Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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This roller coaster called life, parenting, and the art of seizure control....

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Flight Paths

Posted by Nicole on April 18, 2011 at 9:26 PM Comments comments (0)

ECFE (Early Childhood FAMILY Education), 9:30am 2006: 8 stay-at-home-moms, including me, are gathered together in a large circle in a small room, fluorescent light buzzing overhead, as we sip our coffees and hot chocolates, preparing for the day’s discussion. We have all spent 30 minutes playing with our 3 year olds in the next room, their siblings safely tucked away in “sib care,” and have left the 3 year olds with their classroom teacher while we take the next hour to educate ourselves about parenting, learning styles, and child development in general, facilitated by a “parent educator.” Aiden, 10 months old, was still 1 month from his first seizure, and I was naievely unaware of the change my life would take.

 

Most of us look forward to this blissful hour in the company of other adults who understand, knowing it may be the only hour of uninterrupted adult conversation we enjoy in the day. I stir my hot chocolate observing the moms around me, noting their clothes, their shoes, their expressions of alternating exhaustion and perkiness. Looking back, there was one mom who seemed just a little more tired than the rest of us, whose hair was just a little less perfect, and whose clothes were just a little more out of date than ours. (Note: We were all moms, so none of us was sporting the latest style, but still :)  )

 

I suppose I could have asked her what exactly had been going on with her son that made his struggle with potty training so much more difficult than the rest of our kids, or why he didn’t seem to care about making friends, but I didn’t. Of course I didn’t. And she didn’t offer, which probably just made me wonder if she knew he was different. I realize now she absolutely knew.

 

The topic of the day was “Your family’s flightpath,” and our parent educator walked us through the exercises of identifying the individuals our children were (point A), the individuals we hoped they’d become (point B), and deciding on our flight path to get from point A to point B. She stressed the importance of flexibility: How many times have our own flights diverted from the path only to end up at the promised destination, if perhaps a few minutes late, and we were none the wiser?

 

I knew what I wanted for my children: that they be respectful of others, that they love God, that they know right from wrong, and that they respect themselves. But how do we get from selfish toddlerhood to altruistic adulthood? 5 years later I’m still struggling with this one, though less deliberately and with less focus than before.

 

I know I can’t focus on superficial activities like sports or looks. I know I must be an example of respect in how I treat them (This is a hard one for me! I much prefer being “in charge.”;) I know I must teach them to love God and everyone around them. This is a lot harder to do, however, when 75% of my time is spent parenting or assisting their brother.

 

Maybe that’s one of the little surprise blessings we receive from having Smooch in our lives – maybe, just maybe, I’m not capable of the selfless love I wish for them, and perhaps he’s as much a part of our flight plan as the “unexpected” storm that pops up, necessitating a re-routing of the plane.

 

If I could go back in time I’d ask that mom what her flight plan was, and how she was dealing with the detours. I’d pick her brain about everything from dealing with the rest of us selfish, superficial, ungrateful moms with no cares in the world but potty training a typical child to how she kept her other 3 children on the intended flight path. Hindsight is 20/20 – I can’t fix what I missed out on back then, and I am certainly making a truckload of mistakes now, but I’m realizing more and more how lucky I am to have these 3 unique children who teach me more than I ever could have imagined.

VNS Implantation

Posted by Nicole on April 7, 2011 at 10:36 PM Comments comments (4)

Aiden had his Vagus Nerve Stimulator (VNS) implanted today. It's like a pacemaker for the brain: It's a small battery operated generator in his chest that sends electrical stimuli up two leads to his left Vagal Nerve in his neck every few minutes. Over the next several weeks we'll go in to the hospital to have the signal strength/frequency ramped up to a functional level.

 

The constant cycling of electrical stimulation should help prevent a few of his seizures (50% of patients see a 50% reduction in seizures), and when he does have one we can swipe a strong magnet over his chest to activate a longer stimulus that may help interrupt the seizure. If nothing else, it will likely shorten his recovery period and perhaps improve his cognition just a bit.

 

Before:

 

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After:

 

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This incision is "a lot larger than normal," and very different from the two small ones they described during pre-op.

They didn't say why.... I don't want to know.

 

(And now, a mere 7 hours after surgery, he sits happily on the couch staring at his "owie" covered with a bandaid. Shh! Don't tell him that's just the IV site and the real owie is about 5 inches long and dark red on his neck :)

 

This kid endured a seizure this morning to start things off, then fasting, pokes, prodding, intubation (a tube down your throat is no fun at all), a pretty lengthy surgery, and is back to almost 100%. He is full of snuggles and kisses and, bless his little heart, doesn't even understand why. He doesn't even question it, to be more accurate. Now here's hoping he forgets about it soon and most importantly, that it helps!

Let them help.

Posted by Nicole on April 1, 2011 at 10:27 PM Comments comments (1)

For the record, I’m not above asking strangers for help. Not one bit. Strangers are the greatest because – here’s the thing – YOU’RE NEVER GOING TO SEE THEM AGAIN! Talk about no strings attached!

 

I left my kids with one yesterday, in fact. I don’t want to sound like a martyr going into details, so let’s just say it involved an ill-timed seizure, my lack of preparedness, and a husband still-at-work-at-6:45 pm.

 

So here’s the deal: Strangers often want to help but don’t know what to say or do. Take charge of the situation, Fellow Dravet Parents, and delegate! Instead of complaining that “No one offered to help. No one cared/understood/insert verb that my child was seizing in the very public place of (insert location),” use your first-responder training skills and delegate. We’re trained to say, “You- Call 911. You – Clear the area. You – Take note of the time. You- watch for the ambulance.” while we assess damage and start chest compressions, but how many of us actually use these skills when our own child is involved?

 

Yesterday I am proud to say I called upon my CPR/First Responder training and delegated. (Note: no chest compressions were involved, thank-you-very-much. ) Did it involve leaving my children with a complete stranger? Maybe. But I still think people were glad to help. I feel empowered even though I might receive negative comments. I left him sleeping, post-ictal, as I took a load to the car because I never would have been able to get it all there with him in my arms during the chaos that ensues after soccer practice.

 

Angela (Angie? I don’t recall…;) was happy to help. Plus, she was chasing her two year old just minutes earlier, which totally proves her trustworthiness. Strangers don’t “offer” to help because they don’t know what to say or do. It’s up to us to ask them, and more often than not they are more than willing. Just like the people gawking at emergency situations: They’re gawking, jaw-dropped-like-imbeciles because they’re simply not trained to jump into action. It’s up to us to take charge, delegate, and focus our attentions on the tasks at hand. This isn’t some reality tv show, after all. This is our life.

