:12).

When considering God's call to care for the orphan, we must be careful to understand what that is versus what it is not. Sure, some will respond to that call by selling all that they own and moving to a remote African village to run an orphanage. Others who see the great need may feel led to international adoption. I think it would be wise if we all at least prayerfully consider both these types of involvement. But many who do not feel such a specific call to do either of these things (I'll leave it between you and the Lord to determine what a "specific call" might mean for you) excuse themselves entirely from the effort of orphan care.

This is not how it should be. No one can do everything, but we all can do something. There are many other ways to support the cause of the orphan such as direct support through child sponsorship, foster parenting in your own communities, parenting support, community development, special needs ministries, HIV/AIDS prevention, and others. With technology today, you can be an orphan advocate without ever leaving your house.

Ask yourself this question: "How can I personally get involved in caring for the orphan?" and let God move you into action. But don't be surprised when through the natural course of your obedience, even though you may start in your living room, you end up going to the ends of the earth for the least of these.

------------------------------------------------------------------------

All these topics and more will be discussed at the upcoming !C//Orphan Conference in NW Arkansas on February 25th-26th, led by some amazing "thinkers and practitioners" in orphan care. I will be attending because I believe the least of these are central to God's heart, and I want to be about what He is about. Trends may come and go, but God does not change. Won't you join me? We can be ordinary together.

Updates (a.k.a. yet another post for the grandparents)

2011-01-26T15:02:00.000-06:00

It's been a long time since I typed anything on a real keyboard. At a desk and everything. See, our computer died many months ago, and we've yet to replace it. We don't miss it that much, since we have our smart phones, but tax season is upon us and I've got pictures and receipts to organize and so on, so it would be nice to have a full-blown PC. We had graciously been granted the use of Chris' mom's laptop for a while, but when we got them a wireless router, it was time to return it. However, Chris' aunt had an old PC that they weren't using any more and brought it over a few weeks ago. It sat through the busy-ness of getting back to school and snow days and working multiple jobs, but one afternoon last week, I tried to turn it on. It powered up, but, for some reason, I couldn't get a keyboard to work with it. After trying for quite a while, frustrated, I asked Chris to look at it. Later that night, he turned it off and turned it back on (why didn't I think of that? computer troubleshooting 101!), and just like that the keyboard worked. Only, he didn't tell me about it until I asked a few days later. Today, I sat down to do something on it, but then there were updates and new programs to install and a new user account to configure, and just when I finally got this borrowed computer really up and running, it's now just about time to go get the kids. Ah, such is life.

In general, though, life is good. Ella's doing awesome in her new big girl class at school. They tell me she is very laid back and agreeable there; I guess she must store up all her fits for when she's with her momma :). Cooper has really come into his own personality. While much of his third year has been all about himself, lately we've seen a real sense of empathy developing in him. It is very endearing. He now says unprompted things like, "Mom, I like your house," and kisses my boo-boos and tells me he's sorry about them, even when they are not his fault. Jackson seems to be thriving in the structured environment of kindergarten. He scored E's in math (again) and language (for the first time) on his report card and continued to be satisfactory in music and PE. He tries to read every written word he encounters on signs or on the TV, and he is blowing me away with how quickly it has come to him.

We've managed through the hectic schedules of three different schools and four jobs between the two adults (three of them mine) to be more regular attendees at our church for the past couple months, which has been good for everyone; the kids now expect to go to church every Sunday and know other children in their classes. I've begun to do a little more volunteering in my free time. I am trying to be purposeful in choosing activities that fit my passions while not overextending myself in the process; it is proving difficult to find that balance, as you might imagine. I want to be involved in a work with a local impact and separately in something with a global outreach, but I think I am getting closer to figuring out what that might look like.

And with that, I'm off to get the kiddos. I hope the new year is treating you well. Until next time!

On the eve of your 2nd birthday

2011-01-14T15:48:00.001-06:00

Tomorrow, Ella Claire, you will be two years old. Two! In many ways, it does not seem like that much time has passed. In others, whole lifetimes have been lived.

You are thriving, baby girl. (Even though you are almost 2, I am not ready to give up this nickname for you yet. I may even take a page out of your Grandma Mildred's playbook and call you that right up until you have children of your own, as she did with me.) You amaze me with all of your progress. I think about where you were even a year ago, and I am nearly overcome with emotion. And just a short time before that, we were a family on the brink as we tried to wrap our brains around diagnoses we'd never heard of before and potential outcomes we never asked for, while you were swallowed up by the seizure monster.

Now, just look at ya! Walking, talking, interacting with us--seizures now 18 months gone (though still one thought away for me). It's better than we could have ever imagined. We are so grateful to God for bringing us through. We will never forget where we have been and our friends who are still battling, all the while acknowledging that we aren't guaranteed tomorrow. We will never stop fighting and advocating for children with epilepsy, in your honor. This is your legacy, sweetheart. You have made us better parents, more appreciative of even the small things, taking nothing for granted, enjoying the moments we're given.

Thumbs are yum

2011-01-13T15:01:00.001-06:00

Decamarating for the Holidays

2010-12-22T12:17:00.000-06:00

I am not much of a decorator. I know what I like and appreciate others' efforts, but I myself stall out quickly when I try to create; I don't know my personal "style", I have no budget for it even if I did, and I have three small kids who might break things at any time.

So I just don't.

I literally have four pictures hanging on the walls right now, seven if you count the kids' cross-stitched birth announcements.

And the mantle. Don't even get me started on how neglected it has been since we moved here over two years ago. For the most part, it has served as place to put things out of the kids' reach. Up until we had a camera crew come to our house this past Spring, that is. At that time, Mom came to help make our house presentable, and we therefore had her borrowed Spring-like things up there well into Fall. And then she gave us some Fall decorations for our wedding anniversary. Which got us through Thanksgiving.

Recently the kids were asking when I would be decorating the inside of the house for Christmas. I really didn't want to do much because again no budget, no vision, etc. But we couldn't very well keep the Fall and Halloween items up there, now could we? So I thought, "surely I can get a pretty garland with some lights and a few other items without spending too much money and without overstretching my emaciated decorating muscles."

So I did. And while not nearly as much fits on a mantle with a garland, it turns out, I was able to come up with something understated that makes me happy and met the kids" requirements for making it Christmas-y up in here. I think I just might be on a roll.

Now, what do people do with their mantles after Christmas?

Book Review--Love and Respect for a Lifetime

2010-12-10T11:44:00.000-06:00

The front jacket of Dr. Emerson Eggerichs's Love and Respect for a Lifetime summarizes his new book's central ideas succinctly: "Women absolutely need love. Men absolutely need respect. It's as simple and as complicated as that."

Common sense and Biblical truth intertwine in this practical guide to marital prosperity and longevity. Though written as a follow-up to Dr. Eggerichs's best-selling Love & Respect, this latest book can stand on its own. All together, it is a quick read, easily tackled in one sitting. On the other hand, its layout allows for one-to-two-pages-at-a-time, easily digestible read like you would find in a daily devotional.

In addition to quick wisdom and Bible verses, the author also employs hypothetical examples of couples in real life situations. This convention does a lot to advance the points that the author is trying to make and allows the reader to think through how he or she would respond respond in similar circumstances.

As Dr. Eggerichs fleshes out his central tenets of love being the primary desire of wives while respect is utmost for husbands, I found myself not able to disagree in my own relationship, yet at the same time wondering how it could be universally true for all marriages and all spouses. "Simple and complicated" indeed. I found myself wanting to go deeper, but almost too soon the book came to an end.

This book would be a great gift for newlyweds and would also serve as a marital tune-up to anyone a bit farther down the matrimonial path.

Booksneeze.com provided me with a complimentary copy of this book in order for me to review it.

To Lowell and back

2010-12-05T22:26:00.003-06:00

Yesterday, we rode the Christmas train with Santa. The boys were very excited, and i think they enjoyed themselves. Cooper wore his PJs "like they do in Polar Express", and Jackson asked a ton of questions. Meanwhile, Ella threw her cup down a million times and cried most of the trip--which was a big bummer. I have no idea why she was so upset, but none of my usual efforts made her happy. In hindsight, I guess she might have done better to stay with the grandparents, but I didn't want to exclude her at the time. At least we got a family picture with Santa--though it is on the big camera so I don't have a way to share it with you right now. You'll just have to take my word for it. :)

I'm not sure if we'll do it again next year, but I'm glad we had a chance to make some memories together. What are some of your family holiday traditions?

My lovies

2010-11-21T16:11:00.002-06:00

Even when sad, she can still take the time to look sweet for the camera.

I never thought I'd be one of those moms who wanted my kids to be matchy-matchy, but, after this picture, I think I'm sold on it. I mean, just look at the side hug action!

And, while I realize the following picture is not of my children, because it makes me smile, I thought I'd share it too. I love bundling up to watch the Hogs. Chris loves to make funny faces while bundled up to watch the Hogs. :)

Dear Pediatricians

2010-11-19T10:37:00.005-06:00

It is epilepsy awareness month. Right away, it brings to mind the delay in treatment Ella endured because the doctors were hesitant to believe that the cause of her strange, repetitive movements could be something as rare as infantile spasms epilepsy. And I think about so many of our IS brothers and sisters have similar stories of being dismissed or being told that it's "just reflux" or "an exaggerated startle reflex." To our local pediatrician's credit, he did try to tell the on-call neurologist at the Children's Hospital that he suspected infantile spasms in our daughter's case so that she could be admitted, only to be told to schedule Ella for outpatient follow-up in a few weeks (instead of dealing with it immediately as should always be the protocol with IS). I am thankful that Ella's outcome has been positive in spite of this, and were it not, I feel this delay in treatment would have been the cause.

I wrote the following open letter because of our experience as well as our many friends' experiences with accessing healthcare for their children. Feel free to repost.

________________________________________________

Dear Pediatricians,

Many of you are very good at what you do. The sheer amount of information of which you must have a working knowledge in order to do your job is astounding. Often you've given up time with your own families to take care of the precious ones in ours. You advise, you intervene, you advocate, you heal, you immunize--all for the sake of children. And you are on the frontlines--an access point to this country's healthcare system, and usually the first to address any concerns we have about our children. And we are grateful.

We parents can be a mixed blessing, no doubt. A minority among us do not take care of our children as we should, and you are left worrying and hoping that the children will somehow thrive despite their circumstances. A vast majority among us, however, want the best for our children and do everything we can to keep them safe and healthy. It follows that we worry about every little atypical thing. Often the worry is unnecessary, and parental minds simply need to be put at ease. After all, the probability that "something is wrong" is quite small.

But sometimes, we are right. And sometimes our parental guts "just know" that something serious is not as it should be with our children. Please make room for this possibility and consider all the facts before dismissing our concerns. As the parent of a child with an "ultra rare" diagnosis, I can tell you first hand that these things do happen; how can you be so sure it's not the case with the child in front of you?

Please never stop seeking educational opportunities. Familiarize yourselves with the signs and symptoms of the rarest of the rare disorders, even if the numbers are slim to none that you will ever see them in your practice. Be willing to admit that something is outside your area of expertise; do not let your pride get in the way of what is best for our children. Treat our children as you would treat your own, and help us get the answers we need.

With sincere gratitude,
Megan Daniel
2010

Out

2010-11-10T10:31:00.002-06:00

Taking all three of my young children anywhere by myself is hard. Hard enough that I truly count the cost of going ANYwhere. So, we stay home a lot. For example, I make late night runs to the grocery store after the little cherubs are in bed for the simple fact that I can get through my list thrice as fast without them, even when I'm sleepy.

Getting out of the house involves choosing clothes and dressing &/or assisting the kids in putting in all on, managing three pairs of socks and three pairs of shoes (well, four pairs if you count mine), checking a diaper, requesting the boys try ("just try, if you don't need to go you can get back up") to go to the bathroom, checking for coats, analyzing the dirtiness of faces and messiness of hairdos, letting the dogs out one more time, telling the boys to go get in the van, convincing the boys that they really don't need to have a drink to take with them since we'll be right back ("yes, my answer is still 'no' even if you're 'thirsty to one hundred thousand'"), buckling Ella in her carseat, seeing if there's a movie in the van player ("remember when we didn't watch movies except for long trips? That was a good rule."), giving in about the drinks so as to not hear anymore about it and going back in the house to prepare them (oh, so THAT'S why my "no" doesn't really mean "no"--yeah, I get it), telling the boys to get-back-in-the-van-what-are-you-doing-in-here, trying to find the must-have toy du jour for Cooper and usually failing only to attempt to convince him that the toy he had yesterday is perfectly acceptable, running back in the house to let the dogs back in from outside, considering whether we'll be gone long enough to require a drink for Ella, shrugging and going ahead with making up Ella's milk, looking for that special toy one more time & occasionally finding it, returning to the van only to find the boys on the riding lawnmower instead of in their seats, finally convincing everyone to get in the van and buckled with toys and drinks and movie and diaper bag, and running back in to get my purse.

See? Not. Worth. It. Most of the time.

And now I've set the stage. I'm considerate like that, dear reader.

Last night, the local chicken fingers place was the site of (yet) another school fundraiser. As I picked everyone up from his or her respective school, I decided we would just skip it. On top of the hassle of getting out, when I consider that the place we'll be going is likely to be crowded and chaotic thus prolonging the hassle I usually pass. But Jackson asked to go, since they pumped it up at school (sigh), so then I got the brilliant idea that we would just drive through--we'd still be helping out, but we'd skip all the crowded-sticky-tabled-"boys-sit-down-and-finish-your-dinner"-ness of it all. Mommy for the win!

Well, Jackson wasn't a fan of that plan. Not only did he want to go in the restaurant, he wanted to take his friend Luke with us since Jackson had gone with Luke's family to the fundraiser dinner last month. I said that we probably couldn't work that out on such short notice, and we were sticking to the drive-thru. I am resolved. I am a rock.

About that time, Luke's mom texted me to ask if Luke could tag along with us if we were going since she had a charity thing she had to go to. I realized that I had a good opportunity to return the favor from last month and Jackson would be happy to boot. I decided to take one for the team. So we stopped by to pick up Luke who was way excited to join us, and off I went with four children under six years old to the fundraiser dinner. Go big or go home, I always say.

Yes, it was as crazy as you or I could probably imagine. But we did it, and we have the memories and the picture with the great big chicken to show for it.

New Family Member

2010-11-09T12:48:00.000-06:00

You've already seen this picture if you are friends with me on Facebook, but I just had to share it here for those who aren't and tell a little bit more of the story. This is Abbie. We got her at an adoption drive at a local furniture store whose owners were covering the adoption fees. She is approximately five years old and is a dachshund mix (I've had to reteach myself the proper spelling of dachshund; hadn't really written it since my childhood dog, who was also a weiner dog, was living. I mean, just look at all the h's in that word; that can trip a girl up, yo!).

