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!

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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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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.

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

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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