It wouldn't hurt my feelings a bit. . .

. . .if we never saw another seizure again. I've been trying to temper it so I don't get ahead of myself, but I am starting to get really excited about the lack of seizures around here. It's been almost four days!

Tomorrow, Ella has an appointment with the local pediatric neurologist. I can hardly wait to tell her about Ellie's progress. And get some more questions answered. I've got to get a list together. So, what do you think we should ask? Got any burning questions on your mind?

On the ACTH front, it's obviously doing the trick now; it did take about a week to "kick in," but that's the norm with this medicine. While the two anti-seizure medicines Ella is on seemed to lessen the effects and lower the frequency of Ella's spasms, it was the ACTH that knocked them out completely.

So now, our prayer focus has become finding a way to continue on this medicine from a financial perspective. ACTH is SO expensive. Like punch-your-grandma-in-the-stomach expensive. If our insurance company would play along, we are in contact with an agency called the National Organization of Rare Disorders that has grant money to cover our monthly copays. We are already approved for the first month's copay, in fact. Notice I said "copay" as in, the insurance company needs to foot their portion of the bill too. Our first claim was initially denied, and we are now in the process of appealing that decision. Both NORD and the neurology clinic at Arkansas Children's are working on this with us, which is a big help. And, the insurance company's health review nurse even called to see how much ACTH we had left so that she can inform the appeal board just how time-sensitive its decision is--I love that they see our daughter as a real person who actually NEEDS this medicine, which gives me hope.

In case you were wondering, we are not stressed about paying for the ACTH. True, it's not humanly possible. But we serve a God who specializes in things that are not humanly possible. I don't know how He is going to work it out, but I trust that He will and I will give Him the glory when He does.

Finally, in the can't-believe-how-awesome-our-friends-are department, our community group came over last night and blessed us in some pretty amazing ways. The guys worked on the yard--mowing, weeding, chopping down unruly bushes, while the ladies cleaned and decorated inside. Isn't that unbelievable? As I was driving to pick up the boys from my grandparents last night, I realized that during the clean-up, when our friend Bill took my keys to get the van "done," he had actually had it completely detailed--armor all and everything! It hasn't looked that good since we got it, so thanks for that!

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The Nitty Gritty

Sorry for the bloggy absence yesterday. I'm still trying to adjust to being back home, and my sister's family is in town, so we're keeping busy.

Ella is . . . doing well, all things considered. She had two seizures on Wednesday, one rather long one (by her standards) yesterday, and none at all today. Though she seems a bit "drugged" from all the medicine she's on, Ellie continues to roll over, hold her head up while on her tummy, and sit assisted. She's also maintained her ability to eat, which is excellent considering that many IS babies become failure to thrive and (I assume) must have feeding tubes placed. She is alert though sleepy and while I do get a subtle, purposeful smile out of her every now and then and she occasionally coos for a few precious moments, for the most part she continues to be very quiet.

I am getting better at giving her medicine--both the oral meds and the shot. It might sound crazy, but once I got over the initial disdain of having to stick a needle into my own child, I actually began to prefer it over the oral stuff. It wouldn't be so bad if there weren't so much to give. Sometimes, I have to give her up to 13.8mL in one administration time, which is almost half an ounce!

In addition to what is going on with Ella directly, many other items of business are in the works. We are now set up with home health in order to have a nurse come to our house twice a week to check Ella's vitals and weight, and oversee the daily urine tests that I'll be doing (BTW, I put cotton balls in her diaper to gather the urine I need to test, in case you were wondering). And as far as we know, we are done with our part of the TEFRA insurance (essentially medicaid for patients with chronic illnesses) application, so now we are left to wait until we hear whether Ella is approved--this could take as little as three months, may be more like six. In the meantime, we have been advised to inform our myriad of healthcare providers that we have applied for TEFRA so that they can wait to bill us until we know whether Ella qualifies.

I could devote three or four posts on all that has happened in an attempt to get the ACTH medicine needed to treat the IS. I'll try to keep it brief. To be sure, it, above everything else, delayed our departure from Children's by several hours on Wednesday. As things stand for now, we have eight more doses in our one "emergency vial" left, and after that it is unclear as to how things will proceed. We'll either win the appeal with our insurance company which we began after they denied our initial request for coverage or switch to a synthetic form of the medication (only slightly less expensive, but kind of like how the earth is for all intents and purposes smaller than Jupiter but still crazy big) in the hopes that insurance will approve that instead. If insurance approves our appeal and agrees to cover ACTH, which would be the ideal scenario, we then have the NORD (National Organization for Rare Disorders) grant money that can help with our co-pay. As it is, we received a letter from NORD today confirming that at least the first 30-day supply's copay would be covered, but like I said I'm pretty sure our insurance has to be on board first.

Ella has a follow-up appointment with Dr. B on Tuesday. Dr. B is the neurologist who read our baby girl's original EEG and said that it was "very abnormal and worrisome." I'm so glad she acted quickly to get us to Children's and started us down the road toward a diagnosis. I hope Tuesday will be a productive visit. Ella will also have weekly pediatrician visits while on the ACTH, to make sure her little body is tolerating the medicine.

One other thing I will be working on is looking to get Ella qualified for some sort of early intervention speech/occupational therapy program. After a bit of searching online, I've found a handful of blogs by parents who also have IS children, which has been very comforting and educational. Many of these parents write about having their kids in PT/OT/speech therapy and how effective it has proven to be. Just after a quick query, I believe I've discovered a program through Arkansas DHS that is specifically for babies/toddlers who have an observable developmental delay or who "have a medical diagnosis that has a high probability of resulting in a developmental delay."