 

Can we handle this on our own, Dravet parents? Usually. But there are a lot of people out there observing who want to help but just don’t understand or know what to do. So instead of martyring ourselves and handling it all on our own and then complaining afterward, why not make someone else’s day and let them help? I honestly think Angela (Angie? I suppose I’ll find out at the next practice) was happy to help. She sure watched him closely. That’s my advice for the day: Let people help – Just tell them what you need, and let them feel needed for the time being. They are, after all, our village.

8 Cylinders

Posted by Nicole on March 26, 2011 at 10:59 PM Comments comments (2)

Pushing thoughts of insurers out of my mind, life is good. An awesome Dravet family (Did I say awesome? That doesn’t quite quantify their amazingness) down in the Springs held a benefit book/moving sale for a fellow Dravet mom and her daughter to help fund stiripentol for the little girl whose seizures have been unrelenting lately. How selfless can one family be? True to Colorado form the sun was shining, the weather was warmish, and everyone was smiling. How fantastic is that?

 

I don’t know what I love seeing more: Other Dravet kids doing well, or two or more Dravet kids together. Seriously, there’s nothing more comfortable than watching a little one whose struggles you’ve lived ride off down the sidewalk on her newly-mastered bike with training wheels (Dad alongside, of course!), her bright blue eyes shining up at you, fully comprehending her newfound freedom, able to ring her little bell and throw caution to the wind as she takes off down the road – bliss.

 

Then again, the way she and Aiden looked at each other briefly as if to say, “Hey – you look familiar,” is precious too. Who are we kidding - it was more of a “Hey – you’re sitting in my prized yellow kayak in the middle of the driveway. That’s mine, but I’m going to let this one go because I think my bike might be better than my previous-best-friend, the kayak,” but who’s keeping track? Had they met before? Yes. But honestly, neither one probably remembers.

 

He’s been firing on all 8 cylinders today, and holy cow is he exhausting when he’s with it. “Watch this – I’ll do it again!” has accompanied about every reprimand we've thrown his way today. (Yes, it sounds more like “Waa iee, I goo gen,” but it’s clear as day to the rest of the family. Haven’t seen Bedtime Stories? A chauvinist slams a door in a girl’s face, the girl replies exasperatedly, “You did NOT just do that.” He replies, “Watch this, I’ll do it again!” You are going to need to keep up on your movies if you have a prayer of understanding Smoochie Face’s language.)

 

“Aiden, put your pants back on. NOW.” “Watch this – I’ll do it again!”

 

“Aiden, sit down and finish your dinner.” “Watch this – I’ll do it again!” (Repeat. Over. And. Over.)

 

“Aiden, take my muddy shoes off your hands and off the wall!” “Watch this – I’ll do it again!”

 

“Aiden, stop smothering your brother. He’s smaller than you are.” “Watch this – I’ll do it again!”

 

Wondering if he knows what he’s saying? On 8-cylinder days he most certainly does, evidenced by the fact that he repeats the offending behavior with the most impish little grin and giggle, exaggerating whatever part of his body seems to be getting the most attention. I’m not saying there’s no squealing involved.

 

8 cylinder days are awesome. And exhausting. Mostly awesome, though. I’ll take it. (And I can say that because it’s not my night to put him to bed.)

I don't understand.

Posted by Nicole on March 20, 2011 at 11:28 PM Comments comments (4)

Disclaimer: If you prefer the upbeat, Polyanna style stories, skip this post and check back next week.

 

I just don’t understand. I mean, I do understand how easy it is to turn your back and proclaim it is not your problem, but I don’t understand how people who do that sleep at night. How can you work for a company whose mission statement proclaims the company’s commitment to bettering people’s lives through (insert whatever line of business you’re in), when the company is unwilling to help the most innocent, suffering members of society?

 

Since moving to Colorado I have received multiple denials for prescription drug coverage for stiripentol and clobazam from:

 

Cigna (Our private insurer who included “Under no circumstances will this drug ever be covered unless it is FDA approved.” That was fun to read.)

 

Medicaid (With whom we have a hearing set for April 20th, but the medical director has already personally reviewed the cases and declared “While the effects of this medicine have not gone unnoticed in Aiden and other children in the state, we cannot go against our policy of not approving non-FDA approved drugs.” Um.. Yes, you can. It’s your choice, which is why it is termed “policy” and not “law.”;)

 

And the latest nail in the coffin: My husband’s big-name employer. I had high hopes for this one, as they have taken 6 months before issuing their first and only “no,” which most people spew immediately upon reading the request. For the record, it was a hard “no,” with clear statements that the appeals process has been completely exhausted and our only option is to fund the drug out of pocket. Which we already are. Oh, I suppose they know that and it helps them justify not covering it – why would they, when we already do? Thanks for that.)

 

I’m mad. I’m angrier and more disappointed in human nature than I have been in a long time. Every one of these companies had the right to deny our request the first, even the second time, for good reason. Policies are made to protect both the consumer and the company from random, money-sucking requests for experimental treatments. But stiripentol is not experimental. It is, in fact, the only scientifically proven treatment for Dravet syndrome, and has been approved for use in Europe for over 10 years. How is it possible that not one person who’s read our requests has had the moral tenacity to say, “Wait a minute, guys – This isn’t right. Let’s look at this again and use our judgement.”

 

You’ve all probably seen the commercials asking if you or your loved one took Depakote or Topamax while pregnant, and had a baby with birth defects. Yep. Depakote, the only drug these insurers currently cover for Aiden (and which is not FDA approved for use in children, by the way, but apparently there’s no “policy” regarding its use in our vulnerable children), is likely causing such severe changes to his tiny, fragile biochemistry that his children would suffer birth defects from years of use. That is, of course, if he could ever even have children, which is about as unlikely as the insurers doing the right thing.

