Let's Do Lunch

I've hit the wall when it comes to lunch around here. Like in a we-only-had-popcorn-and-pudding-in-our-tummies-for-hours-today-until-I-finally-convinced-the-kids-to-eat-a-few-bites-of-leftover-fried-chicken kind of hitting the wall. Because I have been relying on a rotation of three or four things, and the boys are sick of them (and frankly so am I).

So, what do you feed your kids for lunch (or for those who don't have kids, do you remember what you ate for lunch during your childhood)? I'm going for healthy, relatively easy to prepare stuff if possible.

I'm really looking forward to reading your thoughts and ideas!

♦

Just the facts, ma'am

We had a follow-up appointment with Ella's neurologist today. I continue to be encouraged by Ella's progress. A month of seizure freedom and counting! After today's evaluation, Ella is "over the hump" to quote Dr. B and does not have to return for 6 weeks (up to this point, she's been seen weekly by the pediatrician and the neurologist in an alternating fashion).

Ella only has six more days of ACTH injections left, and she has navigated these potentially dangerous waters with minimal side effects--her blood pressure has been high normal & stable, her labwork has stayed within normal range for the most part (blood glucose was a little high last time but her urine dipsticks have all been fine), she has remained infection-free, and even the irritability thing that commonly occurs on steroids hasn't really been a problem for us. I am quite relieved to see this chapter coming to a close, I gotta tell ya.

At our last neurology appointment two weeks ago, I asked Dr. B, "What if the seizures come back?" And really I meant the infantile spasms because those are the seizures that I for sure never want to see my girl have again. (It's not that they're terribly disturbing to see, in fact they are quite subtle and harmless in appearance, but I know that they are absolutely devastating to her development long-term.) In answering that question, Dr. B said that she would not be surprised if Ella had another seizure, nor would she think, "What have I missed here?" because the brain malformation will always be there and is very likely going to cause further seizure activity down the road. However in answering that question, I think she was talking about seizures in general, and not infantile spasms specifically.

So this afternoon, I told her that I understand Ella is at risk for more seizure activity in the future (focal, partial, myo-tonic, tonic-clonic you name it), and I even said I think I could learn to live with that, but what I was really afraid of was a return of the I.S. seizures. She responded, "Well, I think she's doing really well" or something along those lines. I took this to mean that she can't make any guarantees but that she is very hopeful of Ella's chances of no further I.S.

As far as medications go: we are stopping the antibiotic right now, finishing up the ACTH wean which will end next Monday, stopping the Zantac a week after that, and will be done with the phenobarbital after a slow wean lasting six more weeks (too fast and she might suffer withdrawal which could mean breakthrough seizures). At that point, Ella will be down to "just" the keppra twice a day, which will be her long-term anti-seizure med and will be increased as she gains weight to maintain a certain therapeutic level in her system. At some point in the somewhat distant future, we may even have a trial off all meds entirely, just to see how she does. Man, am I longing for THAT day!

With the end of the ACTH therapy, Ella will no longer need blood pressure and urine glucose checks, so I am going to ask that she be discharged from home health next week as well. It is starting to seem like a near return to normalcy is within our grasp.

Additionally, physical therapy kicked off today. Ella will go twice a month for now, and though it is to keep a close eye on her progress, it is mostly a chance for me to learn ways to "provide opportunities" for further development while working with her at home. I think Ellie did really well during her session, especially since she had fallen asleep on the way there and had to be woken up for it. She was a good sport for a long while, but then after about forty-five minutes, she made it pretty clear that she was through for the day. She started grunting and tuning up for a fuss, so I picked her up and snuggled her in my arms. Immediately, she burrowed her face into my chest and covered her head with her lovey as though to say, "Quick, hide me from that mean lady over there."

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I have really good intentions of writing about some of my thoughts and emotions since we've been home from the hospital, and I spend a lot of time thinking about what I would write on such a topic, but it has yet to make it on the blog other than a tidbit here and there. However, it IS coming, I promise.

♦

Perfectly Ordinary

So much is going on with us these days but is for the most part very routine and ordinary. And I don't mind ordinary, especially in comparison to last month's drama, but it doesn't make for very riveting writing.