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Did that really just happen?

Ella was discharged from Children's Hospital just before 5pm tonight, and we've been home for a few hours now. So glad. Jackson said it best, "It's so good to have our family back!"

After a little down time at the house, I loaded up all the kids to go get Ellie's prescriptions filled--some of which were due tonight. I had some sweet time with my boys at Sonic while we waited. After we got home, I got them to bed without too much fuss on their part, fed Ellie one more time, gave her the medicine, and laid her down as well.

And for now, I'm alone with my thoughts about the past several days.

Surreal doesn't begin to convey how this feels.

Being in the hospital was strange enough, but bringing my girl back home, with a veritable sack of supplies in tow and six medications and referrals to home health and information from the National Organization of Rare Disorders and for that matter a diagnosis is a little much for me. I can't quite believe that this is our life now.

I'll be okay. I just have some stuff to work through.

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Ellie only had two seizures today, that I am aware of anyway. I couldn't watch her in the car on the way home much, and now that I'm home, I am pulled at least two other directions.

I think it is important to try to observe her as much as possible to get a good feel for how well the ACTH is working, but I'm realistic enough to know that I won't be able to catch every seizure now.

We have a follow-up neurology appointment on Tuesday. I'll be giving Ella daily shots of ACTH in the meantime.

The crazy, still-unfolding story of how we will actually be getting the ACTH delivered to our house and who will be paying for it will have to wait for another time.

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Signing off for now

Day 10 at Children's

I'm going to be packing and generally buzzing about, so I won't have time later to post anything, but I have it on good authority that we still get to go home today. As in, it is happening for sure!!

Ellie had five seizures on Monday, which is way down from the eleven that she'd had on Sunday. Yesterday, up until 7:30 in the evening, she'd only had one all day. She ended up having four more, for a total of five yesterday as well. But, the resident already spoke this morning to my fear that we might have to stay until the seizures are completely eliminated; she told me that Dr. S (a.k.a. Dr. Pizza) felt that Ella could go home even with a few seizures. This is because of two things: number one, the main reason to be in the hospital for ACTH is to monitor for adverse effects and not so much getting the seizures gone. Which leads to number two: there's an incredibly convenient Arkansas Children's satellite clinic in NW Arkansas (only 2 miles from our house in fact) where Ellie can be followed and her future dosing can be determined by the pediatric neurologist there on an outpatient status.

In Ella's case being an outpatient means, in addition to regular doctor appointments, that she will be routinely visited by a home health nurse to monitor vital signs and oversee drawing up the medication, I will do daily urine dipstick tests to watch her glucose levels (which means don't have to poke her for a blood sugar test), and she will have weekly lab draws to watch her other electrolyte levels and perhaps other tests less frequently (liver function panel and the like).

So, Ella is still a patient in many ways, it's just that she gets to be one while sleeping in her own crib at home, instead of the metal one that has been hers for the last week and a half.

Well, my girl is waking up, so I need to end this. Next time I sign in, it will be from home! Thank you all for helping to carry us through this crazy, scary, anxiety-ridden time; your words, prayers, visits, gifts and meals have ministered to us in amazing ways.

And to our dear friends, the Felios and McKelvys, there are no words. Absolutely the hands and feet of Christ for us throughout our time here. I know we could not have "done this" without you. We are forever grateful. *blubbering mess*

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Pssssssst. . .

This little girl is sleeping right now, but she wanted me to tell everyone that she gets to go home tomorrow.

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Guess who got her camera cord?

Day 8 at Children's, Day 4 on ACTH

Today has been such a blessing. So many visitors, so many good conversations. But, I'm beat, so these pictures will have to tell their own story.

Briefly, I also want to tell you that Ellie only had four (and a half) seizures today. I think we might be turning the corner now, but I'm trying not to get TOO excited. Ella's new neurologist, hereafter Dr. Sbarro (it's seriously very close to that), came to see her around noon and gave me some good information. First, I asked her to clarify for me whether we were for sure of the diagnosis or whether we were waiting to see if Ella responds to the medicine; she told me that they are fairly confident that Ella does indeed have infantile spasms. Second, Dr. S thinks we can dose E's ACTH once a day instead of twice, which is one less poke and for that I'm thankful. And most importantly, she believes we might be able to be discharged by mid-week! I know I still need to pace myself because it's all based on Ellie's individual progress (which is hard to predict), but I'm again cautiously optimistic.

One more thing, I did a little bit of research tonight and I'll be working on a post about some of the things I've learned regarding IS, ACTH, and other potential treatments on down the road. I have reason to have hope, even in the face of a pretty serious diagnosis.

Now, finally, on to few pictures. More to come soon.

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Boy's best friend

I'm ready for tomorrow. And by that I probably mean ready to go home, but I don't want to dwell on that too much tonight.

Because, tomorrow is a new day. And tomorrow COULD be the day that the ACTH starts to have an effect on Ella's seizures. After all, His mercies are new each morning (Lamentations 3:21-26).

Since I haven't been able to share any pictures that I've taken while we've been here, I thought I might share one that my mother-in-law sent to me.