 

Why isn’t anyone willing to help these kids? I don’t understand how you can hear Aiden’s story, or see him seizing, and say, “Oh, that must be so hard,” then walk away as if nothing happened. I don’t understand how companies can ignore the monetary savings these drugs bring in terms of reduced hospital stays, infections, brain damage, and lower need for therapy. (Did I say reduced? I meant zero. He has been hospitalized zero times since beginning stiripentol 14 months ago. But let’s not cover that one because of unknown potential side effects, like birth defects. Oh, wait – we’re talking about stiripentol, not Depakote, which they do pay for. I can just hear the insurers saying, “Shh – let’s keep our mouths shut on that one.”;)

 

How can everyone we see out here say, “This is just not our problem?” How do they live with their short-sightedness? Because eventually, the brain damage and loss of skills (simple ones like walking and talking, or feeding oneself) the children who are not on stiripentol and need it are currently suffering WILL be their problem. It’ll be the entire state’s problem because the family will have exhausted their resources, support system, and will have to institutionalize them when they are grown.

 

I am so disappointed in everyone’s unwillingness to use their judgement and help a child who cannot help himself that it makes my stomach churn. Can our family afford it? I suppose so. But we certainly aren’t putting anything away for the older boys’ college educations, which seems sort of backwards in a democratic society whose foundation is based upon a well educated population.

 

Yes, Aiden is still seizing, but they are not EMS-requiring prolonged seizures. No, he is not “normal,” but he still adds value to society. Just meet him and try to keep your heart from melting. Yes, our family can make the sacrifices necessary to fund a scientifically proven medication (the ONLY treatment option) that amounts to between $500 and $1500 per month. Is it right? No, it’s not, and I am not sure whom to turn to in order to right this wrong.

Lab Rat, Take II

Posted by Nicole on March 16, 2011 at 10:13 PM Comments comments (0)

Poor guy. Even Lexie, the dog, doesn’t undergo as many experiments as he does despite her ever present willingness to do what I ask. Seriously, I think she’d run into a flaming house to get a sock I left behind if I told her to in my best “sweet command” voice. (Which has made a stunning comeback thanks to dog #2, AKA Scout, choosing us for a family at the shelter a week and a half ago. Scout is an eager learner, but not exactly service dog material. She comes with two accessories: a slimy blue ball and a slightly less slimy red ball. All day long.) I digress.

 

I’ve graded oh, about 37 lab reports this week from my younger students who were asked to design their own experiment and write a report on it. They think their teacher is totally out of touch – Who does this stuff? I do! Mwahahaha! Here’s mine:

 

Nicole ____

3/15/11

Biochemistry

Mrs. XXXX

 

Effects of Almond Oil on Seizures

Purpose: This experiment seeks to determine the effects of fat in addition to a low-fat diet in a 5 year old boy with epilepsy. Specifically, almond oil will be evaluated with respect to myoclonic, complex partial, and generalized tonic clonic seizure control and related side effects.

 

Hypothesis: Based on a complete review of the current research regarding fat intake and epilepsy, coupled with the boy’s severely fat deficient diet, it is hypothesized that almond oil will improve either myoclonic or generalized tonic clonic seizure control.

 

Procedure: (Tired of the scientific talk? Me too. I’ll revert to my real life language for both our sakes. Just know I can spew it with the best of them.)

 

Document 3 days of seizures using the old fat deficient diet and inject emergency meds as necessary.

 

Next, take said seizing boy, inject with 5 mL of almond oil twice daily, and pray the seizures stop. (Actually, this doesn’t sound that different from my students’ versions of procedure. Hmm..) Add a splash of sugar free Koolaid to wash down the tasty syringe full of oil.

 

Data:

                 Myoclonia        GTCs      Complex Partials      Observations

Control

           Day1              50+                1                           1               This stinks

           Day 2              45                 0                          1                Still stinks

           Day 3             100+              2                           0                Boo.

+10 mL Almond Oil

           Day 1              20                  0                           0            Coincidence

           Day 2               10?               0                           0            Don’t get your

                                                                                                   hopes up –

                                                                                                   this never works

           Day 3              10                   0                           0           Diarrhea on the

                                                                                                  floor. Shit! Literally. (I

                                                                                                 don’t usually swear,

                                                                                                 but when the shoe

                                                                                                fits…;)

           Day 4               5?                  0                             0         No poo, no sz.. Hmm..

 

Results: Who the heck knows? There may be a trend there, but as we’ve learned been beaten over the head with, it’s never as simple as it seems. It’s great that he’s had 4 good days seizure wise, but a little tiny part of me thinks seizures are preferable to steam cleaning the carpeting and Cloroxing the path between the bedroom and the bathroom, which now sports a toilet faux-finished in brown where a pristine white one sat just hours ago. (I’m totally joking – I learned how to tile and would tile the entire house if it meant reduced seizures. But poo really does stink.)

 

Conclusion: Darned if I know. (One student wrote this on a report last year. I had to give him credit for the honesty – that’s a huge part of science, as opposed to guessing what should have happened and writing that instead, which is what a lot of them do.) Seriously. Darned if I know. I’m throwing up my hands this week and letting the jury decide.

 

Since I obviously have no control over seizures, toileting issues, or my other 2 children, I think I’ll teach Scout how to walk nicely on a leash this week. What was the psychological term for that? Displacement, I believe it was.

Nothing

Posted by Nicole on March 11, 2011 at 10:38 AM Comments comments (3)

I've got nothing this week. Too many seizures, no answers, and a big old fight from Colorado Medicaid on two fronts (stiripentol and school nursing) have got me beaten into submission for now. I'll be back with some witty story about our crazy new dog or our adventures in explaining to pharmacists (doctors of pharmacy!) how to use and order the emergency meds Aiden needs, but for now I'm just tired of it.

 

p.s. And to the people who were complaining this week about the "uselessness" and "inappropriateness" of the school district's placement of their children in the special needs inclusion class:  That class you think isn't good enough for your child is the exact one mine can't even get into without my attending alongside him because they can't handle his medical needs. So no, I don't think the district should pay for your child's private school placement - I think they should hire a nurse so mine can even access that classroom you turned your nose up at. There. I said it.

 

p.p.s. And you, parents who were upset that the teachers mentioned the need for 7th grade shots to the class before you had a chance to calm your anxious child: Seriously? Is that all you have to worry about? I have very little sympathy for your "24 hours of hell" because your child was scared for their shots, and do not agree with you that the teachers should be reprimanded. They're doing their best and have a lot bigger fish to fry - give them a break!

 

Wanna Talk?

Posted by Nicole on March 3, 2011 at 7:02 PM Comments comments (1)

Here’s a weird one: My older boys are upstairs with a social worker and Aiden and I are hunkered down in the basement to give them their privacy. Talk about situations I didn’t plan on when I imagined raising my children!