But that's all I've got to work with, so here goes:

The boys had swim lessons earlier this month. Did I tell you that already? Surely I've at least mentioned it. I thought Cooper hated the first day, judging by the screaming, kicking, punching, etc. But as soon as we got out of the water, kid you not, he said, "That so fun, Mom." He continued to have a good time the rest of the week, sans further fits even, and I was able to recover from all my bruises :). Jackson really made strides (strokes?) in his ability to dog paddle during his lessons; more than once, he was able to swim a short distance with only his swim buoy (and no adults). He really enjoyed the kickboard portion of the lessons, and, after a (re)introduction to it, he told me, "I want to do it by myself." And do it he did. So proud of that boy!

This week, the boys are going to vacation Bible school at my parents' church. The best part is that my mom is one of the VBS helpers, so it makes it easy for (especially) Cooper to go in since his 'Eenda (Linda) is there. We've enjoyed our quieter evenings at home with the big boys gone, but I'm always ready for them to come home. I love seeing them participate in the songs at the end of the night. It looks like they're really having fun.

One of the really great things going on right now: my mom's sister Leslie has been in town (drove all the way from Michigan) for the last week in order to help with childcare and otherwise neglected odd jobs around the house while we manage Ella's rather busy schedule of appointments and screenings. It has been a huge blessing!

Today, while Leslie sat with the boys, I spent all afternoon getting Jackson enrolled in a Pre-K program through the local public school. Though quite a lengthy process (with enough waiting around time that I was even able to breastfeed Ellie uninterrupted at one point), it was well worth it. I wasn't sure we would qualify, but it turns out that we do (it is based on annual income).

I now have a little less than a month to prepare my mommy heart for my oldest to be gone five full days a week. *sigh* I really thought I'd have another year yet, but the program is free (well, we pay for it in taxes, I'm sure) and a really good foundation for school, so it's great that he has this opportunity.

In the interim, I also need to figure out how in the world to get him there on time. Like, every day. Apparently this is something they expect of us. Who woulda thought? :)

In Ella news: seizure freedom continues--more than three weeks now! (And if you follow me on Twitter, you'll realize that I said it was 4 weeks earlier, but that's because I apparently can't count.) She has her six-month well check-up at the pediatrician tomorrow, and other than a home health visit that is our only appointment this week (a nice departure from last week's glut of appointments). Ella seems to be doing really well, and I continue to enjoy seeing her activity and personality. She is a very happy baby who rarely cries and who is usually consoled easily. On top of that, she's very charming. We couldn't be more smitten.

We've been getting a lot of mail this week in regards to Ella's hospitalization(s). Not too many bills that we owe on yet, but we have seen the total owed for Arkansas Children's, and I don't think it would be an exaggeration to call it "staggering." Since it is very likely that Ella will qualify for TEFRA medicaid, which will cover a lot of it, I'm not really stressing about it yet. We will owe money (we are required to pay a yearly premium), sure, but hopefully not THAT kind of money.

Another thing we got in the mail, just today, was a letter of acceptance to the NORD infantile spasms copayment assistance program. NORD is the organization I have mentioned previously that has supplied the three vials of ACTH that we've used since coming home from the hospital. Up until this point, they have supplied them under "emergency" status, but going forward we are now officially approved for a year's worth of support. It is unclear how this would work considering our insurance never approved "their portion" of the tab, but fortunately it is a moot point since we already have all the medicine we need to get us through the remaining weaning schedule that Ella is on. Even so, it is good to know we are covered anyway. I cannot say enough nice things about this organization; I have no idea what we would have done without their assistance. As I've mentioned previously, ACTH is kinda expensive (gross understatement).

Wanna see what all the fuss is about? One vial contains only five milliliters of ACTH, and it is no bigger than my thumb.


Here it is in its natural habitat.

♦

Chunkity Monkity

Yesterday, Ella turned six months old. We marked her five-month birthday with a trip to Little Rock followed by a week-and-a-half hospital stay, so just being home for this one is a welcome change.

But the fact that she is doing so well on her medication, while staying seizure-free and showing no signs of delay (according to the official report from the physical therapist) is reason to rejoice on her half-year birthday!