In the midst of all the craziness that was our whirlwind preparation to get to Little Rock, Chris' parents were gracious enough to take our dog in for the time being. And the boys were understandably sad to watch Grandpa David take their dog away in his carrier last Monday. Jackson said, "But he's a nice doggie, and I love him" and even asked me with tears if we could get a new one, which broke my heart--especially knowing that he didn't realize at the time that Mommy and Daddy were leaving soon as well. To help the boys through the sadness, my dad promised to let them visit Freddie, and he stayed true to his word.

So, here is my sensitive boy and his favorite doggie, reunited at Gramma Lolah's during a day last week.

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Lazy Sunday and a dosage increase

Day 7 at Children's, Day 3 on ACTH

Good morning. We have heard from the residents who report to Dr. I that he will increase Ella's dose of ACTH today, since she has continued to have spasms. It is an increase from 10mg twice a day (or 20mg/day) to 20mg twice a day (total of 40mg/day). Because she has already received her medication this morning, the increase will happen tonight.

I am almost certain now that we will not be discharged by tomorrow at this point. There would be no time to see how she responds to and tolerates the increased dose. So, again, we'll tweak and watch.

By the way, Ellie's IV infiltrated last night (which means the fluid started going into her arm). My mom had been holding her and noticed that she was becoming inconsolable. She quickly realized what the problem was; it was caught early enough that the swelling was rather minimal. The nurse was able to get a new one in Ella's foot on the first attempt, which was a relief.

Ella has only had two seizures so far today. I again am hopeful that a decrease is a step in the right direction. Since she often spits up after her spells, the doctors have started her on zantac twice a day. This brings the total number of medications that she's on to six, if you count the two PRNs (as needed meds). There's something that I worry about here, but it's hard to explain. Let's just say that the sooner we can go home the better.

My main concerns, in particular order, are, first, that we get these seizures stopped. Like, yesterday! That is her best chance for good long-term outcome. My second concern is her increased risk for infection while here in the hospital especially (yucky bugs live here) and beyond. My third concern is the other side effects of the ACTH (I've alluded to some of them like high blood pressure, elevated blood sugar, but there's also just unpleasant ones like irritability, weight gain, acne--which some of you may recognize as side effects of high-dose steroid therapy, and you would not be wrong because ACTH stimulates steroid production in the body.)

And of course concurrent to all those concerns I'm worried about the male contingent of my family who are separated from us. Chris is very capable of being the primary caregiver, as he's done it for 12 hours at a time for forever now, but the stakes are raised now. To give you a real-time example, he was calling and emailing me just a little while ago about a grocery store run he'll be making later this afternoon. Fortunately, Gramma Lolah will have the boys during this very stressful trip :). Thank you to Karen and our community group members for coordinating meals for all my boys while I'm still here in The Rock.

After getting home, my concerns will switch to focusing more on long-term outcomes, still watching for infection, finances with all these medical bills pending, and how to balance work and caring for Ellie (for example, the ACTH shot is twice a day, so if I work twelve hours at a time, Chris will have to give the shot and he's. . . not a big fan of that). I also wonder if she will be able to do Mother's Day Out in the Fall, but I guess that depends on her and whether she is still having seizures by then.

Dr. I. just came in for a final visit before he transitions off Ellie's case and into the clinic starting tomorrow. I'm paraphrasing here: he said we could be a little more conservative about when to increase her dose, but he doesn't want to "waste any more days." I am on board with being aggressive (as long as her body tolerates it), because those seizures have got to stop!

We are so thankful for all the prayers and support.

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Increase medication, observe, repeat

Day 6 at Children's, Day 2 on ACTH

Good evening, everyone!

I am feeling quite refreshed after another good visit with my boys today. My parents and crew stayed at a nearby hotel last night and returned to the hospital mid-morning. Cooper and Jackson got a kick out of the playroom and little cars they could motor around the unit, while I readied myself to go out into the real world for a second time in less than twelve hours. My mom stayed at the hospital with Ellie again while the rest of us (me, Jackson, Cooper, Chris, my dad, my brother and his wife) had an outing on the town. We had a yummy lunch at Corky's BBQ and then took the kids to the Museum of Discovery in the Rivermarket district. It was such a treat. Thank you, Suzanne for hooking us up! Jackson said, "Can we go there again tomorrow?" which is his way of saying, "That was awesome!"

This evening, I could tell that the boys were a little bit more fragile when we said goodbye this time around. And truthfully, I was too. It's just hard when I can't tell them an exact day when I'll be coming home. I was able to send their daddy with them, which should help with their sadness I hope.

My mom is staying with me and Ella tonight, which is nice. She's taken to meeting Ellie's needs for now, so I'm planning on finishing up this post, showering and then doing some laundry.

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On to the updates: Ella just got her third shot of ACTH tonight. According to the doctor, it probably will take up to five days before we know for sure if it is gonna eradicate her seizures, but in my humble (and of course still optimistic) opinion, I think it is already making a difference. Whereas she had well over ten seizures yesterday, I believe she's only had five today and one if not two of those were very small. Okay, she just had another one, so now six total.

We learned that Dr. I will be our doctor for one more day, and then we will have someone new on Monday. Apparently, this hospital rotates its doctors on some sort of weekly schedule. He told us that if he thinks Ella will need an increased dose of ACTH, then he will probably make that adjustment tomorrow, instead of leaving it for the next doctor to deal with. If he increases the dose tomorrow, I can almost bet we will have to be here to monitor her response past Monday (which was the earliest we could have gone home once the ACTH was started).