She is basically perfect, though I may be biased. Even three days into bringing her home, I do not know what her bark sounds like; this is a good thing, since we have nappers who need quiet dogs and also live in a neighborhood that I'm sure would not appreciate a constant barker. She is a lap dog moreso even than Freddie is, who loves to be near for a little while but does not wish to be on my lap most days. She is wonderful with the kids, and they love her so much already! Especially Ella who even seeing just a picture of Abbie on my phone last night promptly gave the screen two wet kisses. Abbie even seems to me to be house-trained already. When she wants to go out, she just comes to find me, wags her tail to get my attention and maybe jumps around a little. So far, no accidents in the house!

And the two dogs themselves are getting along pretty well. There have been a few moments where they got a little growl-y but nothing major and it de-escalated just as quickly as it escalated. I'd say neither of them are very aggressive in general, even when food is put out.

I got her microchipped yesterday and scheduled her spay for Friday morning. Here's hoping she doesn't go into heat between now and then (though at a frequency of only twice a year, I think the odds are in our favor).

I might tell you more about how we came to get a second dog later, or not, but I will say that Chris was fully involved in the decision this time.

I went to get my son early today...

2010-11-05T13:56:00.000-06:00

...so I could get down on my knees and look into his eyes while he talked.
To tell him I think he's wonderful.
To hold him close without distractions from his siblings for a little while.
To really see him.
To encourage him to pick a name for his favorite stuffed animal.
To wonder at his imagination.
To feel the magnitude of my role in raising him.
To be silly.
And to hold on tight to Three before it slips away.

Ellie Pooh Bear Bumble Bee

2010-11-04T09:03:00.002-06:00

Happy Book Character Parade Day!

2010-11-04T08:58:00.002-06:00

Spiderman says...

2010-11-04T08:54:00.002-06:00

...Happy Halloween!!

A day late, and a blogger short

2010-11-02T13:30:00.000-06:00

I had this wacky idea that I would try to post daily in the month of November, and then I got a new job and worked all day yesterday instead writing up an inaugural post.

And today, I am super busy--what with advocating for a sick child in Haiti and researching who I am going to vote for and getting ready for a presentation on fatherless tonight (seriously, how crazy is my life right now?), so I just have a few minutes to start today.

Bullet points:

* So yes, I got a new job, to supplement my old one. I have started as a part-time nurse at Ella's developmental day treatment school and will be responsible for medications and procedures that the children need during the day. I of course will steer clear of Ella's room so as not to disrupt her, but there are many other children at the school I will be caring for. I really enjoyed my first day, and I am looking forward to working more closely with kids again. It tickled me to death to know I was in the same building with Ella, even though I can't see her. I kissed her a hundred times when I walked down the hallway to pick her up at the end of the day, smiling at my little secret.

* Trick-r-treating was awesome this year. We've had some difficulty in previous years (cops blocking us in or getting scheduled to work without knowing it, etc.), but we finally nailed it. Took the kids to a trunk-or-treat at a my in-laws' church, and it was so much fun! Ella stayed happy in the stroller the whole time, Cooper & Jackson stayed relatively close to us and had a blast with all the games and activities, and we all slept like rocks that night. Win-win-win!

* Chris & I celebrated our 9th anniversary last week. We didn't go anywhere fancy, but we were together and had a great time. And he surprised me with chocolates, roses, and a pretty fall wreath for my mantle. My love bank is full!

What's a girl to do?

2010-10-19T11:09:00.000-05:00

As I've mentioned previously, I've been kid-free during the week since this school year began. Sure, I've had appointments or sick kids or work thrown in the mix occasionally, but for the most part I have several hours to myself every day. It is, in a word, bliss.

But it really has me thinking about how I can spend my time wisely.

When I left my full-time job and primarily took on the role of stay-at-home-mom three years ago, I wrongly assumed I'd have tons of time to keep the house clean and go on playdates and adventures and so on. In reality, it was all I could do most days to get everyone dressed and to encourage them to keep those clothes on for the remainder of the day.

And again I've found myself battling similar erroneous preconceived notions about how much I can get done even when I'm unencumbered. Really, it's the fact that I only have about three hours a day instead of what seemed like seven, when you take away time spent dropping off and picking up and lunch with my husband home every day. And then, there's a myriad of things I COULD do but don't really know where to begin to prioritize, and yet still have a little downtime too (read: Netflix streaming is my time-kill du jour).

I've thought about getting a part-time job to maximize my time and earn some much-needed extra cash, but there are few jobs that can work with my hours requirements (not too many employers have a 9 to 2 shift), though I think I've found something where I can fill in on an as needed basis--more info to come if that materializes.

During this time, I've actually found that I have a longing to make a difference outside my little family. They are my priority, of course, but while they are safely off to their respective jobs and schools, I can impact others in a tangible way by volunteering my time.

When I began looking to the great needs that exist, I quickly became overwhelmed. How can Little Ol' Me even make a dent in all those poverty-stricken, dirty-water, fatherless-kid troubles we have in the world? Well, I can't. I'm finite and limited. And I'm okay with that. Because I'm learning that, as Max Lucado wrote in his new book Outlive your Life, "None of us can do what all of us can do." So I will jump in where I can and hope that others will join me as they become aware of the needs all around them too. Kind of like the New York subway logo: "If you see something, say something." Or in our case, If you see something, do something!

For me, it's the children. My passion has long been children. Did you know that there are an estimated 147 million orphans in the world right now? That number is staggering. It's not just in third world countries either. I learned recently that there are 175 kids in the foster system in my local county here in Arkansas and only 62 open homes, and another 175 kids in the adjacent county for 20 open homes. That math is awful, and there are real, live children behind those numbers. I want to do something about it. And I will.

I learned last week of an organization that is focused on promoting and supporting foster/adoptive families in Arkansas, partnering with local churches; it is named The CALL (Children of Arkansas Loved for a Lifetime). There is a new chapter starting in NWA, and I have reached out to the director about how I can plug in. I'm writing this here not to pat myself on the back but to hold myself accountable. There is also an orphan care conference that will happen right here in NWArkansas in February that I hope to help with as well. I will update as things progress.

A whole bunch o' random

2010-10-17T17:09:00.002-05:00

I've gotten out of the blogging habit. This my attempt to get back into it.

Here comes the random.

I'm not sure how the NFL spending all that money on pink cleats, towels, and wristbands is actually helping to advance the cause of breast cancer. Wouldn't it be better served to donate that money to research? Seems very wasteful to me.

Similarly, I don't understand how all those silly games on Facebook bring measurable help to the cause either. Are we all twelve-year-old boys who are giggling because we get to talk about boobies? What does this type of awareness mean anyway?

I've been watching a lot of Arrested Development lately. Sometimes it makes laugh until I cry. I just read that they're working on a movie with all the same main characters, due to come out in 2012. Love.

I'm going on a field trip tomorrow with Jackson's kindergarten class to the local pumpkin patch. I'm not sure who's more excited about it--him or me. My new friend Luke's mom (as the boys call her) is going as well; hopefully she and I won't get in trouble for talking too much :).

Ella had her 6-month eval at school the other day. It was good but sad at the same time. She's doing really well in all areas but she is testing at below chronological age across the board. I was surprised because i had been preparing myself for the opposite--where she might have to transition home soon because of how much she's catching up. As it stands now, I think she'll continue to qualify for services for quite some time going forward. If she needs it, she needs it and we're very pleased with the school, so we'll just keep on working with them to get her caught up with her peers.

And with that, I am gonna sign off for now. Company is in town and we're about to sit down for dinner. Happy Sunday, everyone!

Recent Pictures...Finally

2010-10-11T12:13:00.001-05:00

Ella loves her brothers and wants to be wherever they are. Up until recently, she would routinely get shut down by Cooper who misunderstood her presence as a threat to the things he was playing with. So, Jackson has been her safe haven because he is old enough to realize that she is not a threat in the least, and instead a pretty sweet little girl who is completely smitten with him. And after much coaching about being gentle and explaining that Ella really doesn't know what she's doing but that you can be pretty sure she is not intentionally trying to be mean, Cooper is coming around too. He now likes to be the first one to enter her room in the mornings to greet her as she wakes up.

A few days ago, Cooper and I had some time to ourselves. We went all around town running errands and having fun until I guess time got away from me. At some point in the afternoon, I looked in the rearview mirror to realize we had powered right through Cooper's nap; as you can see, he had taken the matter into his own hands. He would probably want me to tell you that he is no longer in this "baby seat" because it has since been converted into a "big boy seat"--a feat worthy of telling friends and strangers alike, usually with much jumping up and down.

I Love. . .

2010-10-05T00:18:00.000-05:00

That my daughter says "kee" (cheese) and smiles a winning, toothy smile any time she sees a camera. Even if it's on the TV.

Football season.

Hoodie zippy sweatshirts.

That my oldest says things like, "my mom's heart is in mine and my heart is in hers" when he is asked to tell a story at school. And that he has no shame in transcribing it to his teacher and posting it for all the world to see in the hallway.

An occasional cup of coffee.

My husband's laugh.

How attached my dog is to me, so much so that he'll often follow me all around the house making a bed wherever he can in the hopes that I might stay in one particular room for more than a few moments at a time.

When my middlest gets in my lap after being separated from me for a short time and says, "[sniff, sniff] I lost you, Momma."

Toddler pigtails.

Salty snacks.

Being silly with my kids when they least expect it.

Gadgets.

White buttercream icing.

Being the person my kids want to comfort them.

Having heart-to-hearts with my five-year-old as he tries to learn the difference between bad choices and bad people.

Giving (solicited) advice and feeling like I have helped someone.

Encouraging others.

Daydreaming about changing the world.

Freshly baked biscuits. Ooo and cookies too. Pretty much any just-out-of-the-oven doughy substance now that I think about it.

---------------------------------------------------------------

What do you love?

The Terrible Threes

2010-09-20T12:38:00.000-05:00

It has been my experience that two year-old children are a breeze, whereas three-year-olds are very challenging for me. I would have never anticipated it as such because I had interacted with 3's before, and they are just so darn cute and funny! (cute--yes, funny--absolutely, total handfuls--sad but true) And once we got through what was supposed to be a "terrible" 2-year-old phase with each of my boys, I thought we were in the clear. Which is why I felt very ill-prepared to handle the willful disobedience that both my boys began exhibiting as three-year-olds; more unprepared with the oldest of course, but I was still holding on the the sliver of hope that Coop would be different and it turns out he's even more strong-willed and therefore less likely to obey than Jackson was at the same age--at least that is the way I perceive it.

There is little that motivates Cooper to make the right choice in the throes of a bad decision. The more urgent the situation and therefore the less time I have to instruct him, the less likely he is to listen to me. For example, he runs everywhere, including right out into the street, without a moment's hesitation. If I am saying, "Cooper, stop! Don't run out into the road! Hear my voice, what am I saying to you?", he ignores most of it until I catch up with him and bodily stop him by grabbing onto his arm--which he dislikes greatly, often fighting to release himself from my grasp. Chasing after him is not always very easy to do because I often have Ella strapped to my chest and cannot move as fast as he can. Afterward, I try to help him understand the gravity of the situation and why we have the rules we have, but I get the distinct impression that he either does not care to hear it and/or much of it goes over his head. If I do get through to him, he cries rather inconsolably because he thinks I'm "mad" at him, which crushes his little spirit. Then, there is little that is retained from offense to offense, so I have to reinvent the wheel each time he does the exact same thing. I do try to tell him before we go outside what I expect from him and why, but it does little good. He seems to have the attitude of "I'm gonna do what I want, when I want, how I want, and don't care what anyone else has to say."

I know that he is young and realize that he is not going to be able to obey perfectly or retain everything from previous discipline he's received and what the rules are without being reminded, but I do think it is reasonable to expect him to choose to obey and understand why there are consequences when he doesn't. I'm just not sure how to get us there.

Parents out there, how do you discipline your three-year-old kids (or how have you in the past)? Teachers, child development experts, and anyone else who thinks he/she has some insight, feel free to share it.

Esther Louise and Ella Claire

2010-09-19T17:54:00.003-05:00

(wherein I plunder my facebook feed for things to blog about)

As most of you know (because I talked about it on Facebook when it happened), my sister-in-law Margo and her husband Josh adopted a baby girl a few weeks ago. It all happened very fast, but becoming parents is something that they had been praying and hoping for for a long time now. The baby's name is Esther Louise, and she is a doll. So. . . I have a niece!

Recently, Margo & Josh had a photo shoot with a photographer friend of theirs, and I wanted to share a bit of the cuteness with all of you--especially since I am currently (still) technologically unable to post pictures of my own babies.

In other news, Esther's cousin, my Ella, has been making so many tracks with her walking and development that as of July 13th (only a few weeks after she started walking in fact) she graduated from physical therapy at her school. We just this found out last week, and it was kind of by accident which I thought was a bit odd. But anyway, she will be reevaluated in January to make sure she stays on track, and she will continue with OT (which she started July 2nd unbeknown to us--again how odd to not tell the parents about adding or dropping therapies) and speech therapy during that time. And even though it will not be in an official capacity, the PTs will still be around Ella and can observe if she has any troubles. So, yay baby!! She is climbing all over things and can now get on both the couch and coffee table all by herself. She's very proud, and while I'm that as well I'm also a nervous wreck. She is also developing several words. She can say, "mommy," "momma," "dada," "byebye," "hi" (all the time), "nightnight", and "da" which means up. I'm pretty sure I'm leaving some out here. She has comprehension of many, many more words. She also signs for "more" or "all done" during meal times, which is incredibly helpful. And she can understand lots of simple commands. Lastly, after seeing us demonstrate it only a couple of times during the Razorback game yesterday, she can now call the Hogs. I'm pretty sure this is Chris' favorite of her new skills :). I think I'll have to be on the lookout for a Razorback cheerleader outfit for her.

As you can tell, we are incredibly proud of the E's in our family.

Book Review--Permission to Speak Freely by Anne Jackson

2010-09-14T12:51:00.000-05:00

"What is the one thing you feel you can't say in church?"

This question, asked by Anne Jackson on her blog in 2008, and the responses it garnered are the inspiration for her latest book, Permission to Speak Freely: Essays and Art on Fear, Redemption, and Grace.

When I learned of the opportunity to read and review this book, I jumped at the chance to do so. I have visited Ms. Jackson's blog on and off for the last few years now and am always refreshed by her honesty and willingness to tackle tough questions and topics in the Christian faith.

