E to the E to the GEEE!

This weekend Simon had another EEG. It was our second one, though the last one was just a few months ago. Because of the results of that first EEG and the subsequent diagnosis of ESES; frequent, repeated EEGs and other fun tests (like MRIs, blood draws, and neuropsych evaluations) have become a regular part of our "new normal."

Simon wasn't at all happy about having his head filled with glue, tape, probes and wires but he tolerated it SO much better this time around. There were some significant things we did to prepare that I think helped.

1. We obtained a few of the leads in advance and using tiny hair clips we played with them and practiced wearing them for the past 2 weeks. Using them in this way took some of the "scary" out. We also visited the room the study is held in and just hung out for a little while under non-threatening circumstances. I think knowing where we were going and what was being used helped Simon feel more comfortable.

2. We started talking about the EEG days before it happened and I got Simon to help me prepare for it. The day of, we discussed the "Doctor Sleepover" and Simon helped pack his lovies and chose his PJ's and snacks.

3. We added in some fun distractions and rewards to focus on when the going got tough. I bought several tiny toys from the dollar bin to pull out when he got too stressed. I loaded his iPad with a few fun new apps to play during the procedure. Finally, I got a video with his very favorite characters (teletubbies!) to work for -- we played it as soon as he was all wrapped and ready to go.

Though they are a necessity, tests like this are very stressful for a little kid (heck, they sometimes drive this momma to drink...), so I've been actively seeking ways to make them less traumatic for Simon. Therefore, to help him cope, I've enlisted the help of a behavioral psychologist that specializes in kids with needs like ours. I've also applied my own creativity to the problem as best I can and am continuing to look for ways to make things better.

I'm pleased to say the effort has made an enormous difference. Our last EEG involved a lot of screaming, crying, and kicking (not to mention what Simon did!). Though, I can't say Simon enjoyed the process, this time around he was a LOT more comfortable and we were able to work through the rough patches without having to put anyone in a headlock. Now that's progress!

All wrapped up and ready to go! Simon enjoyed popcorn and a new teletubbies video as a reward for being as cooperative as possible while getting connected to the EEG.

Unfortunately, the results aren't quite what we had been hoping for. Though it is improved, his EEG is still very abnormal and filled with subclinical seizure activity -- looking for all the world like silly string streaming through his subconsciousness. I noticed it right away (I did a fair amount of peeking at the screen during the test, I am getting pretty good at this neurology stuff...) but his actual neuro confirmed my "diagnosis" today at our follow-up appointment.

For now, this means that the current medicines we have been trying aren't enough. Because surgery isn't an option, more medicines have to be tried. They have already increased the meds he is on (and which he isn't tolerating particularly well -- he is tired, irritable, and vomiting at least a couple times a day), and we will do another blood draw next week to see where he is with those. In the meantime, our quadrant of neurologists will confer to see what other medicines we should try next.

I'm worried about what more drugs will do to Simon (I am also worried about his resistance to the drugs since it is already an issue...), but I am also trying to focus on the positive. Since we have uncovered the ESES and have started to treat it we have seen global improvements in Simon's awareness -- especially his eye contact and use of language. Every day he does something that surprises me -- whether it is using a pronoun correctly, asking a new question, or building with duplo blocks (for the first time EVER!) and pretenting to be a giraffe -- our days are a mixture of worry and miracles. Though they make strange bedfellows, I am learning to adapt to it. It used to be that my go-to phrase where many things Simon were concerned was "It is what it is." Now, I find that "Carpe Diem" is a more frequent and fitting mantra.

I think I am going to need a new necklace...

Carpe Diem necklace on Etsy...xmas present to self?

Results

This afternoon we got the results from the MRI Simon had last week. We had been hoping that through more detailed imaging we would find a clear path for surgery, so that the area(s) causing the seizures and ESES could be removed. We were told that if possible this would be Simon's best option since it is likely he will become resistant to medicines at some point. Unfortunately, today we learned that there is no clear path for surgery without significant risk.

This is definitely a setback, and at the moment, the news is pretty hard to bear. In fact, I think the only thing worse than hearing that there is something very wrong with someone you love is learning that there isn't a cure available.

There are, however, treatment options. There are a variety of medicines to try and we will exhaust them all if necessary. In fact, we have already started and I really do feel that we have seen improvements in Simon's language and awareness since he has been on the newest med. (Unfortunately, the side effect of this med seems to be constant vomiting -- we are hoping a different formulation of the same drug will be better tolerated.) We have an EEG scheduled for December 8 and we are optimistic that it will reflect an improvement.

This isn't the news we wanted to hear, and though I am struggling to "be okay" with it all I have to do is take one look at my happy, amazing, tough little guy and know that whatever else may happen I am so lucky to be his mom. 