A welcome treat for us: as the phenobarbital goes away, Ella's personality is really shining through. She squeals, kicks, rolls back-to-front and front-to-back repeatedly, and smiles like a champ. Even the home health nurse who had seen Ellie on Monday mentioned the change during her visit today.

I mean, just look at her, isn't she wonderful?

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Cause for praise

We had a really good appointment with the neuro today. I am so encouraged by Ella's progress as Dr. B sees it.

As I mentioned previously, Ella met criteria to start weaning from the ACTH last Friday. She has been seizure-free since June 25th, even while on the lower dose for five days now. Dr. B said we could continue to decrease the dose once every seven days until E's off of it completely. She had mentioned this as a possible weaning schedule at our last visit, so I had already calculated how much more ACTH we would need (geeky nurse much?). It appeared to me that we would be 0.2mL short. I brought this up in passing to Dr. B, and she said that we could wean every six days instead to avoid running out of the med early.

This means that, although our insurance has never approved payment for us, we do not have to stress about appeals and such anymore. What a blessing! And I am so thankful for NORD, the organization that has been providing the ACTHar gel we're using at no cost to us. They have been a Godsend.

Developmentally, the neuro (and the physical therapist that saw her yesterday) do not think that Ella is that far behind. She has most of her 4-month-old skills, but very few of her six-month-skills; however, she will not even be 6 months old until tomorrow. As a precaution though, and to work on her core muscle tone, she will be seen twice a month for PT for the time being. This way, we can catch any problems that might crop up and can learn new exercises to work on at home with her in between visits.

Ella is becoming more vocal and alert & active. Dr. B mostly attributes this to the wean from phenobarb. If that's the case, I'm ready for her to be off the stuff quickly, but keeping this current pace, it will be 8 more weeks yet.

At the end of the appointment, Dr. B. said she wanted to check some more labs "like last time." It reminded me to inquire about how the levels were two weeks ago. She smiled and said, "Everything was just perfect." She shook her head slightly, almost incredulously, then said something to the effect of, "You know, when you think of all the best possible responses to treatment, she's doing it. I wish all my babies could wean so quickly off of ACTH and do so well." Awesome!

It seemed that she was also saying Ella's response was especially good, considering that her IS is symptomatic (and therefore less responsive to treatment usually) due to the brain malformation--which Dr. B reminded me "will always be there." So Ella will continue on keppra after weaning from everything else to cover the very likely possibility that other seizure activity might be in her future. I asked what it would mean if E had seizures during the weaning process, and Dr. B said that she would not be surprised or think, "Oh no, what have we missed here." I think we will proceed with the wean as planned. Our biggest goal, which seems to have been met so far, is to get rid of the really damaging type of seizures--the IS. If other types of seizures crop up, we will manage them as they come (and of course keppra covers a broad spectrum of seizures).

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A busy week ahead

I'm beginning to realize that managing a sick child is very time-consuming. The appointments, the medicine-giving, the phone calls, the researching, the insurance claiming. All that adds up. It makes me so thankful that I can set my own schedule at work.

Just to give you an example, I was on the phone all afternoon Friday just trying to schedule the next couple of weeks. Even with writing everything down, I somehow managed to double-book our 2 p.m. time slot for next Monday, which meant--you guessed it--MORE phone calls.

This week goes a little something like this: two appointments tomorrow, two on Tuesday, and one on both Wednesday and Thursday. To be fair, two of these six are for Jackson, but we still have to juggle and shuttle to get there.

But, here's the good news: my aunt Leslie is coming to town tomorrow (driving from Michigan!) for a while to help with childcare. This is in addition to the childcare that my mother-in-law (and her sister), my sister-in-law, and my parents have been providing during our hospitalization and beyond. It has been such a blessing to have so much support; I can't imagine trying to do this on our own.

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The update: Dr. B, our neurologist, called on Friday to discuss Ella's progress on ACTH. Since Ellie had gone two weeks without seizures, Dr. B gave the go-ahead to begin weaning off of the ACTH. She said it would probably be 48 to 72 hours before we saw any effects from the change if we were going to, and we are right in the middle of that timeframe as I type. I'm not exactly sure what she meant by that--whether she was speaking of a reduction in side effects of the drug or if she meant a return of seizures, I'll have to ask her to clarify that for me at our appointment on Tuesday.