You may have noticed a pattern (I certainly have) of trying a medicine, watching for any reduction in seizures, increasing the dose, watching for her response again, and then repeat. This is the pattern we will continue to be in for a while I think. I would even hazard a guess that we will be here for the better part of next week even. We may go home earlier, but this way I can pace myself and be pleasantly surprised rather than get disappointed if we pass some arbitrary deadline.

Some day soon, I'd really like to talk about the great advice we are getting and how people who have been down this road before have reached out to us, and then there's also the posts brewing about how much that God is teaching me and the good things He is bringing out of all this difficultly, but for now I think I only have time (energy) to process through the nitty-gritty hospital-y stuff.


p.s. I've got my dad's laptop up and running now (thanks, shawn!) so in the future I'll trying to link websites to the medical terms I've been throwing around lately. And I thought I'd try to post some pictures, but so far I still don't have the cord I need to upload them. I'm workin' on it.

p.p.s. Ella had another seizure while I was working on this, making seven total for the day.

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A plan (and a diagnosis?)

(This will hopefully be brief because I'd like to get back upstairs to our room. So it prolly goes without saying that I'm not proofreading this too closely)

What a day!

Dr. I. came around by 9:30 or so. He decided pretty quickly that since Ella spasms (as he calls them) persisted through the night, even after the extra loading dose of keppra, that we "need to move on."

To that end, we are starting the ACTH treatments. The assumption being that she does have infantile spasms and this condition is caused by the malformation in her brain (a.k.a. polymicrogyria). Ella's first dose of ACTH was tonight. We will be here until at least Monday to monitor our girl on this new treatment plan.

We've learned quite a bit about this ACTH stuff today. First of all, it is a shot given in her thigh, that she will get twice a day for up to three months. It can cause irritability, high blood pressure, high blood sugar, and she is at increased risk for infection because it acts as an immunosuppressant. It is a medicine so expensive that the gal who called as soon as it was prescribed for Ella to discuss helping us apply for assistance told my husband to sit down before revealing just how much it costs. Before we could even begin to freak out about how much money we're dealing with here and within the hour of learning the cost, we had already been referred to two different agencies that help cover medical expenses for patients with rare disorders, and the initial word is that we qualify for 100% assistance. Praise the Lord for answering a prayer we didn't even have time to pray!

We also had a chance to visit the financial counselor today, thanks to the McKelvys who graciously offered to sit with Ella while we went downstairs for our appointment. Page was tagged with both breastmilk and "green poo" and says she feels closer to me now :). And Kevin learned how to warm Ella's milk with the nearly boiling water and swirling it to mix it just right. I'm so thankful that they were willing to endure that for us. Sherry, our financial person, was wonderful and has taken most of the burden of applying for TEFRA (the medicaid program for children with chronic illnesses) off our shoulders. We answered her questions and signed medical information releases and will fax our tax returns next week, and she and her staff will handle the rest, including contacting the doctors for a written report regarding Ella's disorder and need for prolonged treatment--no small feat. We continue to be amazed at how helpful the staff here have been when it comes to assisting us to take care of our girl.

Like I said, Ella will be here for the next three days at minimum, so that she can be monitored for the drug's efficacy and side effects. Dr. I. has started her on the smallest dose because he thinks she will respond well since the anti-convulsants that she's been on have at least been "touching" her spasms (that is his way of saying reducing them). If the medicine eradicates her seizures completely, she will be treated for a full course and then must be slowly tapered off her dose so as to not suffer the ill-effects with stopping steroid therapy cold-turkey.

If she does well, Ellie may be discharged by Monday and would be followed on an outpatient basis at least monthly by the neurologist and with accompanying blood work. (they drew baseline labs today so they have something to compare future labs to, in order to know if her body is handling the medicine well). Dr. I. says that we can be followed in the Lowell clinic for this, which is wonderful news because we were afraid we might have to come back to Little Rock for all those appointments.

If Dr. I has to tweak her dose right away, or if she has any dangerous side effects, we will be here into mid-week or later. And if the ACTH does not stop her seizures after a certain amount of time (which would not bode well for her long-term outcomes), there are a few other medicines we could try. Probably the next one Dr. I. would prescribe is not approved in the U.S. (though it is in Canada and Europe I think?) because it can cause a loss of peripheral vision.

We'll cross that bridge if we need to.

Chris feels we would be best served if he travels home tomorrow in order to start back to work on Monday. As of now, he has exhausted his PTO stores (paid time off). I will obviously continue to stay with Ella for as long as she's here.

The highlight of our day, other than the good financial news, was the visit from our boys. So amazingly good to see them! Cooper couldn't quit asking for hugs, in between his (toy) car rides in the playroom. Jackson planted himself firmly in Chris' lap and began asking a hundred questions about our room and the hospital at large. After I nursed my girl, my mom stayed with Ella to allow Chris and myself to leave ACH for the first time (since arriving on Monday) in order to eat with the kids, my dad, and my brother and his wife who surprised us by making the trip. It was a nice slice of normalcy.

Back in the room, I gave each of the boys a little present I had picked out for them from the giftshop earlier this afternoon. Jackson, the world's best receiver of presents, was very pleased with his yo-yo, and Cooper began to take a swing at his barrel of monkeys almost immediately. After a while, it was time to say goodbye, but they are staying in town tonight. So we plan on meeting up again in the morning after breakfast to perhaps take the boys to a local museum or some other fun (and indoors) activity. They will head back home later in the afternoon tomorrow, with Chris in tow, but if we can figure out the logistics, my mom may stay with me tomorrow night.

