Sermons in Stones

An Open Letter to Jerry Kill, Head Coach of the University of Minnesota Football Team

2013-10-11T01:09:00.000-05:00

Dear Coach Kill,

If I ever have the chance to meet you, I might just hug your neck. And I'd probably say "thank you" if I could manage any words at the time.

See, I am the mother of a daughter with epilepsy. Like you, my Ella Claire has seizures that are not well-controlled by any medications thus far. She has benefited from brain surgery which reduced her frequency, but still the seizures come. And I know that her story is not unique, that some twenty percent of the millions of people who have epilepsy do not respond to any medication currently available. Yet epilepsy is barely a blip on the radar of the general public and is, for the most part, an invisible condition. That is, unless a person has a seizure in public.

When I see you on TV--on ESPN of all places, talking plainly about your very public seizures and the need for a cure and normalizing this poorly understood, barely researched, grossly underfunded condition, I am encouraged and thankful. In the macho world of football, and in our greater society as a whole that often values invincibility and the perception of perfection above all else, you are a breath of fresh air with your vulnerability and unapologetic authenticity. You probably didn't set out to be a spokesperson; you might even be embarrassed by all the attention, and some people have said some very ignorant things about you and epilepsy in general because of your story being out there. But I want to thank you for weathering all that for the sake of the cause.

Your advocacy sends a message that just because a person has seizures, and even if those seizures are not well-controlled, it doesn't mean that they should be disqualified from life. It means that we all need to continue to fight the good fight to find better therapies, to raise awareness, and to de-stigmatize and be inclusive of those who have epilepsy.

I read today that you will be taking an indefinite leave of absence from coaching in order to pursue options for better control of your epilepsy. It is my sincere hope that you and your doctors find a combination that works for you, and I wish you all the best. When and if you choose to return to the sidelines, I will be rooting for you and your Golden Gophers. They have supported you well and are to be commended also.

With sincere thanks,

Megan Daniel

Mom to Ella Claire, 4 years old, complex partial epilepsy

Co-chair, Child Neurology Foundation Infantile Spasms Parent Advocacy Committee

Because I only have one other picture of her on here

2013-01-03T00:12:00.002-06:00

Sweet, silly Corie

Jumping back in with an update

2013-01-02T23:53:00.000-06:00

I haven't posted in almost five months? Surely that can't be right. Time is passing at lightning speed these days, I guess.

A brief summary is in order, but you probably already know that I can't be brief.

Husband and I are still at the same jobs, and we still live in the same house--all records for length of time for those respective categories.

The kids are growing like weeds. "Baby" Corie, whom I've talked about maybe three times on this blog, is already one year old as of December. We expect her to walk any, any day now. Just yesterday, she started standing up in the middle of the floor without holding on to anything. She's the silliest, easiest going baby of them all. Except perhaps when you try to feed her something she doesn't want to eat. Ella is big! She is wearing the same size clothes as Cooper, who is two years her senior. She is so smart and sweet and strong-willed that my heart could just burst. Cooper had a slow start to kindergarten, but now I think he's totally buying into the whole thing. He is constantly telling us what blank plus blank equals and trying to read and write words. Also, he loves to draw (fairly amazing) pictures and love notes one minute and the next minute he is karate chopping all the imaginary bad guys in the house. Jackson continues to love school. He loves knowing how the world works and why things are the way they are, so if you are around him any time soon please be read up on all topics in the world or have your smart phone handy. Ha!

Ella is doing well post-surgery. It's hard to qualify that, actually. The frequency of her seizures is way down from last year, but they still come. She had one this morning, in fact. And there was a time last month when she had two within a few days of each other. She had been going more than 2 months in between previous to that. Her doctors have started her on a third seizure medication. It had been well over a year since we tried anything but medication increases (other than surgery, of course), so I was kind of hopeful for a break from seizures. She is still not at the optimal dose yet, so we'll reserve judgement, but it was a bummer.

Ella is probably going to have more surgery soon--this time to correct what is thought to be a congenital bone defect in her skull that is allowing brain tissue to protrude into the sinuses. It makes her a high risk for contracting meningitis, and we wouldn't have known about it if we weren't dealing with seizures, so there's a silver lining for ya. We are waiting for word on when her appointment is with neurosurgery and will know more after that.

She was evaluated last month for an augmentative communication device, and it was recommended that we get her an iPad because she is already familiar with and shows preference for the platform. My parents graciously gave us theirs, and right away we decked it out with a military-grade case in, you guessed it, purple. Ella is very interested in talking and being understood. She takes comfort in knowing what sounds are and needs reassurance that everything is going to be okay. She squeezes me so tight when I get what she is trying to say; it melts me. I can only imagine all the more trust and love that will come when we get her acclimated to using the speech app to help her make those connections. We are also looking to integrate more signing in our home. She apparently is the poster child in her class at school for signs--she already knows all the colors, hers and all her friends' names (shorthand of course), and several other nouns. It exciting!

The mara-coaster

2012-08-17T15:03:00.002-05:00

Having a child with seizures, and I would say any disease or disorder of a chronic nature, has been compared to both a roller coaster and a marathon. I like parts of both of these analogies.

The roller coaster is obvious with its ups and nausea-inducing drops, dark tunnels, and the pressure of so many G-forces through unexpected turns. But eventually the ride stops, and you get off and go about your merry way. So, this analogy breaks down after three minutes.

The marathon works for a little while because it is supposed to remind you that you must pace yourself through so many trials and tests. You must not let your mind and body sprint through the diagnosis and beyond or you will collapse. But see, in real life, with real things, you do collapse sometimes, and even then you are not disqualified from the race. It keeps on going even if you must be dragged on your face through it for a while. And in real life, we never pace ourselves. We try to outrun the sad stuff or to soak forever in the hot tub of the good stuff, as if we never have to get out. The marathon analogy leaves me wanting too.

It's really some hybrid of the two, but even than breaks down after a while, as do all analogies really.

Words are just words.

And there are times, even for a logophile like me, that words have no meaning. During those times, platitudes and analogies fail, and I just want to be sad in the silence for a while. I'll get over it, sooner than later most likely, and sure I'll "deal," but I have decided to give myself permission to grieve things along the way. And not apologize for the fact that I need to grieve things. I don't think I ever lose sight of the blessings in my life or the hardship in anyone else's, just that for a few moments The Most Recent Disappointing Thing is the worst thing I am currently dealing with.