Either way, Ella remains seizure-free. And she is managing well on the ACTH with minimal side effects, judging by her normal blood pressure and blood sugar checks. More days than not, she is purposefully smiling at us now. She is occasionally rolling from back to tummy again, which she hadn't done for a while, and she recently developed the ability to roll from her tummy to her back--her first new skill since the spasms began.

It's all quite encouraging really.

It's a strange dichotomy, though, because for as much as I hope and trust, I'm still really sad that she's having to go through all of this. And I'm still very aware of The Statistics that do not project very good long-term outcomes (which is my euphemistic way of saying that my daughter may end up having profound developmental delays and/or autistic tendencies and uncontrolled seizures etc. etc. etc.). Though I'd like to think I want to know if this will be the case for Ellie, I know that it is best if we just focus on one day at a time. I'm not ready now for such worst-case-scenario news, but God is in the process of refining me and equipping me so that I will be if the time comes.

♦

The Good Doctor

Early in my research about infantile spasms, one name dominated all the expert quotes and research and cutting-edge technology related to this rare disorder. Dr. C from Detroit. The pioneer of a method of mapping the actual "hot spots" in the brain where seizures originate through a combination of PET scans and EEGs in preparation for surgery, among other equally impressive things. He is a rock star in the world of pediatric neurology, like that recent Intel commercial kind of rock star.

And from what I'd heard repeatedly from other parents of IS children, Dr. C is a rather approachable guy. Legend has it that he even responds to all emails regarding infantile spasms, even if your child is not currently under his care.

On a whim a couple of nights ago, I decided to test this and email him. In my note, I briefly described Ella's recent history and then asked seven questions (I aim high:). He had responded before 7am the next morning and answered every single question!

I have such peace of mind after corresponding with him.

For starters, he approves of our current treatment plan--that is, weaning the ACTH because Ella has been seizure-free for two weeks. He also gave a rough outline of where we might go from here if the seizures returned. If the ACTH failed to keep the seizures gone, we would move on to a drug called sabril. (It is not approved in the US due to a pesky side effect of loss of peripheral vision. However, it's a highly effective drug that may work to reduce the possibility of gross motor and other developmental delays, so I think a little vision loss would be manageable when you consider the alternatives.) And if Ella continued to have seizures after both of these medicines were attempted, then she would potentially be a good candidate for brain surgery (specifically a cortical resection wherein they remove the part of the brain that is triggering the seizure activity) since she does have a malformation.

As scary as it seems when faced with the possibility of brain surgery, I'm almost relieved to learn that there are other treatments available if the medications fail. But I like that Dr. C is not pushing for surgery already, especially since surgeons have a tendency to rush to cut without considering other less invasive therapies. He says we should give the medication a chance to work and get her a little older if possible. He did say if there were a worsening developmental delay, that surgery is considered earlier.

He said he'd be happy to see Ella if she was not doing well in the future, and then signed off with, "Good luck, HC."

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I'm incredibly exhausted right now. There's more to be said, but I can't keep my eyes open so I'll finish the story as soon as I can.

♦

Quick update on our girl (a.k.a. no news is good news)

Ella is still seizure-free, for twelve days now. And if that weren't enough, she started to roll over again in the last couple of days. We have come to learn that we must celebrate every smile and coo because it all is so hard-wrought and so precious. That she is rolling over again makes me wanna shout for joy. I can't even imagine what she'll do next--especially when she starts physical therapy and gets off some of these sedating, holding-her-back meds.

Here's what we are waiting for right now. A plan for physical therapy (may be as much as one to two weeks yet). A go-ahead to begin weaning the ACTH.

In the mean time, Ella is being seen by home health nurses twice a week; so far, they have determined that she continues to have normal blood pressures and that her weight has stabilized. Though fears that she might come to resemble the stay-puft marshmallow man are not completely allayed, it would seem that we might have dodged a bullet on this one for now (especially if she's soon moving on to lower dosages). She is also to be seen by the neurologist and the pediatrician on an alternating weekly basis--essentially in one doctor's office per week. She is fast approaching her 6-month check-up also, but I don't think they will give her any immunizations at present for both the recent seizures and most importantly the immunosuppression that would not jive especially with the "live-virus" vaccines that she'd otherwise receive.

