Emma's Grace

Look at that face!  Look at how sweet she is.

What you can’t see is that a year ago I started this blog to chronicle the change in our life that we later learned was Infantile Spasms.

Just looking at that beautiful face, you’d never know the turmoil her brain has been through.

And really, it’s all been happening for more than a year.  In reality, it’s probably been happening since birth, or soon after.  We won’t really ever know how many seizures she’s had.

In the past year, a lot has happened.

Neurology appointments, physical therapy appointments, starting school.

Phenobarbital, Keppra, Vigabatrin, and Topamax.

MRIs, EEGs, and a 24-hour EEG.

Hospital visit #1, #2, #3, and 2 ambulance rides with visit #4.

A misdiagnosis, a living nightmare for a week.  Thank God it was false.  It only made us stronger and thankful for everything thing we have.

Eating, rolling, teeth, sitting.

Flower girl.

1st birthday!

And there’s so much more in between.

Thank you all for following us on this journey.  All of your thoughts & prayers have meant so much and pulled us through in a way I didn’t know was possible.

There have definitely been some sad parts in the past year, but the smiles and happiness have made it all worth it.  I hope you all will continue to follow us in the next year to come.

And I promise to try and do more posts with more pictures so we all can watch Emma grow up.

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We are very blessed at the moment to be seizure free due to Topamax.  One of my IS mommy friends is not as lucky.  Her son’s IS has returned.  Despite her previous encounters with Questcor, they’ve decided to go with ACTH again.

For those of us who have never used ACTH, she was kind enough to post exactly what she was getting for $60,000.  2 vials of ACTH at $30,000 each.  Only 2 vials of a 5 vial run.  Thankfully, she has had less problems this time around and her insurance is paying for it without a lot of hassle.

Go check out the post and look at the tiny vials that cost so much but give so much hope.

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Ok.  So it seems that I’ve been tagged by my friend Danielle.  I don’t do many of these and it’s taken me a while to come up with stuff.  I can talk about my kids non-stop, but ask me to come up with some stuff about me and I totally draw a blank.

Three Joys

1.  My kids laughter.  If I could, I would tickle my kids non-stop.  I don’t think they’d like that though.

2.  Vacation.  From the beaches of the Caribbean to the joy of Mickey Mouse.  Can I go on a never ending vacation with my family?

3.  Ice cream.  If you want to make me happy, bring me a Blizzard.  Oreo, Hawaiian (coconut, pineapple, & banana), mint Oreo, M&M….YUM!!!!

Three Fears

1.  Heights.  Although, this would be better expressed as a fear of falling.  Flying is not a problem.  But being high up where I could “fall” is bad.  It took Jon a few minutes to convince me that he would hold on to me so I could look over the edge at Hoover Damn.  Worth it, but terrifying.

2.  Man-hole covers.  Ok.  So this is a crazy one.  And totally irrational.  But I just can’t walk on them.  I always straddle them or change my stride so I can step over it.  And if I do take a step on it, my heart does a little double beat.

3. Crickets.  Ok.  So I guess I’m not really afraid of them, but they totally creep me out.  Jon laughs and teases me about this one all the time.

Three Obsessions

1.  Grocery shopping.  I LOVE to grocery shop.  I spend at least an hour each week in Meijer.  Up until recently, I did it with both kids.  Now that Matthew in is preschool, I’ve been going while he’s there.  Matthew is a great kid to take shopping and I know he enjoys it too.

2.  Recipes.  Just ask Jon.  I’m forever looking at recipes.  He mentioned the other day, as I made a recipe for the 4th time this summer, how I must really love this dish.  I’m so busy making new recipes that I sometimes I don’t get back to making the ones I like.

3.  My kids.  I’m always wondering how they’ll be when they get older.  Will they be taller than me?  What will they be when they grow up?  Will they get married and have babies of their own?  How will this crazy ride we’re on right now affect them?  It never stops.

Three Surprising Facts

1.  I do martial arts.  A year ago, Jon finally talked me into trying out Nihon Jujitsu.  Let me tell you, it’s fun and terrifying!!!  Does anyone know how hard it is to learn how to properly fall down when you’ve spent your whole life trying to not fall down?