 

Actually, it’s a much better opportunity than it sounds – and probably much needed for them. She’s a great, friendly, energetic young thing who is just here to play with them and get to know them, “in case” they have anything they’d like to discuss without talking to their parents. (cough, cough)

 

I can’t imagine what they’d have to say. Certainly not that they felt a little shuffled around this morning as I hurriedly waved good-bye to them at 6:15 this morning to get their brother off to see the neurologist. Aiden had had a seizure a few minutes before, so I honestly can’t even remember if I said “good morning.”

 

Or that they felt neglected walking home from school the other week because Aiden had a doctor’s appointment that couldn’t be rescheduled.

 

And there was nothing behind Alec’s recent story of how his “friend” at school told the entire lunch table his little brother was weird and dumb. (Alec: “He is not, ____. He has Dravet syndrome, okay?” Friend: “So? He’s still weird and dumb.” Note to self: Stuff said friend in a sock next time you see him.)

 

And I don’t see any resentment brewing over the fact that Aiden gets, oh, about an hour and a half of video game time, every day, for pooping on the potty, when they get zero time despite their pin point toileting abilities.

 

Nah, no need for social workers here. It was all fun and games – They made these paintings with her, each color representing a feeling.

 

 

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 Alec: white=happiness, green=nature          Owen: red=anger, black=boredom

 

I should probably tell her she doesn’t even need to come next time – there’s clearly nothing they need to talk about, is there? :)

One, Two, Three...

Posted by Nicole on February 24, 2011 at 10:51 PM Comments comments (2)

“Wuu, Goo, houw, hic, hee.” That’s what I got when I told Aiden we needed to count our blessings today. (Translation: “One, two, four, six, three.”;)

 

Today doesn’t necessarily mark any special anniversaries or days of remembrance, but I’ve been feeling extremely proud of how far he’s come lately, and how well the rest of the family has adapted, so what more reason do we need to celebrate?

 

May 21st will mark 2 years since we saw the inside of our last ambulance. (I’m not counting the one we called a month or two after that but didn’t end up needing. I said the inside of one, not the outside :) ;) Can we just stop and dwell on that point for a few minutes? Two. Years. Years. For those of you not living with Dravet, imagine you’re a dog living in a covenant controlled community with strictly enforced leash laws. You get a 4 ft leash, you do not get to choose where you sniff or sleep, and you see the world from the cement sidewalk of your little neighborhood, and that’s if you’re lucky enough to get out of your 0.2 acre fenced yard for a walk once a day. You hear sounds and catch glimpses of foreign odors, but having not experienced them yourself you can’t put your finger on what they are or what they entail.

 

Now imagine your owner takes you for a drive out to a farm in the country, opens the car door, and… Lets you out! You race across the weed-friendly lawn kept about 5 inches longer than the small patches of lawn you’re used to, drunk with the aroma of new, intriguing smells. You check out the amazing sights, turning breathless circles as you try to decide where to go and what to see. This world you’ve heard of and smelled in brief pockets that drifted in with the wind is suddenly yours, open, and free.

 

That’s what we feel like. Two years ago we were planning to go to Duck Lake, our grandparents’ cabin in the northern Wisconsin woods. (It’s not really a cabin, but a lake home, complete with a “club,” tennis courts, acres and acres of undisturbed, uninhabited lakes and woods in which to explore, and even a boardwalk around the lake.) We’ve gone every year since we were little, reveling in the fact that it is nearly 2 hours from civilization, and by civilization I mean Wausau, Wisconsin. Sounds big, right?

 

The Wednesday before we were to leave, Aiden had a big seizure. It was a relatively quick ER trip, but we needed the ambulance’s Versed and oxygen, so it was a required trip none the less. And thus our plans to vacation nearly 2 hours from the nearest hospital were scrapped, to Owen and Alec’s disappointment. That marked the end of a 30 year tradition, and my heart was heavy.

 

Little by little over the last 2 years we’ve ventured farther from the safety of our small neighborhood. Lately we’ve done things we wouldn’t dreamed of doing before. We’ve climbed mountains and skied trails with not a soul in sight. We’ve traveled to other cities, trusting we could handle whatever Dravet decided to throw at us. We’ve enclosed ourselves in New York’s subway system, for Heaven’s sake, and stood at the top of the Empire State Building together.

 

We’ve hiked, we’ve waterskied, we’ve spent nearly a week at the very lake that broke our hearts years ago. We’ve felt the warm sun on our faces, grateful for every comforting yellow ray oozing through our pores, because  for a while there even the sun was Aiden’s enemy. We’ve decided seizures are here to stay, but they are not going to rule our life. A groggy, limp, post-ictal Aiden has joined us at basketball games, birthday parties, and any other adventures we happen to be on. And you know what? When he wakes up, he’s glad to be there instead of at home resting and missing out on life. I’ll never forget the time he woke up from a seizure-induced nap on a towel at a the lake, sat up, and druggedly looked around him. “Ah wah wiim.” (“I want to swim.”;) If that doesn’t speak volumes, I don’t know what does.

 

I don’t dream of seizure freedom, or even complete hospital freedom: I know we’ll hear the sound of the rumbling engine and see the red and blue lights flashing through the window at some point in the future. But how can I not step back in awe of the amazing 2 years of no emergencies we’ve come through? What a gift.

My Little Lab Rat

Posted by Nicole on February 16, 2011 at 10:59 PM Comments comments (3)

In the never-ending experimentation we perform on Aiden daily in regards to meds, treatments, and routine modifications, here's the latest:

 

To qualify for a Medicaid nurse in CO, which we're working on for school next year, he needs to show dependence on oxygen (desatting below 85% within 15 minutes of removing the O2) or tube feeding necessities, for "shoo-in" private duty nursing qualification. So where does that put me? Sitting on his bed with his O2 turned off, hoping (?!?) he desats within the 15 minute time frame. So far he's gone down to 85% once, but that was 20 minutes after falling asleep.  Damn!

 

How crazy is it that they won't provide nurses for "monitoring" or "in case of emergency" (which, quite honestly is about one out of every three days he attends school, for the measley hour and a half he's there), but will provide nurses if O2 is required. As if that's a difficult task or requires skilled nursing judgement? 