As you might imagine, I probably won't have time to post again until late tomorrow night. Hope you all have a blessed Saturday.

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People who need people

We have no new information to report on Ella. We are still waiting to see if she will respond to the increased dose of keppra. The first few hours after the loading dose, she continued to have seizures every hour or so, but that has slowed considerably and the only one she's had in the last three hours was far less pronounced than the rest. Only time will tell if this is a continuing trend, but I'm always looking for the silver lining, you know.

We've had an incredible day of visitors again today. It was so nice to get out of the room for a little while and get in the hot sun with a dear friend and her kids. I loved seeing her babies and how they are growing, and it helped me get a little exposure to children around the same age as Jackson and Cooper. And then, I got to give her a bag of maternity clothes. (When I found out we had to get to Little Rock quickly on Monday, those clothes were the first thing I packed because I knew where they all were and it gave me something to do until my mind could think through all the other planning I had to do.) So many people have been blessing us lately that it felt good to do a little giving myself.

Travis and Amanda Mulhearn (baby Charlotte's parents) came this evening bearing gifts and the wisdom that comes with being bedside to your child in the hospital. So good to see them, I can't even tell you. David and Jennifer, who along with the McKelvys have put themselves officially in charge of all our meals here (aren't they amazing?!), visited again today. I got to see their sweet little Anna and meet Jennifer's mom, which was a nice treat.

Our boys have been well cared for while we've been away. I can't even talk about how much of a weight has been lifted off our shoulders to know that they are doing so well through all this, without becoming a blubbering fool anyway. Needless to say, we are so blessed to have family close by who have literally dropped everything and rearranged their lives to be with our kids. The boys miss us still, but it is not something they have had to dwell on because they are living it up with the rest of the family. Jackson did tell me on the phone tonight not to forget to pick him up when I "get done at the doctor's" so he could give me hugs and kisses, which is so incredibly endearing it makes my heart nearly burst.

Jackson has been such a source of sweetness through this whole ordeal. When I was saying trying to explain where I was going on Monday afternoon, I told him I had to take Ellie to the hospital. Knowing that I work at the hospital, he made the connection pretty easily to ask, "So she can get better?" I said, yes, and he followed-up with, "So you won't cry anymore?" During the same goodbye, Cooper had me give him more than ten hugs and at least that many sloppy kisses.

And speaking of my sweet boys, I get to see them tomorrow!!!! Either we get discharged and I'll go home to them or my parents will drive them over here to see us. I can hardly wait!

Tomorrow is another big day. We are hopeful that Ella will respond to her current medicines, but we are prepared for the alternative. God is good no matter what. And now I think I'll try to get some sleep.

p.s. we were moved to a bigger room tonight, in order to free up the EEG monitoring room for another kiddo. We now have our own shower and enough room for two beds so that Chris can stay here to sleep instead of having to traipse down to the ICU waiting room, or as Chris calls it, The Adult Nursery.

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We know what we do not know

Good afternoon, everyone! Thank you for your continued prayers and concern for our baby girl. We think she's pretty special; even so, it blows us away that so many would give of their time to follow our story.

After the hustle and bustle of tests yesterday, we are glad to have today to recover.

The only excitement has been that Ella had to have a new IV placed (after a few unsuccessful attempts). Dr. I. has decided to load her to the maximum dose of keppra today. He believes it has done her some good so far but she continues to have breakthrough seizures on it. Since keppra is the route we have chosen, he thinks we should go to the max dose before moving on to something else. He said that we should know whether it is working by Friday afternoon (which the calender tells me is tomorrow, can that be possible?).

If by tomorrow afternoon, Ella's seizures have not been eliminated, it sounds like we will proceed with the ACTH treatments and the presumption is that she does indeed have infantile spasms (though she is not a classic presentation of it). If she is started on ACTH, Dr. I says we will likely be here through at least Monday.

As of right now, a little before 3 p.m., Ella has had eight seizures today, and at least three of them have been since the new dose of keppra was given. If they continue at this pace and do not substantially taper off or cease altogether, we pretty much have our answer.

Though Dr. I. is unsure as to the type of seizures that Ella is having, he is pretty confident that he knows what is causing them. On the MRI, Ella's brain showed a lesion in the right frontal lobe (did I really just have to type that?) which is known as a polymicrogyria--a malformation or disorganization of neurons that occurs at the time of brain development. It is often associated with seizures; it can cause infantile spasms but may cause other types of seizure disorders instead.

So we know the likely cause of Ellie's seizures, but now we need to figure out the type, in order to find the proper course of treatment. It looks like we may approach this backwards. By that I mean treating her with a course of meds and watching for a favorable response--that is a reduction in or elimination of seizures--to determine the diagnosis.

There's a bit of a hitch in this giddy-up, though. If she responds favorable to the ACTH, we can determine that she is having infantile spasms for sure (as far as I understand it). BUT, if she doesn't respond to the ACTH, it does not necessarily mean she does not have infantile spasms.

Clear as mud? Yeah, me too.

What we do know is that in the case of infantile spasms better outcomes are to be had from early intervention, within the first month after onset of seizures. We are still in that timeframe. So, we give the keppra it's best chance to work, and by tomorrow we will know if it's doing its job or not.

So again, as it seems this is the way things go, the next 24 hours are critical in determining a course of action.