Thankfully, she brings the same candor to this book. Permission to Speak Freely is at once an intimate narrative of personal trials and the individual redemption that can only be found in God and also the beginning of a larger conversation of confession and healing where all are encouraged to join in, thereby waking the Church up from its misguided desire to, as the author puts it, "remov[e] all the messiness".

The book came in the mail early one afternoon last month, and I was finished reading it after dinner on the same day. Just under 200 pages, it is a quick but compelling read. The book's strength lies in its ability to elicit a visceral response from the reader. At times, my breath caught in my throat as I turned the page, wondering what would happen next. At other times, I could guess what would happen and wanted nothing more to reach out to the girl the author had been and show her the way out of the mess she was in. Or to give those so-called "well meaning" church goers that she was exposed to as a pastor's kid a piece of my mind. It also gave me pause as I considered my own opportunities to share my sins and weaknesses as a means to bring God glory.

Intertwined between the chapters housing the author's personal tale are reader-submitted pictures and postcards of secret confessions, a la Postsecret. While I think it is important to include them in order to point to the larger movement of encouraging raw honestly in the church, there was only a small sample included in the book which made the movement feel small and insignificant; it also had the effect of breaking up the flow of the main narrative to the point of making it hard to follow.

I give this book 3.5 out of 5 stars and would recommend it to to others.

Booksneeze.com provided me with a complimentary copy of this book in order for me to review it.

How's that workin' out for ya?

2010-09-08T17:48:00.001-05:00

When we were first married, one of the earliest things Chris and I agreed upon was the decision to send any future children we would have to public school. It stands out because it was a nice little patch of common ground to stand on during those early, stubborn years. As time passed and we had real children to replace our hypothetical ones, we revisited that viewpoint a few times and found our opinion remained the same; it even informed other choices. In fact, when we decided two years ago that we needed more space with Ella on the way, we chose the house we are currently living in largely because of the awesome elementary school nearby.

It seems that as stay-at-home moms (though I'm more of a hybrid at home/working mom, this still applies to me I should think), we tend to believe we have to spend every waking moment with our children and that anything which takes them away from us brings a certain amount of mommy-guilt. I know I had to battle this, for sure. But as I thought about it, I always came back to the conclusion that it is good for my children to be left in the care of others for a time and to learn that I will always come back for them. It's also good for me to have some alone time, to take a deep, cleansing breath, and to be renewed for when I am reunited with them.

It's not for everyone, and I'm okay with that, but this public school thing is certainly working for us right now. I get to augment the teaching that is already happening, and that is so comfortable for me. Just last night, while looking at the little DVD screen in the van, Jackson said, "O-P-E-N. Does that spell 'open'?" I almost fell over. My boy READ a word! And then we went on to talk about what it means. Just three weeks ago, he could not care less about looking at letters and sounding them out, no matter my efforts to encourage him to do so, and here he is after a couple of weeks into kindergarten and he's trying to read on his own. That makes me so happy.

Now, the bus TO the school? Well, that's a whole 'nother issue entirely and a story for another day.

Poor neglected blog

2010-08-30T02:18:00.002-05:00

I do so mean to return here, catching my dwindling readership up on all our travels and travails of the second half of the summer, but I have no easy or workable way to post pictures here and that makes me not want to bother with just words.

However, I feel I can muster a quick and partial summary: Ella is charming and walking and "talking" and understanding so much. Cooper is daring and going and going and going and part baby/part big boy and so industrious. Jackson is tender-hearted and imaginative and talkative and inquisitive and a wonderful big brother to Ella, though more of a big bother to Cooper :). Chris is another year older as of yesterday, and I'm mostly just tired. :)

All three of our kids are in full-time school right now, and while I was/am tempted to believe that I'd have all this magical free time because of it, I'm just trying to stay grounded and not bite off more than I can chew (how do ya like that mixed metaphor?) Just look at the fact that we're more than a week into it and somehow have managed to have at least one child have to stay at home because of sickness at least half of that time.

Regardless of how much or how little, it certainly has been nice to have some alone time and to remember in the missing them just how much I love my kids.

Hiatus

2010-07-26T15:09:00.001-05:00

A perfect storm of occurrences has made it virtually impossible for me to post to my blog these days. Busted modems and computers and cuts on thumbs and general busy-ness. You know, life. Hopefully, we can get it all fixed soon. See you on the flipside.

An update on Friendship and a prayer request

2010-07-13T16:24:00.001-05:00

Oooo, I do so love the discussion going on my last post about friendship. If you haven't already commented, I'd love to have your input as well.

I checked in on one of my favorite blogs, Kelly's Korner, earlier, and she wrote about this topic as well today. She mentioned a book called Friendship for Grown-Ups:What I Missed and Learned along the Way by Lisa Whelchel (of "Facts of Life" fame). I'm pretty sure I'm gonna have to check this book out; it sounds right up my alley.

Also, could those of you who pray please remember Ella tomorrow? She is having a procedure in the morning to get tubes put in her ears. She has been battling cyclical ear infections since last fall, and we think the chronic fluid build-up could be hindering her speech development and her sense of balance. Please pray for no complications and that she would have an easy recovery. Thanks!

Give and Take

2010-07-09T22:22:00.000-05:00

I've got a little confession to make. I don't really understand how girls maintain close friendships with each other at this stage in life. Or maybe how This Girl does anyway. (And I'm not really sure I ever did, to be honest.) Married with three kids, a part to full-time job, and a house to care for--I feel busy all the time. Therefore, to have time with friends would mean not focusing on those other things for a little while. The guilt! The horror! The alternative being to bring some of my charges with me, and really that's not very relaxing or friendship-building at all, so why even bother?

Part of my problem is that I never really have learned the rules of being a good friend. I know that probably sounds silly and reveals a deep-seated (seeded?) need to over-analyze social interactions, but I just am unsure of what is required of me. Am I giving enough? Am I taking too much? Vice versa? How often should I call and check in?

Lastly, it kind of feels like everyone already got paired up with somebody long ago, and any effort I make now is just trying to force the issue. So I often don't. But when I do make the effort and stop trying to overthink it so much, I always enjoy myself. You'd think that would be a motivating factor to reach out more. . .

Does anyone else feel this way? I'd love to hear your thoughts.

Days Like These

2010-07-01T01:41:00.001-05:00

I think I'm going to have to start using the voice memos feature on my phone, so that throughout the day I can record all the moments of brilliance or hilarity as they happen, and therefore I won't forget my entire self and everything I ever wanted to write about on the blog by the time I finally sit down to tap it out in the quiet moments of a too-late-evening. By which time I must resort to just piecemeal-ing a post together from scraps of memory and perhaps throw in a picture or two, and hope it'll pass inspection.

It reminds me of the funny song by Tenacious D called "Tribute."
*a slightly random reference wherein I reveal my weird sense of humor in all its glory to my unsuspecting extended family.*
For some context to those who are unfamiliar, here are a few of the lyrics:

"This is not The Greatest Song in the World, no.
This is just a tribute.
Couldn't remember The Greatest Song in the World, no, no.
This is a tribute, oh, to The Greatest Song in the World,
All right! It was The Greatest Song in the World,
All right! It was the best [blankablankin] song, the greatest song in the world.
[2-part skat]
[Spoken]
And the peculiar thing is this my friends:
the song we sang on that fateful night it didn't actually sound
anything like this song"
----------------------------------

Clearly, I digress.

Anyway, I think I sat down to write about turning corners. Or regaining perspective. Or something.

But first some background.

I used to be an incredibly laid back person. If you didn't know me back then, you might be shocked to hear me say that, but as a teenager and younger, things just didn't ever get to me that much. I have a feeling it had a lot to do with how little responsibility I had and how trusting I was that everything would work out, but I can't be for sure. (I still have most of my optimism intact, but I have had my share of disappointments and heartbreaks since then and have lost a bit of the pie-in-the-sky outlook of my youth. Which has yielded to a more robust faith that does not (always) lose hope in the face of undesirable circumstances, so it's not all bad.)

One thing that really cramped my laidback style is having children. These multiple little kids with their stubbornness and immaturity and messiness and loudness. . .it just gets to be too much sometimes. And I lose perspective on how being a mother is supposed to be filled with joy and rainbows. I mean, I still know this on an intellectual level, but, in the throes of it all, I do not always feel it.

See, it's easy to be happy-go-lucky without any challenge. But when things get down right hard, and the kids are waking up their sister with their loud voices again, or fighting for the umpteenth time (a phrase pulled straight from my mother's mouth), or the baby is crying because I finally just put her down after carrying her so long I'm convinced my arm will never be the same--when those stresses add up, I tend to get overloaded. And often have felt justified in whatever reaction bubbles up to the surface.

In the last couple of days and weeks, though, I have really been focusing on choosing joy regardless of the chaos, and even because of it at times. I can't always control my children, but I can choose how to respond to their childishness. I can train them instead of shame them. I can speak lovingly instead of harshly. I can praise God that I have my hands full because my heart is also full. I can pray for patience and wisdom. I can admit my failures to my kids and ask them for forgiveness. I can encourage excellence without expecting perfection. And all the while, I can breathe and not feel overwhelmed.

This transformation is far from complete, mind you, but I've seen evidence of it coming for a while now. There is a verse that I learned long ago in my carefree days that came to the forefront of my mind three months ago and has remained there. Though the verse does not expressly talk about parenting, I just felt like God wanted me to think on it every time I speak to my children and allow it to inform my word choices.

Ephesians 4:29 "Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen."

An anniversary to celebrate

2010-06-26T12:43:00.002-05:00

Yesterday was a monumental one in our family. That's because a year ago yesterday, Ella had her last infantile spasm! Originally, there was some talk that if she could string together a year of seizure freedom, she might be able to have a trial off her only seizure medicine. As it is though, we have observed some less serious tics and other questionable focal-type seizures over the last year, so I believe she will stay on her med for now. It's okay with me, I guess, but I look forward to the day when she could possibly be off everything.

Ella is also taking multiple steps now, up to 13 at a time! She's a little wobbly and hurky jerky, but it is amazing to watch her do something that we weren't sure if or when she would ever be able to do. I'll try to get some video of it, but I never seem to have the camera in the same room where she decides to take off.

Jackson had his first t-ball game this morning. Chris, who is on his way to Atlanta to watch his Braves play my dad's Detroit Tigers and therefore couldn't be at our game, asked me on the phone who won. I couldn't say for sure. I get the distinct impression that the score doesn't really matter. They let every kid bat every inning. It seemed to me that the other team got more outs than our team did, so my guess would be that they won. I'm not sure Jackson really understands what's going on. On the way home, he asked me who those guys in the orange shirts were. I answered, "that was the other team, son. It was a game that you played, not a practice." "Oh, okay," he replied. At least he had fun and because the clouds were out, it wasn't too hot yet either, which made it more enjoyable for me too. Cooper was a bit grumpy on the exterior, enough that another parent noticed it and commented that he might have woken up on the wrong side of the bed, but he too said he had a good time, better when Dear Linda showed up and gave him some attention. He still is mad that he can't play yet. Soon enough, big boy, soon enough. . .

I have finally gotten the duplex mostly cleared out of the multitudes of things that were left behind when our most recent renters skipped town back in April. We only got legal possession back a couple of weeks ago. I sold a bit of the stuff, but mostly I just donated it. There were some fairly nice items, but it was a good exercise in letting things go because I didn't really need any more stuff in my house. Our church runs the Potter's House Thrift in Fayetteville, and they came right to the property and helped me carry about half a truck's worth of stuff out of the place. I have no idea how much of a value to assign for tax purposes, but the driver told me to come up with a number and double it because most of the time people undervalue their things; he said that they get a lot of garbage but that the stuff he saw wasn't garbage and thanked me.
I've had a couple of potential renters in there to look at it over the last week, even though there's a little more work to do. I even had one family look at it on two separate occasions and take an application, saying that they would mail it right back. I never know for sure if they are interested and have even had one lady flake out AFTER returning the app, so I can't be certain, but we may just have someone in there by the beginning of next month. We'll see. . .

We'll the baby girl has decided that she is done napping, and since I'm the only parent she's got here, I guess I better go get her.

A grab bag of info and funnies and prayer requests and praises--something for everyone

2010-06-19T02:51:00.001-05:00

It's the middle of the night, and I should be in bed, but I just wanted to pop in and tell you that, yes, I am alive and do still have plans to be a regular blogger . . . it's just that life is so full right now that it's hard to stop and write about it.

Currently, I am working nearly full time between the hospital and the first aid stand at the minor league ballpark. I am also trying to get the duplex ready to be rented (again)*, and because I'm crazy I am having a very informal garage (which-is-actually-indoors-because-ain't-no-way-I'm-sitting-out-in-the-sun-all-day) sale at our rental property tomorrow. Knowing that people like to be out early, I committed to being there at 8 a.m., not realizing that the ballgame would go into extra innings and that I wouldn't get home till midnight tonight. And not thinking that I wouldn't have anywhere to get change until the banks open tomorrow, which is a full 30 minutes after I am supposed to start the sale. I am literally going to have people open the cabinets of the kitchen, go in the closets, etc. and shop for anything they might want. It is exciting to think that I might be able to get rid of some of that stuff left in there and make a little money in the process. I only hope that people will come and offer to buy things and make it worth my while. I feel like I've been gone from home and away from my kids so much lately. It kind of stinks actually. Anyway, whatever is leftover will be donated to our church's thrift store ministry. If I have more than can fit in my van, I am probably going to have them bring their truck to haul it off.

*Our renters left in the wee hours of the night some time back in April but because they didn't leave notice, and have not returned any of our efforts to contact them, we had to wait to take legal possession until the unit was considered "abandoned by failure to pay utilities" which took until last week. What a mess!

Jackson has started playing t-ball this week. He seems to be one of the youngest on his team and perhaps the least experienced as well, but he is having such a good time regardless. I really enjoy watching him interact with the coaches and get tickled when he yells, "Hi Mommy!!" from the outfield. Cooper went to the first practice and promptly declared that he was "a big boy" and was therefore going to go play baseball too. Kills me that he can't play yet, but I'm gonna blink and his turn will be here. I bought a glove (or as Coop calls it a "helmet"--he's in the ballpark anyway :) for each of them, and Cooper loves his so much that he's keeping it with him to sleep at night.

I wanted to share a funny story from a few weeks ago. I had picked up Jackson from school and decided that I better stop at the grocery store on the way home to get some milk and other necessities for dinner. This was when it first started feeling like summer, so it was quite warm. As I got out of my van to go inside, I noticed that a car a few spots away from us in the parking lot had one of those infant carrier carseats in it--you know the kind that almost always have a baby in them; there was no one around and the car was off, and I just didn't feel right about leaving without knowing for sure that a child wasn't in there. But then again, I didn't want to be all Nosy McBusybody either. So, I had the bright idea of sending Jackson over there instead. Always happy to be a good helper, he dutifully walked up to the car, put his face right up against the window, and assessed the situation. Upon completing his task, he promptly turned around and shouted back across the parking lot to me, "There's no baby in here, Mom!" Hmm, I guess I need to work with him on the finer nuances of being discreet.