 

1. Open tank.

2. Attach tubes to nose.

3. Sit and read a book. 

 

Why is a nurse necessary for those steps, but not for the administration of emergency medication or for judging whether he's even having a seizure?  Why do they (Medicaid) not consider judging whether a child is having a seizure or not a skilled nursing task?  They can be so subtle, and people without a medical background don't even recognize them, yet they're dangerous!

 

Shoot - there goes my 2nd 15 minute window, and the lowest he got was 91%.  Guess what, Medicaid:  In the hospital, they'd put him back on O2 for 91%.  Just my two cents.

 

Moms

Posted by Nicole on February 16, 2011 at 12:27 PM Comments comments (1)

Are mothers and mother in laws not just the greatest thing since sliced bread? Wait – they invented sliced bread. (That, and every other time-saving convenience we enjoy in our pampered lives as housewives stay at home moms these days. Seriously, watching Mad Men and thinking of how hard this life was for my grandmas, I can only thank my lucky stars I live in the age of washing machines, air conditioning, and wrinkle free shirts.) Getting back to those angels known as mothers.

 

In the past 3 weeks both my mom and my mother in law have been out here (separately) and they are so helpful in different ways. They play with us, go out to lunch with us, or take care of a fraction of the boys while I tend to the other fraction. I’ve gotten to run outside with Lexie, taken a shower without yelling out the door every few minutes, “Aiden? Are you okay?” and even read a magazine. How great are these creatures we call mothers??

 

My mom went galavanting with me, out to lunch, and walked the boys to and from school while she was here. Andy and I even got to see a movie together for the first time since July. She did laundry, kept me company during the day, and generally “took over” for a few days. Best of all is her company, though. Real conversation with an adult between the hours of 6am and 7pm - How refreshing!

 

Then, a mere 2 weeks later, we had a glorious ski day in Vail on Saturday thanks to my mother in law offering to come the same weekend my sister planned a getaway so we grown-ups could ski like we haven’t skied since we were teenagers. Sliced. Bread. (For the record, I am fully aware how lucky I am to not only have one mother, but two watching out for my family and me. My mother in law does not satisfy the general PITA rule out there applying to mothers in law. Never has.)

 

Want to know the crazy part? I feel like we spend more quality time together since we moved away. These two ladies have always been there for us with offers of help and breaks, but for some reason it’s easier and more fun to take advantage of said offers when they’re staying in the same house with us. I am fairly certain they do not feel the same way and secretly hope Andy gets fired so we’ll move back to Minnesota, but that’s my story and I’m sticking to it 

No Words

Posted by Nicole on February 7, 2011 at 11:14 PM Comments comments (0)

Here’s another one of those words-can’t-express-the-sentiment situations. What do you put on the internet for everyone to read about other children dying? It’s not my pain to discuss – mine doesn’t even compare to the real earth-shattering devastation three other families are dealing with this week. And yet it’s still there.

 

I didn’t know any of the children who passed this week. One, an 8 year old, succomed to a long seizure after contracting H1N1. He looked like a happy kid, more “normal” than not, smiling, playing, someone I’d hope Aiden could be like. And then he was gone. I feel guilty about the sigh of relief I involuntarily released upon realizing Aiden’s already had H1N1 and though it was a difficult 6 weeks, he made it through.

 

Another, a 3 year old boy, let go after a 2 and a half hour seizure. There just are no words.

 

If there are no words for those two, what am I supposed to feel for the family whose daughter is on life support after seizing for 2 days as they contemplate whether to let her go?

 

I feel lucky, and blessed, and out of control. Aiden had a bad week, but he’s back again, smiling, laughing, learning, and loving. I don’t know why it was their time and not his, and I can’t imagine waking up one day without him. Yet I do imagine it, usually when one of our angels is taken too soon.

 

I didn’t mean for this to be a “downer” entry – I haven’t even told anyone about the children on my mind this week because I don’t want to fixate on events that may never happen to us. On the other hand, I can’t simply ignore them and move on as if nothing’s happened – they’ve colored each moment I’ve watched Aiden from the other side of the room and thanked God he’s still here with us.

 

So there you have it – No pearls of wisdom, no humorous moments, a little guilt, a lot of love, and sorrow for families I’ve never met before. That’s where I am this week.

Turtle Doves

Posted by Nicole on January 31, 2011 at 11:29 PM Comments comments (0)

So, I write a lot about how this roller coaster affects me, and how it affects Aiden. What I leave out sometimes (maybe because it’s not mine to discuss) is how it affects Andy. For those of you who don’t know our story, we’ve been together for a long time. A really long time. As in, since we were 14 years old, and not just “together” as friends, but “together-together,” dating through junior high, high school, and even college. By the time we got married we had celebrated anniversaries a lot of married couples don’t even make it to.

 

It’d be the understatement of the year to say we’re different people than we were back then, that we’ve “changed,” that we were immature and childish. We were the geeky couple everyone hated because it wasn’t quite as attractive to watch us kiss at our lockers each day as it was to watch the head cheerleader and her quarterback say "goodbye." We were insecure, we were unsure of ourselves without the other one, and we were a cliché. But ask me what I love about him and I won’t hesitate 2 seconds before telling you it’s his loyalty. It always has been.

 

When Aiden first started having seizures, we dealt with them very differently. I was the worry-wart, scared at every second he’d have “another one,” despite those long 2-3 month stretches of seizure freedom back then. The doctors assured us he’d grow out of them, and Andy was the ever-calm voice of reason, desperately trying to convince me to relax.

 

But then when he didn’t grow out of them, it hit Andy hard. Though he was the first to discover Dravet syndrome and the fact that Aiden’s history matched perfectly, he didn’t want to believe it could be true for a long time. He was the rock, I was the water. Together, needing each other even to form, but made of completely different materials.

 

Perhaps the most amazing part of this journey is how much it’s brought us together, like all of the struggles in life do eventually, if you’re patient enough. He won’t admit that he worries, or that my worries are valid, but where was he yesterday? He was up in the attic, hard-wiring Aiden’s newest security camera in over his bed, and running the cables to the monster-sized flat screen tv in our bedroom. This man, who originally not only laughed at but was genuinely annoyed by my insistence that we have a video camera on him years ago, was up there climbing around in fiberglass, poking holes in walls (and ceilings!), his least favorite activity, and he did it of his own accord. I didn’t even realize we needed a different solution: That is how in-tune with each other we’ve become over the past 18 years.

