My Third (Furry) Baby

I'm going to be honest -- before I brought Tigger home, I really did think he was going to behave less like a living being and more like a robot. Give command -- follow command. Perfect obedience, some affectionate behavior at designated intervals, but no real personality or independence to speak of. What can I say? I'm going to attribute my embarrassing ignorance to having little experience with dogs in general, and a complete lack of experience in training or working with a service dog. As stated in an earlier post -- I can be proven wrong (and it is usually a good thing that I am).

Tigger, as it turns out, has a lot of personality! He is extremely affectionate and friendly -- he loves people, other dogs, and even my two mean old cats (he looks so sad when they hiss at him!). Like a little kid, he loves attention and really can't stand to be alone for even a few moments. New friends to greet, belly rubs, easy cheese, and stuffed animals with squeakers, all make Tigger a very happy puppy. 

In many ways, all this personality is a pleasant surprise. We've really fallen in love with him and his sweet nature. And I think he truly loves everybody back. Not to mention that, for a 7 month old puppy, he is REMARKABLY well-behaved: you only need to tell him once to "leave it," he never begs, is generally quite calm, and he is usually very willing to follow many commands -- all the result of the last 5 months of intensive puppy and obedience training which I am VERY grateful to our trainers for!

Simon also continues to react to Tigger in a truly remarkable way -- he treats him like a little brother. He bosses him around (Tigger! You go that way! You sleep on your bed! Time to eat!), gives him advice (Tigger! You need to be patient! You need to be a small dog, you're too big!), and he likes to help take care of him as much as he is able. Simon likes to hold his leash, get his food, and give him his toys to play with.

Simon really enjoyed showing Tigger all the new toys we had gotten him (so he has something to do OTHER than chew the cords of medical equipment!)

 However, just like the baby he is, Tigger fusses when he can't go where he wants when he wants to, and he hates being sent to bed. He gets into things because he is curious, or bored (like chewing up the cord of Simon's pulse oximeter after bedtime a couple nights ago! ack!). He gets excited and tests his boundaries in new situations. He also has opinions about who he wants to listen to and be with -- he LOVES Brian and if Brian is home he follows him constantly (despite our ongoing efforts to get him to attach to Simon).

For my part, I've come to realize that, while Tigger is here to serve our family, he is also a member of it. He's another kid to add to our clan, albeit a very furry one. Though he learns fast and is well behaved he still needs some of the things that any kid needs, especially in a new environment.

So -- I've re-arranged Simon's room to give them both their own space. Siblings need that, I think. Simon now has a bigger bunk bed (playtime on top, sleep on the bottom) to accommodate sleepovers with Tigger, but Tigger also has his very own corner of Simon's room with a full toy box of options for him to entertain himself with something other than the cords of medical equipment in the wee hours of the night.

Simon on Simon's bed.

Simon on Tigger's bed.

I'm also providing Tigger with some clearer boundaries. While he behaves like a dream for Brian, he tends to ignore my commands half the time, and he pulls at his leash a lot when I walk him. Apparently, Tigger does not see this momma as an alpha (ha! If only he knew who really made the decisions around here!). I consulted with our trainer, Kim, about this and on her suggestion I got him a "gentle leader" harness that goes on his face for walking and I have acquired a rather loud clicker to get his attention. I also got some good advice from the trainer at Petsmart -- he told me to give a command once, wait for Tigger to follow it and then help him follow through if he doesn't listen to me (rather then "beg" him to do it repeatedly which is what I had been doing). So far, all of this seems to be helping Tigger pay better attention to me. We'll get there.

Tigger with me wearing his new "gentle leader" harness at the grocery store. He did great!

Our other big challenge is getting Tigger to "attach" to Simon as his boy. He likes Simon, but doesn't follow him or pay him any more attention than he does anyone else. Of course, it doesn't help that the one thing Simon does not like (which we are working on) is being very physically affectionate with Tigger. He will pet him when asked to, but only briefly. If we ask him to hug Tigger, he says "no thanks." I think Simon might not yet be that comfortable with Tigger -- especially his size. However, the fact that he is as relaxed with him as he has been thus far is a really good sign. I imagine that, given a few more weeks and a lot more encouragement, Simon will come to love on Tigger like the big teddy bear that he is. I also think that this evolving bond of affection will be the thing that finally gets Tigger to see Simon as "his boy" and help him divert his focus from Brian to Simon.

Overall -- the past few days have been very exciting, and a little overwhelming. I'm simultaneously falling in love with our new addition, and tentatively feeling out this new ground as a pet-parent and service dog trainer trainee. I have so much to learn, but there is one thing I can say for certain -- the more I learn, and the more I see Simon interact with Tigger, the more confident I am that we have made the best choice for Simon and our entire family.  We will get there!

Welcome Home Tigger!

It finally came – the day we have been working towards, preparing for, and eagerly awaiting – May 27th; the day we got to meet Tigger and bring him home with us! Though I admit to having a slight case of nerves (My first dog! And not just any dog, a very special service dog I am going to help train! Eep!), our anticipation was well rewarded with an amazing homecoming. Below, see how our first day with Tigger unfolded -- in pictures!

Tigger's trainer, Kim from Noelle's Dogs Four Hope, requested that we meet her at a mall near her home in PA. She wanted to meet in a public place so she could not only introduce us to Tigger, but could begin to train us on the public access training commands we will be working on while we have Tigger for the next 6 months (after which time he returns to Kim for 3 final months of specialty seizure response training). Though Simon was a little hesitant at first, with some encouragement he pat Tigger's head. Tigger is very gentle and sat quite still as he met his boy for the first time.

Over the next 2 hours we walked around the mall practicing commands and getting to know our new family member. Though I could tell Tigger wasn't quite sure who to listen to (I held the leash and the treats but he still looked to Kim for commands), I was impressed by how well-behaved this seven-month-old puppy was in a relatively populated public setting. The only time he balked was at the elevator (he doesn't like elevators -- something we have to work on with him), and when it was time for him to part from his trainer. I know it was hard for Kim to leave him, too -- how could you not fall in love with this face?

Pretty soon we were on our own -- a newly minted service dog family. 