June 15th came and went this week, and I had a twinge that the date had some special significance to me. I just realized this afternoon that it was the day Ella was admitted to Arkansas Children's last year for what ended up being a 9+ day hospital stay (wherein she was diagnosed with infantile spasms blah blah blah). We were sustained by many prayers and notes of encouragement during that time, and especially so by the amazing Felios and McKelvys who brought us meals and washed our clothes and sat with us as the doctors told us what was going on and lent us phones and more. Our dear friend Page McKelvy is herself in the hospital this week, after undergoing major back surgery to correct what the doctors called a "false joint" in her spine. It had developed over time as a result of a paralyzing injury sustained in a car wreck when she was a teenager. She now has more pins and plates in her body than I can imagine, and she is understandably in a lot of pain from it all. Also, she will be undergoing rehab to get her strength back, which is no easy task. Would you pray for her with me? If you'd like to follow her progress, her husband Kevin started a blog that can be found here.

After many weeks of effort, Chris is finally getting some calls about scheduling job interviews. He's already had one this week and has another on Tuesday. So that's a praise and a prayer request all wrapped into one. Please pray for favor with the interviewers and that God would give Chris insight as to what direction he is supposed to go next.

Updating you on my kiddos

2010-06-08T03:30:00.000-05:00

ETA: This was written over the weekend, but I couldn't get it to post on my phone. So here it is a few days later. Forgive me for not editing it to real time.

I have been a bad blogger the last couple of months. I'm okay with that, actually, because I know it's due to the fact I've been busy, but I am (perhaps naively?) hoping that the much anticipated arrival of the summer vacation next week might indeed BE a vacation from the busy-ness, at least somewhat.

Jackson has one more day of school for the year. On Monday. Thanks for that, snow days! :) A few weeks ago, I started to get it in my head that yesterday was the last day, and i think it's because his class had its end of the year program last night. And oh my word, it was precious! There was a barn theme to most of the songs, so it follows that Jackson was a cow--when he wasn't acting as assistant director that is :). There was a sweet video from the year, that we all got a copy of thankfully, and that Jackson was happy to narrate for us. "That's so-and-so, I try to stay away from him because he hits me sometimes" or "that's such-and-such, sometimes she makes my nose smell bad." I mostly was shushing him during that part as you can imagine. All of his grandparents were there for him which was awesome, and even Aunt Kristin and Uncle Shawn made it in from Little Rock.

I'm so proud of J and all that he's accomplished this year. I can hardly believe the skills he has and his understanding of the way the world works. He is totally ready for kindergarten now, and just two years ago I remember wondering how he'd EVER be. It's pretty amazing. I'm so thankful for the opportunity and for his wonderful teachers.

Cooper cannot wait for school. He's been home with me all semester because we weren't sure how it would work to have all three kids in three different schools in three different cities. I'm kinda sad that that's the decision we had to make, and I think he and I would probably both have benefitted from it for different reasons :), but we have had some good times together. And I've seen some really great progress in him too. He's becoming quite imaginative and has started to have a little bit of a memory-- certainly not about discipline or consequences of course :). He is really into Spiderman now, even says he's gonna marry him when he grows up, which is hilarious to me. He is a potty-trained champ, has never had an accident overnight, and if I could just get rid of that pesky gap between the bowl and the seat, he'd be set in the bathroom too. He says things like "where was are you, Mom, I lost you!" and "can I have a piece of your coke?", and he never has fewer than four bruises on his knees and shins from all the adventures he gets into. Not to mention the scratches from the dog, who must protect himself from all Cooper's "love."

Ella is probably going to have tubes put in her ears soon. She's been treated for ear infections on and off since September, and she has yet to pass a hearing test in her left ear on five or six separate occasions probably due to a chronic fluid build up more than an actual neurological loss--we are hopeful anyway. But we've gotta get it resolved because it is not ethical for a child to receive speech therapy if she cannot hear it, so we run the risk of having her speech funding halted until we do. And she only started with her full time speech therapist two weeks ago because it took that long to get her permanent funding as it is, though she had been at the school for six weeks by then. I'm really trying to avoid any more delays in her treatment if I can. She is doing so well in school, and her progress is measurable even after only two months. So proud of her!

"So, you're done, right?"

2010-05-25T11:21:00.000-05:00

It's a question I've been hearing for a while now, even before our girl joined our family in fact. I never know what to do with such a query. I mean, I know what the asker WANTS me to say. You can't be the daughter of a Perry Mason fan and not want to shout, "Objection, your honor, leading question!" But being a people pleaser all my life and generally wanting to avoid the Weirdo label makes me play nice, and instead I say, "oh yeah, we're SOO done! Three kids in less than four years is quite enough for me." Chuckle, chuckle, chuckle. And the person nods in agreement as if the proper number of children were a constant like Avogadro's and goes on about his or her day (it's almost always a "her," by the way).

It's not really that I'm being dishonest, per se. In many ways, I really do FEEL done, if such a thing can be felt. Like when I chase my middle child in the parking lot yet again, heart pounding, baby strapped to my chest, oldest left to his own devices, hoping none of them will be harmed, and wondering why children his age are so good and intent on weaseling out of momma's handhold, I certainly feel like I have enough children to manage. Or when I'm up a second or third or even a fourth time in the night holding babies or quieting bad dreamers, I can't imagine adding to the number of sleep deprivers I already have. And certainly, the finances can argue their own case of being stretched to the limit by our current numbers.

The truth of the matter, though, is that it is not up to me. That is not code for "I want more but I know better than to say it outright because people will judge me" either. I promise. It's just that I know better than to think that I am in control of this part of our life (or any other part for that matter).

I know Who is in charge here, and I know how blessed we are. We wanted kids, and we had kids. It was as simple as that for us. But I've seen more than enough who are trying to conceive or grieving the loss of a child, to the point that I realize this has very little to do with mere desire or fervor of prayers or potential parenting ability or any other human thing. God works in mysterious ways, no more apparent than in how he builds families. It does not always makes sense in the valleys of deferred hope and grief, but He is not done writing our stories yet, and, knowing the Author, I have a feeling they will be masterpieces.

My FDA speech

2010-05-16T17:30:00.005-05:00

"Good morning, and thank you for having us. I, along with my husband, stand before you today to share the still unfolding story of our daughter Ella's journey with infantile spasms.

In May of 2009, while not yet 5 months old, Ella began to have odd staring spells. Up to this point, she was on track developmentally, but, being a nurse, I feared right away that something very serious was wrong with our baby. Within the week, her spasms became more pronounced and began to cluster in short succession several times a day. By mid June, after an EEG that was determined to be "very abnormal and worrisome" by our neurologist, Ella was admitted to Children's Hospital for treatment of what was presumed to be infantile spasms.

We had already researched the possible causes of what we were seeing and were familiar with the term. And its devastating prognosis. I will never forget one of the first things I read about this catastrophic seizure disorder: that the incidence of mental retardation associated with it is estimated at 75 to 90 percent. There were also grim statistics about shortened life expectancy that I quickly banished from my mind.

After a few days of EEG monitoring and observation, Ella was officially diagnosed with infantile spasms. Quickly, the neurology team decided that ACTH would be the best course of action for our baby; we weighed the risks and agreed, and she started treatment the very next morning.

The case manager immediately began communicating with our insurance company to cover the prohibitive cost of the medication, knowing it would be a hardship on our family.

Because Acthar is not FDA-approved for use in infantile spasms, our insurance company denied coverage, calling it "experimental." An appeal was also denied for the same reason.

But the National Organization of Rare Disorders, along with the Acthar Support and Access Program, had already come on board to help us get this medication our daughter so desperately needed. Through their combined efforts, even though our insurance company never approved our claim, we were given Ella's entire six-week-course of treatment free of charge and without delay. We will be forever grateful for their assistance.

On her eighth day of treatment with ACTH, and exactly a month after her "staring spells" began, Ella had her last spasm, well over 10 months ago.

Now 15 months old, our daughter is a happy, beautiful, active, loving little girl who charms everyone she meets. She attends a full-time early intervention program that provides her with daily physical and speech therapies, and, though she is delayed, we have great hope that she will continue to progress and will some day reach her optimal development.

We take nothing for granted, knowing that hers could have easily been a very different story. We believe that ACTH gave our daughter back to us. We hope that you would strongly consider approving Acthar for use in the treatment of infantile spasms, so that many more children like Ella would have access to this life-giving medication."

A few images from our trip to tide you over until I have time to actually write about it

2010-05-12T18:22:00.000-05:00

Procrastinating

2010-05-04T01:08:00.002-05:00

Wow. 10 days. Pretty sure I haven't gone that long without blogging in a long time. And I didn't really notice it'd been a while until yesterday. When I stopped to try to remind myself what day it is.

See, I've been working a lot. Partly to make up for the lost income from Chris, and partly to cover the time we will be out of town this week and/or entertaining (read: trying not to overwhelm) family coming to town. Nights mostly. And not sleeping enough in between. So lot's of things have been pushed to the side for now, including being on the computer.

But then I realized that I have to actually write a speech if I want to come across at least slightly coherently when I testify before the FDA on Thursday, so onto the computer I logged. But not really knowing where to start, I started reading a few blogs, and then remembered how neglected my own blog had become, and, voila, here I am.

It occurs to me that I may not have mentioned this little detail about the FDA on the blog before now, since it was only finalized a couple of weeks ago, so let me backtrack.

Ella, as many of you know, was treated with a medication called ACTH last summer that was effective in eradicating her infantile spasms (so far anyway, 10 months and counting!). It was costly and not covered by our insurance (through the generous gifts of an amazing organization called NORD and the drug manufacturer itself, we were able to get her six-week course of treatment free of charge). The main reason our insurance company cited in denying the claim was that the Acthar was not FDA approved for use in infantile spasms and was therefore considered "experimental" (though it has been used to treat IS "off label" for more than forty years). So when we found out (through our ongoing involvement in the IS awareness campaign) that the drug company was petitioning the FDA for approval for Acthar in the treatment of IS and was looking for parents to testify about their children's experience with ACTH, we were immediately interested; it is our hope that with FDA approval, the medication will be more rapidly and readily available to the children who need it in the future. We formally petitioned the FDA to speak at the hearing, and our request was granted a little while later. After much planning and not enough speech-writing, the day is almost upon us.

In addition to not knowing what I will say before the FDA yet, I am feeling a bit unprepared in other ways. I need to pack for myself, pack for my children who will spend the night at the grandparents--including all that they will need at school, make sure I have properly identified my parents as authorized to pick up my darlings at their respective schools, not to mention trying to rendezvous with a few other parents of IS children while in DC.

I haven't a thing to wear to the hearing either. Sigh.

Wherein I talk about something other than my kids

2010-04-23T14:29:00.001-05:00

I finally got around to fully grooming the dog today. I had taken some scissors to him a month or so back, but I never really got to his front legs, so he began to resemble a Clydesdale horse in front. Not a good look for a dog, trust me. And then when I got the riding mower out on Wednesday for the first time this season, Freddie ran through the freshly cut grass only then to look like a Clydesdale horse . . . from Ireland. Or something. Anyway, the grooming, it had to be done. So this morning I sat with him on the floor, tethered him to the chair (which was key to my success, come to find out), and got to work using our new dog clippers. I had avoided getting them in the past and made do with what we had, but then I would get fed up trying to use the far less powerful (but quiet and kid-friendly) hair clippers I have for the boys and just end up taking him to the groomer. Not cheap. For the cost of one trip to get it professionally done, I now have the clippers to do it myself forever. I really need to figure out a better system though because sitting on the floor all that time and hunching over my work has done a number on my back. To sum up: I am incredibly old and wussy, but Freddie was such a trooper. I think he was ready to get all that extra fur off of him.

Observe:

This was just before the big cut, snuggling with "the cat."

This was the pile 'o hair after the deed was done. (p.s. those tiles are 1 s.f. each and the pile itself had some height to it)

And here he is now. The picture makes the guard lines really show up, but I don't think they are quite so stark in person. Besides, I'm pretty sure they will fade soon. Even if they don't, we're certainly not trying to win any pageants around here :).

In case you were wondering. . .

2010-04-19T01:42:00.003-05:00

. . . Ella is doing really well at her new school. I miss her like crazy and kiss her approximately 2 hundred times when she gets home, but I know all the missing her is worth it and am so thankful for the opportunities she has there.

She is getting better at crawling all the time. Sometimes, her legs get going a little faster than her arms, and so she gets a little crooked as she crawls. It is incredibly endearing to watch. She loves to pull up on things all the time now, especially the TV so she can press that big power button--she gets so proud of herself you'd think she was about to burst. Or maybe that's me. Often, she gets stuck in that standing position and doesn't know how to get herself down. She cries for a few sad moments, and I go rescue her, only to have her pulling herself right back up within moments. Jackson is fairly patient with her, even when she turns off his favorite show, but after a few times, he finally says, "Mom, can you come get Ellie please?"

Cooper is not patient with her at all, and we are constantly having to ask him to be gentle with her even if she is doing something he doesn't like (read: touching "his" stuff). He has his moments of sweetness toward her as well, though, so I am trying to cultivate those.

In big people news, Chris got laid off last week. We knew it was likely coming, but it's still kinda stinky to have it happen no matter how much forewarning you get. He is working really hard at finding something else right away, and in the mean time I am working extra hours at the hospital and have also started working at the Northwest Arkansas Naturals ballpark in the first aid stand as well. I like the job and love watching baseball, so it's a good fit for me. I only wish I could have my kids near, but they're too young to understand that mommy is working and needs them to go sit back down. Maybe in a few years. . .

Finally, in case you are a visual person, I offer the following as evidence of Ellie's pulling-up-on-the-TV hijinks (baby mullet included at no extra cost) --

In the works

2010-04-14T14:36:00.001-05:00

If you've known me for any length of time you might not be surprised about what I'm working on today at (nearly) the last minute. I mentioned it around this same time a couple of years ago.

Since I am a busy bee, and in lieu of a lengthy post, then, I will share some pictures now and save our stories for another day. Below you will find a few action shots followed by a picture of a sleeping beauty. If I live to be 300 years old, I'll never tire of seeing baby feet peeking out from under nap time blankets.

Ella's big day

2010-04-06T10:49:00.001-05:00

I didn't really have a chance to dwell on it. The morning was here, and, before I knew it, it was time to drop my baby girl off at her new school. I thought I would be sad, but I have all three of the kids with me today (since Jackson is still not well enough to go back to school yet), and I was a little distracted by the immediate task of keeping the boys from dying in the parking lot. Sad would come later.

