Surgery's a go

I'll post more details later, but the surgical conference said "yes" last week and then after prayerful consideration we said "yes" to brain surgery for Ella.

It is scheduled for the end of April. (ack! That's not very long from now.)

If you want to read up on the statistics and science behind our decision, try this post from the UCLA Health & Wellness Newsroom.

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I'm back, baby!

After nearly 2 years of going without, we finally decided on a computer. It has been hard to maintain a blog from the confines of a smartphone or by relying on the sporadic use of someone else's computer. And so I basically haven't. Maintained one, that is.

It might have been for the best that I had little opportunity to speak in this space; I probably could have gotten myself into some trouble. I do wish I had a better record of every day life during this time though.

So let me catch you up on the last year:

I attended an orphan care conference last February. After which, I interned for a nonprofit for exactly one month, give or take, before they moved their offices to Raleigh. Whateves. I'm still trying to figure out what participating in the care of orphans looks like for little old me, even a year since writing this. I may have more on that soon.

April was consumed by (pardon the pun) a flood at the duplex that did nearly $80,000 of damage and left us without renters for more than 6 months.

The same week of the flood, I found out I was pregnant. Nice timing aside, the news (and the eventual child) was very welcomed.

Jackson, Cooper, and Ella all continued to go to school and learn new things and do/say incredibly hilarious things, none of which I can think of at this moment. I should probably go read some of my Facebook status updates for a refresher. Or something.

Chris & I hit our 10-year anniversary in October. No big cruises were taken or other huge gestures made. I really don't recall if we even went out to dinner that night to be honest, but Chris did send a beautiful bouquet of roses and that was more than enough for me. I am certainly a romantic, but at my core I am even more so a pragmatic who doesn't really see the need to spend a lot of money we don't really have right now.

I had a kid in December, which I mentioned. She's awesome. And already 2 months old.

And throughout the year, Ella had a battery of tests, EEGs, and hospital stays to determine if she is a candidate for brain surgery. This was the one topic I did manage to blog about on a fairly regular basis, so I feel you are caught up there.

So that's 2011 in a nutshell.

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Letter to the Surgery Conference Members

I'm still trying to gather documents and assessments, but this is the letter I sent to the conference members that will be reviewing Ella's case next week. This will be the second time that they've done so, but now they can base their decision on six very similar seizures, instead of two.

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To the members of the epilepsy surgery conference:

On behalf of my husband and myself, I'd like to thank you for your time in considering our daughter for epilepsy surgery. This surgery is not something we take lightly. I do not write to try to persuade you, as we have yet to make up our minds about whether we would green light the procedure were you to approve her for it today, but instead I write to try to give you an accurate snapshot of her daily life.

Ella, who just turned three last month, was diagnosed with infantile spasms at 5 months old. After successfully being treated with ACTH, she enjoyed a 21-month period of seizure freedom, during which time she had some exciting developmental gains. She began walking (at nearly 19 months old) and communicating, exhibiting an obvious intelligence and memory. 

That seizure freedom ended in March of 2011, when she began having complex partials; we have been looking for ways to reestablish it since then. We have made multiple medication adjustments--none of which seem to have reduced the frequency of the seizures she is having; of course our goal has always been total seizure freedom not just management or reduction. 

Ella seizes anywhere from one to three times per week, always within a few minutes of waking. I am thankful that there is some predictability to them in order to better be prepared for them and also thankful for a relatively low frequency, but seizures of any type or time are very disruptive to her routine and are therefore undesirable. On days that Ella seizes, she can be characterized as out-of-it and sleepy, and her performance in therapy is affected negatively. Also, even though we watch her closely during transitions from sleeping to awake, she has still managed to fall at seizure onset occasionally, which makes me worry that she will cause herself great harm one day. 