Speak Easy

Before I became a mom, I shied from confrontation. Served a bad meal in a restaurant? I'd eat it (or try to) anyway. Retail clerk snarky? I'd assume they were just having a bad day. I can think of dozens of examples of looking the other way, making excuses, or just plain dealing with unpleasant situations that could probably easily have been amended had I just spoken up. I was just too chicken.

This attitude changed rather abruptly the first time someone mistreated my daughter in front of me. At that moment, the momma bear that clawed her way outta my chest shocked me more than the surly subject of my angst. I learned to anticipate the momma bear and mitigate the reaction more judiciously over time... until I had my son and became a special needs mom. Suddenly, I found that I was no longer a momma bear -- I'm a momma saber-toothed tiger. I also discovered that my hackles raise not only when I feel my son has been mistreated, but when I see ANY special needs person being dealt with unfairly. Although it is often uncomfortable, and I wonder how many times I cross the line between advocate and pain-in-the-ass (if there is a line.. they might actually be one in the same thing) doing nothing is no longer something I am okay with.

So last year, when I attended the huge public fundraiser for the organization we go through for a lot of Simon's therapy and medical appointments, I was pretty upset (okay, shocked) to see that there were no (NO) accommodations made for people with special needs. Families with people in wheelchairs and special needs strollers could not fit in the eating area because the tables were too closely packed together. The craft projects and games were far too involved for kids with fine motor challenges and there were no easier options or adaptations offered. The crowds and activity were too intense for kids with sensory issues and there was nowhere to take break from it. Most heartbreaking of all, none of the rides were accessible and I saw special needs kids observing the fun from afar, unable to take part in an event that was supposed to be about them. In fact, nowhere was it apparent what the fundraiser was really about or who it was for. The fact that the organization served people with disabilities was almost completely buried. I left the event feeling very sad and just a little bit angry.

On facebook the next day the organization asked people for feedback on the event. Though I hesitated, and I think I probably re-wrote my comment about fourteen times, I left a message saying that; though I appreciated the fundraiser, I was sad to see that the people they serve were left out of the planning. My comment prompted a request to take the conversation "off-line" (uh oh) and so I sent them an email outlining the things I had seen that were a problem and made what I thought were pragmatic suggestions about how they could be addressed next year.

It simultaneously felt good and bad to write that email. On the one hand, I knew I knew what I was talking about. On the other, the last thing I wanted was to piss someone off at an organization I frequently went to for help. In fact, after I didn't hear back for a few months I was pretty sure I had offended someone. I was hoping my name wasn't highlighted on some "parents to watch out for" list... (I am sure there is a list somewhere!).

However, about six months after I wrote the email I met someone from the events department at my old high school's career day. We had both been asked to come present to the students and while we were waiting we got to talking and I learned that my email had been reprinted and posted for everyone associated with the event to read. It had inspired brainstorming sessions internally, and my suggestions were being turned into action items. Not only had they not blacklisted me, they actually appreciated the fact that I wasn't just an "angry parent," I was a constructive critic trying to help make things better.

We just got back from this year's event and I was pretty thrilled to see that EVERY SINGLE idea I had presented was utilized, plus some. In the eating area, the tables were spread further apart and there was space reserved for people with disabilities. There was a wider range of craft projects and activities. There was a "quiet corral" with dim lights, quiet activities and bean bags for kids who needed to take a break before having a melt-down and needing to leave. Everywhere posters were present spreading awareness about living with disabilities and inviting attendees to get involved by simply texting a donation. Best of all, the carousel was wheelchair accessible. Seeing a kid in a chair RIDE this year instead of being left behind was maybe the best holiday present I could get.

One day, I would like to see this event become 100% accessible, and the organization become the model of inclusion that I know that they can be. I plan to help them get there any way I can. In the meantime, I've learned a pretty awesome lesson. Saber-toothed tigers can change the world for the better, one constructive critique at a time, one creative partnership at a time.... one carousel ride for one special needs child at a time.

Happy Holidays!

The little things that are big things that I am grateful for

Today was a tough day. Any day you have to take your child in for a medical procedure -- whether it is a simple vaccine or a necessary surgery -- is a tough day. Though you know that you are doing the right thing in caring for them, seeing your baby in distress or hurting is just not good.

This was Simon's 4th MRI so I knew what we were in for. Abstaining from food, getting IVs, getting sedated, coming out of sedation very angry, vomiting, visiting Neurosurgery to get the shunt reprogrammed, and then an hour or so drive home in DC traffic. Yuck. As grateful as I am that things like MRIs exist to help us care for our guy I'd been dreading it (and fearing the outcome) since I scheduled it.