I did feel completely ill-prepared, that much I know. I couldn't even find the lovey that I was going to send for naptime, since she is such a snuggler. I hope she can sleep without it. . . She's not picky, even a burp cloth would do. . .I'm fighting the urge to take a lovey to her even now. They do have blankets, at least. Her diaper bag was considerably lighter than it was when she went to Mother's Day Out last semester, when she was still exclusively breastfeeding and had so much more equipment. Her new school provides all her food and milk for her meals now, which is just awesome. Not only does it save us money, but it's also a huge burden taken off my shoulders--more than half the battle for me in getting my kids off to school is planning their meals.

I took a series of pictures on my phone (because I forgot the real camera, of course) to commemorate the event, but the above pic was the only one that wasn't blurry since Ella was already on the move in her new surroundings. It made me really happy to see her reaching out to some of her baby peers already as she played on the floor. She's always been very intrigued by other babies, and I think it will help her in her therapies to have other small children to model. I know her brothers have been able to provide that to her already.

Today, I dropped Ella off myself and will pick her up this afternoon as well, but starting tomorrow she will ride the bus since I have to get Jackson to and from his school at the same time. It is kinda weird for me to think of putting my baby girl on a bus and sending her out in the world, but it is a bus specifically for kids that attend her school arranged through state programming. They assure me that it is safe and that she will have a carseat and everything :).

I'm already looking forward to picking her up in a little over four hours and hearing about all that she did during her big first day.

Making tracks

2010-04-02T16:28:00.002-06:00

Look at my girl standing tall after pulling herself up. She is now, officially, "into everything." And I love it!

Mom, there's a strange-colored liquid in my cup. Orange juice, you say? Delicious!!

-----------------------------------------------------------

Next week, Ella starts full-time preschool. We've been working on this since the beginning of the year, but getting all the approvals and evaluation takes some time. The timing actually works out quite nicely because she has just (essentially) weaned from breastmilk, so now I don't have to pump all the time while she's gone. The program will integrate physical and speech therapy into her daily schedule. I couldn't be more excited to see how it benefits her. She will be getting 150 minutes a week of physical therapy (30 more minutes than currently) and 120 minutes of speech--which she's never had before. I've said for a while now that I think she has some speech delays (especially because of feeding issues, though she has been conquering them on her own in the last few weeks); I'm happy to see that she is going to get some help with this earlier than later. Her TEFRA medicaid (for chronic illnesses) covers transportation to the school, so it's really a great situation all around. The only negative is how much I will miss her. She has been my nearly constant day time companion since she was born. And we have a really good time together, especially lately. I'll be sad, and I'll probably cry the first day, but soon I know I'll be celebrating all her accomplishments and I will have the confirmation I need to know that it will all be worth it.

Sometimes I try to use Google like a crystal ball

2010-03-28T01:05:00.000-06:00

When people hear that my baby girl has a seizure disorder called Infantile Spasms, often one of the first things that they ask me is whether she will grow out of it. My answer is never an unqualified yes or no, as I'm sure they are expecting. It's more complicated than that, or at least I am. I haven't quite decided which. . .

I've come to the conclusion, though, that the name is to blame for this conundrum. "Infantile" suggests something that will be grown out of once the child leaves, well, infancy. (and it also makes it sound rather benign and piddly when in actuality it is absolutely devastating to development, but I digress.) Which is technically true, but not in the way most mean it. Yes, the brain grows out of this type of spasm because it only responds to the underlying etiology (cause) in this certain way when it is immature. Unless the spasms are halted by intervention (medication or surgery), the brain only "grows out" of them usually to morph into another form of difficult and varying seizures that are not typically very responsive to treatment. Read: scary bad prospects out there.

Anyway, what I think people who ask if Ellie will grow out of infantile spasms are getting at is "how will she turn out?" Sorry if I'm projecting, but that's at least what I'm thinking exactly 100% of the time.

So my answer typically goes a little something like this (usually without quite so much medical-ease but I can hardly help myself): "Welllll, her best chance to develop normally is to stay spasm-free (nine months and two days so far, but who's counting), which she achieved after a six-week course of high-dose hormone injections last summer. She is developmentally delayed currently, but she is making wonderful strides at catching up to her peers. (and I always finish with this) I have great hope for her."

Not that it's not just a thought away at all times anyway, but actually getting to talk about the potential outcomes often makes me go home and google "infantile spasms prognosis", searching for anything I might have missed the first time around, as if in the magic of the information age some new tidbit published yesterday will finally shed light on just exactly what we're in for later in her life.

What I really want to google, if I'm being honest with you, is: Will my daughter walk? If so, when? Will she need leg braces (my newest fixation since the physical therapist at Ella's new school asked about the possibility last week)? Will she speak? Will she have obvious deficits? Will she be socially competent? Will she be normal?

I know it doesn't work that way, and really I'm not sure what I would do with that information if I had it anyway, but it doesn't stop me from wondering.

Finally Spring Break came through with some nice weather

2010-03-26T14:36:00.001-06:00

As I sat in the kitchen, both overseeing my daughter's lunch and watching through the window at the boys playing in the backyard, I was thankful for the much needed sunshine and the few moments of relative peace it was affording me.

Suddenly, in walks the five-year-old (how is it possible that I have one of those?), breaking me from my trance.

Jackson: "Mom, I've got good news and bad news."

(where does he get this stuff?)

Me: "Okaaaay."

J: "The good news is that I made you a circle of X's. And the bad news is that Cooper dumped out all the chalk."

Me, continuing to sit right there. "Okay. Thanks."

J: "Aren't you coming?"

Me: "Oh, you want me to, well of course you do, yes, okay, I'll be right there."

I just keep reminding myself that there will be a time in the not-so-distant future where my presence will not be requested quite so often. I have a feeling I'll miss the chaos when it's gone.

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Some of my favorites from the IS awareness shoot

2010-03-21T11:20:00.000-06:00

Wherein I try to appease you with some pictures

2010-03-16T09:23:00.000-06:00

Poor neglected blog. I've got at least three partial posts tapped out but can't seem to get around to putting the finishing touches on them. There's just so many highlights from the last week or two. I'll try to finish them up soon.

In the meantime, how about some pictures?

Here's what my living room looked like a couple of nights before the film crew came, and what it still looks like even now. You believe me, right? That it still looks this way? Better not answer that.

Here's another angle, this one to show the throw pillows that Chris insisted on getting. Okay, now I'm just being ridiculous.

This next picture was taken with my phone, so it's a little fuzzy, but here is a shot of our dining room. I actually managed to keep it this way (until I returned those decorations on the table to my mother) for several days after the shoot because I cleared out a spot in the boys' room for the toys that had been stored in the corner in here, and now they really have no reason to be in this room.

Here's a picture of our new kitchen table and chairs. It is a late (because it took me forever to find THE table) anniversary present from my parents. You can't see it in this shot, but there's also a bench on the other side. I love this set. It is simple and pretty and has enough seating for all of us. I know we'll use it for years to come.

It's been kind of a big deal around here that Ella has actually shown interest in real food again and has been eating like a champ of late. She tends to get it all over her face, but I still think she's pretty cute.

My oldest turns five today. I really cannot believe it. How is it possible that I have an almost kindergartener? (When Jackson learned that he had reached the age of 5, he immediately asked if he wouldn't be going to pre-K anymore, because I'd told him a long time ago that he would go to kindergarten when he was 5. So you see, the boy forgets nothing. Be warned :). He gets cooler with each passing day. I love his heart, his inquisitiveness, his friendliness, his quirkiness. He's very routine (his dad's influence) but NOT a morning person by any means (my influence). He is still quite the snuggler, which I love. Thank you for being such a wonderful helper to me, Jackson. Happy Birthday, I love you!

This little guy turned 3 on Sunday. I don't have a good picture of him sitting still, precisely because he rarely does so; instead, I had to go with the stuff-on-his-face shot. I love my Coop to pieces. He's my rock 'em sock 'em, grab life by the horns, do everything with 110% effort, spitfire of a boy. Somehow though, he manages to combine all that with an endearing tenderheartedness that melts me. Thanks for inviting me to all your dance parties, buddy. I've really enjoyed them. Happy Birthday!

Progress

2010-03-08T01:50:00.001-06:00

Highlights of a Busy Week

2010-03-05T11:21:00.001-06:00

After working nights all weekend, sleeping a little Sunday morning, showing the duplex three times Sunday afternoon/evening, and crashing back into bed Sunday night, I sleepily hit the ground running Monday morning. I dropped J off at school, then made it back home to check references, schedule carpet cleaning, gather utility information, tweak the wording in a lease, and the like. All because WE GOT THE DUPLEX RENTED!

Interspersed among all that activity, I was also readying the baby clothes for a local consignment sale that's going on right now. I don't even want to think about how much time I spent on that, but it is done, and we are making money from the decluttering efforts. And going through all of that gave me a chance to reorganize all of Ella's clothes and take inventory. Turns out, she still fits in some things that had gotten buried in the back of her dresser drawers.

Tuesday morning, I was able to paint in the living room at the duplex, while my dad watched the youngers. It was a bit of a risky venture to paint in a unit that had no running water, but I did alright. There was just one teeny tiny place where I tagged the whitish carpet with the blue paint, but I was able to get most of it out by improvising. Spit may or may not have been involved.

On Tuesday night, I dropped the clothing and other kid items off at the convention center and went home with an empty laundry basket, only to fill it back up the next afternoon. Because I consigned some items, I was able to shop early, only made possible because my mother in law was able to watch the kids in between the time I left and when Chris got home. It was awesome to go at that time because it wasn't very crowded, not too many things had been snatched yet, and the checkout lines were not long. When I came in at 6 p.m., Chris couldn't have been more pleasantly surprised at how early it was. I told him I had this shopping at the Rhea Lana sale stuff down to a science. I scored some great deals! I'll do a more detailed post next time about what I found.

Earlier on Wednesday, I did the school drop, got back home to work on the lease, and then met the new renters at the property at noon to give them the keys. I also needed to get their garage door openers working, which was a little intimidating in its potential for difficulty, but I manage to do it right on the first try. Then I went back home, fed and changed babies, and quickly turned right around to go back to get Jackson. I had enough time at home to pick up some toys and other things, and get Ellie down for a nap, before I headed out to the sale.

Yesterday was even busier than Wednesday. School drop off, grocery store, therapy, school pickup, haircut for me--first one in two and a half years, cooking, ack! It doesn't look like a lot when it is written in a short list, but every place requires me to get 2-3 children in and out of the vehicle and keep them alive between van and door--no small order with my Cooper I assure you.

And now, I am gearing up for a busy but hopefully energizing weekend of cleaning and organizing in our house. We are getting ready to host a film crew on Wednesday morning that will be chronicling Ella's I.S. story as part of the upcoming Infantile Spasms Awareness Week this Fall. I asked the producer today if we would be able to see the finished product, and he said he would provide us the link (which makes me think it will be posted on the website) and/or send a DVD. I'll certainly share it when we get our hands on it. I am excited to think that Ella's story might be able to help others with early recognition of IS and quick treatment in order to give many more babies the best chance for optimal development.

For those of you who have made it through to the end of this journal-y post, I offer you a glimpse of the new 'do. Please don't hold me to being able to style it like this ever again, but it's nice to know that my hair can behave when given a little attention.

Stir Crazy

2010-03-01T14:07:00.000-06:00

Warmer weather, please come quickly. I promise I won't complain when I get too hot (at least not very loudly anyway). I really can't take the dreary cold anymore. I'm tired of keeping up with so many hats and mittens for so many little heads and hands. I look longingly out the back door, ponder the dead grass under a gray sky and the still too cold temperatures. Wishing the kids had somewhere to be but underfoot. Some days, I send them out anyway.

In a weak moment, desperate for some fresh air and perspective, I even put the boys in the wagon when the temperatures tipped toward 50 one day last week and pulled them around on the sidewalks in our neighborhood. With Ellie strapped to my chest no less. It turns out that the gently sloping hill just past our street is in actuality a never ending death trap. When I came to my senses and realized just how far I had wandered DOWN the hill and that it was the exact distance I would have to manage going back UP, I turned us around immediately. Under my eleventeen layers and the warmth of a baby, I got all overheated and began huffing and puffing like the Big Bad Wolf only not as cute. As I approached the halfway point, I had the distinct pleasure of walking past a gaggle of high school students that had just gotten off the bus. Awesome.

Stay in school, kids. Because one day, if you study hard enough, you too could be like me.

So you see, I need the warmer weather, so I can keep my wits about me and not scare the neighbor kids with too much reality.

A bit of encouragement

2010-02-26T09:51:00.002-06:00

I feel a stirring to do things differently: to be better at wifing, and mothering, and homekeeping, so I'm not going to sit at the computer screen too long right now.

It's made me realize that it's easy to feel discouraged about the job you're doing. Self-talk can quickly become condemning. It can seem like you'll never measure up to whatever standard you hold for yourself.

When you feel like you haven't done much that is worthwhile today, just remember that you can always get up right now and make it right. Go load the dishwasher really quickly. Or sit on the floor with your kiddos and make a picture together. Hang up all the winter coats that have been piling up somewhere. Or call someone up and tell them why you appreciate them. And smile. I'm always surprised at how quickly my mood changes when I choose to smile.

Don't think about all the missed opportunities of yesterday, just focus on the ones available to you today!

The Duggars and the Tiger?

2010-02-19T12:30:00.008-06:00

Back in 2002, Jim Bob Duggar was a candidate for the U.S. Senate here in Arkansas. It was my first exposure to him and his rather large family. At that time, they had a mere 13 children with another on the way (and I had exactly zero, fyi). I remember thinking then that they were certifiably nuts and shared this opinion whenever the topic of their family came up.

But something made me revisit that snap judgment I'd made all those years ago. I actually met the Duggars in person a while back. (By the way, they're lovely. Through and through. Seriously.) And it got me thinking. It seems a simplistic concept, but I saw them as real people for the first time, not just fodder for discussion on Facebook. People with skin, and feelings, and hurts, and joys, and tough choices to make. Just like me.

Immediately, I felt sheepish and contrite, and I've never forgotten the lesson I learned that day.

Which brings me to the current Tiger Woods saga. While the media and the world at large seems to love a good scandal, I can't help but think of the person(s) at the middle of it. To me, it's not that some huge celebrity had a fall from grace which gives us the right to opine and poke fun ad nauseum, it's that a man was unfaithful and his marriage and children have suffered as a consequence.