Yesterday's Disappointing Thing was that Ella had a seizure, her second post-surgery. I already know this: it's all relative because last year alone she had over 80. Prior to surgery we would be celebrating so few seizures. But surgery changed the rules of the game. And now we don't expect any more seizures. Ever. We put her through this hard thing with the hopes that seizures would piss off forever, even though we knew that statistically the chances were good that they may not. But we had to try. And we know that she is way better off now than before. It's just that we're greedy. We want normal and whole and healed. Yes, we may still get that, and we will never stop fighting for it, but sometimes the bumps and twists and turns bog us down for a minute or a day. And I gotta believe that it's okay to not be okay.

Romans 8:26
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.
Holy Bible, New International Version®, NIV® Copyright © 1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide.

Kiddo Update

2012-07-25T01:30:00.001-05:00

I am growing a little weary of this summer--what with it's drought and brown and hot everywhere. I had great intentions to be more structured with our time and to plan at least one big activity per week for the kids. I have gotten away from that lately, and so we are all going a little stir crazy. Five and seven year old brothers tend to either be at each others' throats or really, really hyper and playful. I'm not a fan of either extreme, personally. I have at least taken to implementing a "quiet time" in the middle of the day; sometimes I require that the 5-year-old take a nap, but other days I am content that they be in separate rooms with all TVs and other screens off. They can be "in the real world" and play quietly, as my friend Sue calls it, or they can read, draw, write, create. It has not been as well-received as I hoped, but usually it affords all of us a much needed little time out. I enjoy spending so much time with them, I really do. I get to see all the frustrating behavior, sure; but I also see all the amazing creativity and growth and becoming-a-person-ness too. Several times a day, I hear myself saying, "I like you, Coop." or "You're a neat kid, J." and they agree with me too :). That kid confidence just kills me; remember when we had that?

When Ella gets home from school in the afternoons, sometimes she just adds to the crazy, but a few times "quiet time" is still ongoing, and she and I get a few moments to enjoy each other. She really is amazing. I love how her brain works. She makes connections all the time and never misses any detail. She asks questions, and always wants to be understood. I love it when she nods her head and says, "yeah" when I hear what she has just said and repeat it back to her. It's like she is thinking, "Mom gets me, and that makes me feel safe." She loves to "elp" me do chores around the house. She wants to matter and contribute and be appreciated. Even if it may be a big inconvenience or more mess than help, I never regret letting her pitch in. She is so pure and proud of herself it just makes me burst. If Chris is home, she'll go find him to brag on herself and get a "i-fah!" (high five). Oh and her little run. I wish I could bottle it up and sell it to people who are in bad moods because it would make them feel better about the world in five seconds. Here's just a small sample of it, but really the run that takes her across a room is what I love best, especially if she is running toward me.

This will probably get lost in the middle of the post here, but it has been nearly two months of seizure freedom for Ella! So this is what it's like to really breathe. I know better than to assume that Never Again is a guarantee, but it sure feels like a possibility with each passing day.

And Corie, my goodness, she is such a gift. Really. I can't explain how much joy she brings me. After all the fear and missed milestones with Ella, I just revel in Corie's perfectly normal-ness. At seven months old, she is in that teething, interested in food, pull everything toward her mouth stage. She is very vigorous and pinches with all her might as she's grabbing at things. Earlier today, she got a hold of both sides of my neck at once and dug deep into my muscles--ouch! I love it when she is in my arms and holds on by grabbing a handful of my hair. It doesn't hurt too much; it's just uniquely her thing, and it makes me smile. She loves to bounce! Just look at her in action.

Chris, Corie, and I took a short little trip to Chicago this weekend. Apart from a layover here and there, I had never been there. I must say, the city treated us well, especially its weather. The temperature was in the 70s and 80s as opposed to the triple digits here in Arkansas, and there was a nice breeze blowing between the high rises. Our trip was for the annual IS Parent Advisory Board meeting. Lots of great progress has been made, and I am excited about the prospects for raising awareness and funding for researching a cure for infantile spasms. This year was all about collaboration, as the president of the Child Neurology Foundation and one of the leaders in the Tuberous Sclerosis Alliance joined us for the meeting. Also, because I am a fairly proficient twittererer, I volunteered to run a twitter account for our nonprofit parent advocacy group called faceIS (Foundation for Awareness of Childhood Epilepsy and Infantile Spasms). That twitter account can be found here. I plan to use it to post interesting articles pertinent to epilepsy and IS, retweet informational tweets, and reach out to those on the IS/child epilepsy journey (so I can stop clogging up my personal twitter feed :).

Take care everyone, and do stay cool. God bless!

How is it June already?

2012-06-11T16:38:00.000-05:00

Summer is in full swing. I am mostly busy trying to keep my older boys entertained and gainfully occupied during the days. Ella started back to school a few weeks ago and will continue to attend through the summer. Within a week of returning to school, she was promoted to the next developmental class. For one thing, she no longer fit under the tables for meals nor on the cots for nap time! Also, during the time that she was gone for surgery, the other children continued to be promoted as well, so she no longer matched the developmental level of the children in the classroom she had been in for a year and a half.

Next week, two months will have passed since surgery. We have yet to see any more seizures, so the official count since surgery remains one (unofficially maybe two). Because of that one seizure, we are in the process of increasing the dose of one of Ella's two medications; we have to go slowly to reduce the risk of rash that is common with rapid increases of lamictal. As far as I understand, she is pretty much still maxed out on her Keppra dose for her weight, and, in addition, it is not advised to alter dosages on more than one medicine at a time because then it is unclear which is responsible for any positive or negative changes in frequency, quality, or duration of seizures.

Developmentally, Ella is doing well I guess. This is harder to quantify for me. Physically, she is doing everything that she could always do. She is talking more than she was immediately after surgery, and I would consider her back to her baseline before surgery. She is now able to say more complex things occasionally, but certainly isn't attempting this all the time. A few days ago, she did say "luh you" to me without any prompting. She is very observant and often labels the things she knows in her environment. She gets a lot of pleasure out of being understood, which is incredibly endearing. Sometimes her sweetness just overwhelms me.

I try to include Ella in much of what I do with the boys, but she isn't always able to handle it. Never was this more clear than yesterday, when I tried to take her to the movies. She was not really interested in the show and continually tried to get up and walk around. It wouldn't have been so bad, but I had Corie with us too, so I couldn't really do as much as I wanted to in order to hold her. And any time I reached for her and brought her back to her seat, she would squeal, "Ow" even though I know I was not hurting her (she's learned she gets proper attention with this). Completely embarrassing. Maybe some day she will be able to manage.