Everyone took a nap on the way home. It had been a very busy afternoon for kids and puppies (and parents!).

When we came home we discovered our house had been decorated! Our amazing neighbors, the Beckers, had created a very warm welcome. I teared up (as usual) reading the note on the door: "Dear Tiggger, We want to welcome you to our neighborhood! You could not of asked for a better family then the Hatcher's! You will love Simon and adore Olivia, we do! Love, The Beckers"

Tigger was eager to explore his new surroundings and (much to our surprise) Simon wanted to help. I think Simon understands how it feels to want to explore a new place, and so he took Tigger's leash for his very first walk around the house. Simon let Tigger lead, which was very polite of him.

Dinner time! We've been told to try to get Simon to do as much of the care-taking as possible, so Tigger will understand that Simon is "his" boy. In fact, one of the main things we will be working on over the next several months is creating a bond between Simon and Tigger.

Tigger was very interested in Simon's bath. Simon told Tigger he was too big to join him in the tub and should come back later.

Time for bed. We had been nervous about this -- we didn't know whether Simon would be okay with the dog in his room, or if Tigger would be alright being left with Simon. But, one of the main reasons we got Tigger was to help us respond to Simon's nocturnal seizures, and for him to do that he needs to be with Simon when he sleeps. "Start out as you mean to go on" are words I have lived by since the days of babyhood and Tigger's trainer agreed. Put them in the room together and shut the door was what she suggested and (after talking to Simon about it and having him say it was okay, another surprise), that was what we did.

As soon as we left the "boys" alone together, Brian and I turned on the video monitor to watch what happened. We were pretty anxious, especially since Tigger started to whine almost as soon as we shut the door, and Simon pulled his covers over his head. However, after just a little while, a day that had already been special became spectacular.

As Tigger cried, Simon told him to "shh!", but gradually he started to talk to Tigger. And he talked to Tigger for over an hour -- IN ARTICULATE, ORIGINAL SENTENCES THAT DEMONSTRATED EMPATHY.

Here is a sample from a video we took (as soon as we recovered from our shock enough to realize we should be recording this momentous occasion!)

"I'm sorry Tigger. It's okay. You're trapped. Be quiet. Time to go to sleep. Let's take a nap." Then, when Tigger hopped onto Simon's rather small toddler bed: "Tigger, you're too big. You sleep on your bed (pointing) over there. Time to go to sleep." Tigger didn't budge. Simon sat, thinking for a moment, and then he finally decided to give Tigger his nightlight and lay down with him. (I can't overstate how shocked we were!). Finally, Simon sang a song to Tigger that he sings to himself when he is scared at the doctor's. Within a few more minutes, they were both asleep. 

Now, I had heard about service dogs being used to encourage language and empathy in kids with autism. I'd heard that kids who were otherwise inarticulate and friendless were able to gain both language skills and a bond of love when paired with the right animal. I honestly never really believed it. Though I hoped that Simon would find a friendship of sorts with Tigger, I have been so completely focused on Tigger's potential to protect Simon during one of his dangerous status seizures that I really considered anything additional a pleasant but unlikely and less necessary bonus.

I LOVE BEING WRONG.

Today, we took Tigger and Simon out for the first time on our own to buy a bed big enough for the two of them.

Arts in Action

One of my very favorite essays on design is called "How Good is Good" by prominent New York-based graphic designer, Stephan Sagmeister. In the essay, Sagmeister talks about the fact that he loves what he does and he is doing good work, which is great until he finds that he wants to do something more than just make things that look good. He also wants to do good. To that end, he attempts to apply his creative problem-solving skills to big world problems (like disaster relief). However, he quickly finds that his ideas are shot down (not something he is used to) because he doesn't understand the problems well enough -- he is too far removed from the situations he is trying to impact to have the correct perspective. Too far, that is, until 9/11. Suddenly the big world problem is on his doorstep, affecting his community, and he understands it all too well.

In the midst of that tragedy Sagmeister wishes he had the skill to do something direct to help those around him. He wishes he was a rescue worker, a paramedic, or a firefighter. He feels helpless because he knows that even if he went down to ground zero he wouldn't be able to do much other than get in the way. Fortunately, he eventually comes to realize that he can do something -- he can do good by doing what he is good at. He uses his prodigious skills as a designer to create the logo, T-shirts, advertising, and album cover for the Concert for New York that raised $20 million in funds for firefighters and policemen.

The reason I love this essay is because it reflects what I try to do in my own practice as a designer. I try to do good work, but I also choose to do that work for causes I believe in (like education, the arts, and health care). The message that we can make an impact by doing what we love, what we are good at, is one that I've cherished -- but I never felt that it applied to the problems I have been facing in my own life. When it comes to things with Simon I always try to be proactive, but I also find that there are plenty of times when I feel helpless.  I sometimes think I can't make a big enough difference because I am not a neurologist, or a therapist, or a teacher. I want to fix a problem I fear I have no control over.

So, when the art teacher at Ridgely Middle School contact me because her students had decided to make Simon and Tigger the beneficiary for their "Arts in Action" event, it seemed like some sort of cosmic twist of fate (or maybe the hand of a higher power trying to remind me of my own convictions). One of the Ridgely students is Simon's Kindergarten teacher's daughter, Kayla. Kayla knew about Simon from her mom and, when it was time to make suggestions about the focus for "Arts in Action" (and where the proceeds from the silent auction of the student artwork should go), she suggested Simon's needs and shared this blog with her teacher and classmates. They agreed, and last Wednesday we attended this great event as a family (and Simon attended as the rock star he is).

It was a great night that celebrated art in many forms (there was a play, a talent show, lots of student art and crafts to participate in). The turn out was wonderful and there was a huge showing of support from Simon's school. I'd created a slide show about Simon, Tigger, and epilepsy awareness, and the students made posters as well. Lots of people stopped to talk to me, some to ask questions or share their personal stories of a loved one affected by issues they had in common with Simon, and some people just said they were happy to meet us and were keeping us on their prayer lists.