I for one am ready to be home, ready to see my boys, ready for some normalcy, etc., but I'd hate to go home only to have to turn around and come right back. So we temper our excitement to get out of here with trying to nail down the right diagnosis & subsequent treatment plan the first time around.

I am optimistic, I am thankful for the capable doctors and nurses who are treating my daughter, but truthfully I'm sad too. It's a strange and confusing time. I am trying to stay in the present and not think too far down the road while we're here, but I know that I will need to "cry it out" when we go home.

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A bump in the road

I don't have long to post, since there's a midnight cut-off for the computers in the room, but I wanted to get a quick update out.

We spent the better part of the day having tests performed. Ella managed all the provocation pretty well, like not being able to eat for several hours before the sedation needed to perform the MRI. She could have had pedialyte, but it turns out she hates that stuff. We actually were able to use her disdain for that taste to wake her up enough after the sedation so that she could eat and meet criteria to go back to her room.

Around this time, blood and spinal fluid were obtained so that they could run some tests looking for a posible metabolic disorder that would explain the source of the seizures.

Up to today's tests, just to reiterate, every possible cause thus far has been ruled out (tumor, anatomical abnormality in the brain, and infection, for example). So we are still searching for a source. If none can be found, we will just work toward controlling the seizures as well as possible.

On that front, we were cautiously optimistic that the keppra would eliminate Ellie's seizures, and if so she could go home on this and phenobarb, possibly as soon as tomorrow. But since 5:30 this evening, she's had a total of five isolated seizures. Though they are not as noticeable/involved, we do not think that Dr. I. will consider her disorder controlled on this combination of medicine. The last word from him was that if she continued to have seizures after the keppra was started, then he would go ahead with the ACTH treatment (specifically and exclusively used for infantile spasms). We are in a bit of a grey area, in my opinion, because it seems that the keppra is doing SOME good, but we do not know for sure how Dr. I. will see it. If we do start ACTH, Ellie will be here for at least another 3 days.

This is quite a let-down, but I remain upbeat. She is eating so well and seems to be better controlled on the current medicine than would be expected with I.S., so even if that ends up being her diagnosis, I feel like she has a better-than-average chance of beating the odds and growing out of it.

Pray for wisdom for our doctors as they decide the next steps in her treatment plan, pray that we would find the right medication to fully control (get rid of) her seizures, pray for our peace and stamina, pray for our boys who miss us so much & we them, praise God for our friends and family who are serving us in some big ways. There are no words--"thank you" seems to fall way short.

Better wrap it up here. Tomorrow morning should prove very informative; we expect some results from the MRI and at least some of the blood work and certainly a decision about where to go from here.

Praise: we got to hear Ellie laugh today. I was making a raspberry noise at Chris who said something snarky, and she thought that was pretty funny. I did it several more times just to be sure, and each time was met with the same response. Love that sweet girl!

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The fear and the hope

(I've been working on this since yesterday (6/16) afternoon, but am only posting it Wednesday morning. You know you're in a pediatric hospital when the computer in your room locks at midnight and tells you to go to bed. So, you know what? I followed that advice, and here I am at 6am trying to finish this)

Many of you get Chris' email/facebook updates, so some of this may not be new to you, but this is my attempt to process the vast amount of information we have received today.

The neurologist came to see Ella around 10 a.m. He told us that the EEG was abnormal and combined with our description of her spells that "cluster", he felt that the likely diagnosis was infantile spasms. As inocuous as that sounds, it's a type of epilepsy that is actually pretty terrible (as you might see if you google it). To quote the doctor, "This is not a good thing to have."

(This is the same condition that Dr. B from NWA who read the original EEG suspected. She told me as much on the phone yesterday morning, and my heart just sank. You see, when Ella first started having seizures three weeks ago, I began to do some internet research about them, trying to find a description of symptoms that matched what we were seeing. I kept coming back to infantile spasms. And, truth be told, I freaked out. Especially about the odds--better than 70%--of an association with mental retardation and long-term, profound developmental delay. Yuck. Yuck. Yuck! Pretty much my worst fear of the probable diagnoses. So I quit searching and tried to not to think too much about the what-ifs.)

Anyway, while we were talking to the neurologist (known to me until further notice as Dr. I because that's my best understanding of what his name is) this morning, he asked about Ella's history of these spells. While he did key in on their clustering nature, he was surprised to learn that she had only had isolated seizures since the phenobarbital had been started. He even saw one of these seizures while he was talking to us.

He continued by saying that we would definitely do an MRI, probably tomorrow or even the day after that. He also said that the treatment for infantile spasms is ACTH, which is a course of injections for up to eight weeks. I asked if we had to be hospitalized for the duration. He said that it would be outpatient after the initial 3-5 days of treatment here in the hospital--monitor Ella for a positive response (reduction/elimination of seizures) and any side effects, teach us how to give the shots, and so on. At that time we were looking at likely being here the rest of the week.

I had tried to be prepared for the diagnosis of infantile spasms and meeting with Dr. I made it that much more of a reality. Especially when he talked about the treatment as though it were definitely going to happen. He finished by saying that he was going to have an epileptologist also look at Ellie's ongoing EEG to confirm the diagnosis. We were very sad for our baby, to say the least.