Overall, I am happy that surgery is an increasingly distant memory and that Ella is doing quite well.

Mini Update on Ella

2012-06-07T00:35:00.000-05:00

Ella is doing well in so many ways. It's been nearly 8 weeks since her brain surgery. She is getting stronger and more talkative all the time. She seems very aware of her environment. She is showing empathy and spontaneously saying things such as, "I luh you." All very positive.

Unfortunately, she did have a seizure last Tuesday. We were very sad to see it. The difference between one and none is huge. And my mom thinks she saw a minor one 10 days before that even. But if you think about how many she would have had before surgery in an eight-week period, it does make you feel better; I think the number of seizures could have easily been 15-16 instead just of 1 maybe 2. So we will be going up slowly on her seizure medication, and she is scheduled for an EEG at Children's again soon. They tell us that even if total seizure cessation is not obtained, patients who have this procedure respond to medicine whereas before they did not. Let's hope so!

I once again am nearly too tired to keep my eyes open. I will try to post a longer update soon.

A Special Needs Mother's Credo

2012-05-16T22:04:00.000-05:00

I promise to talk to my special child as though she understands me even if I know she does not. There may be a time when she will understand, and I would not want to miss it because of an assumption.

I promise to not be too disappointed if she never does understand something I have said. Because even if she cannot understand some of the complexities of life and language, somehow she still knows that I love her and she loves me right back.

I will celebrate her accomplishments and compare her only to herself.

I will be a tireless advocate for her.

I will do my best to take care of myself. I will shower regularly, have girls nights out, get a pedicure occasionally, and read that book I've been meaning to get to.

I will ask for help when I need it.

I will learn when to let things go and when to keep fighting. I will pick my battles carefully and my friends even more so.

When appropriate, I will take our family on vacations and allow us to experience the world together.

I will not make excuses for my special child nor bring attention to her unnecessarily, even if it means swallowing my pride when she makes a scene instead of trying to defend my mothering skills to judgmental strangers.

I will remain approachable to typical moms. I will not make them feel guilty for the milestones their children are meeting but instead will rejoice with them. I will not scoff if they say that mothering is hard because I know it to be true for all of us.

I will not bother with the impulse toward one-up-man-ship of who has it worse than whom.

I promise to cultivate conversations that do not center around diagnoses, individualized education plans, adaptive equipment, medications and the like. I likely will talk about those things but in moderation.

I will treat everyone with the grace and dignity they deserve and remember that while we may have similar circumstances we do not necessarily share the same opinions. I can only speak for myself and my child. I cannot expect to know how anyone else is thinking or coping.

I will reach out to new moms who are just starting this journey. I will answer direct questions and give my opinions, but I will not liken my advice to that of a doctor nor will I judge them for the choices they eventually make. I will not pretend that this is a black and white world we find ourselves in.

I will practice the gospel of "whatever works for you and your family."

When someone is going through a tough situation, I will refrain from saying, "I know exactly how you feel" and will instead say, "That must be difficult for you."

I will share my special daughter's story without expecting everyone else's world to stop turning as mine did when we got The News.

I refuse to wear a chip on my shoulder or throw myself a pity party.

I will never give up hope.

--Megan Daniel
2012

An update on Ella, from her Grandpa

2012-05-11T14:23:00.001-05:00

This was sent out in an email yesterday, and I thought it was worth sharing here. My dad is a big fan of Ella's.

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

Some of you have perhaps kept up with Ella through Megan’s Facebook page. Others of you have been asking about her. I am a bit behind on bringing you some news [all of it positive] about our precious granddaughter. Thank you for your continued care and concern.

Ella is doing marvelously, I think. She remains seizure-free [25 days so far]. She is still on the same medication that she was on before surgery and that will continue for another year or more, as a precaution. Prior to surgery, she had seizures while on those meds. Megan reports that this is the longest stretch Ella has been seizure free. Since one of the goals of surgery was that she be without seizures, the surgery has to be considered successful.

The “Ella Support Team”, including her “pit-bull” advocate a/k/a Linda, all got home on April 27. Her first days home, Ella was sapped of strength and not real active. She was unsteady on her feet and actually crawled during that time. But as she began to recover her strength, she also recovered more and more of her gross motor skills. I spent a good part of a wonderful day with her this past Saturday and I would say that she is back to her previous levels, insofar as her physical movements [she isn’t jumping off the ottoman—but I would have been fired as the sitter if I had let that happen so soon after surgery]. She still has some residual weakness on her right side, all of which is as was foretold to us by the doctors. Although her smile has a slight sag on the right, it is still gorgeous and warms my heart every time. Speech is also coming along—right now she doesn’t have much to say, which again is expected. But her efforts are clearer and include more syllables. Earlier this week she said “Hi Daddy” to Chris and that is a first.

We marveled at the expertise of her medical team—so dedicated, so skilled and so caring. The anxiety during the time leading up to the surgery gave way to the realization that she was in great hands. While it was difficult to watch her have to undergo the various procedures and to see her deal with the discomfort, we recognize it was necessary and thankfully, short-lived. We anguished that she was going through so much without any warning or explanation of what was being done to her. Still, we had to have faith and hope that the days ahead would indeed be better and that this all was required to insure a more promising future for her.

She was such a good patient and was [and is] such a delight to be around. We cannot be certain of what her future holds, but believe it is brighter. Ella is special for many reasons and will continue to be so. We look forward to the next chapter of her life—this unwritten book is going to be a real page turner.

Charlie

24 Days

2012-05-10T00:07:00.000-05:00

That's how long Ella has gone without a seizure. This is a pretty big deal around here because it is a new record for her--it is the longest period of seizure freedom for her since the seizures returned over a year ago.

I can't remember if I mentioned it on the blog, or if I did whether I explained it very well, but originally Ella was scheduled for surgeries in late April instead of on the 12th and the 18th; it became necessary to move her surgery up when Dr. Sood's schedule changed. And right after we were told that the surgery dates were going to be almost 2 weeks earlier, Ella went 23 days without a witnessed seizure (there were a few instances during that time that it seemed like she'd had a seizure before we went to get her up in the morning, based on her level of energy and awareness.) She did not seize again until the Monday before we were going to leave on Tuesday. It started me in a pattern of doubting our choice to proceed with the surgery and worrying about what we might do if somehow the meds had finally started working or something. This would probably have been ideal in terms of avoiding a major brain surgery, but as our neurologist assured us, "When there is an abnormality in the brain, the seizures always come back eventually." Which is his way of saying, surgery would likely be necessary sooner or later.