Many would say that he "brought this on himself" and that "he's getting what he deserves." It's a knee-jerk reaction, and it's tempting. I get that, and I've said it about others in the past. But when I think about having to say that to Tiger's face--when I see him as a person and not a celebrity, I pause and realize that he is a man in need of the saving message of Grace. Again, just like me.

So when we say, with pun intended, "he's made his bed, now let him lie in it," it is in great contrast to what Jesus said about a woman in a similar situation to Tiger's, whose own private failings were made very public business at the temple courts. To her accusers, Jesus said, "If any one of you is without sin, let him be the first to throw a stone at her."

This morning, in between requests to fly like Buzz and refill a cup of chocolate milk here and there, I tried to watch Tiger's televised apology. I did not hear everything of course, but what I did hear sounded like a good start. It is my hope that he is sincere and follows through on his promises to right the wrongs he's done. A real, live family hangs in the balance.

Pictures and updates, now that's different

2010-02-15T23:58:00.001-06:00

The more I look at this picture, the more I love it.

Jackson's hair has gotten unruly in the last couple of months. This is the before picture. I took the clippers to his head right after I took this; it looks much better now, but I forgot to take an after shot. I'll try to get that tomorrow.

Coop has not made it into any recent pictures. He's been too busy flying Buzz Lightyear through the air and running outside eating "ice"--read: dirty snow. Pretty much anything he does, he's going 90 miles an hour to do it. So every shot, lately, has been an action shot. Like this one from last month.

---------------------------------------------------------------------------------

Now for a few updates:

I got the duplex rented this weekend! I showed it six times on Saturday alone, and more than 10-15 times in the last two months, so it's been hard work. It has consumed much of my thoughts too; to have this come to a desirable conclusion, I'm certainly breathing much easier about everything. The renters move in this weekend, which means all of February is not lost and we'll even be making a little rent this month.

Ella is in the process for being evaluated for placement in a full-time early intervention daycare that integrates therapy right into her daily schedule. We've been working on this since December, and I think we are in the final stages of the approval process. We spent the better part of four hours one morning last week getting all the evaluations knocked out.

She already qualifies for PT (since she has documented delays and is already receiving therapy) and has to show deficits in at least one more area in order to be approved. The speech therapist was pretty sure that Ella would qualify for speech, mostly because of her feeding issues--which I think are slowly resolving without any formal intervention--but really didn't think her actual language abilities were truly delayed (which surprised me 'cause she sure is quiet and seems to have no language comprehension at all).

The occupational therapist who saw Ellie said that she was probably just on the line and may not actually qualify for OT. I had told the developmental pediatrician earlier in the morning that I didn't think E could transfer a toy from one hand to the other--which is a benchmark skill for her age and would definitely qualify her, but as I and the OT watched her she managed to do just that. I've since realized that she had been doing it for a while now, and I just hadn't made note of it.

Last year, the company that makes ACTH (the drug that got rid of Ellie's spasms) started an Infantile Spasms Awareness week. I blogged about it here. Feeling rather strongly about helping to get the word out on the importance of early symptom recognition and treatment for IS, I googled around a bit to find the name of the man who was heading up the Week and emailed him. His name is Mark, and he runs a PR company, by the way. He emailed back within a few days and said he'd love to include our family in future events. Much time passed before I heard from him again, to the point that I'd kind of forgotten about it all.

Then Mark called me up last month and asked me to tell him more about our experience with IS. After he listened to me for a while, he mentioned a few opportunities to share our story with others, all of which sounded pretty exciting. With a few more phone calls and emails back and forth and getting the details all lined out, the first opportunity is coming together quite nicely.

Next month, a camera crew is coming to our house for a few hours to interview us and take some pictures of Ella to be included in future events about IS awareness. Not only do I hope to stress the importance of early access to treatment, I also want to share a story that, though still unfolding, has had a good outcome so far. Much of what you find when you research IS on the internet is grim and scary, but I don't think it is very balanced. I always want to leave room for hope.

Now if you'll excuse me, I have some house cleaning to do.

Jackson really has my number lately

2010-02-09T16:33:00.000-06:00

I mean the boy is not even five years old and already has me fairly well figured out.

Apparently, he's noticed that I like a little TV. Take this morning for example. I am sitting in the recliner in the living room, feeding Ella and enjoying the peace and quiet. Jackson comes in, notices the TV is off, and questions, "Why are you sitting there doing nothing?" I go into one of my pre-packaged mom-versations that can be called up at a moment's notice about how we don't have to have the TV on every waking moment of our lives and how it's good to unplug every now and then. He briefly studies me as though I've sprouted a second head, and then shrugs it off and goes on with his day.

A little later, we are preparing to leave for a dentist appointment. The clinic we use really couldn't be farther away from us and still be considered "in the next town." In addition to that, I am anticipating that the still slick roads this morning will add an unknown amount of time to the trip. So I am trying to hurry my bigger kids into the van, while quickly buckling my daughter into her carseat in the hopes that we can get there on time. Jackson asks, "Why are we in a hurry to everything?" Doh! I decide honesty is the best policy and therefore respond thusly, "Because Mommy has a problem with time management, son." "Oh."

Pictures I've been meaning to post

2010-02-08T11:05:00.003-06:00

These are our gingerbread houses from Christmas. The one on the left is Jackson's, the one on the right is the one the boys "helped" me with. I probably should have either: a) decided to let them have at it and let it be what it would be or b) put it together while they were sleeping. As it was, having them there and trying to keep the gingerbread from getting completely destroyed was a little much for me. But I thought Jackson would get upset if he didn't get to help, and I also don't think he would have been happy if it didn't turn out like a house, and I don't know how to make gingerbread walls weight-bearing again once they get broken.

I wanted to make sure and get the kids out in this snow right after New Year's because we'd already missed the Christmas snow due to traveling for my Grandma's funeral. Little did I know just how many other opportunities we'd have since then. *typed as it snows even now*

This little boy loves his sister. Can't get enough of her. Has a special face and voice (and octave) just for her. Wants to go get her when she wakes up. Brings her toys when she cries. Kisses her on the head and tells me about it. I think the feeling's mutual too. She's always trying to touch him. Just look at that adoration on her face.

There's an ongoing game of chase in our house. The boys pretend that I am a monster who will tickle them if I catch them. They ask me to "tickle me, momma," and all I have to say "Raaaaawwwwrrrr" and start running after them and the game is on! Sometimes I pick Ellie up to "get" the boys. She loves this game. I'm carrying her as I snap this pic, in fact. I'm nothing if not multi-talented. :)

Even though I'm not always excited about playing, I always change my mind and am glad I joined in when I see these faces. Monster-tickle-chase won't last forever, you know?

Fuddy to the Duddy

2010-02-02T14:11:00.002-06:00

Sometimes, I pause to consider what I have become.

Like when I use a completely scientific and therefore totally believable Facebook app that rates the top words in my status updates from last year as "sleep" and "nap." Awesomeness.

Or when I realize that the Best New Artist of the Year category at the Grammys may as well be called "A list of people/groups you've never heard of." Though to be fair to my thirty-something-year-old self, I have never exactly been up on what the kids are listening to these days.

(Can't you just hear me shaking my fist out my front door, and shouting, "You pesky kids, get off my lawn!" It's not that much of a stretch, is it.)

It's alright; I'm fairly comfortable with who I am. It's just that I used to be cooler somehow, and I mourn the loss of that coolness just a little bit.

For example, I used to have opinions about things other than which diaper brand prevent leaks best. And I certainly read a fair amount more than Olivia Forms a Band or Dora Goes to the Beach. Occasionally, I even had the latest in fashion, when I bothered to pay attention that is. (I was ahead of the curve in the Doc Martens craze, but I hung on to it for dear life and only closeted my last pair for good a few years ago).

Hm. I don't actually sound that cool, even in trying to make the case for myself.

I definitely used to be able to talk about things other than children, and birth stories, and sleep habits, and discipline. Once upon a time, I saw all the latest movies. Often in the theater even. None of which were even remotely animated. I could speak knowledgeably about plot devices, and the Hollywood It couple, and quote the most quotable lines. TV was another passion. It took dedication, but I stayed up on all my favorite shows without the help of a DVR. I knew the very moment that Rachel finally kissed Ross, and I painstakingly watched SNL every week monitoring it for the next awesome character or sketch. I loved anything with Dana Carvey, Mike Myers, or Chris Farley in it.

Now I just feel old. Most of pop culture is clearly no longer playing to my demographic. I can't stand a single show on VH1, save my one guilty pleasure in Celebrity Rehab. MTV's not much better. Jersey Shore might as well be The Real World part 43 to me a.k.a Yet Another Show with Drunken, Pugilistic Idiots. I've never watched The Bachelor other than pieces here and there, ditto for Dancing with the Stars, and even my Survivor cred leaves much to be desired.

I'm actually okay with being a little out of touch when it comes to inconsequential and silly stuff like that. But one thing I'd like to do better is to be more well-rounded and approachable when it comes to what I can talk about. I am more than a mom, and I need to strive to talk about things other than my kids. Sure, I love them to pieces and think they are some of the smartest, funniest creatures to ever walk the Earth, but that doesn't mean I should lose all sense of the rest of the world around me in my fervor to be their mother.

Another day, another doctor's appointment

2010-02-01T14:40:00.000-06:00

Ella had a follow-up appointment with her neurologist, Dr. B, today. Most of the time was spent answering questions about Ella's progress and whether she's had any abnormal movements since the last visit (two months ago).

Around the time of that appointment back in November, you might remember that Ella had started to have some odd facial movements, and I thought I'd seen her do some involuntary head drops as well. Because of that, Dr. B increased Ella's Keppra dose, and gave us the charge to video anything abnormal, so that she could look at it. During the first part of December, we continued seeing some stuff, but it was hard to try to capture it on film. There was about a minute of repetitive, stereotypical mouth movements in mid-December that I videoed and forwarded on to Dr. B. Not knowing for sure what she was looking at, she referred us for an EEG (which as you probably know we've since had a short and a long one but were unable to catch any odd movements during those recordings).

Since that time, anything subsequent to that has been even more subtle and/or brief, so there really hasn't been much there. Chris sees things occasionally, but it isn't sustained or problematic. I've been saying that if Ella is doing anything seizure-wise, it does not seem to be interfering with her development, and Dr. B agreed with me on that today.

Dr. B. didn't have the report from the most recent 24-hour EEG last week, but her nurse began working on that today, so hopefully I can see it for myself soon. She said that she'd only seen a few spikes on the right during the 4-hour EEG in December, consistent with what the resident read to me at the hospital, which was "a marked improvement over the EEG from earlier in the year (the one in June that sent us to Children's in the first place)."

She referred us to the local genetic clinic today. Again. She had tried to do that previously (I didn't know that or I would have been asking about it), but nothing came of that, so it had to be redone. Fortunately before we left today, we even got an appointment scheduled with them, which is progress, but it that isn't until May. I probably will call periodically to see if we can be worked in to a cancellation slot or something.

Finally, there have been plans in the works for a while now regarding Dr. B moving away. Originally if memory serves me, she was going to leave at the end of October last year, which was later bumped back to the end of this month. Today, I asked for an update on this from the appointment scheduler, and she said that she'd just found out this morning that our doctor will be here through the end of April. I'm not sure what is calling her away, but selfishly I'd love to keep her as long as she's able to be here. She knows Ella's history and is a very capable physician. From what I understand, the current plan to replace her consists of a rotation of doctors, which means we'll have to start from scratch with each appointment. Perhaps Dr. B is hanging around until they can come up with a more permanent replacement. . . That would suit me just fine.

On praying and believing

2010-01-26T14:50:00.001-06:00

Praying for renters for our duplex makes me feel a little sheepish.

You see, everywhere you look, someone is enduring considerable financial hardship. All it takes is to remember the suffering of the people of Haiti to bring this concept home. In comparison to losing everything to one of the worst natural disasters in modern time, our situation where we've gone without a renter for a few weeks isn't nearly as dire. In essence, I buy into the lie that there are "big" or "small" prayer requests. So, I approach God like He's an overworked and spread-thin sovereignty of limited resources, and I realize that even as I pray for the thing I so desperately want, I've already made it a foregone conclusion that I'll be disappointed. Because I don't want to put God in a box where He must answer my requests in the affirmative in order for me to put my faith in Him. (Which is why I get so weird when someone tells me that God can heal Ellie; I know that He can, but I don't require it of Him. But I've yet to fully understand myself on this point, so I'll leave it for another time.)

But I think it gets to the bigger issues of whether I feel worthy for His blessings and whether I believe He answers the prayers of some unassuming somebody like myself.

Over the last couple of years, I've done some study on what the Bible teaches on prayer. More than once, I've landed in Luke 18 at the Parable of the Persistent Widow. For me, it is always a message of comfort and an encouragement to continue praying. If even the unjust judge will yield to the repeated requests for justice, how much more will Our Father who is perfectly just honor our persistence?

Luke 18

The Parable of the Persistent Widow

¹Then Jesus told his disciples a parable to show them that they should always pray and not give up. ²He said: "In a certain town there was a judge who neither feared God nor cared about men.³And there was a widow in that town who kept coming to him with the plea, 'Grant me justice against my adversary.'

⁴"For some time he refused. But finally he said to himself, 'Even though I don't fear God or care about men, ⁵yet because this widow keeps bothering me, I will see that she gets justice, so that she won't eventually wear me out with her coming!' "

⁶And the Lord said, "Listen to what the unjust judge says. ⁷And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? ⁸I tell you, he will see that they get justice, and quickly. However, when the Son of Man comes, will he find faith on the earth?"

Friday update, a day late

2010-01-23T09:45:00.001-06:00

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.

After all that venting, I'm gonna go get rested up. I've been battling fevers, coughs, and aches since Tuesday, and it's catching up with me. I'm feeling really run down and have no strength. I'm glad to have the weekend to recover.

Thursday night update

2010-01-21T23:11:00.003-06:00

We're here at Children's Hospital for the first night of what I hope will be a short visit. Ella's drifting off to sleep in her crib as I type. She has been such a good sport so far. Just really playful and laid back, which has been so nice. The only fuss she made was during the EEG hook-up itself. That was seven or eight hours ago, and so far no abnormal facial movements have been observed. The event button is here, just waiting to be pushed. I asked the pediatric resident if they were gonna keep us until an event was recorded, but he couldn't say for sure since it would be up to the neurologist. The nurse later said that they have kids "sit here for five days waiting on something to happen." So my hope is that we can capture an event and that it can happen sooner than later.