BUT (and this is a big but)

. . .Many things do not add up for Ella to be diagnosed with infantile spasms. For one, she has responded to the phenobarbital to a certain extent, in the sense that it gave her a couple seizure-free days and reduced her spasms from clusters to isolated events. Usually I.S. (my abbreviation for infantile spasms since I'm tired of typing it) does not respond to phenobarb or many of the other anticonvulsants at all. Also, Ella does not show ANY problem with feeding--namely losing her ability to suck and becoming failure to thrive--which is apparently very common in I.S. babies, so common in fact that Dr. R. the neuro who saw her in the Springdale ER thinks that her continued ability to eat so well means that she does not have I.S.

So, a little later in the day (after the IV team started an IV for Ella on the first try--can I get a woot, woot!), the nurse came in with a new anti-seizure medicine to start. I didn't know why we were starting something else but found out it was going to be in addition to the phenobarb (not replacing it). Soon after the IV infusion of keppra was done, Dr. I came back in to say that the keppra was a trial to see if Ellie responds to it; if she does this is a very good thing and likely means that I.S. is not her problem. He also told us that the other neurologist (the epileptologist perhaps?) agreed with him that she didn't have all the classic signs of a baby with I.S. Up until that point, we didn't know he wasn't sure of the diagnosis.

And you want to know where my hope is this morning (6/17), several hours since the first keppra infusion? The seizure that Ella had when the medicine had just started infusing was the last one she's had in several hours!

I asked the resident yesterday evening when we might know if the keppra was working (and therefore likely ruling out I.S.), and she did not have a definitive answer but she thinks 24 hours is a good start.

So, that's our hope, our prayer. That Ella would (continue to) be seizure-free on the keppra for at least 24 hours. We are at least 15 hours and counting so far.

At noon today (6/17), Ellie goes for an MRI under sedation. While still "under," she will have a lumbar puncture which along with some blood work will test for some specific metabolic disorders.

Oh, and right before she goes for the MRI, she will finally get to come off of the EEG that has been running from the moment we got here Monday night. When I found out yesterday (6/16) that E would continue to be monitored for another night, with video and audio and everything, I gave up my modesty and opted to breastfeed her like normal (or as normal as possible considering all the things currently attached to her).

After the MRI, I am unsure of what will happen next. I assume it depends on what if anything is found on the MRI and whether the keppra continues to control her seizures.

I will try to update when we know more.

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No news yet

Good morning, all. Ella rested well most of the night and took her bottles well (I decided not to nurse her while she's on the EEG since she has to be on video at all times. This modest momma didn't want to be on display, so I'm pumping and bottle feeding until the test is over).

As of right now, we've been able to catch 4 seizures (by pushing the parent button) since the EEG began. We hope that this will give the neurologist good information in determining further tests and ultimately treatments we will pursue.

To bring everyone up to speed, yesterday morning the neurologist who read Ella's EEG from Thursday called to talk to me. She said that the EEG was "very abnormal and worrisome" and asked me to describe the type of seizures Ellie's been having. This confirmed her suspicions as to a probable diagnosis. She recommended that we bring Ellie to Arkansas Children's Hospital for more testing. After asking if that was alright with me, she put a call in to the on-call neurologist here. She called back to say that he wanted Ella here as soon as possible ("by four if you can") to hook her up to a long-term EEG, among other things.

So here we are.

Chris and I shared a very small bed next to Ella last night, which was pretty humorous. As Chris said, "I lost my pillow at minute four, so I've been awake for a while." I did a little better than him; I think I got five somewhat interrupted hours of sleep, so I'm feeling almost refreshed in comparison.

Already, we've seen some good friends who live in the area. Thank you David & Jennifer and Kevin & Page for the meals and snacks and for your friendship.

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I'm gonna run back upstairs to be with my girl. We have internet access here, but facebook and twitter are blocked; so we can't post updates there right now. We do get emails when you comment on facebook, so we've been able to read the messages and wall posts so many of you have sent. We appreciate all the prayers and offers to help and the connections with people who've been where we are or are well-versed in seizures & their treatments. Thanks for everything so far.

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To Little Rock

We did end up going to Little Rock this evening. Ella has been admitted to Arkansas Children's Hospital and will be on an EEG overnight. We are to press a button if we think she is having a seizure. We have already done so twice. Hopefully, it will give the doctors a clear picture of what Ella's brain is doing. Ella is not too happy to have her head all glued to wires again, but she has managed well.

We will see the neurologist in the morning and will have more information at that time. There are no further tests ordered yet, but the neurologist from NW Arkansas (who read the first EEG and called me with the results) thought an MRI was likely.

We'll post when we know more.

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Lazy Saturday, the playing-hookie-from-work edition

Ellie says, "Thanks, everyone, for praying for me!"


I got put on-call tonight and then later canceled completely. It's nice to be off, the perfect half-birthday present for me in fact. So, we're just having a quiet night at home. We're mostly dancing and playing air-guitar and leaving the door open as we run outside for the fiftieth time while some of us are rolling around on the floor (see above). It's a good night!

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Ella's Sleepless Day

(Those pictures are just pitiful to me. I am not even posting the two where she is crying because they are almost too much.)

What a champ our little Ella is! Today was her long-awaited EEG. She couldn't nap from the moment she awoke this morning in preparation for the test at 3pm, as they needed her to be sleep-deprived. After all that, upon arriving at the clinic, the many electrodes (a total of 25!) had to be applied to her head and a few minutes of wakeful brain activity recorded even before she was finally allowed to sleep. And then she was only able to doze for about ten minutes in the middle; the test concluded with more wakeful time. Trying to wake her after that measly 10 minutes was quite a task; she was already into a very deep sleep. Poor thing :(.