In addition to being an incredible showing of community love for our little guy; the event got me thinking that maybe I'm not completely helpless when it comes to some of the problems we've encountered on our journey with Simon. That maybe, by doing what I am good at, I can make an impact on some of the big world problem on my very own doorstep. So, after a bit of research (okay, a lot of research), I determined that one of the big problems I see is a lack of patient education during epilepsy diagnosis. Not once have we been given so much as a URL by our doctors to help us find resources and/or support -- and, sadly, I found that my experience is far from unique. Almost everyone I spoke to about their experience said that when they were diagnosed with epilepsy they went home with little more than a prescription and a "good luck, let me know if you have any more seizures, see you in a few months" from their doctor.

Now, THIS is something I can do something about. I design patient education brochures (very nice ones, I might add), all the time for conditions as diverse as AIDS, Insomnia, and Hearing Loss! I could easily create something for Epilepsy... I just need a doctor to help with the writing, grant money to fund the project, and a way to find visibility to get it into the hands of doctors and then into the hands of patients. In my experience this happens by working with regional cause-focused foundations and the local heath departments. So.. earlier this week I called our local chapter of the Epilepsy Foundation. I told them what I felt needed to happen and why. And you know what, THEY AGREED WITH ME. Tuesday I have a meeting with several board members and the executive director. I intend to make a very strong case.

I'll let you know what happens. But, even if I get shot down, I know I'm in good company (like my buddy Stephan) and I also know that I am in the right. In this case, there is action that needs to be taken and it is art that is going to make it happen. Thanks to the students at Ridgely Middle School, I will keep trying and working and bugging people until I get accessible, resourceful, imperative patient education into the hands of those that need it.

Thank you so much for reminding me of the potential power for good I can have by doing what I am good at.

The theme of the night was "Pop Art!"

Some of the amazing sculptures created by the students for auction.

Simon with his super-awesome Kindergarten teacher and her super-awesome daughter, Kayla, who presented her classmates with the idea of using Art Action night to help Simon after she heard about him from her Mom. I know her mom is VERY proud of her, and I am too. What an amazing, kind girl!

Simon and I with Mrs. N, his fantastic aid from school (I don't know what we would do without her!)

Simon got into the action with his favorite creative pursuit, painting.

For some reason, they thought that it would be a good idea to give Simon the microphone. Rather than graciously thank his supporters, he took the opportunity to belt out a (rather long) tune in their honor. Complete with a big finish and a dramatic bow at the end. Thank goodness he's cute. (They even gave him an encore -- I was looking for a gong...)

Surviving Status

It happened again, Simon's third status epilepticus seizure in 18 months. It lasted for three hours, starting with only an increased heart rate and eye deviation, but ending as a full tonic-clonic seizure.

Though, by all accounts it was a major episode, a lot went right this time. That's the benefit of experience, I suppose. Because of the pulse oximeter Simon wears to bed, we had an alert system in place and caught the episode right away. Because we have been through this before, we had a plan in place and thereby avoided the chaos and confusion of ambulances and multiple hospitals by driving ourselves. Because we were able to go directly to our "home" hospital where pretty much all of Simon's doctors and care is centered, they had a record of what medications had worked in the past and were able to follow it carefully, without overloading him with meds and putting him into a coma. Because of this, we avoided the intensive care unit and, just 33 hours later, we are home again.

Simon (who is officially the toughest kid I've ever known) miraculously came through it okay. He's still loopy from the meds and very tired and irritable, but he is talking to us and seems otherwise fine. We have follow up appointments set up, more to discuss with our doctors, and more to worry about (for example, we have no idea why he had this seizure)... but for now, I think, a picture is worth a thousand words and I just want to focus on our miracle. Simon survived, he is my miracle, and for now I can't be anything but grateful.

From beginning to ending, here is how we survived status together, again.

Almost as soon as we got to the hospital, Simon's seizure went from a partial to compex episode and was full on tonic-clonic. The very professional staff at Hopkins delivered lots of meds and oxygen, a little at a time. We stayed by him and were made to feel welcome throughout the entire episode. (The Neurologist wanted to know what area of the medical field we were in. He was a little confused when we said graphic design).

Simon stayed in the intermediate care ward while they decided whether to move us to the PICU or a floor room. We waited anxiously for the medicine to take effect and for the seizures to stop so we could avoid intensive care. Simon snored. Loudly.

As soon as Simon started to come around, he requested his teletubby video. Just like the very first time he woke from status. I wonder sometimes if he dreams about them.. (they are pretty freaky).

No rest for the weary. After sleeping off the medicine all day, Simon was up all night. To distract him from the wires and IV that were upsetting him, I took him on a very posh wagon tour of our ward.

Finally, a few moments of rest just before dawn.

I knew we were on the mend when all Simon wanted to do was go outside and play. 

Playing cymbals in the hall and your room is a great way to convince the nursing staff that you should be allowed to discharge early.

Finally, our discharge papers arrived. We tried not to run and skip on the way out.

We're really leaving!

Thank you to all the doctors, nurses, and staff at Hopkins for taking care of our baby. Thank you to everyone that visited, prayed, sent positive vibes, texted with me in the middle of the night, sent notes of encouragement over facebook, and continue to support us and our Simon with your love. I can't put into words what that means to us. It helps give us the strength we need to keep going.

Good Things to Come

I am SO excited! Over the past couple of weeks, Simon and I have found out about so many cool things, heard great news, and have gotten the ball rolling for lots of awesome stuff just over the horizon.


On the cool things front, this potential development in treating status seizures has me really excited.

Super speedy life saving meds!

It is an epi-pen like device that a caregiver could use to deliver effective medication as soon as a seizure goes past the 5-minute "normal(ish)" window. As you may know, the sooner you can treat a "status" seizure, the better chance you have to stop it before it becomes life-threatening. Right now, the options for this sort of immediate treatment aren't great (rectal diastat is what we've been given) and aren't totally effective in practice. A different medicine in a more convenient and effective delivery method are a really awesome advance that I can't wait to get my hands on!

Footwear with awesome hardware!