I also asked the resident a question that has been burning in my mind since Ella's four-hour EEG right before Christmas. We never really had EEG confirmation of ACTH's effectiveness after she finished her course of treatment, though it was assumed since the spasms went away, so I asked if there was any evidence of infantile spasm-like activity (called hypsarrhythmia) on the most recent EEG tracing. He said it was best left to the interpretation of the neurologist but he read went ahead and read the dictation to me anyway. It started out by saying, "this is a mildly abnormal EEG." Already I was encouraged because the report from her very first EEG last summer was (and I don't think I'll ever forget these words) "very abnormal and worrisome." It went on to say something about noting epileptiform activity in the right frontal lobe (which is where her brain abnormality is), mostly during sleep, that does not have any clinical correlation--in other words does not manifest as an observable seizure.

That's about all I know so far. I expect to see the neurology team in the morning and will surely know more by then. I'll update after that. For now, I'm heading to bed. Goodnight!

To Little Rock. . . again

2010-01-21T01:36:00.004-06:00

I should be packing. Correction, I should be sleeping and already packed, but I have a habit of cleaning my house in anticipation of any upcoming trip and today was no different. But rather than packing, here I sit, trying to capture a few thoughts about what tomorrow brings.

Ella's long-awaited 2nd 24-hour video EEG is finally upon us, an appointment more than 6 weeks in the making. I am a mixed bag of feelings about it all. Relieved that we've made it to this point without any apparent acceleration of (possible) seizure activity. Nervous that they might keep her until they see her latest type of abnormal movement on EEG--because these events are actually becoming increasingly rarer. Ready for the final word on a potential metabolic problem. Looking forward to get started on genetics testing but worried that it might keep us there for longer than we otherwise anticipate and scared to think that something might come back abnormal. And then there's the fact that I have to leave my kids and husband behind; this is definitely the worst part for me. I'm sad for our family, but I know we will all be okay.

One thing's for sure: for several reasons, we gotta get home as soon as possible. Chris only has two days he can take off, which would be Thursday and Friday. Our boys can only go so long without their momma. And on the work front, I am scheduled for a CPR class on Monday, and if I miss it, I might not get to work until I make it up.

It's funny to me that this all still feels like a transition, like we're traveling toward something but haven't arrived. Upon hearing her story, a lot of people ask me what Ella's prognosis is. My answer is usually the same, "No one knows for sure, but we have a lot of hope for her." I keep wondering if the physical delays Ella has are transient and surmountable or if they will come to define her. When will we know? Do we even want to know? Does this weekend of tests bring new diagnoses? Will they change how we proceed?

I am looking forward to this in many ways. I want as much information as possible, even if it's hard. The more we know, the better prepared we can be to give her the best chance for optimal development. If love were enough. . .

A couple of house-keeping things: internet access is kind of funny at Children's. Unless it has changed substantially and if my memory serves, I'll be able to post to my blog and read your comments through email, but I won't be able to reply in the comments here. My blog is linked to my facebook profile, so you can keep up with me there, but I won't have access to facebook otherwise. I will get email notifications about facebook posts and comments so I know if you're reaching out, but again I won't have any way of replying during the time we're in the hospital.

I'm hoping we'll be home before the end of the weekend. There's a lot that has to happen to make that work out, but it's certainly do-able.

p.s. To clarify, as far as I'm concerned (though no doctor has confirmed this for me), the abnormal movements Ella is exhibiting do not look like infantile spasms to me. This is good news. I'll be asking specifically about what the EEG shows just to be sure. If that's the case, then Ella's gone nearly seven months without spasms. That's so exciting!

Scenes from a birthday bash

2010-01-19T14:02:00.001-06:00

Ella had some help with her candles.

She enjoyed her cupcake, at least the icing part anyway.

'Course, she liked the wet cloth we used to wash her face even more.

Book winner

2010-01-16T13:00:00.006-06:00

True Random Number GeneratorMin: Max: 2Result:2

Congrats to David! I will bring the book with me when we come to Little Rock next week.

Happy Birthday, Ella Claire!

2010-01-15T10:28:00.002-06:00

Happy 1st birthday, Sweetheart! I can't believe you are already a year old! You complete this family in ways I couldn't have imagined. You have such a pleasant and easy going personality, and you charm everyone you meet. This year has had its challenges and heartaches, but you have taken it all in stride. I am so proud of you. I am looking forward to many more years of milestones and miracles. I love you, LaLa!

Helping Haiti

2010-01-14T14:06:00.001-06:00

The devastation in Haiti is heavy on my mind and heart. After the earthquake on Tuesday and seeing evidence of it's utter destruction, it's easy to feel like there's just too much need and that one person can't possibly make a difference. But add the efforts of many one-person's and you've got quite a movement.

I encourage you to DO something. Give something. One person can't do everything, but everyone can do something.

Here are some links to donate to a few trusted organizations that are working in Haiti even now:

Samaritan's Purse

Compassion International

Mercy Ships

Doctors without Borders

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If you do give or have already given to the relief efforts in Haiti, would you consider visiting Kelly's Korner and leaving a comment to let her know? She and her husband will give $1 to Compassion International's disaster relief fund up to $1000 for every person who comments to say they have donated (it can be to any organization working in Haiti, not just Compassion).

My favorite memory from Christmas this year

2010-01-13T10:12:00.000-06:00

He's still only four. And does typical four year old things most of the time. But sometimes Jackson surprises, even astounds me, with his tender-heartedness.

For Christmas at our house, Santa got the boys matching presents; some of the pairs of gifts weren't exactly identical but they were very similar so as to hopefully minimize the potential for feuding. As I understand, it was hard for Santa to know which present to give which boy. One of the pairs of presents was a Sheriff Woody doll and a little green man, both from Toy Story. Since Cooper already had a small Buzz Lightyear figurine (which was originally Jackson's by the way)(and especially since a bigger Buzz was on the way for Coop), Santa determined that Jackson should get the Woody doll while Cooper got the little green man.

Within seconds of opening the Woody doll, Jackson couldn't even enjoy it because he was having to fend off his brother's grabs and Oo I want that's. Jackson wanted the doll too, that much was clear, but he knew that Cooper wanted it more. And do you know what my sweet boy did next? Jackson willingly handed it over to his little brother saying, "Here you go, Cooper, we share it." That night three weeks ago was the last time Jackson got to hold his Woody, and he has yet to demand it back.

Book giveaway

2010-01-10T17:58:00.008-06:00

From the back cover: "Author Tom Davis encourages us to move beyond words and become Christ to those in need. Filled with remarkable stories of hope and mercy, Fields of the Fatherless will inspire you to love 'the least of these' and discover the joy found in becoming the hands and feet of Christ."

When I signed up to be a part of the Megaphone with 1,000 Voices, a movement from the Children's HopeChest to spread awareness of their work with orphans in Africa and Russia, I was given the opportunity to give away a book written by the founder of HopeChest to one of my blog readers. It all comes full circle for me because a free book is how I became aware of the organization myself.

To enter this giveaway, all you have to do is comment and answer the following (taken from author Anne Jackson): Imagine a world where you had the power to eliminate extreme poverty. What would you do and how would you do it? What does it look like to you?

Comments will close on Friday, the 15th, at noon. I'll use random.org to pick a winner.

Banana Cake and an upcoming giveaway

2010-01-09T11:13:00.011-06:00

Come by the blog starting tomorrow to enter for a chance to win a free book!

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(A post in which I type "bananas" more than I have in all my previous posts combined)

(dedicated to my sister Amy ;)

Earlier this week, at the beginning of what was reported to be yet another round of winter weather, I ran to the grocery store in the middle of the night, wondering how long it would be before I would leave the house again. I stocked up on staple items as well as lots of ingredients for yummy treats. If I'm gonna be stuck at home for days on end, there shall be sweets! In that effort, I decided to get two bunches of bananas. I guess I was thinking about using them for banana bread or something like that.

The problem with bananas is getting them to the exact stage of ripeness necessary when I have the time and energy to bake with them without overshooting said ripeness by a week or two, but I'll get back to that in a minute.

With bananas still in the back of my mind (and the clock ticking on using them), I checked on my peeps on Facebook yesterday. A friend's momma had just updated that she was baking a banana cake to keep her kitchen warm. And I immediately thought: "Oooooo banana cake!" Followed shortly thereafter by, "Wait, I don't know how to make banana cake."

I asked her for the recipe that she was using, but I found that I didn't want to wait. (She graciously posted it later, and I have saved it for future use). So I went to allrecipes.com and found a really easy recipe, and because I had indulged my sweet tooth at the store, I had everything I needed to make it. Love that! Before I jumped right in to it though, I decided to check my America's Test Kitchen cookbook just to see their banana cake recipe offering since everything in it is always so tasty. It was a bit complicated (shocking, I know), and by this time I was ready for CAKE DARNIT so I went with easy.

The problem persisted that my bananas were not even the least bit ripe yet, not even a hint of a brown spot. But they had lost all their green at least. In reading the comments on the recipe I had picked (which I always do to make sure I avoid any common pitfalls of following some random person's recipe), I talked myself into just using the bananas I have as is since more than one person said the cake turned out just fine with fresh bananas. However, under the banana cake section in the ATK cookbook, they talked about the importance of using overly ripe bananas for the sugar and moisture they add, AND they shared an easy way to ripen them. So that's what I did.

After all that, here's what I ended up making:

1 yellow cake mix

2 very ripe bananas*

1 tsp. baking soda

1 tsp. cinnamon

*To ripen fresh bananas (no green): place them in the oven for 10-15 minutes as it preheats. The peels will turn dark brown/black, but the fruit will be just right

1. Preheat oven to 350 degrees.

2. Prepare cake mix per package instructions

3. In a separate bowl, mash the bananas and mix with the baking soda and cinnamon.

4. Combine banana mixture with cake batter until smooth and pour into a greased 9x13 pan.

5. Bake for 35-40 minutes at 350 degrees, testing for doneness using a toothpick.

6. Allow to cool (though we couldn't wait) and frost with cream cheese icing.

Variations to #6: mix equal parts banana pudding and whipped cream for a topping, or you can even leave it plain--it's certainly moist enough.

BONUS: Because this has bananas in it, I was able to justify having a piece for breakfast this morning.

New-fangled technology

2010-01-08T16:15:00.002-06:00

This is less of a post and more of a question really. I am rather fascinated with all the newness of blogging and the internet at large, and I often think about what "the rules" will be even ten or fifteen years from now, rules that haven't been written yet and will probably only be discovered by trial and error. I was thinking about what it will be like when my children are older and become aware that this blog is out there for them to read. I am not overly personal, I don't air out all my grievances here, but I do write of very real things at times. Will I want my children knowing all the nooks and crannies of this time in my life? And I try not to overshare with respect to them either, but certain stories and pictures that are cute now because they are young may be embarrassing to them when they are teenagers and beyond.

So, when your kids are older, will you let them read your blog? If the answer is yes, does that inform how you blog now?

A few of our favorite things

2010-01-05T13:33:00.002-06:00

Watching the kids open presents for Christmas this year was a welcome salve to a wounded heart. It was good to have the distraction. The boys were so excited about everything and even offered some unprompted thanks along the way. Jackson was especially pleasant this season. On Christmas evening at my grandparents' house, he got a pair of footy racing PJs that he particularly liked. He said, "these are so nice!" then he asked me to help him put them on right away; upon his return to the room, he went around the circle letting everyone feel for him/herself just how soft they were.

This is not a comprehensive list, but I wanted to share pictures of a few of the gifts that we are really liking around here.

Jackson got this glow board from his Grandma Lolah & Grandpa David. It has pictures you can trace (Toy Story for us, of course), and a light system that makes the different layers of picture glow at separate times. Very cool!

Grandpa Charlie made this doggy for Cooper, and I love it. I wish you could see this little guy in action. His wheels are set to make him wiggle back and forth as he moves. So cute! It took me a while to realize that it was in Arkansas colors; I only figured it out after my nephew from Michigan opened his own maize and blue dog.

I'm including these pictures of the toy Grandpa Charlie made Cooper last year. Isn't he talented? More and more, the homemade toys and presents are the ones that we cherish most.

This is the present that we let Cooper open first at my grandparents' house. Once he saw it, he wanted it out of the box immediately and after it was finally extracted ("Mom's opening my Buzz." A few minutes later, "Mom's still opening my Buzz."), he really didn't show much interest in any other gift for quite a while that night. To say that the boy loves all things Toy Story would be putting it mildly.

Both of these toys are big hits with Ella. Big buttons, fun music, flashy lights? Check, check, check!

Finally, I got a hat that my friend Anita crocheted for me. I'm not sure I'm cool enough to pull it off, but it is so pretty. I tried to take a picture of myself wearing it, but let's just forget about that series of failed pics and go with this one.

What were some of the favorites gifts you or your kids received this season?

In my head tonight

2010-01-04T23:44:00.006-06:00

On the Ella front, no news is no news. It's just waiting and more waiting right now. We're (still) waiting to hear when Ella's 2nd video EEG at Children's will be (It's been a week since we first learned that another trip to Little Rock was warranted; I called the clinic again today for a progress report but didn't hear back). We're also (still) waiting on the interpretation of some abnormal lab results as well; they could mean nothing other than reflecting normal dietary fluctuations or they could signify a potential metabolic problem, and last we heard our neurologist was waiting to hear back from the geneticist before making a final determination on that. Finally, I haven't mentioned this previously but we're also waiting for an intake appointment to see if Ella qualifies for a full-time developmental daycare just down the road from us; it is an exceptional opportunity for her, and I really hope she'll get the chance to attend. There are nurses in every room and the respective therapists are right there on site too. She's made such progress going to therapy just twice a month, so I can only imagine what she could do with (what I assume would be) more frequent sessions.

The kids and I had a stay-at-home day due to school cancellations for weather, and tomorrow looks to be more of the same. Just before lunch, we spent an inordinate amount of time bundling up to go play in the snow, but fortunately the boys really enjoyed themselves and stayed outside for quite a while, making it all worth my efforts. After learning to pack snowballs and make snow angels and getting wind-chapped faces, we came inside, made hot chocolate and lunch and from then on the big boys were climbing the walls. I told Chris tonight that I would probably enjoy them a lot more in general if I didn't have to try to keep them quiet all the time. Though using "inside voices" is probably a good skill to cultivate, regardless of the presence of a sleeping baby. Hopefully, we can find a few new and exciting outlets for all that otherwise pent-up energy of theirs for tomorrow.