 

I wear a necklace with three words: “Meant,” “To,” and “Be,” one for each child. Maybe there should be a fourth, though, for Andy. At midnight last night, the new camera's inaugural run, I woke up to see Aiden’s eyes open, having large, silent jerks on the huge tv. He was in a long, scary, complex partial seizure, which I wouldn’t have seen on the little baby video monitor we’ve been using for so long. (For what it’s worth, those are sometimes the saddest ones to watch, because they are clearly aware of some of their surroundings, but can’t communicate. A single crocodile tear running down his cheek was the only way he could say, “Stay with me. I’m scared.”;) Then, at 5:59am I was able to quietly say, “Andy! Seizure!” as I laid next to him in bed, and Andy came rushing in with Diastat for a nasty tonic clonic.   (Where was Lexie?  Slumbering in our room.  What can I say?  She's one tuckered service dog, and we've been less than strict in enforcing the "sleep with Aiden" rule.)

 

He is a much more closed book about how this journey affects him. But he’s a fascinating “read,” when you get a glimpse of what’s going on inside that incredible mind of his.

Thick Skin

Posted by Nicole on January 28, 2011 at 6:43 PM Comments comments (4)

Here's what they don't tell you in mother training: The compliments you'll get as you move through life raising a child with special needs are not what you would have hoped. Oddly, the more you don your mothering hat, the less you'll care. (It's more than a hat for special needs kids, though... More like full body armour complete with a sword and shield that lets more through than one might think.)

 

Today was Aiden's official IEP meeting for Colorado.  The second one, to be fair, as the first resulted in my realization that this was going to take some time for my requests to sink in.  I was as prepared as I could be for two main fights (and a lot of minor, nit-picky ones): 1. Getting a nurse in the building next year so Aiden could attend kindergarten without his mother, and 2: Ensuring he received speech and/or occupational therapy in a 1:1 setting instead of incorporated into the classroom for at least part of the time each week.

 

It went well!  No, I haven't signed a thing yet, but we are making progress.  They are not accustomed to providing any type of 1:1 therapies to kids in preschool out here and have touted their "inclusive" and "integrative" settings until my ears were about to fall off.  I fully support both inclusion and integration! It just so happens that he had BOTH integration and 1:1 therapy in Minnesota, and that is the most appropriate way to do it for him. Period. The good news is that they "gave" a little on that front, and I hope they will do so for other kids who will benefit from a mixture in the future.

 

The nursing for next year is coming along... There is a lot left to figure out, but I was able to get the need for a more appropriate health plan than the present "DCS is not responsible for any medical care while Aiden is in preschool: Mother will accompany him and provide all necessary medical intervention" stated clearly on the IEP. And the county nurse agrees he needs a nurse next year, so that's good.

 

The meeting was 2 hours long - shorter than some have been in the past regarding Aiden. And I think some of the team members were exhausted by the end. Me? Not a bit. Because even arguing politely for 2 hours is infinitely more relaxing than caring for  seizing child, and that is my fulltime job.

 

So when the meeting wrapped up in favor of continuing the discussion on Monday, and I apologized for being such a pain in the neck, they said what everyone does: "Don't apologize. You're being his advocate." I really do appreciate their understanding and politeness. But truthfully? I kind of wish I didn't have to "be his advocate," teacher-speak for a parent who's always ready for a fight. That I could be complimented on the sets I helped paint for Owen's 3rd grade performance last night. Or that someone could say, "Alec's mom - she's such a sweetie!" (For the record, I din't lift one finger to help Owen's class performance. And no one in Alec's class even knows who I am because I am always with Smoochie Face, thus not one of the "helpers." I wouldn't even recognize their teachers in a lineup, not to mention the other parents who organize, volunteer, and pitch in to make their schooling a success.)

 

Mothering a special needs child is fulfilling, but someone should warn you before you start that the thick skin you're inevitably going to grow isn't going to be pretty, or soft, or feminine. He needs me to push past my level of comfort, and I do. It just doesn't always endear me to the few adults with whom I interact.

I'm a Big Kid Now.

Posted by Nicole on January 19, 2011 at 11:19 AM Comments comments (2)

This is a quick one, but I think it's finally safe for me to crawl out from behind the huge barrier I've put up in regards to Aiden's potty training issues and finally say...  He is 90% trained!

 

For those of you not familiar with this particular roller coaster, see a balance beam post from November 2009, and quite a few thereafter.  In all honesty, this is a deeper issue for me than it seems at first glance.  I joke about it and say I'm fine with him in diapers, but there are a lot of unsaid feelings and disappointment lingering under the surface.   I've been closed off and not optimistic with each attempt over the past 2 years because he was actually 85% potty trained for the better part of a year back when he was almost 3, until he lost his skills thanks to a long seizure and hospital stay.  There've been numerous attempts since then, which is why I wasn't willing to talk about this one at first.

 

But.... He's doing it!  And has been for almost 2 weeks now!  The only accidents are from misfires while sitting waiting for.. you know, and those don't count. 

 

For 2 years now I've been eating my oh-so-arrogant words of wisdom to my fellow ECFE parents back when Owen and Alec were trained at a young age and theirs were still struggling.  "Don't stress out about it," I'd say, "It's not like they're going to head off to kindergarten in diapers."  Except that's exactly where Aiden was headed. 

 

I'm so proud of you, Aiden!  You have grown so much over the past 6 months, and you are so SMART!!

La Dolce Vida: 0, Lexie and Nicole: 2

Posted by Nicole on January 14, 2011 at 10:41 PM Comments comments (2)

I don’t know what’s better: The sound of Aiden giggling, or the sound of him sleeping. Seriously, it’s a toss up. I’m just saying.

 

Here’s where we sit this week:

 

1. We are contemplating the VNS (Vagal Nerve Stimulator) for him based on our latest neurology appt. It’s like a pacemaker for the brain – It’s a device implanted in his chest that sends electrical impulses to his huge Vagal Nerve every 30 seconds or so, based on how we adjust the settings. It is supposed to interrupt seizure activity and keep his brain chugging along as it should be. Side effects include a flutter in his speech whenever it’s discharging, the side effects of a general operation for implantation, and possible itchy/scratchy throat. On the other hand, it’s not another med to slow his learning down and may be able to attenuate those darn eye flutters he battles everyday. Plus it comes with a really cool magnet Lexie could wear and, as she’s snuggling him during a seizure, she’d be upping the impulse from the device with the magnet in her cape helping to stop the seizure. If that’s not cool, I don’t know what is.