So how is Ella doing? I've said it before, and it's still true that each day is Ella's best day yet. Her walking is more steady every day, and she's been practicing her jump. She's still fairly clingy and less willing to walk, but I think it will come in due time. She is using more and more words spontaneously, but she is very selective about who she will talk to and what she will say. She is still quieter than before surgery, but often the words she does say are clearer or have more syllables. She's even saying some new words and phrases. Like "babybug" (ladybug) and "peeky book" (peek-a-boo, where "book" is pronounced "boo" with a k on the end)Today was so reminiscent of the days before surgery when she would make the effort to label everything she saw. I love it! Her voice is just the same as before too; for some reason, I worried that surgery would alter it in some way.

I've spent more minutes than I care to admit on the phone with doctor's offices and insurance companies and therapy providers. And I really have nothing to show for it yet. Ella is languishing at home, not yet receiving any therapies, but no one seems to be able to speed up the laborious process of getting her into it.

I am signing off for now; can't keep my eyes open.

Ella Walking--9 days after surgery

2012-05-01T21:59:00.001-05:00

(I don't think I've ever successfully uploaded a video to my blog before. I hope this works.)

(Update: A quick recheck and it turns out I do have some videos on here already.)

The Next Chapter

2012-04-28T11:23:00.001-05:00

I am sorry for not updating more frequently after Ella's second surgery. Our days were filled with visits from all kinds of doctors and therapists--neurologists and neurosurgeons and rehab doctors and residents, music, speech, physical and occupational therapists; we were also busy trying to get Ella to eat, talking about which meds we might be able to use to fight her nausea since there is a national shortage of many of them, trying to figure out if she was in pain and therefore not eating, and of course cleaning up after her when she wasn't able to keep things down. And when I was not ministering to my brave big girl, I had a baby girl who decided that eating every two hours all day long would be a good idea. On top of all that, our internet connectivity at the hospital and Ronald McDonald House was fairly inconsistent, so even if I had the time or energy to update, I couldn't get online sometimes.

I wanted to let you know that we are home now (see I told you I haven't been updating). The last week has been filled with waiting and hoping and then finally some amazing progress. Early in the week, we were told that Ella would need 1-2 weeks of inpatient rehab, which was disappointing to say the least. We were so desperate to be home by the end of the week as we had originally been told. But by the next day, Ella was already doing too good to go to rehab. Amazing!

It took the coordination of a lot of people, but we were able to leave the hospital on Thursday and even change our flight to get home on Friday. We actually changed it twice based on our doctors' best guesses about when we could be discharged.

There is more to say and celebrate and explain, but for now Corie has started crying and the other kids are needing me and I am back in the throes of motherhood. It is good to be home--very, very good.

Thank you for following Ella's progress and praying for her. We still have much to do to get her to her optimal level of development, but we have been given renewed hope that she can progress well without the threat of seizures. Time will tell and God will carry us through whatever may come, but as of today she's been seizure free for 13 days so far. What more could we hope for?

Love to all,

Megan

The Razorback Athletics story you won't see in the news

2012-04-24T12:25:00.001-05:00

I have been holding on to this story for a couple of weeks, and I feel that now we are over the major hurdles of Ella's surgeries today is a good time to share it.

We left for Detroit on Tuesday, April 10th, in order to be there in time for Ella's appointment with the neurosurgeon the next morning. We had to drive from Springdale to Tulsa to catch our flight, but we were feeling very blessed to receive tickets from the Miracle Flights for Kids organization and therefore didn't mind a little extra trip. Right after we got to the ticket counter to check in, what appeared to be the entire Arkansas Razorback softball team lined up behind us. Having played softball in college myself (go Warriors!) and being a fan of all things Razorback, I thought it was cool that they might share a flight with us.

Because we needed "extra assistance," we got to board the plane among the first group and got seats right up front. As the plane continued to fill up, a seat just across the aisle from us remained empty until near the end of boarding when a guy about my age, dressed in a Razorback track suit, chose to sit there. We pointed to the empty bin above him when he began looking for a place to put his bag and made small talk as the crew performed their pre-flight tasks. I assumed he was on the coaching staff, and he confirmed my assumption when I asked him. I told him about my glory days of college softball (ha!), and he humored me by listening. He shared that this was his first year at Arkansas and talked about his own child who was around Ella's age. Ella played with us and waved dutifully as we chatted.

After a while, he asked why we were going to Detroit. See, I never know how much of our story to share with strangers. I come from a long line of oversharers, but I am self-aware enough that I can usually reign it in. People are nice enough, but they really don't want to or need to be burdened by all the details of Ella's medical history of seizures and delays and so on. However, I don't like lying to people even if I don't know them either. So as a compromise, I chose the more innocuous and not untrue alternative explanation that we have family in Ann Arbor. See, that's technically true (Hi, Amy!), and therefore my conscience is clear :).

As we continued to talk, he asked whether there were flights to Detroit directly from Northwest Arkansas. I explained that, yes, there are, but we were flying out of Tulsa because we had gotten assistance from Miracle Flights and were at the mercy of what they had available. The Miracle Flights discussion begat a discussion about Ella's upcoming brain surgery and pretty soon I had shared the whole story anyway.

A little while later, the coach stood up and reached for where he had stowed his bag. Before we realized what he was doing, he handed us a red shirt that said "HOGS softball" and appeared to be the perfect size for Ella. He said, "Please give this to her. We'll be praying for her."

We thanked him profusely, and before long the flight ended and he and his team made their way off the plane to catch their next connection toward Kentucky. Just after the team deplaned came the announcement that Athletic Director Jeff Long had decided to fire head football coach Bobby Petrino for his indiscretions. It did not have the same blow for me that it probably did for many other fans because our family knows first hand that upstanding character is the rule and not the exception in the personnel and student athletes that remain in the program.

We'd like to thank Coach Coy Adkins (we googled him) for his kindness. As soon as Ella is feeling up to it, we plan on attending an upcoming game and thanking him in person. Go Hogs!