2.  I love math!  I decided to go to college to get a BS in Math.  Math & science have always been my favorites.  Don’t get me wrong, I love to read.  But I read fantasy & sci-fi fiction.  I used to read mysteries & thrillers.  Stephen King was my favorite author when I was in high school.  But literature and history classes were horrible for me.  Give me something concrete like numbers and science and I’m happy.

3.  I love to make chainmail jewelry, cross-stitch, and digital scrapbook.  I stopped scrapbooking because I ended up with so much stuff that I couldn’t ever make a decision.  I started to cross-stitch and fell in love with it.  The tiny detail was interesting.  Unfortunately, I got too busy and ended up stopping.  I have a large, complicated pattern that I’m half done with and really need to finish.  That bug is starting to bite again.  But chainmail has been my latest thing.  I love putting the rings together and the seeing the outcome.  If you’re interested, let me know.  I take orders. 

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I’m not going to write it.  If I do, you know I’ll end up jinxing myself.

Emma can sit on her own, mostly.

Well, I typed it, but then I crossed it out.  Same thing, right?

One of the things we’ve been working on is getting Emma’s core muscles strong enough to support her.  Another thing has been protective reflexes.  The girl is too trusting when she’s sitting there and doesn’t put her arms out to catch herself.  She starting to do it though.  And while I can’t just sit her down anywhere and walk away, I can sit her down and not have to hold her hips steady so she doesn’t fall over all the time.  Our PT told me that by the end of 6 months of age, babies should be able to sit up unassisted.  That’s an average, of course.  We’re almost there and I am so ready to check that off the list!!!

Another big step, Emma not really eating baby food anymore.  For lunch & dinner, she eats all the same things the rest of the family eat now.  Breakfast and just before bed is when she gets her medication.  Those are easier times to give her something that’s been squished up.  So she’s mostly off of it, but it’s still necessary at times. She’s even showing some signs of beginning chewing motions.  Of course, at the moment they’re more gumming motions.

Emma finally has 4 teeth.  She got tooth #3 while we were in California and tooth #4 was just last weekend.  Now she has all 4 front teeth so she looks like a chipmunk.  So cute!!!  Those top teeth were horrible to break through.  I’m hoping the rest aren’t that bad.  Matthew’s teeth came in so easy that most of the time I didn’t even realize they were there.  It hasn’t been as easy for Emma.

For tooth #4, she had a low grade fever on and off all week.  Friday she woke up with a fever and was so tired all day.  She woke up in the morning, and I gave her Tylenol, milk, and barely managed to get the meds down before she fell back asleep.  With the fever and her behavior being off for the week, I called the neuro to check on medication levels.  Dr. McCormick wasn’t in, but I spoke to her assistant.  We decided to increase Emma’s medication to 60mg twice a day.  It had been 45mg in the morning and 60mg in the evening.  This was fine with us.  I don’t like her medication dosage being different.  I know of a couple of times that I gave her the 60mg in the morning and I wasn’t supposed to.   I’d also rather have her at a slightly higher dosage so she has more room to grow without the worry of breakthrough seizures.

Overall, Emma is doing GREAT!!!  We are very happy that she’s doing so well and obviously hope it continues.

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I was a little early.  No sooner did I publish my last post, did I get an email asking the IS community to post Danielle’s latest blog entry.  So here it is.  If you care to, click thru and leave a little love.

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spilling my guts for the President/CEO of Questcor

Mr. Bailey,

I did receive your recent email with the offer to speak about our journey since Trevor’s diagnosis. I chose to take some time to think it over & to seek counsel from trusted friends. The feedback was mixed…as were my emotions. And in the end I never arrived at a peace point in my core. I did not mean to leave my answer hanging. I just wasn’t ready to move forward one way or the other.

But during these ensuing weeks a conclusion has been drawn for me.

We had been seeing some questionable movements from Trevor. So mild even the doctors were not convinced. But I have learned to trust my instinct…and pushed for testing.