 

2. I need school to scale back their teaching style. Yes, it’s great that the other 5 year olds are learning how to measure with a tape measure. Rock on, General Ed students! But seriously? Explaining to Aiden that “It’s a little more than 3 inches, but not quite 4 inches, which means it’s probably about 3 and a half inches” is the biggest waste of 45 seconds I can think of right now. Let’s focus on this: “Look! I see a number one! And a number two!” And leave it at that.

 

3. While we’re on that topic, Let’s forget the whole “A-I-D-E-N” schpeel and stick with “A-I.” I’ve tried to explain that we’ve been stuck on Letter B for 2 years now, but I don’t think anyone’s listening. And when he says, “Up, gow, Ay-Ayen,” He is saying “A.” Just a little FYI.

 

4. The sound of Aiden sleeping is great. So great that I pretend it’s there even when it’s not. Like at 4:35 this morning, for example, when he was obviously seizing and my sleepified brain thought, “It’s best if we just ride this out..” and promptly fell back asleep. Did I check his pupils for proper dilation? Absolutely. But when they failed to change based on the light I shined in his eyes, I took note and bedded right back down into that pillow next to him.  Epic fail, EMS Mom.

 

5.  I'm not ready to claim success and I don't really want to talk about it yet (so don't ask how he's doing), but he's been in undies for 7 days. 

 

6. La Dolce Vida: You tell me “No dogs allowed,” every time we walk in. Every. Single. Time. Do you think that makes me not want to come back?  Hi, I'm Nicole, the most stubborn girl you've ever met. You’ve seriously underestimated me, and this is now a little game for us. Lexie just became your best customer.  Oh, and the whole kids-eat-free thing on Sunday nights was a total surprise, though it played to my side of the game quite nicely, thank you very much. Your turn!

People used to call me sweet...

Posted by Nicole on January 7, 2011 at 11:03 PM Comments comments (3)

I try not to be that parent, I really do.  You know the one.  The woman who saunters into your student's conferences 5 minutes late for a 10 minute conference and demands to know why her genius child isn't getting an A in your class.  It can't be because he doesn't do his homework, because you should be teaching everything he needs to know in class and homework is really just for the slow kids to do anyways, right?  Regardless, that parent would like to know what you're going to do to move that D+ up to an A by the end of the semester.  In two weeks.

 

I succeed in the older boys' cases, I think.  (Let's ignore the little busing situation earlier this year when I argued about the parent drivers for the field trip despite there being no other option and call it even, okay?  Thanks.)  I let them screw up, and explain why their scores maybe weren't as high as they could have been.  I urge them to do their homework but don't complain to the teachers when I think it's busywork or just very poorly designed.  (Did you catch that arrogance?  Wink.)

 

But I'm afraid when it comes to Smooch I pin my ears back and the claws come out.   This Monday, for example, I apparently reamed the director of international shipments at Fed Ex for an error that was, in fact, not theirs to begin with.  (They definitely screwed up, but the error started with the shipper in France.)  And when I say reamed, I mean yelled at the top of my lungs, "No, Angela, you didn't do your best to deliver the package.  You did a mediocre job, quit trying, and NEVER TRIED TO CONTACT ME.  I need that package in 7 days' time, or my son will be in the hospital seizing constantly because your company failed to deliver a package marked "URGENT - Medical" and sent it back to France.  It'll be on your shoulders."

 

Yikes.

 

Did I really say that?  I have it on good authority that I did.  My almost -9- year old recited it back nearly verbatim, and informed me the entire elementary school heard it, too, because I was on my cell phone having walked them to school.  Whoops.  I'm sorry about that, Sweetheart.

 

I'm going to blame it on stress.  But aren't we all stressed out about something?  I don't see you running around yelling at people on your cell phone.  What is it about this fight that seems so unjust and makes me such an unpleasant person to deal with when things go wrong?  I think it's the rarity of the syndrome.  It's like every piece is new to whomever you're dealing with (the doctors who are surprised that someone with epilepsy needs to be followed by an orthopedic surgeon, or the people at FedEx who don't understand why you can't just run to Walgreens if he's almost out of meds).  They don't seem to get that every single piece of his care is a fight, because so few here have followed the same path. 

 

To Angela's credit, she did inform me where the package was every day at 8am sharp.  And they must have pulled some serious strings to get it out of French customs, shipped to the US, through US customs, and hand delivered to me today, Friday, at 10:30am, a process that usually takes exactly 22 days.  Sadly, the squeaky wheel does indeed get the oil.

 

I could say that I'm going to be a better person next week and keep my mouth shut and my claws retracted.  But I'm not.  Because next week is kindergarten registration, and he can't go to kindergarten until there is a nurse present in the building, our next hurdle to cross.  (Did I say hurdle?  This one is going to be more of a high-jump, without the help of a pole.)  Would it suffice to say I'll be calmer, though just as stubborn?  I think that's the best I can do for the foreseeable future!

Joy to the World!

Posted by Nicole on December 30, 2010 at 10:57 AM Comments comments (1)

JOY TO THE WORLD!

 

I saw those words lit up in a small town square yesterday morning at 4:00 am as we drove the country roads through South Western Minnesota, on our way home to Colorado after nearly two weeks with our families. Early morning captures the peace and tranquility of miles of farm fields buried in 3 feet of snow like no other time, the crescent moonlight reflecting off the snow tinting everything just slightly bluish. Most households had turned their Christmas lights off for the night, but the few left on timers shone like beacons across the frozen, sleeping land.

 

JOY TO THE WORLD!

 

A savior is born! (The implied words left off the sign for political correctness.) Of course - it is the reason for the season, and the meaning behind all of the travels, presents, lights, cookies, and decorations. But I read those words differently yesterday, for unto me a child was born this year. Not a baby, but a child full of grace, a child full of happiness, a child who brought JOY to everyone as he opened his very own presents. Christmases past have been wrought with seizures, confusion, frustration, pity that he misses out on everything fun, and bitter sweetness. Last year was closer, but this year tops what I thought represented progress.

 

JOY TO THE WORLD!

 

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#1 gift?  Monster Truck Mater.