Recuperating

2012-04-20T07:40:00.002-05:00

Well, we made it through the first post-op day after the second surgery without any major incidents yesterday. As with the first surgery, Ella is sedate and sleeping a lot. She's been nauseated a couple of times and hasn't even had a sip of water, though she still agrees to take her oral meds--her continued compliance with this astounds me every time. That combined with her sweet nature and her stable vital signs earned her the label of "the best 3-year-old crani patient I've ever had" from the night shift PICU nurse.

When she is awake, Ella's eyes seem a bit vacant, but I know that she understands some things because she is responding appropriately. She was a little less than thrilled to be touched or kissed yesterday, so I had to love her from afar. It seems like she is not feeling so put-offish this morning; I already got more kisses in 5 minutes than I did all day yesterday.

We made it to a regular room right at shift change last night, just as my husband predicted and approximately 9 hours after the transfer orders were put in. I so wished it would have happened quicker. It was a frustrating day for me, just with the back and forth I had to do to keep Corie on her very frequent breastfeeding schedule while trying to check on my big girl in ICU, where babies are not allowed. Ella's entourage of me and Chris, my parents, and my mom's sister Leslie were able to manage, even during the hour-long, twice daily lock out of the family waiting area for cleaning purposes where we were relegated to wait for her transfer. (I don't want to sound complain-y, but this is a very family-unfriendly policy)

Ella doesn't want to eat, she doesn't want to watch "Doob" (scooby doo), and I can't really lay next to her, so almost all of my go-to methods of comfort are out. She did seem to be interested in playing on my phone, but then mostly just watched as I did the work of playing.

Ella has not said any words yet, and, while part of that is just the nature of being sedated and sleepy, I also know that it is a result of the specific type of brain surgery that she had. The doctors were clear that they would be removing her primary speech center (in the left parietal lobe) because it was very involved in her seizures. They said that she would lose the ability to speak temporarily but stressed that it would come back as her right brain takes over. It's anyone's guess how soon that will happen. A few parents who've gone through this told me it was about a week before they heard even one word from their children. This seems unbearably long to me. My heart aches to hear her sweet voice again. I kinda hope that she doesn't notice that she can't talk so she won't freak out and that we find other ways of communicating in the mean time.

The support from friends and family during this hospitalization has blown me away. I am stayed by your prayers and humbled that so many people care about my girl's welfare. She's pretty special to me, and I am glad I get to share her with you.

2012-04-19T06:11:00.001-05:00

Good morning from Detroit! I realized that I had updated my Facebook friends throughout the day yesterday, but neglected to do so on the blog.

I am rushing to go see my girl now, so I'll be brief in this post, but I didn't want to leave anyone hanging.

Ella did as well as we had hoped during surgery. The doctors got all the abnormal tissue in the frontal and parietal lobes, and when they monitored her on EEG during surgery, there were no more seizure spikes! She has always had spikes before, so I can't tell you how excited I am to learn that she doesn't now. There is no guarantee of no more seizures, but it is the best possible outcome for this surgery.

And now the recovery begins. The next few days will be hard (perhaps on us more than her), but we are held by the amazing results and the continued support from our family and friends.

I should probably be sleeping

2012-04-17T23:41:00.001-05:00

But I find myself wide awake. Tomorrow is a day that we have been moving toward for a long time now. Ella's seizures came back over a year ago, but really since the diagnosis of infantile spasms when she was a baby the possibility of brain surgery has always been in the back of my mind.

The fears that I've had about handing our daughter over to the surgeons tomorrow morning have come and gone for the most part. Our journey thus far has not been what I expected, and in some ways harder than I imagined, but oddly enough the releasing her to surgery was one of the easier things I've had to do. I feel the prayers and support of so many who are following our journey. I trust these doctors immensely--these three men who have overseen Ella's care so far and their amazing team of doctors and nurses here.

We are grateful and hopeful, and we couldn't be prouder of our girl.

Today was more difficult for Ella than the previous day. I think she is feeling pretty good, for the most part, but I'm pretty sure she is quite done with being stuck in a bed all day, and who can blame her really. This morning while I was next door picking up baby Corie from the Ronald McDonald House where she's been staying overnight with her daddy, Ella's EEG wires were cut and the computer and camera that had been monitoring her since surgery were taken out of her room. She is still hooked up to an IV and a brain pressure monitor, but I took the opportunity to jailbreak her anyway. I padded the bottom of a wagon, and we went on a long ride all around the unit. Every time we rode by the fish tank, Ella asked me to stop so she could see them. I love these little moments. It makes me happy that she can take a break from being a patient for a little while and just be a little girl who likes to look at the fishies.

We saw Dr. Chugani this afternoon. He didn't really have new information for us but wanted to make sure we understood what would be happening during the surgery tomorrow and make himself available for any questions we had. He reiterated that they would be removing the frontal and parietal lobes, while leaving the sensory-motor cortex and the other parts of the left hemisphere intact. I asked him if this is what he expected based on the previous EEGs she'd undergone. He replied that he actually anticipated that Ella might require a subtotal hemispherectomy--which is removing all the structures of the left hemisphere minus the sensory-motor cortex. And then he said, "This is why we do the testing." He told us that during the surgery, after the parts of the brain that had "participated in the seizures" were removed, that they would monitor her on EEG right there in the OR to make sure that no further seizure-active structures remained. He said that he and Dr. Asano discussed the possible removal of Ella's hippocampus at great length. It was abnormal on her PET scan last summer, and in general the hippocampus is one of the most seizure active parts of an epileptic brain, but in Ella's case it did not participate in the two seizures that were captured this week. Therefore, conservatively, it gets to stay for now, but if during the monitoring tomorrow they see abnormal activity originating from there, they will take it out. If it starts into seizure activity at a later date, we will treat it aggressively with medication.

The probability that Ella will have seizure control after this surgery is very good. Dr. Sood told us that 85-90% of patients achieve seizure control with this surgery and further broke it down into four groups. (my figures may be a little off; he told us this a few days ago.) In class 1: sixty percent of patients never have another seizure and eventually wean off all medication; class 2: 15-20% have seizure control on a reduced regimen of medication; in class 3, another 10-15% have good control on the same level of medication as before surgery; and in class 4, 10-15% do not have seizure control even after surgery on the same meds. This is great news and doesn't even speak to the developmental gains we expect to see over time as a result of surgery.