I spent every moment of this past week hoping with each beat of my heart that this time my instinct was wrong. That Trevor’s Spasms had not returned. But…as I know you are already aware…a VEEG confirmed our worst nightmare. For the second time in his 17 months of life we are holding our broken baby boy. With shattered hearts. And unrestrained tears.

During the conference call with investors the evening of the JEC hearing you publicly shared that my testimony profoundly moved you. I have heard that you even played-back my testimony for your employees. Changes were promised. Changes that would help parents navigate through the pain of IS & gain access to your medication quickly. You celebrated Trevor’s quick response as a success for your company.

But while you were busy proclaiming success we could not assume the same care-free feeling. We have lived each day since Trevor’s diagnosis with the breath of the IS beast on our backs…just like every other family affected by this disease. Knowing that at any moment our son could fall prey to this devastating disorder again. The odds of 20-25% relapse mean very little to a parent whose child has already suffered a rare disease. And this week proved exactly why.

Allow me to share my second experience with your company…

September 8, 2008 – I received a phone call from a young man representing Questcor’s Acthar Support & Assistance Program. The very first question (and frankly…only) was regarding gathering insurance information. There was no empathy. Not even a scripted “I’m sorry your family is going through this”. It was all business. And that business was making sure our insurance (which is State Medicaid btw) would be footing the bill for Trevor’s treatment. In fact, I received multiple phone calls making sure the correct ID numbers were given.

Late that afternoon he called to inform me that the case was still in the works.

And as of 3pm today September 9, 2008…we are yet in a holding pattern. I have not received any phone calls from Acthar yet today. Although our nurse called afraid that perhaps she had done something wrong to delay the process. I assured her that the process should not be so complicated that she would even have to entertain that thought! At this point I doubt we will receive Trevor’s treatment by tomorrow? And even should it arrive tomorrow everything will still be delayed until Thursday because we need to make arraignments for a home nurse to be present. That will make it at least four days & 160 seizures from submission to injection.

Which leaves me with a very sour taste in my mouth. Similar to the taste I experienced about 8 months ago.

I am convinced we will never agree on the price point of ACTH. I readily admit my bias on the matter. And acknowledge that your experience on this issue undoubtedly exceeds mine. In fact, I can sooner converse in Swahili than understand the many complicated layers of this issue. And yet Providence has directed that we each have our horses in this race. Mine just happens to be a beautiful baby boy.

But there are certainly some areas outside of pricing with which I take issue…

I recently read a statement made by you stating that insurance denial is rare & that NORD is picking up the tab for the families who either do not have insurance or are denied coverage. Of course, again my objectivity is skewed by our personal battle with our insurance company during Trevor’s initial diagnosis.

But if it is true…and if you are indeed committed to making sure that every child in need of ACTH will get it…than I am having trouble understanding why the first priority is ensuring that insurance will be covering the bill? I cannot wrap my mind around why…in a situation as dramatically tragic as IS…your company cannot find a way to ship the drug & work out the payment arrangements later? I have been told that other drug companies have done this. With drugs less vital than ACTH. And you have emphatically stated that insurance denial is rare & that no child will go without this drug due to Questcor’s “generosity”.

And so it seems to me the attitude at Questcor is: Payment arrangements first – vital drug to desperate child after.

Again…I’m feeling the need to wash the sour from my mouth.

You argue that if the drug were not priced where it is today the company would go under…and ACTH would no longer be an option. This of course is not my intent. My issue has never been with the drug…but rather with the pricing & accessibility. I know first-hand that ACTH can provide a miracle.

And Questcor investors were quick to point out – $25,000 to cure her kid & she’s complaining!

Correction…that would be $25,000 PER vial & as I testified Trevor’s course required 5. So in actuality the bill tallied to over $125,000 for the 8 months of seizure freedom Trevor was given. But he was not cured. And yes I am complaining. Or rather…advocating.

I am advocating on behalf of the IS community as a whole. I am advocating for all the beautiful baby boys & girls afflicted with this disease. And those yet to be diagnosed.

They deserve access to this medication. Immediate…affordable… access. A little over “two day” turn around for your company is too long for a family holding a seizure ridden baby.