 

 

 

Aiden had the best Christmas ever, meaning the rest of our family did, too. He dove into his presents, stopping to play with each one he opened with the biggest grin of amazement you’ve ever seen. He skipped over the clothes and pulled out the toys like any normal 3 year old would, and his “haa ooo” (“thank you” ) was so precious I could’ve bottled it up just to open it and breathe in this sweetness of blossoming child whenever I please. He opened and closed our trip with seizures like bookends – one in the car 12 hours into our drive, just over the Minnesota border, and one just before bed the night before we left. (Plus one as we unpacked at home last night for good measure – Thanks for that, Smooch!) The flutters came right along with us to Minnesota, but he was happy, so we were too. Beginning this journey I never would have said I’d be happy to see 3 grand mal seizures in less than two weeks, but time brings perspective. Who knew “seizure free” wasn’t what I should have been hoping for back then?

 

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Peace and tranquility are not exactly words I use often to describe our family of five and a service dog. You might not use those words, either, especially at the beginning of a long drive back to Colorado in a car stuffed to the gills (despite the newly acquired roof rack), a panting dog in your ear, and Aiden talking to himself in the back seat with bright eyes and a bushy tail at 4:00am while we propped our eyes open with toothpicks. But I felt peace, tranquility, and joy yesterday thanks to the frozen tundra “back home,” a small town Christmas sign, and the child born unto me this past year.

 

JOY TO THE WORLD!

 

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Okay, so it's not Smooch.  But how cute is he? 

Have you ever seen a little boy so excited for a Harry Potter scarf? 

 Thank you, Grandma Jean!

 

 

Done and done.

Posted by Nicole on December 15, 2010 at 10:27 PM Comments comments (2)

And... We're done.

 

Or "we've finished," though that doesn't sound nearly as final as the grammatically incorrect version.  Aiden's been getting steadily worse since the last entry 5 days ago, despite my best attempts to manipulate his diet and calculate/serve exactly what the dieticians tell me to, so we can honestly say his ups and downs were just the natural roller coaster we live called Dravet.  The day after the last update he had a big seizure out of the blue, keeping his regular 7-10 day frequency, and over the past nearly 3 weeks there's been more bad than good, more frustration than hope, and more drawbacks than potential payoffs.  

 

The good news?  It turns out he was pretty much on the 4:1 (ratio fats: protein + carbs) ketogenic diet for the past week, albeit with too much protein and too many calories.  Though MAD is not as restrictive as keto in terms of protein consumption, calorie and fluid restriction, or measuring food, "pushing fats" seems to be the key in reducing seizures, and once you've pushed the fats to the upper limit there's not much room for anything else, which is how we inadvertently ended up at a ratio of 4:1 (fats:carbs+protein).   All dieticians are careful to stress that the diets can take time to work, though many of the children who are ultimately successful on them see some sort of progress in the first two weeks despite the lethargy and difficulty.

 

The bad news?  I feel stuck between a rock and a hard place in that I feel like I gave it my best shot this time and it wasn't doing any good.  After tearing the candy cane off the card his teacher gave him yesterday, right in front of his face (that's the one thing he's consistently asked for each day:  candycanes) and explaining that he couldn't have any sugar or carbs because of the diet that was supposedly helping his seizures as we left the classroom because he was having so many seizures, I realized it was not working.

 

Yes, we could have pushed through and stuck with it for the recommended 3 month trial period, as any good dietician will suggest.  At the same time, he goes through so many ups and downs that who knows if, in 3 months, when he was much improved, it could really be attributed to the diet anyways? Seeing how tired, sad, and still fluttery he was, and how happy, energetic, and talkative he is this morning (though still fluttery), I'm feeling better about this decision than I was last night.  It involved a few tears, feelings of inadequacy, and two margaritas.

 

Feel like you're getting two different stories on this blog? Welcome into our heads and our lives.  Chasing seizures is like chasing a fly - you feel like you're about to catch them and then they take a quick turn to the left, leaving you standing thinking, "Was I really as close as I thought?  Or did my eyes betray me and I was never about to catch them?"

 

It's not a science, as much as I'd like to force it to be. 

Oh, Crap.

Posted by Nicole on December 10, 2010 at 11:24 PM Comments comments (3)

You know that point when you’re teetering on the edge of something big, and you look back over your shoulder thinking, “What the hell am I doing? Life was good!” and at the same time you glance ahead to the chasm of the unknown and think, “But what if..?” That’s where we are.

 

After a week of his usual ups and downs seizure-wise, with a lot of added lethargy and exhaustion from the new diet, he seems to have turned the corner, his body learning to process fats for energy rather than carbohydrates. (Disclaimer: It could totally still be his usual ups and downs and another big one is bound to rear its ugly head one of these days, but optimism is precious. I’m sticking to it today. Day 10 and counting.) He’s not complaining of hunger anymore, I don’t feel the need to check his ketones every hour, and he’s developed a few favorite foods we’re comfortable with.

 

But where the heck does that leave us?? I’ll tell you exactly where: It leaves us ready to head back to Minnesota in 7 days for a good old fashioned Christmas with the best cooks known to mankind: grandmas. Christmas cookies, other people’s kitchens, and cousins – they all spell disaster. Or at least glutton. And a buttload of sugar. (On that note, don’t ask me how we’re planning to get his oxygen tanks, diet necessities, and Christmas presents into the car – the boys and I may be able to get to MN, but Andy is going to have to strap himself to the roof for the way home. I’m totally okay with that.)

 

I still don’t know if the diet is helping him, but holy cow has he been on fire the past couple of days. Remember that Diego puzzle I mentioned a few weeks ago? Well, he dumped out a similar Cars puzzle today, and proceeded to complete it. By himself. (Okay, so I had to fill in the edges where there are no characters, but he did 80%!)

 

And school? He’s the model classroom pet. His attention span is, oh, about 16 times that of the fish-like tendency I usually describe him as. The kids there take such good care of him, telling him when to clean up and when to put his books away, and he’s downright calm there. (Does lying on the ground in the middle of group time half falling asleep count as calm? No? Okay, so then maybe he’s a little lethargic.)

 

I cook. A lot. I throw food away. A lot. But he had one eye flutter today. One! I’ll cook circles around anyone to keep him at that level. There have been some tough, perseverance testing days these past two weeks, accompanied by an exorbitant amount of praying and asking for “signs,” and I will have a lot of explaining to do when we get back to the relatives’ houses. Who knows? He may tank tomorrow and it won’t even be a big deal. But the “Holy crap, what have I done?” feeling is looming right about now. Hang on, Family, Here we come.


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