Ella is the first case again tomorrow. They are supposed to come get her between 6:30 and 7:30 in the morning. Surgery is scheduled to start around 8:30. It is estimated to last anywhere from 4-6 hours, and, after recovery, Ella will be back in the pediatric ICU overnight. I don't expect to see her there until late afternoon, but as with the first surgery they will call us hourly with updates.

The Preliminary Results

2012-04-16T19:07:00.005-05:00

(I had nearly a whole blog post typed out and it went away when I put my phone to sleep. Ahh technology--simultaneously helpful and infuriating. I'll try to recap.)

Ella has had a good day today. In many ways, she is acting like her sweet self again. She is smiley and happy, loving and charming. Except when she's not--just like home. She has enjoyed reading books, playing, and she even felt like eating lunch. Which she did, very well. All of us were glad to see her feeling better. It did our hearts good to hear her talk and giggle many times. She hasn't even complained of pain and therefore has not had pain medicine at all today so far.

Ella's head dressing was redone this morning. Again. I think she was happy to get that bigger, bulkier one off for sure. The new one may not last as long as some of the heavier duty ones, but it made her glad to not have a chin strap for a little while.

The doctors presented Ella's case before the surgery conference again today. This conference is attended by approximately 20 adult and pediatric neurologists and neurosurgeons, so when consensus is reached it is clear what should be done. They had data from Ella's two seizures here, as well as all the mapping. In the past, they also reviewed the EEG data obtained at Arkansas Children's. Dr. (Rockstar) Chugani, who oversees Ella's care, was in attendance but not on campus afterward because he had a satellite clinic this afternoon. We did see him briefly this morning and noticed that he was wearing a necktie with EEG tracings on it; he cracks me up. I believe he and Dr. Asano will likely review everything together tomorrow. So I guess we'll know the official word after that.

Dr. Asano (the epileptologist who has spent several hours at Ella's bedside analyzing data and mapping out her sensory motor cortex) came talk to us after the conference to give the initial findings. He brought a picture of the surface of Ella's brain with an overlay schematic of the grid electrodes that are in place under her skull to help us understand his analysis. He showed us which electrodes fired when Ella started into a seizure, which is first manifested by an asymmetrical facial droop. He indicated it was an area in the left parietal lobe that I think he said is responsible for expressive speech (this would probably account for her speech delay). He explained that as Ella's seizures progress from the facial droop to spasms, the seizure activity travels to the left frontal lobe. So his recommendation is to remove those sections of the frontal and parietal lobes. The neurosurgeon, Dr. Sood, would have to speak to this for sure, but Dr. Asano estimates that this surgery would take five to six hours. They will hook her up to EEG during surgery to make sure that they get all the seizure-genic areas. He emphasized that she will not require an extensive hemispherectomy, and I think that is great news.

Dr. Asano also said the sensory-motor cortex is not involved and the left temporal lobe is also "clean"--this is good news on both counts. This means that she will not have lasting weakness and that her language comprehension and hearing are intact and will remain so. Being near enough to the motor cortex, the swelling caused from the removal of these two areas will likely cause some short-term muscle weakness on the right side, but as the swelling resolves so too should the weakness. Her expressive language will be affected for a longer period of time, since the area controlling that is actually going to be removed, but Dr. Asano is confident (as is Dr. Chugani) that her right hemisphere speech center will take over soon enough--even better than if the damaged left sided one were to remain intact. The left temporal lobe will stay in, so Ella will retain the ability to hear and understand us, but as I said above she won't be able to express herself for a while. Dr. Asano said this will cause us all some frustration, but I think we can manage that, especially if it's temporary and means that her speech will be even better on the other side eventually.

We have not been told that surgery will be moved up to tomorrow, and, since Ella would have to be off food and drink after midnight tonight, we assume that they would have told us before now if this were going to happen. So, it looks like we have one more day of waiting and recovering before the next stage of the surgery will happen on Wednesday.

Seizure number two!!

2012-04-15T23:01:00.001-05:00

Last night was pretty long. Ella slept for brief stints of time and then would wake up disoriented or scared or something and thrash around and cry until I could coax her into being calm. It was complicated by the fact that she has wires stitched into her head that I really didn't want her to pull out (understatement). She continued to do this some today too, and I'm not exactly sure what's causing it or how to keep it from happening; we're just getting better at managing it.

A little before 4 a.m., Ella woke up in a fit like I described above. I comforted and repositioned her and then just continued to watch her. Soon after, it looked like she fell asleep with her eyes open. While this is not abnormal for lots of people, I kinda wondered if it wasn't a mild presentation of a seizure. She is still a bit sedated from the combination of the pain meds and surgery, so I thought maybe her seizures would be a bit more subtle. I had seen her do a similar thing earlier in the evening, but as it was an isolated event, I was even less sure of what I was seeing.

Within a few moments of that staring spell, she went into one of her typical seizures. As I was instructed to do, I pressed the button on the EEG computer to mark it in the recording, pushed the staff emergency button on the wall, turned on the light, and took Ella's blanket off. No less than 10 staff members entered her room and began to attend to her (oh my! I wanted to tell them that she is really gonna be okay and felt a little silly with all the fuss). I don't remember a time when Ella has been on pulse ox monitoring during any of her complex partials previously, but she was this time and her oxygenation level did drop into the 80s. Hmm, I really don't like that. She seized just long enough that the staff had drawn up a dose of Versed and already had the syringe attached to her line to give it to her. Right before the doctor was going to push it, one of the nurses asked me if I thought she was out of the seizure. I said yes I did, so they held the med.

And with that, I will never again have to hope for seizures. The EEG doctor wanted at least 2, and that's what my girl gave him. The nurse paged him from the room and alerted him to the seizure. He was able to log in from home to look at her EEG tracing. Apparently, what he saw was adequate because he called back to order Ella's IV seizure medication dose within a few minutes.

Later this morning, Dr. Asano came to Ella's bedside and finished mapping her motor and other cortices. This involves stimulating x and y electrodes to see what movement is produced. We do not want her to lose motor function if at all possible. This testing is not done until after the child is back on medication because an "unprotected brain" that is prone to seizures will seize. In fact, that dose of emergency Versed was again at the ready were Ella to seize even with meds on board, but it proved unnecessary. If he could reproduce a movement, then it was counted as a positive. While it was interesting, much of what he was doing went over my head.

There were moments of today that were very good for my mama-heart. Ella seems to be feeling much better in general. She has been willing to talk to us, give high fives or fist bumps to some of the staff, and even took a little milk. We played on Mom's iPad for several fun minutes this afternoon. Lots of glimpses of normal through so much abnormal.