We were not able to record any undeniable seizure activity during the tracing, though we think she might have had a very small one as the lights were turned out midway through. The neurophysiology technician (the person who administered the EEG, hereafter the NPT) told us that the absence of seizures during the test did not necessarily make it a fruitless exercise. And since we have video of the typical seizures Ella is having, in combination with the EEG, there's a good chance we will get some answers when we visit the neurologist next week. Even if the EEG is interpreted as "normal," there is a wealth of knowledge that can spring from it. She was very encouraging and said more than once that seizures are often well-managed on medicine and many people grow out of them (sentiments we have heard before and appreciate being reminded of).

[On a side note, I'm pretty sure the whole experience is directly responsible for the excruciating headache I am currently sporting. Take a small, unventilated room with strong adhesive and acetone smells coupled with trippy lights, and you've got a recipe for disaster. I asked the NPT how she managed to be around such noxious fumes day in and day out, and she replied that she really didn't even notice any more. I know that ain't right!]

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

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Holding Pattern

We don't have any major news on Ella, still waiting for what we hope will be a very productive and information-gleaning neurologist appointment in eight days. We go for the EEG on Friday, but I don't expect that they will be able to tell us anything right then; we will instead get the results from the neuro.

After the pediatrician upped Ella's medicine on Thursday and a short adjustment period, E went almost 48 hours without seizures. They've started to breakthrough again in the last few days, about four to six times a day right now.

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I wrote the following on my facebook page yesterday:
"I wanted to update, but I don't want to sound despondent or hopeless. I'm actually in a pretty good place right now.

The seizures that she's had since starting the medicine are not as bad as before we went to the hospital, in my opinion. They used to come in clusters and now they are rare and isolated events. This is incredibly encouraging to me.

I think we can manage with just a few breakthrough seizures if that's the best we can get with the medicine, but if we can find a dose, a different med, or a combo of meds that gives her seizure-free days for good, that of course is the goal.

(She's at the maximum recommended dose (mg/kg/day), but her blood level was low enough last week, that maybe there's room to increase it yet?)

I told Chris that I think (and hope) that this waiting period before our first appointment with the neurologist will be the most uncertainty we will experience."

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

Thank you for checking in on us.

♦

Grieving the loss of the "Perfect Child"

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

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

Whoa.

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

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

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

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

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

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

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Ella, briefly

After a short hiatus, Ella started having seizures again on Tuesday night. We went to the lab yesterday so they could draw a phenobarbital level to see where things stand. Our doctor will use this test to decide if Ella's dose needs to be increased and if it is safe to do so. We have an appointment with him this afternoon.

In a life-goes-on kind of way, home life is as normal and mundane and wonderful as ever. The boys are able to provide some comic relief for us in these uncertain days. Just now, as the boys were wrestling, the four-year-old said to the two-year-old, "Your butt stinks!" God bless them; I'm so glad for the distraction and the smiles. Now, if you'll please excuse me, it would seem that I have a diaper to change.

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We are held

The following is an email I sent out today to our community group at church. After re-reading it, I realized I should share it here too.

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Dear ones,

I find it no coincidence that Sunday's message was on community and ministering to one another. We are certainly benefiting from your ministering to us. Thank you all for your prayers, for your support, for your offers to help. You are Jesus' hands and feet to us right now.

Ella continues to be seizure-free on the medication and as vocal/happy/interactive as we've ever seen her. It is amazing! She has a follow-up appointment w/her pediatrician on Thursday, the EEG is scheduled for next Friday (the 12th), and the pediatric neurologist will see her on the 18th. Unless she has any episodes between now and then, the information we glean from the test and appointments will be the next opportunity for updates.

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

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

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

Blessings,
--
Megan

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Ella's Long Day, in pictures

I'm too tired to go into the whole story right now, but as many of you know Ella had a major seizure on Friday morning--after almost a week of what we had been calling staring spells (and now know to be small seizures themselves).

Fortunately, after an overnight stay in the hospital and through the prayers of so many, Ella has had no further episodes since being started on an anti-seizure medicine Friday afternoon.

We now have a big week ahead of us as Ella goes to see a pediatric neurologist and have an EEG (electroencephalography) performed. We hope to have a better picture of what may be causing the problem, though our pediatrician tells us that we can expect the odds of finding the cause to be no better than roughly 50-50. Most importantly, we hope to have a good understanding of where we go from here, especially in the next critical six to nine months.

It is no exaggeration to say that God is using this to draw us nearer to Himself and to each other. And my little girl? I love her so much! I cherish her every coo (it turns out, she had been less vocal and interactive in the weeks leading up to the seizures, hardly cooing at all, but alert enough that we just didn't realize this until she returned to her normal self), pick her up and kiss her at every opportunity, and generally can't get enough of her. I am so proud of her and so stinking thankful to be her mommy.

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Here are some pictures from the slightly more than 24 hour hospitalization following Ella's big seizure. I'll share more of the story in future posts.

Finally asleep at around 3:30p.m. after being awake for eight hours straight (seizure happened just as she began her morning nap followed by poking & prodding by so many hospital staff during what would have been an early afternoon nap)


Ella first (and hopefully only) ambulance ride. After she was stabilized on an IV anti-convulsant, she was transported 10 minutes down the road to the hospital where our regular pediatricians have privileges so she could be observed overnight.






Saturday morning in the hospital. Seeing her in a hospital gown and attached to an IV line made this all the more real for me somehow.


There's the smiley girl I remember!

♦