Another cool thing is the new AFO (ankle foot orthodic) that we have ordered for Simon. Simon has had an AFO for a couple of  years now, and we replace them as he outgrows them. This time, instead of being directed to our usual (slightly sketchy) orthodic equipment shop, we were able to get our casting/fitting done at Kennedy Krieger. The difference in treatment and options was like night and day, and I am (again) feeling so blessed that we have access to such great resources for Simon. Our new AFO will be hinged (articulated) and should allow him a greater range of movement. Of course, this also means he may run faster and be harder to catch... hmmmm....

Torture.. I mean, therapy!

In more cool bionic Simon news, we have been "restarting" the CIMT (constraint induced movement therapy) program with our therapist at KKI in a reduced capacity. Since completing the program last winter, Simon had been using lefty as an assist pretty frequently, and he had maintained the gains for what we were told was a record amount of time. However, over the past few months, we've noticed the tone in his hand re-tightening and he has been using it less and less. So, with the support of our amazing KKI therapist, we've made a new cast for his "good" arm and (instead of wearing it for a month solid) we are having him wear it for therapy sessions and therapy "homework" sessions a few times a week. The really amazing thing is how quickly he is regaining the ground he lost. The last time we participated in this therapy it took weeks to manage a pincer grasp, this time he was pinching and dropping marbles and goldfish crackers within hours!

Super dogs in training!

In the area of great news -- guess what!?! TIGGER IS PAID FOR! Yes, I thought it was a mistake at first, too. But no, through the incredible amazing awesome mind blowing humbling I-cry-every-time-I-think-about-it contributions of our friends and family (and their friends and family), and some folks I don't even know but who have heard about us and our Simon, the CEO of Noelle's Dogs Four Hope was able to call me last week and tell me that (barring a grant we are in line for from the Chelsea Hutchison Foundation), Tigger's account is settled.

AND THAT'S NOT ALL! The art students of a local middle school voted to donate the proceeds from their upcoming auction of student work at the school's “Art Night” towards Tigger. We are going to use those proceeds to help pay for Tigger's final training trip to Colorado (where he will complete training and take the official test to become a certified service dog!).

I am (in a rare moment) struck speechless by the incredible way our community has embraced us and our little guy. As I said in an earlier post, the most surprising and amazing thing to come out of this journey has been to find out how blessed we really are, and how much love surrounds us. THAT is what I know is going to keep me going when times get tough. One day, when Simon can understand, I cannot wait to tell  him the story of how Tigger came to us by way of love for him. (damn, now I am crying again.)

Love Triangle

And, finally -- awesome stuff on the horizon! Simon qualified for Music Therapy at school. I found out about the therapy almost by accident, I just happened to be in the classroom when the therapist (who is only at our school a day or two a week) came in to work with another student. I was intrigued -- Simon LOVES music and has a great memory for rhythm and rhyme, so I the idea of using those strengths to work on other therapeutic and academic areas of need seemed just plain brilliant. I did have to push a little to have him evaluated, but once he was it was immediately apparent that it is a great fit for him. Being able to incorporate it into his IEP feels like a mini victory and I could not be more thrilled to see what benefit this brings him.

Another exciting thing to come is an inclusion summer camp! I've been struggling with what to do for the kids this summer -- our fantastic babysitter is headed to Thailand (!), and Simon may be participating in a 4 week "booster" program at KKI with the dates still undecided. I've been thinking about looking for a new sitter to help in the interim (I probably should do that no matter what), but I also really wanted both kids to have a chance to get out of the house, have fun and interact with other kids for at least part of the summer. Camp seems a natural choice ... finding a camp is the problem. For Olivia it is a snap -- if anything there are too many options (art? math? music? adventure?), but finding a camp to fit Simon is a bit more complicated. Last year, I attended camp expo (where we found League of Dreams which I am SO looking forward to this year!) without much luck. Since then, I've continued to search, but so far the options I have found for kids with special needs like ours are few and far between (sometimes literally far). Just make things MORE complicated, I really didn't want something exclusively special needs -- Simon has done so well integrating with his typical kindergarten peers that I was hoping for a mix of kids where everyone was, well, included, but still cared for as needed.

I was starting to think that this didn't exist UNTIL I was in (another) IEP meeting last week discussing ESY (extended school year) options with Simon's team. While expressing my concerns about typical ESY (which are another post unto themselves) a couple members of his team had an "aha!" moment and suggested a grant-based inclusion camp through our school system. Our new music therapist is one of the primary instructors and (I've already decided I love her) she was nice enough to tell me about the camp and get BOTH Simon and Olivia onto the list. I am over-the-moon excited. This is a true inclusion camp with lots of fun activities, camp themes, and cool stuff to do. In addition, many of the "typical" kids are sibs who not only get to have fun alongside their "special needs" siblings (not a situation you always encounter), but they get to meet kids from other families like their own. Seriously, how cool is that?!

SO, stay tuned Simon fans! With so much progress, so much support, and so much to look forward to it is going to be a very exciting Spring!

Girl Scout

Simon has a cold -- just a runny nose, a cough, and an occasional low-grade fever, nothing serious. Nonetheless, I am worried. The last time he was sick was in October (we've been reeeealllly lucky -- either that or those vitamin C-echinacea-zinc-gummi-vites acually work...). He'd had a virus, and when his fever reached a little over 102 he had a status seizure that lasted on and off for the better part of five hours. While we were in the hospital after that episode, the doctors told us that a status seizure is possible whenever Simon becomes ill (because a fever lowers the seizure threshold even while otherwise controlled with medication), and we should be prepared for it.


At the time, all I could think was "How the hell do you prepare for something like that!?," but, sure enough, I've learned to. Currently, Simon's bedroom is fitted with what I think of as the "mini ER,"  -- a suction machine, an oxygen tank, and a pulse oximeter he wears to sleep at night. We also have emergency medicine on hand, and a plan in place which dictates that, should he go into status again, we will take him directly to our preferred hospital (the one with all his doctors), rather than call an ambulance and lose time by being circumvented to our closest hospital first.


Those are the big things, the important things, covered as well as we can. I'd recommend those protocols for anyone in our situation, along with an anti-suffocation pillow and (coming soon!) a seizure response dog. I am still constantly on the lookout to find more ways to keep Simon safe and avert future crisis, as any parent would.