I'm still missing my grandma like crazy and think of her often throughout the day, but I have surprised myself with how well I seem to be coping with her loss. I have several theories about this. As I mentioned in my little speech during her funeral, I had already begun the process of grieving the loss of much of who my grandma was because of the nature of her illness; I had time to prepare for saying goodbye. It's still hard as heck, but made a little easier somehow. I also think my children have been a great source of comfort to me through all this, and they are a welcome distraction from my sadness. And of course the funeral was an incredible experience for me and was key in bringing some closure. Grandma was always asking us to sing for her, so it only seemed fitting that we would do so at her service. Originally, I didn't think there was any way I could get through it, but Amy started rehearsing at the house and we'd learned that the singing would be from behind an opaque window, and so it just made sense. So it was I, my sister, my brother, and my husband singing Blessed Assurance, accompanied by Shawn's wife Kristin on the keyboard. Like good Baptists, we sang the first and the third verse for her. After the hymn, there was a prayer, then I and my dad walked up to the podium together. I said my few words, and then Dad offered an incredibly moving eulogy; parts of it are still replaying in my mind even now. A few of my favorites: "Abe Lincoln said, 'All I am, I owe to my angel mother.' So it is with me." "I loved her laugh. Often is was full, open-mouthed, head back, almost a roar." And "We find comfort that you are finally at rest. Your work here is done. Your life was given in the service of others, and we seek to live up to your shining example."

A tribute to Mildred

2010-01-01T23:06:00.003-06:00

I'm not very good at public speaking, especially if it is of an emotional nature, but I had the opportunity to say a few words about my grandma at her funeral last weekend, and I knew I would have regretted not doing so. Below is what I shared.

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Thank you all for being here today. I'm going to try to get through this without getting completely choked up, but I am Mildred's granddaughter afterall, so you can understand why that might prove difficult.

One of the hidden blessings, if such a thing could be found, of my grandmother's slow decline in health is that I have been able to grieve the many small losses along the way, so that for me, today, though sad, can be about celebrating her life. I don't think she would have wanted it any other way.

I'm sure many of you know that my grandmother liked to collect things. Over the years, she amassed a collection of decorative plates, for example, that the Franklin Mint itself would be envious of. More than things, though, she was an expert collector of people. This is why I believe that her 50th wedding anniversary celebration was, as she told me more than once, the happiest day of her life. Because she was surrounded by her people. In a scope that was ever-widening, she lavished those she called her own with an extravagant love and a fierce loyalty. And we are all the better for it. The epitome of hospitality, she strived tirelessly to make everyone feel at home. And we did. She gave and gave and gave and gave and gave until she couldn't anymore. You know, before she got sick, I never really saw my grandmother sit down for any substantial length of time. It seems that she lived her life in such a way that she needed those four and a half years of rest before God called her home.

A quick update--Mildred and Ella

2009-12-24T10:37:00.005-06:00

My grandma Mildred passed away on Tuesday evening, the 22nd. Therefore, we will be traveling for this holiday weekend after all. I'm in the throes of packing and organizing, so I haven't really begun to process what this loss means to me; I will save the bulk of what I'd like to write about her for another day. I am sad, and I will miss her greatly, but more than anything else I'm just so thankful that she has been such a huge part of my life.

Ella's EEG yesterday did not accomplish what we had hoped. During the four hours, we did not observe any facial movements or other overt seizure-like activity. I'm actually not sure what is next for her at this point (and the clinic is now closed until Monday, so we won't know anything until then). On the one hand it's good that she isn't having anything frequent, but on the other hand she is having SOMEthing going on that we will eventually need to see on EEG in order to know how to treat it. So, she may still need to go back to Arkansas Children's Hospital to be monitored on the video-EEG there.

Just as I was typing this, Ella pushed up to sitting all by herself!! I celebrated like crazy with her, and she starting jigging and jiving knowing that she had done something good. In the face of great adversity, she continues to blow me away with her amazing progress.

Catching you up

2009-12-21T00:52:00.002-06:00

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 tell her 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.

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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.

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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.

Eleven months

2009-12-15T23:08:00.001-06:00

Easy-going,

Laughing,

Loveable,

Adventurous

What are you up to this month, Ella?

You go with me everywhere, including dropping off and picking up your oldest brother at school five days a week. Even if that comes during what would otherwise be a feeding or a nap, you do not seem to mind too much. Especially if I wear you in the Ergo baby carrier.

You've been letting me put a winter hat on your head, and you keep it on too (unlike your brothers did), but you won't leave a headband in place for any length of time at all--it's just too enticing and chew-worthy for you. You wear sizes 12-18 months in most things, and maybe even 18 months in pants, since you are so long. I've been having to get creative with your outfits since most of your pants are too short, so you've been wearing baby leggings to keep your lower legs covered. You are wearing size 3 diapers, but after polling my Facebook friends about it, I think I'll move you up to size 4 next time I go to the store.

You still take a pacifier, you still nurse almost exclusively, and you will take a bottle IF it has breastmilk in it. You seem to know right away if any formula is present, even if it's mixed with breastmilk. We're working on getting you to try other liquids because it's nearing the time when I would like to wean you. You take baby food for a few less-than-happy-about-it moments, and then you're done. You take small bits of soft food, but you tend to get choked on it. I just don't think your ready for much in the way of actual table food. I think you will be evaluated by a nutritionist and/or a speech therapist soon, so maybe they can clue me in on what is going on with your eating. You certainly are not losing weight, though :).

You still wake up during the night to eat, once and often twice. I'd love for this to not be the case, but I'm not sure how to work on it. There's a baby sleep book I'm hoping to get my hands on that will surely give me some ideas; I can't tell if it's because you're sleeping too much during the day, if you're not eating enough solids and therefore are legitimately hungry, if you are just looking for comfort, or if it's some combination of all three.

You have eight teeth, and I love your toothy grin. I think your gumline is changing shape in the back suggesting that perhaps you are working on your molars; if so, they aren't causing you much pain that I can tell.

You are making more noises lately. You have a chew-on/play-with-toys noise--which is kind of an open-mouthed hum with a few "ahh"s and "duh, duh, duh"s mixed in there, and you have a similar humming noise when you are in the process of putting yourself to sleep; the difference is subtle, but I got you figured out, babe :). You grunt and growl at toys as well. And you have a sing-song, squeal-y "da-DA-da" that you use when you are really into what you're playing with and when you hit two toys together, which is a new skill. The boys make you laugh; the louder they are, the funnier it is to you. You have a squeal that is reserved for excited talking, especially if you've woken up in the crib and are waiting to be rescued.

A non-comprehensive list: you sit unassisted, army crawl (faster all the time), grab your toes, bear weight through your feet when you stand assisted, rock back and forth in all fours, and are getting better with your core-strengthening exercises. You've been sleeping on your stomach a lot lately, but in general you're just all over the crib now. It's always an adventure to see where you've ended up after a night's worth of sleep.

Basically, I just love you to pieces. I'm so proud of you and so thankful to be your mommy.

Dec-ehh-mber

2009-12-15T09:01:00.008-06:00

I think I am kind of tired of December. I mean, it's my birthday month and of course there's Christmas, but otherwise I'm not a fan. Mostly it's financial reasons--something always seems to go awry during this time of year. For example, two out of the eight Christmases we've shared as a family were peppered with unexpected layoffs. We've had two major repairs to the heaters at our duplex in the last two months. We have renters that sign contracts in the late Fall, so when they move on, we are left to get new renters at the end of the year. If we are unsuccessful and the duplex stays empty, January 1st demands another mortgage payment whether we have the rent income or not. The hospital tends to have fewer patients during this time for some reason, so I get called off at work a lot more too. I love being home instead of working, but then those paychecks come in and it's just not pretty.

All the while, the world around us is in a fever-pitch of rampant commercialism known as the holiday shopping season. Against my better judgment, I went to Toys-R-Us yesterday to see about some presents for my kids and was quickly overwhelmed by the whole scene. I'm glad I was by myself because I don't think the boys could have handled it. As it was, I had to find a quiet corner just to regroup and take stock of my choices. The one thing that Jackson has consistently asked for this year is a Buzz Lightyear watch. I already found one on eBay, and it--along with a comparable Woody watch for Coop--is hiding in my closet waiting to be wrapped. I've been excited to give it to him because I like getting him things that he asks for. But yesterday, as I was looking at other Toy Story stuff to go with an emerging theme, I saw a way cooler Toy Story watch (in it's own collector's tin even), and I got to feeling inadequate about the watch I'd already bought. I had to talk myself down about it right there in the store. "He's four; he's gonna tear up or lose most anything you get him right now." "He doesn't know about this better watch and therefore won't miss it." "There's no way you can send back the watch you already have, so it'd be silly to buy another one." I prevailed and left the watch for some other parent to buy, but the worry about whether he'll like the one I got him enough remained. It's not like I want a child who requires only the biggest and the best and more of them, but it's hard to separate my good intentions from years of effective advertising and a deeply rooted love of stuff. Remembering the orphans helps; I hope I can keep all this in perspective for their sakes and for my own children's sakes.

Finally, there's the weather. I need sunlight. NEED it. And in December, I only see it for total of about 3.76 hours. That's not even remotely enough. Besides, the sunny days seem to be the most frigid, so I can't really even enjoy them when they're here.

Trying my hand at posting a video

2009-12-11T23:09:00.004-06:00

On the off chance this works (and it will be a small miracle if it does), I'll preface this by saying that it is from a recent Razorback basketball game wherein we discovered Ellie really likes to hear people whistle.

Memory card Monday--Cribz edition

2009-12-07T12:44:00.000-06:00

The only thing constant about our bedtime routine is that it's constantly changing. A few months ago, when I was having a rough time putting my boys to bed and having them stay there, I decided to convert Cooper's toddler bed back into a crib for the time being. It has been better since, with Cooper remaining in the crib for the duration of the evening. Around the same time, after finishing up another brief stint in the tent, Jackson decided to join him there. Love!

Ellie has taken to sleeping on her tummy more often than not, all the while kicking off every last sock and blanket given her.

Here she is, the masterful sitter. She's come a long way in physical therapy and is getting stronger all the time.

Coo Cooks

2009-12-02T23:45:00.000-06:00

I guess it was bound to happen. It is part and parcel of growing up, so I hear. Cooper has been asserting his will and is really wearing my patience thin lately. The transition seemed to occur overnight. One morning, he woke up on the whiny, demanding side of the bed and hasn't been quite right since. I'm not the only one who has noticed, which makes me breath a little sigh of relief to know it's not just me. For instance, I ran into a friend of mine from the New Life Ranch days at Sam's yesterday. My two youngers were in the front of the cart. Cooper was almost completely obscured behind a double-sized box of Lucky Charms and working hard to keep himself there (out of shyness? where'd THAT come from?), when he wasn't fussing about his sister touching him (does it really start this early?) that is. I said, "Can you say "hi"?" He quickly shouted in response, "No!" And sweet, understanding Marla replied, "Ohhhh, you're two, aren't you? I have one of those at home."

This is new territory for me. Jackson didn't have The Terrible Twos until he was three, and even then I'd consider them merely Mildly Troubling Threes. Though I have vague memories of not enjoying his fits of stubbornness or tearfulness over the slightest thing, it just didn't seem as big of a problem as Cooper's strong-willed, demanding, sullen ways of late. Like that's his default mode now. Makes me sad. I find myself saying "Can you just be happy, Coop?" frequently these days. Oh, and because I like hopeless causes, I also can often be observed trying to reason him out of his fits. Yeah. It's going as well as you might imagine it would.

I still have much to find joy in, however. The boy is brimming with life. Notices everything. Is completely fearless (gonna be the death of me, this one). Jumps up and down when he gets excited about something, which is often. Says things like, "Mom, this is 'licious!" "I see uh 'Bama flag (thinks the American flag is called "Obama" and I have no idea how he made that connection, but I think it's pretty smart.) "Look, Momma, it matches. Like the 'nother one matches." "'Kay, mo-ore, Momma." "To fini and beyond!" "Momma, I miss budder." And perhaps my favorite right now 'cause it's fairly new: when I say I love you, he responds with a breathless and very serious, "too." He's quite the conversationalist, employing that same seriousness, when talking on the phone too.

My hair is ridiculous

2009-12-01T15:04:00.001-06:00

A post in which I started to write about my hair but then realized I had a far greater purpose to write about today. Instead of trying to split them up into two separate posts, I put 'em both in here, with barely a segue. 'Cause that's how I roll.

(with lots of parentheses thrown in)

(and some hyperlinks) (sorry, couldn't resist)

First of all, yes, my hair--specifically the bang-al region--has achieved new levels of ridiculousness that must be witnessed to be fully appreciated. I would take a picture to demonstrate this ridiculosity for you, but unfortunately the camera battery is currently charging. So you'll just have to trust me on this one. After the baby was born, my hair did that mass exodus thing that many of you have also experienced, and then it began growing back with a vengeance. The bangs, dear goodness the bangs; how can I describe them to you? Let's go with: part lion's mane and part Flock of Seagulls. As I mentioned on facebook last week, they have achieved near living, breathing organism status; so much so that Ellie is reaching out for them and (what one could only be described as) trying to talk to them. I really have tried to do something about these crazy bangs (on the rare occasion when I've passed in front of a mirror and make the time), but no amount of product has been able to spackle it back into place satisfactorily. So, I have just embraced this new (hopefully temporary) look of mine. I choose to consider it a daily test in living out the principles of 1 Peter 3:3-4--

"Your beauty should not come from outward adornment, such as braided hair and the wearing of gold jewelry and fine clothes. Instead, it should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God's sight."

At least, that's what I'm telling myself anyway.

Second of all, sorry for the bloggy absence last week. We traveled south to visit family for Thanksgiving, and internet access was not available. It was actually kind of a nice break.

Fun fact: Ella's pediatrician could be the stand in for the dad who plays opposite Julie Bowen on Modern Family. (If you aren't watching this show, why not? It's hilarious!) I stopped just short of telling the good doctor that because if he knew what I was talking about he just might have been slightly offended. See, the character is somewhat of a boob, though that's not why I believe there's a resemblance.

And now for the serious portion of this post:

This month, as part of the Megaphone of 1,000 Voices movement, I will be blogging about Children's HopeChest. It is an orphan care ministry, currently partnering with orphanages in Africa and Russia, in order to give these special children "confidence to fly and a safe place to land." My participation in this all stemmed from reading a based-on-real-life-can't-even-fathom-living-this-way novel that I won last month. The book is called Scared, and it focuses on one hardened journalist's journey to AIDS ravaged Swaziland and a precious little girl who gives poverty a voice. The book is written by Tom Davis (CEO of HopeChest). I will be giving away the copy that I won later this month in my own (first ever) blog contest. And soon, I hope to have information to share with you about another, even more exciting giveaway.

Today is World Aids Day. Prior to reading Scared, I probably wouldn't have given this much thought because the problem seems daunting and what can little ol' me do to help? Well, here's a good place to start. I encourage you to get involved in whatever way you can in releasing children from poverty and the devastation of the AIDS epidemic. Sure, it seems overwhelming, but if even one child benefits from your efforts, you will have made a lifetime of difference.