On a larger scale, I believe Ella's developmental progress has plateaued in the last year, and her most recent evaluation from her teachers and therapists at school is in agreement with my informal assessment. Ella's speech is primarily mono-syllabic, one-word-at-a-time, and often limited to topics of basic needs or wants. Rarely does her speech give us a window into her personality or thoughts about the world around her because she does not have the words nor the ability to put sentences and paragraphs together. As she matures, her inability to communicate is increasingly frustrating to her and causes her to act out at times. Those of us who spend a lot of time with her usually can make sense of what she is trying to say, but even for us it involves lots of questions, pointing, and charades. I believe her frustration will only grow if the gap widens between her ability and that of her typically developing peers. While her speech is my greatest concern, Ella also shows delays in gross motor development and has generalized low tone. She can feed herself. She is very social and often mimics those around her, which compensates for some of her delays.

Our goals are to get the seizures stopped and give Ella the best opportunity for developmental gains. We believe the considerable risks of brain surgery are mitigated by the chance that through cessation of seizures our daughter might catch up to her peers one day. We have not given up on the hope that she eventually could attend college, live independently, and be a contributing member of society.

Thanks again for your time and consideration.

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Four days in Little Rock

Amazingly, Ella had a fourth seizure in as many days at Children's, all originating from the left side, and by mid-morning Thursday we got to talk about discharging from the hospital. At the onset, we were scheduled to be there until at least Friday and longer if necessary, so this was a welcome change of plans.

It took all day to make it happen, but we finally got home late Thursday night. I quickly began to realize how stressed I had become over the course of the week in that itty bitty room with two little girls who needed attention all day and into the night. Even with my mom's help during the days, it was still a challenging week. What a relief to be home and have more space in which to do life.

Our boys were sleeping over at their grandparents' house Thursday night, so all I had to do was get the girls ready for bed and crash into bed myself. I missed my guys, but it really was a great thing to have a chance to catch my breath before going to get them the next day.

So now, once again, we are waiting to hear from the surgical board in Detroit as to whether they believe surgery will benefit Ella. I do not yet know when the next conference will be, but I am expecting to find that out tomorrow. I anticipate knowing their decision within the next 2-3 weeks.

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Rainy Wednesday in Little Rock

Ella has done her part so far, having a seizure each of the 3 mornings that we've been here in the hospital. We came in with the hope of capturing 4 seizures, so we are getting really close to that goal. To give you some perspective: the last time we were here to record seizures, Ella didn't even have one event until the 4th morning of her stay.

Right after Ella's seizure this morning, Dr. Luat came in to say that though she hadn't analyzed today's seizure yet, one can assume that it was left-sided too. Once she looks at it, she is going to call the doctor in Detroit and tell him that we now have a total of 5 seizures recorded, 2 from November and 3 this week. Perhaps they will be happy with 5 and let us go home a little earlier than originally planned. That would be spectacular!

Corie is still here with us in the room. And she is doing awesome. I am so proud of both of my sweet girls.

Our prayers and love are with Stella, Molly, JayJay, Emily and others who are in the hospital today battling cancer, pneumonia, and complications from seizures and testing.

*Update*

The medical team just came in and said that Dr. Luat believes today's seizure was left-sided too. This is good news because one-sided seizures (rather than generalized) are the only kind that qualify for epilepsy surgery. You can't remove "bad parts" from both sides of the brain because then there's no chance for compensation. Dr. Luat is contacting Detroit right now. I will update again when I know more.

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Making Progress

I'm really glad that we came down to Little Rock last night. For one, it actually did start snowing overnight, and I've heard that some parts of the interstate between here and home are very treacherous. For two, Ella had a seizure this morning, and since she was already hooked up to the EEG here in the hospital we were able to record it. Had we come at noon today as we were originally scheduled, we would have missed it. Since she only has a few a week, each one is very important. And like the 2 previously captured when we were here in November, this seizure originated in the left side of her brain.

So now we need 3 more recorded seizures to satisfy the request of the surgery board in Detroit. The doctors want to be sure that Ella's seizures are only coming from the left before giving the green light for surgery. It would not do her any good to remove a portion of the left brain if the right side had damage/seizures too. And in the past, some of her infantile spasms seemed to have some right-sided spikes associated with them.

Our 2-year-old cousin Stella Rose had another MRI today. This is a big day! I think the family will get results around 1pm. Pray that the brain cancer is completely gone. She has recently finished up the big-guns chemo, so the doctors are hoping that she will show a huge change on the scans. We believe she will be healed!!