My favorite part of the day was when the staff put Ella in my lap so they could change her linens. I'm not sure who loved it more, me or her.

Ella's head dressing has been a bother--either too loose or too tight. At one point, it had gotten so tight under her chin and around her ears that Ella began to cry out repeatedly "owie owie". She couldn't even calm down long enough to tell us what was hurting but I can't imagine that it was anything else based on the way she was holding her head. Ella's nurse was able to loosen it without taking it completely off, and Ella immediately quieted. Of course, the morphine probably helped too.

Tomorrow, Ella's case will be presented before the neurology conference yet again, only this time it will not be to discuss whether she is a candidate for surgery but rather what area or areas to remove during surgery. I am glad that they will have two seizures to analyze. As with the brain mapping, one seizure could be a fluke but two is a pattern. Some think that her surgery may even be moved up from Wednesday to Tuesday. This would be a welcome change for me. The sooner the better. We probably should know something by tomorrow afternoon.

Love to all,
Megan

The Interim

2012-04-14T22:03:00.002-05:00

Last night, my mom took the overnight shift to watch Ella for seizures. At least one adult has to be awake with her 24/7 until we get enough seizures for analysis. That number is two, and we obviously only have one, so I'm on night duty this evening.

Today has been interesting. Other parents who have traveled the epilepsy surgery path have told me that the time in between surgery stages is the hardest part of the whole thing. I completely understand why that is now.

Ella has been in some pain, which is expected. The treatment of the pain either makes her nauseous (morphine) or crazy restless (dilaudid). Therefore, the treatment is almost worse than the pain itself. I'm frustrated for my girl and feel a bit helpless. We don't really have any other options for oral meds for pain control because she's not able to keep down much by mouth yet. An IV medicine that I'd love to have her try (toradol) is contraindicated due to the side effect of increased risk of bleeding. Typing this out, I think I am gonna ask that Ella be seen by the pain team doctors tomorrow. It's just pitiful to watch her moving constantly in bed, unable to get comfortable. On top of that, there was a subpar dressing change that stressed everyone out. The head dressing had nearly come off with all of Ella's movement, so it had to be redone. It was not great technique, and that's all I'm gonna say about that.

On the seizure front, there's been no more events since the first one yesterday morning. Her seizures are always within a few minutes of waking up, which typically means only 1-2 opportunities to seize. Because she is sleeping a lot more throughout the day, we believe it is very likely that we will capture another seizure soon.

She is dozing off more than awake right now as I type, but, dang, is she restless still. No more dilaudid, baby, I promise.

On the plus side, Day Two after grid placement surgery is supposed to be the peak of the facial swelling. We were told to expect that Ella's left eye might even swell shut. That has not happened. In fact, Dr. Chugani said that she looked better than he expected. So we're thankful for that.

Ella is also feeling well enough to talk and interact a bit more. With a little prompting, she is saying lots of things. It makes my heart swell with pride to see her try so hard.

Another nice thing about today was the yummy meal we had at the Ronald McDonald House. We've been staying there the last few nights, and I must say it's been a pleasant experience. A lot of churches and organizations come in to cook meals for the families staying there. As far as I understand, there is a group preparing dinner every night this week. I am so thankful and humbled by all the kindness and assistance we've received throughout this ordeal.

One final praise is that I got to Skype with my boys for a little while this afternoon. They seemed to be getting along, for the time during the call anyway. They are so funny, it did my heart good to speak with them.

That is all for now. I hope tomorrow is a new day, that Ella is more comfortable, and of course that we get the seizure capture that we need.

Friday the 13th--a midday update

2012-04-13T12:35:00.000-05:00

Ella is keeping up with her part of the bargain because she already had a seizure this morning. And it was left-sided as hoped/expected. We don't know any more specifics about exactly where in the brain just yet.

Dr. Asano wants to capture at least one more of her seizures before determining the exact location and resuming her meds.

If I had to pinpoint her mood, I'd say Ella is forlorn. She can talk but is mostly choosing not to. She denies pain and denies anything to eat or drink too. I think it's hard because she doesn't really understand what's happening to her.

We made it to a regular room just a little while ago. Corie will get to stay with us during the day now. So I'm a happy momma.

So we have until next Wednesday (when the 2nd surgery is scheduled) to capture at least two seizures and we're already halfway there.

First stage of the surgery is done and all is well

2012-04-12T16:24:00.003-05:00

Ella is out of surgery quicker than we thought and is already settled in the ICU (the ICU stay was expected). She has essentially been sleeping since she came out of the OR. She is attached to several wires, and she's still on a little bit of oxygen. They had to medicate her for nausea a couple of times. She is getting a bolus (and extra dose infused at a fast rate) of fluid right now because her lab work is showing that she is dehydrated. Her pain seems controlled right now.

I am going to stay with Ella overnight, and at the 24 hour mark, as long as she is not having any problems, she will get to transfer to a regular room on the epilepsy monitoring unit. I am looking forward to that, if for no other reason than my baby will be able to be in the room with us.

Now we are back to waiting for seizures. Dr. Asano, the EEG doctor, wants 2-3 of them captured if possible. They will hold her meds until she does. Currently, the second stage of the surgery is set for the 18th. If Ella does not seize by then, we can either move back that date, or they can try to stimulate her brain through the electrodes to elicit seizures.

That's what we know for now. I probably won't update again until tomorrow unless something changes. No news is good news, as they say.

Love to all,
Megan

Here we go

2012-04-12T07:50:00.000-05:00

I just walked out of the OR, after escorting Ella back to the room. The anesthesiologist let me hold her hands and offer comfort while he gave her the first bit of gas to go to sleep. I kissed her check through my face mask and said "see you later." All without crying, which I wasn't sure I'd be able to do.

The surgery itself probably won't start for another hour, as they have lots of prep to do first.

I'll keep you posted.

Thank you for tracking with us and praying/sending thoughts.

Travel day and consultation morning

2012-04-12T00:24:00.001-05:00

I've been working on this since Wednesday afternoon, but we've had a lot going on.