Strangely, though, I find that it is the little things -- the tiny comforts I have stashed, that bring me the greatest sense of inner calm. In my handbag I now routinely keep my headphones and charger, a notebook and pen, instant coffee packets, and extra toiletries for days' at the hospital uninterrupted by sleep or showering. At night, if I am really worried, I put Simon into bed with me and I sleep in my sweats. Within easy reach I keep one of Simon's favorite blankets and more appropriate "street clothes" for myself (because it is amazing how much more confident you can feel when you are wearing a proper bra and have shoes on that match). I've even been considering keeping a bag packed like I did during the final weeks of pregnancy.


At first, I was puzzled by how important these relatively unimportant things felt to me, but over time I have come to an understanding with my oddball self. True to my control-freak nature, I like them because they are the only things I actually have control over. I can't prevent a seizure, but I can make sure I have my phone charged to communicate with doctors, friends, and family. I can't avoid a PICU stay, but I can have the means to wash my face and make a cup of coffee to stay awake throughout it. I can't take this awful thing away from Simon, but I can wrap him in his favorite blanket and play him his favorite songs to comfort him. I can't change what is, but maybe, if I am a good scout, I can be prepared in mind and body to do the right thing at the right moment and we'll get through it together.


girl scout badges - 2/365, a photo by TrishSince1977 on Flickr.

Tiggers are Wonderful Things

Tigger

"I wouldn't trade it for anything. Never, no, never.
Your friendship is the best present ever." -- Tigger

Meet Tigger, a puppy in training to become a seizure response service dog for Simon through Noelle's Dogs Four Hope. According to his trainer, Tigger is smart, VERY fluffy (he is a golden doodle), and he loves to cuddle.

Right now, Tigger is working on "Lesson One" of obedience training. We should get him in April, at which point we will continue his service dog training and work on getting him to bond with Simon and alert to his seizures. In November Tigger will return to Noelle's Dogs Four Hope for 3 final months of seizure response training. Finally, we will complete a week of training together and take a test to make him a certified service dog for Simon.

We have a lot of hopes for this 12-week-old puppy. We hope that he will be able to alert and respond to Simon's seizures. We hope he will help us to keep Simon safe. We hope that he will make Simon happy; by being an unconditional friend, by providing a social connection for him with other kids, and by aiding his independence in the future. We hope that he will make our "new normal" less stressful for our family by being a bright spot in this murky world of cerebral palsy, autism and epilepsy.

I realize that is a lot for one fluffy dog to manage. But, I have good reason to be optimistic. Though it is several months before we get to bring Tigger home, he has already brought together the love and support of our family and our friends, and has taught me a valuable lesson. You see, although the cost of a service animal is substantial, I found I couldn't bring myself to ask for help (despite the really cool magnets and buttons the Chelsea Hutchinson Foundation sent us with Simon's adorable face on it). Every time I considered it, I kept thinking that despite the expense, we are so much better off than so many. I kept reminding myself that we are the "lucky" ones -- we have jobs, and benefits, and I know that I will manage no matter what. Maybe I was too humble, maybe I was too proud. Maybe I have always seen myself as someone who gives and was uncomfortable being in the place of one who needs.

Despite my poor grace, my parents immediately came forward. They were as excited as we were to find help for Simon, and as soon as they heard the word "deposit" they were there to assist and I knew not to argue. I know that Simon is theirs, too. Over the holidays, some of Simon's aunts and uncles, his entire kindergarten class, and some of our very good friends and a long-time friend of my parents made contributions to the "Tigger Fund," in unlooked-for but generous and very welcome gifts. Such a display of support for our family was the best Christmas present I could have ever received, and again, I gradually came to understand that Simon is theirs as well. That our family is bigger than I realized.

And, it is still growing. More folks from Simon's school have asked how they can help and even people at my mom's chiropractor have sent me checks. Last week, when I had dinner with a group of dear college friends and their spouses I was totally surprised -- they had called our trainer directly and gotten together to pay for Tigger's travel expenses. They also reached out to their friends and family and are even planning to redesign Noelles' Dogs website, so that in the future it will be easier for people to donate directly to help families.

Yesterday, when I spoke to Tina, the owner of Noelle's Dogs, she told me she has been amazed by the outpouring of support for Simon. She also told me that everyone she talked to was excited to help. That they love Simon, and that they love our family. I love them back, of course, I always have. Though I can't say I am amazed (I always knew I was surrounded by amazing people) I am completely overwhelmed by the generosity we have been shown.

Tigger has already given us a tremendous gift. He has provided a way for the people who love us to do something positive and concrete to help us protect our Simon, our family. He has shown me that accepting help isn't a weakness. Though he's just a twelve week old fluffly puppy working to master "lesson one," Tigger has already brought out the best in so many people, especially me.

This is one amazing dog.

Tigers, Dragons, and Dogs

Have you read, or heard of, the "Tiger Mother" by Amy Chua? I'd be surprised if you hadn't (it was quite the meme), but, in case you have not, it is the autobiographical account of one mother's decision to raise her children the "Chinese way" (her words).

According to the Chinese zodiac, those born under the sign of the tiger are brave and fiercely competitive. As a "Tiger Mother" Chua accepts nothing but excellence from her children in everything from grades to handmade birthday cards. She is uncompromising, and to a degree successful. Her children have straight A's and one even made it to Carnegie Hall. As justification for her methods, Chua says that she chose to do things the way she did because she believed that her children had the potential for greatness, and that to expect anything less was to insult them.

When I read the book last summer, I honestly had mixed feelings about the Tiger mom approach. On the one hand, some things she recounted were so far from the norm you had to question her soundness of mind. But, on the other, I've always been very hard on myself, and being the mom of a "gifted" child that I sometimes see myself in, I can understand the temptation to carry that impulse over. To push my daughter to where I know she can go, and not accept anything less.

Except, I have to pause at that word... accepting. Learning to accept the way things are has been a key part of my experience as the parent of my other, "special needs" child. I may not like, or want, the challenges that he has been dealt; cognitively or medically, but I have learned that in order to cope with them or move beyond them, I have to accept them. They are a part of our family. To deny that through stubbornness or anger would be just as ludicrous as turning away the truth that Amy Chua missed out on through her willful blindness to the more basic kinds of love her children were offering. To be heartfelt is to be perfect.