I am imploring you…look into the eyes of my son.

His beautiful eyes. Eyes that represent every baby living with Infantile Spasms.

Look into Trevor’s eyes & prove that you care. About him…more than the bottom line.

Prove it by making the turn-around time less than 24 hours from submission of paperwork to receipt of the medication. Every time. Prove it by spending more than 13% of your company’s profits to fund Research & Development. Invest more on finding a cure for Infantile Spasms than you do on employee wages. Prove it by under-writing projects like the Epilepsy Phenome-Genome Project which is in progress right now.

I have been told that you are a generous…kind-hearted…caring man.

Now I’m asking you to prove it.

From the heart of a mother…

danielle foltz

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I have made some new online friends who are IS parents.  One of these friends is the mom of a beautiful baby boy named Trevor.  Danielle is her name, and she is a brave mommy.

Danielle has taken it upon herself to fight, not just for Trevor, but for all IS babies.  ACTH is one of 2 front-line drugs for IS (Vigabatrin is the other).  ACTH is expensive.  Too expensive.  ACTH costs roughly $30,000 per vial.  Most kids need a minimum of 5 vials.  That’s a lot of money.  Lots of insurance companies won’t pay for it.  Danielle has been fighting for this to change.

Thankfully, Trevor’s first round of ACTH worked and he became seizure free.  Unfortunately, 8 months later, his IS has resurfaced.

She has helped me in many ways and my heart goes out to her, Trevor, and her family.  It is my deepest hope that ACTH works for Trevor again.  Please go over to her blog and leave a little love.  I’m sure she could really use all the internet hugs she can get.

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Well, I don’t believe that I’ve ever participated in this before.  However, this week is the Backwards Edition of Works for Me Wednesday.

I posted a couple of days ago of a problem I have been having.  Since this is a small little blog about my daughter, I haven’t really gotten many responses to my problem.  I thought maybe, if I participated and reposted, I might get some more help from any Mom’s out there.

Please help me!!!

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Emma’s never been a great sleeper.  Well, I can’t really say that.  For the first 4 months of her life, she slept great!  She’d be awake for a couple of hours, sleep for 4 hours after that.  Rinse, repeat.  All day long.  She slept all night long.

Of course, those couple of hours at a time that she would be awake were full of seizures.  Those 4 hour naps afterwards was time that her brain needed to recover and heal from the constant activity it had just been through.

So really, after she got on the proper medication and didn’t have to go through all of that each day, I couldn’t really blame her for not sleeping much.

But we’re to the point (past it really) where Emma should be going from 2 naps a day to 1 big one.  A typical nap time would be after lunch.  However, this isn’t really a possibility for us.

Our Early On time slot is after lunch.  The teachers have their morning classes, then lunch, and then they have time for us.  This year, on Mondays we have class from 12:30-1:45.  Wednesday’s are up in the air at the moment.  We’ll have a home visit, but I don’t know what time it will be.

Because of this, I’ve tried to keep her schedule so she has regular PT at a similar time.  I don’t think she’d handle it well if 2 days a week she had to stay up and the rest she could nap during that time.  We don’t want a grumpy baby for therapies.  And knowing Emma, she’d just fall asleep during Early On and we wouldn’t be able to wake her up.

So instead, we try and take a morning nap and an afternoon nap.  This week she hasn’t really been sleeping for the morning nap.  At least not long.  And then I lay her down for the afternoon nap.  Again, she doesn’t sleep or sleeps very little.  By the time we’re having dinner, she’s tired and grumpy.

I understand why the school teachers have the Early On session when they do.  And they do a phenomenal job!  But when you’re doing a program for the Birth-3 age group, that’s a typical time for a nap.  Last year, we went to school from 12:50-2:05.  This year will be an easier time for a nap, I’m hoping.

PT on Tuesdays & Thursdays is currently at 1:45.  She goes one day for regular therapy and the other day for therapy in the pool.  We are going to try and see how she handles doing both back-to-back.  That doesn’t help with our naps, but it should make her tired enough to take a nap, maybe even a longer one.

Anyone having a similar problem?  Or have any advice?

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