Tuesday was long and busy. It involved dropping the boys off at school (Jackson was a little sad, Cooper was completely chill) finishing up our packing, some last minute errands, a drive to Tulsa, two flights, a late night dinner, and an even later night of trying to put baby beds together at the hotel. I was really proud of Ella because she managed to do quite well all day even without a nap, with the exception of a stretch during the first flight wherein she decided that she did not want to keep her seatbelt on. There was lots of yelling and screaming at the top of her lungs (at least it wasn't constant though, right?) as she fought to try to get up during the landing. I didn't really handle it very well because I was so self-conscious about what the other passengers thought and didn't anticipate it (even though, after she began to fight it, I remembered she did that once the last time we flew too. I guess I just blocked it from my memory). During the second flight, we were better prepared; I got out more diversions and snacks, and, when it was time to put her seatbelt back on, we made it into a game. We also put Ella by the window, so she could see better. On top of that, and perhaps the most effective change we made, we had my mom sit directly behind Ella, so that when she stood up to play she had a friendly face to look at.

So we got in to Detroit around 9pm Eastern time Tuesday night. My dad had flown in earlier in the evening and met us at the airport. I'm so glad that both my parents were able to make the trip with us. I can't imagine how I would have managed to navigate the airport with my husband in a wheelchair, Ella in the stroller, and Corie in my baby carrier--nevermind trying to get any suitcases through. And then there's Chris' parents who are keeping our big boys this week. It really does take a village.

We got up early yesterday morning to meet Dr. Sood. He is the neurosurgeon who will be performing Ella's surgeries. He doesn't normally have office hours on Wednesdays, but he made an exception for us, since they moved our surgery dates. We were glad to meet him and felt like he answered many of the questions we had before we had to ask them. He was a very calm, quiet, confident man, and we were all the more comfortable placing our daughter's care in his hands. He told us each of the surgeries would take about 4-5 hours. He makes the incision in her hairline, so that she will have no visible scars. They shave only the hair around where they will cut. The portion of the skull bone that they remove will remain attached to Ella's jaw muscle to preserve its vasculature until the second surgery. The grids that they place on the surface of her brain have electrodes that are much closer together than the scalp EEGs that she's had multiple times in the past, so the doctors should be able to get an accurate picture of where the seizures are coming from. They will actually do a little monitoring right there in the OR. Depending on how seizure-active her brain is (and I would anticipate not very), they will decide how much if any seizure medication she will get in the meantime between surgery stages. My guess is that they will take her off meds completely and will put her back on after they capture seizures.

Dr. Sood talked a lot about expected outcomes and potential complications. He had a statistic or a percentage for everything, which gave us great comfort that this is indeed "scientific" as Dr. Chugani assured us it was when we gave the green light for surgery. Children's Hospital of Michigan alone performs this two-stage surgery 40-50 times a year. He told us the chances of Ella needing a shunt were quite small, since she is over 2 years old and because he does not anticipate needing to remove the entire left hemisphere (the smaller the area of resection (surgical removal), the smaller the chance of fluid build-up on the brain. He mentioned infection, clots, and stroke as possibilities. But again the risks of any major complication are quite small.

She will be in the ICU for 24 hours after the surgery, and I will probably stay with her. My mom wants to keep Corie during that time, so sometime between now and then I need to find a chance to pump for her. If that isn't able to happen, my mom will stay with Ella instead.

Her second surgery will be on the 18th, as long as they are able to capture seizures between now and then.

I'm sure I've left out some details, but I've already told this story a few times since then.

Love to all,
Megan

Book Review: Outlive Your Life by Max Lucado

2012-04-06T16:20:00.000-05:00

I really liked this book, if by "like" you mean it shook me to the core about my perceived importance in the world. When you first read the title, you assume a prosperity theology-esque message where you get to establish a legacy for your own sake. You don't have to read past the prologue to find that this book promotes a life lived as anything but a self-indulgent endeavor. The idea that we are meant to serve others, with the ultimate goal of promoting God, is not unique to the author, but Mr. Lucado has a particularly accessible way of fleshing that idea out. It is a relatively easy read, but not in a watered-down kind of way. He combines scripture and practical application in an engaging way that drives you to turn the pages, and all the while tugs at you to put the book down and get busy serving already. It is not preachy or impractical either. Much time is spent sharing true stories of "ordinary people" doing extraordinary things for God. This book will inspire you to think outside your own self comforts and see how you might impact the very lives of others. I recommend it to anyone asking the "what next?" question with regard to a life lived for Jesus. If you are unsatisfied with a self-serving, armchair kind of faith, this book will resonate with you. I give it four out of five stars.

I received this book free of charge from booksneeze.com in exchange for my honest review

On Stella Rose

2012-04-04T11:04:00.000-05:00

From time immemorial, words have frequently fallen short of getting at the marrow of our deepest thoughts and feelings. This inadequacy of language only seems to be exacerbated in the current information age. There is no doubt a glut of words, begging to be consumed--an ever increasing, clanging cacophony of opinions and ideas.

Which is why I paused before writing this post, to ask myself if words are necessary here. I am not certain of the answer, but I feel the tumble and jumble of unexpressed grief within, and I feel the need to process it in the only way I know how--by writing it out.

Stella Rose Mulhearn died yesterday, at the tender age of 3 years and a couple of weeks, from an extremely malignant brain tumor and the complications of treatment. There is nothing "okay" about the death of a child. Nothing that makes sense. Nothing that eases the blow. It just hurts and hurts and hurts some more.

I married into Stella's extended family and regrettably only saw her a handful of times, but I felt like I knew her well. The ironic blessing of her illness is that many more people got to know her than would have otherwise through the chronicling of her treatment over the last five months. You only have to read the guestbook at her caringbridge page to see the magnitude of the impact she had on so many.

Hers was a life lived well, albeit entirely too short, filled with a lifetime's amount of love from all who knew her. She was pure, lacking all guile, and spunky--throwing her bunny at any insult that entered her room. Her brother Davis was clearly one of her favorite people, as he could draw a smile out of her better than anyone else. She was born into a family that already knew the grief of losing a child; not that Charlotte could ever be replaced, but I know Stella eased the burden of their loss. Her sister's untimely death five years ago profoundly changed me and was the major impetus behind our decision to re-prioritize our schedules so that I could spend the majority of my time at home with our kids. That is a small part of Charlotte's legacy. I still do not know the full scope of Stella's legacy, but I believe with all my heart that she too has changed people for the better and will continue to do so.

My heart is heavy for the Mulhearn, Copley, Davis and Jackson families. I wish I could protect them from the grief they are now enduring. All I can do is promise to never forget, to walk with them in their grief, and to live out life with the knowledge that every moment with our loved ones is a fleeting but blessed gift.