Last week, when a friend posted the article "Notes from a Dragon Mom" by Emily Rapp, I immediately got the fiercer-than-a-Tiger reference. It also stood out to me because my Chinese zodiac sign is that of a dragon (something I've always been secretly pleased about -- dragons are cool! Way better than Brian's sign of a rat...).

I knew that dragons were said to be passionate, creative, and unafraid of challenges, the flattering characteristics I liked to associate with myself. However, it wasn't with so much pride as with a touch of sorrow that I understood the perspective of the writer. Rapp knows that she is going to lose her 18-month old son to a terminal illness, and she has learned how to keep going and be a parent despite that heartbreaking knowledge. To quote the article:

"This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice."

Though (I thank God every day), Simon is not terminally ill, living with the understanding that he is at risk of being suddenly taken from me (more than what we all fear from the daily unknown of accidents or freak illnesses), has already changed me in ways I hadn't really stopped to understand. Like Ms. Rapp, I have come to realize that the "new normal" Simon's doctors have repeatedly told me I will get used to is something else entirely.
I now know that I have to accept it, to become a fierce new animal. A fire-breathing dragon mom, burning away the expectations for love's sake alone.

And, in its way, this could be a freeing revelation, if it weren't for that tiger mother in me. She is pretty fierce as well, and I cannot completely change my stripes. Just as I know I have to accept an awful truth, I also know I have to get over it.

I have to learn to tight-rope walk between these constellations. Between accepting what is and reaching for what can be. I know that both of my children have the potential to be great, but I also know that they are great the way they are, without qualifiers or contraindications. Without expectations. I have to take both challenges and triumphs, one steady foot in front of the other.

Which is great. Except, sometimes, you fall. And, when I fell this last time, I didn't think that there would be a net. I'm as stubborn as a tiger. Like a dragon, I don't know how to ask for help. 

So, you can imagine my surprise when a dog broke my fall.

Researching options to prevent the unthinkable, I discovered the Chelsea Hutchison Foundation -- another organization created to raise awareness for SUDEP, in the name of a child that died too young. Chelsea was 16, and the doctors never told her parents that a seizure could take her life. Her fierce Dragon parents are now trying to help others with epilepsy, through raising funds to help pay for seizure response dogs. 

I immediately contacted the foundation to find out more, and graciously, Chelsea's mom emailed me right back. She was glad I had gotten in touch with her, and she was happy to help. She told me about the benefits of service dogs and I felt the first real surge of hope I'd had in many weeks.

It was on this high that I reached out in a simple facebook post, just asking if anyone knew anything about service dogs. I had no experience with them, and googling had only gotten me more confused. I was hoping to hear from someone that perhaps had second-hand experience, or had heard of something locally. I was hoping for a place to start more research, but what I got was so much more.

It seemed that, after finally breaking my cyber-silence with last week's post and this simple request, everyone around me was just waiting for a call to action. Dozens of friends commented -- some to just offer encouragement, and some with truly great contacts. A college friend (thank you Wilson!) connected me with his partner's mom, the founder of St. Francis Service Dogs and a truly warm and knowledgeable person. She spoke with me for over an hour about my son and what a service dog could do for our family. Though she couldn't help me (they don't serve our area), she told me what to look for. Ultimately, it was an organization suggested by the Chelsea Hutchison Foundation that came through for us.

Though I know that I may not have completely changed our situation -- we don't yet have a dog, and even when we do, I know that a quick response alone won't change the potential of a seizure ending Simon's life (though we hope it decreases our risk some, particularly for asphyxiation). I know this, but I also finally feel like I'm on the road to doing something positive, something proactive. And, I realize that I'm not alone. I had turned to our doctors and specialists for help and come up empty handed. Over and over again. I turned to my friends and family for help, and not only did I come up with many truly helpful hands, I've come up with more support and love than I could imagine.

According to the Chinese zodiac, dogs are loyal, compassionate and kind. I've also discovered that they might well be able to calm the roaring of a heartbroken dragon, and the growling of an angry tiger.

Keep Calm and Carry On

My very favorite mug bears the British WW2 poster slogan "Keep Calm and Carry On," which was meant to be a last bit of encouragement from the monarchy, a reminder that life goes on even in the face of a potential invasion by the Nazis.

There are many reasons that I like this mug so much. It has a cool design (nice typography!), and I am both a history buff and a slight anglophile. But, most relevant is the fact that, speaking from a personal history perspective, this pretty much sums up a key "Laura" trait. When I'm under a lot of stress, my main defense mechanism is to become rather stoic -- whatever it is that has me twisted into knots -- I feel that there is no need to think about it, analyze it, or discuss it (or, in the case of this blog, write about it) -- I just get through it. By keeping my eyes ahead and my mouth shut I'm convinced I will see the light at the end of the tunnel that much sooner.

It is a strategy that has often worked for me, though there are times when I've way over-surpassed my capacity, and I do succumb to a melt-down. But even this I prefer to do privately, usually in the shower where no one can hear.

I had my last melt-down about 15 minutes ago after reading that the child of a fellow special-needs blogging parent died in his sleep due to a seizure. My heart broke for them, and for me. It is in the wake of this honest, cleansing cry that I finally feel like I am ready to write about what has been going on here - something my husband has been encouraging me to do for a few weeks now.

First, let me get some things straight -- life hasn't been all bad, in fact much of it has been great. Brian started the graduate program he was hoping to get into, and he loves it. I've been very busy with all good projects (which is a huge feat for a self-employed gal like myself), and my semester has started off well. Olivia is enjoying both 3rd grade and her first team sport -- field hockey! And, best of all (for this mommy), Simon has been doing really well in kindergarten. Both his teacher and his aid are incredibly wonderful and supportive, and they are truly invested in making his experience both pleasant and successful. With all the anxiety I felt over the kindergarten transition, it is more than I could have hoped for (expect a post later more about school and what I think is making our inclusion setting work).