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To Little Rock. . .Again

I should probably be sleeping since both my girls are. But for some reason, I am wide awake.

I am sitting in a mostly dark hospital room, one of the smallest I have ever seen. If memory serves me, this was the room we had when Ella was first diagnosed with infantile spasms almost 3 years ago. How weird.

We are back at Arkansas Children's. Ella is already hooked up to her EEG leads tonight. Originally, we were not supposed to check in until tomorrow afternoon, but with the looming bad weather, they had us come in a day early. We were already planning to drive down tonight and stay in town anyway.

So Ella did not love the leads being attached. At all. She protested more than any previous time I can remember. It was really rough there for a little while. But about midway through, I was able to convince her to let me play her favorite song--Beyonce's Single Ladies--on repeat until they were done. She stopped screaming and snuggled and danced with me, barely noticing any new leads being placed. They tell me it doesn't hurt, but the smell of the adhesive and the sound of the air gun they use to rapidly dry the adhesive are quite overwhelming to my little girl.

It's flu season here at Children's (and everywhere else). Which means the hospital is operating under its flu policy, namely that children under 16 are not allowed to visit. Trying to figure out how to continue providing Corie's sustenance through breastmilk while not leaving Ella in a hospital room by herself nor bringing the baby up to the room was proving to be nearly impossible. We had come to the conclusion that we would need three adults to get the job done--one to stay with the baby, one to stay with Ella, and one to courier milk back and forth and to relieve the other two as needed. Can you say logistical nightmare? So, I asked the doctor if she would be willing to speak on our behalf to our unique circumstances, to see if the higher-ups would allow an exception to the policy and let Corie stay with us. I hate asking for special treatment, but I really didn't like the alternative either. Worst case scenario, they'd say no and we would go with our backup plan. My mom & dad are in town for this reason.

But, thank goodness, they have allowed us to keep Corie here in the room. This means I don't have to pump and  my dad can get back home to take care of his appointments, providing that the weather cooperates, that is. My mom will continue to stay here in town with us and help with the girls, getting food, etc.

Pray that we catch lots of seizures this week. Our doctor is not on call until tomorrow morning, and the one that is on did not feel comfortable with Ella being off her seizure medication, so she got her full dose of both tonight. I anticipate that Dr. Luat might discontinue them again when she comes in tomorrow. We shall see.

I'm off to sleep, just as soon as I figure out where to lay down. Ella is currently taking up the middle part of her bed, and Corie's bed is taking up the floor space where this chair I am sitting in would otherwise fold out into a bed. Decisions, decisions.

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She is here!

And already a week old, if you can believe that. This is the best picture I could get this early morning in the low light of our living room, as she and I spend some quality time together while the rest of the house still sleeps.

This is sweet Corie Elise, our fourth child. She was born at 5:40 pm on December 21st. She weighed 9 pounds 15 ounces, and she is by all accounts absolutely, deliciously perfect. My love for her was fierce and immediate, and as with my other children before her I know I would go to any length to protect her from this mad, mad, mad, mad world.

So much of my knowledge and experience with newborns had been packed deep into the recesses of my mind after three years of not having one, but it's all coming back to me now. Every little facial expression and noise--it's all so familiar yet just as endearing as ever. The routines, the sleepless nights, I remember them well now.

Our older children have been a mix of curious to doting. Ella, whose reaction to being unseated as the youngest I most worried about, has been sweet and for the most part gentle in her dealings with Corie. I had envisioned something with more jealousy and/or rough play. She doesn't really understand why she can't touch the baby when she's sleeping, but that is totally manageable. Cooper tells me he loves "our newborn baby", but in typical Cooper fashion has been mostly hands off so far. He helps me when I ask him to bring me things and doesn't seem to mind doing so. And Jackson is over the moon in baby love. It was all I could do to properly take care of Corie in between all the times her oldest brother wanted to hold her those first few days we were home. He too has trouble understanding not to disturb the baby's sleep, but he "just loves her do much" he can hardly help it. I totally can relate. My cup overrunneth.

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