My head is bobbing and my eyes are fighting to close, so I gotta end this. But I do have a topic for a prayer request real quick. Please pray that we will find favor in our final appeal process to have the ACTH covered by our insurance. Pray specifically for the insurance plan administrator at the bank where Chris works. Pray that our neurologist would be willing to write a letter demonstrating Ella's need for and improvement on ACTH.

And lastly, from the Hey-Megan-you-do-remember-that-you-have-other-children-to-blog-about,-right? department, I'd like to mention that Cooper had a great time at swim lessons last week and that Jackson is ROCKING his lessons this week. I really am not much on outdoorsy, bug-bitey, water-loggey, sunscreen-smelly activities in my old age, but, man, am I loving the swim time with my sweet boys!

♦

If, Then

Ella's last seizure was a week ago today. With every passing day, the seizures become more and more of a distant memory. I am trying to leave room for the possibility that they may return, but my optimism is making that difficult.

On Tuesday, we met with Dr. B, the local pediatric neurologist who sent us to Arkansas Children's last month after reading Ella's EEG and a phone call wherein she had me describe the spasms Ella had been having. Tuesday's appointment was our first face-to-face meeting.

It was a very productive visit, in my opinion. Dr. B. did a full exam while asking questions about when Ella started what drugs and at what dosages. She decided that our first order of business would be to (slowly) get rid of the phenobarbital because it is not very effective with Ella's type of seizure disorder. She also wants to go up on the keppra, which is effective not only with infantile spasms but other types of seizures as well (it is common to go from IS to other types, see below for more). In explaining herself, she said that she worked with a lot of IS kids in Cincinnati and got really comfortable with maximum doses of keppra while seeing great results.

The other medicine we talked at length about was ACTH. Dr. B. likes the dose that Ella is on and certainly likes the fact that Ella achieved seizure freedom (SF) after one week on it. The plan is to wait for two full weeks of SF and then we will start the slow wean of that as well. If Ella is able to get off the ACTH, then we will also get to discontinue the zantac (which tastes horrible and doesn't seem to do anything for the massive amounts of spitting up Ellie's been doing lately) and the bactrim (a preventative antibiotic to help protect her from illness while the steroids are suppressing her immune system). For those keeping track of the score at home, Ella is currently on five medicines (ACTH, keppra, phenobarbital, zantac, and bactrim). If we can wean from the ACTH and its conjunctive therapies in addition to the phenobarbital, then Ella will be left with only keppra (which tastes quite yummy actually). This would then remain as her long-term anti-epileptic drug (AED) for the next several months/years. If Ella can remain SF for a good while (Dr. B. didn't specify a length of time), then we might even have a trial off of the keppra to see how she does.

That's a bit down the road from here, though.

Right now, we are just focusing on the next few weeks. If Ella can get off the ACTH and continue without seizures, then I think she'll have another EEG to see where things stand from a neurophysiological standpoint. In other words, if the ACTH has really done its job, the actual pattern on the EEG will go from abnormal to normal.

This would be ideal. But we would continue to follow-up with a neurologist for the foreseeable future because the I.S. itself can morph into other types of seizures, and then Ella's brain malformation could cause other seizures as well.

Back to Tuesday's appointment, in addition to the changes in Ellie's meds, Dr. B. also prescribed physical therapy. I am pretty excited about this because I want to be proactive in helping Ella to progress optimally. I'm hoping the therapist will teach me exercises to perform with Ella while at home. I can tell I'm gonna really get into that.

At the end of our appointment, Dr. B. said something that I thought was just wonderful, and I wanted to share it here. It went something like this, "I have seen a lot of children do well with infantile spasms, and I'm going to think Ella can too, until she shows us otherwise. I'm a glass is half full kind of person." Chris kind of chuckled at that. I hooked my thumb at him and explained to Dr. B. that "he's not [a glass is half full person]." And she replied, "Well, get that way, okay?"

So there ya go, even our doctor is giving us reason to hope. God is good!

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