So, what am I freaking out about? Well, aside from having enough going on to make our little family truly crazy busy (my calendar is a mess, I have to color-code it), and aside from the stress of two very over-worked parents, there has also been enough "really scary bad" thrown in to tip my coping scales into a stoic silence.

 You see, I've been terrified of losing Simon.

A few months ago, after seven months of being well-controlled, Simon started having break-through seizures and frequent bouts of sudden vomiting. After LOTS of blood work came back inconclusive, we tried increases in medication. So far, they haven't help the seizures (though the vomiting stopped).

Within this, I noticed an alarming pattern; Simon's partial seizures were happening while he was sleeping and they always included him vomiting. Though we have a video monitor on him at night, the partial seizures only involve facial movements and are virtually silent. Even the vomiting is silent, it just pours from him without any of the normal retching you'd expect. I feared that he would have one of these seizures at a time when we were all too deeply asleep to catch the slight noises on the monitor, and that we would wake to find that we had lost Simon due to asphyxiation.

As soon as I realized this, I contacted every doctor and medical professional I knew to help me find a way to protect him. I thought that there MUST be something to detect a night-time seizure and/or distress.

At the same time, I began researching like crazy on my own and I came up with some rather striking disoveries. I learned that there are syndromes within epilepsy, and that one of these syndromes seems to fit the variety of seizures Simon has -- including the vomiting, which, as it turned out, could likely be a form of autonomic seizure activity occurring in the occipital lobe.

I also discovered that I am not the only parent worried about losing their child due to a seizure at night. I found many stories, personal ones told on list-serves I belong to, a foundation in the name of a child that died -- the Danny Did Foundation in Chicago -- and some major news articles including this article from the NY times and this article from Newsweek talking about "Sudden Death in Epilepsy" also known as SUDEP. Mainly the articles focused on how little is being done to understand epilepsy, how SUDEP is virtually undiscussed by the medical community (in fact, there is a stigma against discussing it with parents and patients, thinking the anxiety the knowledge can cause will lessen the quality of the patients' life), and how, especially in the United States, there are no real options available for the detection of nocturnal seizures and, thereby, prevention of death either due to a prolonged status seizure (with can cause renal or heart failure, as well as brain damage), or due to suffocation or asphyxiation occurring while seizing.

I emailed our Neurologist with my findings. She agreed with my diagnosis on the vomiting and the relation to occipital seizure activity (I'll be sending her a bill for my time and expertise later). She also (somewhat sheepishly) acknowledged that yes, SUDEP is an issue, and no, she had not discussed it with us because there was nothing we could do about it and she didn't like to upset parents. She compared it to SIDS, in that the deaths are a bit of a mystery and there is a limit to what prevention can do, if anything.

I admit that I was sorely tempted to throw a complete raging fit. WHAT DO YOU MEAN MY SON COULD DIE AND YOU DIDN'T TELL ME AND THERE ISN'T ANYTHING THAT CAN BE DONE ABOUT IT? Instead, I kept calm and reasoned with her. In the case of SIDS, I said, parents are made aware and there ARE both preventative recommendations and things like apnea monitors for parents to make use of. Shouldn't a similar protocol be in effect in this situation?

She didn't disagree with me, but she did say that no such protocol existed. There are no recommendations. There are no monitors. All she could offer was to tell me that other parents in this situation find it similarly stressful, but that we have to learn to live with it.

All of the other doctors and medical professionals that I knew agreed with her. There was no one to help me. I deeply sensed the reality of an impending unthinkable disaster.

Well, F#@& THAT. This momma is going to carry on. (Okay, so I did give myself over to one or two fits of hysterical crying in the shower. It was necessary.)

The only way I know to carry on is to do more research. A lot more. I came across an article on Epilepsy.com "Nighttime Siezure Activity: Will your family every sleep peacefully again? " (the answer is "no," by the way), that talked about what we are dealing with. While the motion monitor in the article won't help us with Simons' still-bodied partial siezures (yes, I called the manufacturer to check), it got me thinking about re-purposing other kinds of alarms. To help narrow my search, I spoke with a nurse at Kennedy Krieger about what physically happens to a person during a seizure, and (light bulb moment!) the heart rate goes up abnormally and, if in distress, the blood oxygen level would go down abnormally. What I needed was a pulse oximeter with an alarm. Eureka!

So, I called the neurologist and pediatrician and asked them to direct me to one. Once again, no help. They said that there was nothing that was FDA approved for the use I intended to put it towards. They suggested I try ebay. Or amazon. They offered to write me a script if I found anything to help with insurance costs.

Again, carry on.

I searched and, to be honest, last week I just ordered my THIRD device (anybody want a slightly used pulse oximeter?). In this quest I was on my own, and therefore a bit reliant on trial and error. The first two devices were more made for adults and Simon's tiny finger was too small to get a reading. We visited the Neuro in person last week, and this time, when I dumped my useless gadgets on her exam table and looked her directly in the eye, telling her I refused to lose my son this way, she had a harder time brushing me off. She wants to try an apnea monitor used for sleep studies, and we are currently trying to go through insurance to get it.

In the meantime, I had been watching Simon's video monitor like a hawk. Sleeping at all had been hard, and it was wearing on me. My anxiety was ratcheting to what I knew were unhealthy levels, but I could not shake the feeling that something bad was going to happen.

 And then it did.

Wednesday, Simon had a slight fever, which we know lowers the seizure threshold. After I gave him his medicine and put him to bed, I placed the monitor on my desk while I went back to work. About 20 minutes after he fell asleep, he had a seizure. I heard the little chewing noise, saw his open eyes on the monitor, and I ran upstairs. By the time I had yelled for Brian and vaulted the steps, he had already vomited. He was lying on his back and choking.

Thank god I am a neurotic, persistent, pain in the ass. After his first seizure I had demanded a script for a suction machine (reluctantly given by the pediatrician since it is not seizure protocol), because I was afraid of just this scenario. We keep it set up in his room and we were therefore immediately able to suction his airway clear (though we later found out he had aspirated enough to lead to aspiration pneumonia). We timed the seizure and because it went past 5 minutes, we administered the emergency Diastat and called the paramedics.

To make what is already a ludicrously long story shorter (sorry, brevity is not one of my strengths), I will summarize what happened over the next few days. Simon's seizure became another status episode and he seized for over two hours. Once again he needed to be in intensive care to monitor him after the massive dose of drugs administered to stop the seizure to prevent it from killing him. And, once again, I am profoundly grateful that he has come out of it okay and is now resting and recovering at home.

Despite the disturbing sense of déja vu, I am also grateful that this time I am better educated. Last time, everyone panicked. The emergency room doctor, in her desperation to stop the seizure, gave him so much phenobarbital that it nearly killed him. I remember standing beside the gurney with tears pouring down my face, helplessly thinking I had lost my son. This time, I was calm and in complete control. I was able to prevent the prolonged medical coma he was in last time by directing the emergency medical team on specifically what medications they should and should not give him, and I made sure to get our neuro team immediately involved and had him transferred to their care.

While at our world-class "home" hospital, I used the opportunity to grill EVERY SINGLE medical professional I came into contact with about what I can do to prevent a recurrence in the future and have come up empty handed. Some doctors apologized and told me that they knew the situation sucked. One coldly told me that there needs to be "more of a market to warrant developing such a device." Everyone told me that I was doing the best I could and that I should, over time, learn to live with it.

I am living with it. I know that this is going to happen again. And again. I will keep calm, BUT, I refuse to believe that there is nothing I can do. I will not let this go without one hell of a fight.

The third pulse oximeter I ordered just came yesterday. The only devices specifically for kids are clip-ons and we are trying to find a way to make sure it does not come off of his hand at night. At least this one gets an accurate reading. That is something.

Carry on.

Day 4: Resolutions

The B6 vitamin came, and not a day too soon. We had a house full of guests for lunch today, and I have to admit I was a little worried about Simon's behavior. Like most little kids, he finds sharing his stuff to be a bit, um, challenging, but with his quick temper it has become more than a minor sharing lesson. Fortunately, though, it wasn't an issue. He has had 2 doses of the B6 so far, given in conjunction with the anti-seizure meds, and he definitely seems more mellow. Right now, in the peace and quiet of the late afternoon, he is cuddling with his sister while watching her play Mario-Kart on her Nintendo DS.

Ah, peace.

If I am honest, my worries about his behavior in front of guests goes deeper than concern over an afternoon of sharing toys. For the past couple years, since his cognitive differences have become more apparent with his growth and the subsequent comparisons to other same age children, be they strangers, friends, or relatives, we've had a lot of 'splainin' to do (use your Ricky Ricardo voice for that last line.)

Why isn't he potty trained? Why can't he answer my questions? Why doesn't he want to interact with the other kids? Why does he keep repeating the same phrases? Why does he stare off into space so much? What is he wearing on his leg -- did he hurt himself? Why?

Why, indeed.

How best to answer is the bigger question. When the diagnosis of the C.P. was still fresh, and the cognitive problems still emerging as more than a simple "delay," there were a lot of questions and a fair amount of friction -- from within our own little family. Turns out, Brian and I handle this sort of thing very differently. I tackle any emerging issue head on with the ferocity of the Momma Bear I am. Hours of reading and research, pushing the difficult questions forward in appointments with doctors and chasing the specialists out into the hallway if they haven't adequately answered my questions, or if I simply want them to explain the brain scans to me AND the resident they are teaching.

I've surprise a lot of doctors with my tenacity and my knowledge (I am only a graphic designer, after all -- thank God I took Latin in High School or I'd never have figured out what the Neurosurgeon meant by "sequella"...). I drive my husband crazy. Brian prefers a wait-and-see approach. He would rather wait for solid proof of a problem then look for symptoms and self-diagnosis. He'd also rather not discuss the problem with others, but keep things in our circle to be dealt with as needed.

Things changed a couple of months ago, after the “Big One.” The week before Simon's status epilepticus seizure we were in the ER due to an unexplained weakness on Simon's left side (more so than usual). After a chat with a Neurology resident, I was pretty sure it had been a nocturnal seizure. I'd long suspected seizure activity (the absence kind), but Brian had not seen it himself, and so thought that maybe I was going a bit too far. I'm sure you can imagine the sort of contention this caused.

To our credit, however, we did manage to have a really good conversation (after a little yelling and crying). We were able to talk about the feelings that led us each to process these complex issues in such different ways, and we agreed to try harder to support each other. Good thing, because in the week that followed we needed every bit of strength and resolve we could muster as a couple to get through the difficult hours ahead -- many in the darkness of not knowing if our little boy would ever wake.

But he did, and we got though it, and here we are on the other side. It is New Year's Eve and I think that if I am going to take anything with me out of 2010, to carry into the new year, it is going to be the resolution to care a lot less about the answers to the questions. Well, maybe not the answers -- I'm still going to doggedly track down any lead I can find that might help my little guy. The reactions of others to the truth of our sitation is what I am going to stop worrying about.

Over the course of the last year, I've been told by potential babysitters that Simon's issues were too much to handle. I've been told both, that I should be doing more, and that I should be doing less. I've been told that Simon is ready for things I think he isn't, and not ready for things I think he is. Once, when explaining his level of cognitive disability, I was told that we would "love him anyway."

Well, there is no ANYWAY. And there is no right, and no wrong, and it IS a lot to deal with, but -- to quote a favorite nurse -- "It Is What It Is ( IIWII, pronounced eewee)".

So this year, when I argue with my husband about how to handle something, when a stranger or a well-meaning loved-one says something hurtful, when I feel defeated or overwhelmed, I'm going to resolve to remember that it IS what it IS and that IS okay.

Even if it isn't.

I'm also going to remember that for every troublesome encounter, there are twice as many blessings. Simon isn't in pain and is happy. Olivia is incredibly compassionate and wise for a child of 8. My husband and I can walk through fire and darkness and still hold hands in the light. And there's you --  family, friends, dedicated sitters, therapists and teachers, acquaintances and maybe even people I don't know, who care enough to follow the progress of one little boy.

Blessing to all in 2011, it is going to be our best year yet.