Last night, when I expressed my worry via social media I got a flood of love (and cookies!) from so many friends. I am so grateful. Knowing that so many folks are routing for us is huge. Every little message of encouragement, every new friend I make that reads the blog and sends love, everyone that offered cookies, wine, a partner to be a hot mess with, or just said good luck (my mom even did my dishes and made us dinner) made me feel a lot more positive and a little more sure I could keep on keeping on no matter what the road ahead looks like.

Fortunately, today things went a lot better than I thought they would. For one thing, the shunt malfunction we were concerned about is not an issue. Or at least not an immediate one (something else is causing all the vomiting, which is now nearly constant.. poor Simon has already lost weight and is constantly hungry), so there was no need for the emergency surgery I was braced for. For another thing, this was the first time we had an MRI done at Children's National instead of at Johns Hopkins and the difference was immense.

At Children's they do something that STUNS me simply because I haven't experienced it before. They put the child first. At every visit we have been to, every step of the way, we are accompanied by a child-life specialist whose sole job it is to make the child as comfortable as possible (which directly translates into the comfort of the parent!). Today, our CLS brought Simon the medical equipment to play with before it was used on him. She found out what his favorite video was so she could have it playing when he went under sedation. She checked on him and on us throughout the procedure.

Additionally, everyone we encountered expressed the desire to do things in the least traumatic way for Simon. Instead of placing an IV first (like they have done at Hopkins), they sedated him first using his choice of flavored gas while his favorite video played. They waited to undress him and draw blood until after he was under. They assured us his safety was their first concern and they checked in midway through the procedure (during which time we were encouraged to grab some lunch) to let us know Simon was okay. Instead of having to take an angry and drugged Simon to the neurosurgery department to get his shunt reprogrammed they came to visit him in recovery to set it while he was still sleeping. When we came to find him, he was wrapped snugly in his favorite blanket and being fed a popsicle with his eyes still closed -- which cut WAY down on the angry post-procedure Simon we are used to.

A lot of small things, but what a big difference. I'm grateful for all of it. And, since we are so close to Thanksgiving I want you to know, dear reader, how grateful I am for you. This blog means a lot to me and knowing my words aren't going out into a vacuum is a big deal. Also, after spending so much time in hospitals recently, I'd encourage everyone to be grateful for their health, and the health of their loved ones. Hold your babies close friends -- we should never take a moment of it for granted.

Captain's Log

I know it has been a long time since I posted, and so much has happened in the interim. Hurricanes and Halloween, new doctors near and far, bidding a temporary farewell to our furriest family member, and myriad blood tests, medicines, and therapies. Not to mention all the "normal" stuff that goes into family life on a daily basis. It has been busy.

But, in my book, busy is (mostly) a good thing. Especially when having too much "down time" leaves me free to worry about the what if's. However, despite the frenetic pace we've been maintaining, life may be about to get crazier. The upcoming schedule of medical tests for Simon (we are hoping both an MRI -- tomorrow -- and his EEG -- this weekend? -- will be able to be done this week) may indicate that we are actually nearing the end of the short calm before the storm.

Batten down the Hatchers!

We were very lucky to make it through the storm without damage, or even power loss. We were happy to share our blessing by making donations at our neighborhood food truck gathering event!

Simon and Tigger were both Pirates for Halloween (of course). Being able to "do" kindergarten again with Simon truly makes me feel lucky!

Saying good-bye to Tigger until March, when he will have finished his training and become a fully certified service dog. We can't wait to have him home!

We have added a new member to Simon's team -- a behavioral psychologist that specializes in helping kids cope with the stress of their medical conditions. Right now she is working with us to help find techniques to help Simon stay calm and be less afraid during scary tests, like EEGs. Here Simon is putting the leads on himself (after he put several all over my head for practice).

We found an Epileptologist to work with us towards mapping for potential epilepsy surgery at Children's National Medical Center in Washington DC. Tomorrow we return there for an MRI to find out if Simon's shunt is functioning properly (he recently started vomiting several times a day, a sign of failure) and to see if the area they *think* the ESES is originating is operable. I'm nervous but trying to stay positive.

Normally, I'm a wait until after Thanksgiving kinda gal. But this year, either in spite of or because of everything that has been going on, I am determined to make it the best Christmas yet. Simon is already asking about Santa and Christmas trees and I am already decking the halls. If anybody else wants to falala -- I am your girl!

Turkeys Down

A rather southern friend of mine (shout out Susan Johnson) introduced me to a colorful turn of phrase I like to repeat to myself whenever external sources have me feeling blue, "Don't let the turkeys get you down!" (you have to say it slowly and wisely with a slight southern accent -- see if it doesn't work for you, too) has been a mantra that makes me smile and remember not to take myself, or any other turkeys, too seriously. Everything will be okay.

Trouble is, this phrase hasn't been working as well for me lately. The turkeys are pretty big and serious looking (not at all funny) and their combined weight has been getting me down. I don't know that everything will be okay and I am having trouble coping with that.

I'm also starting to miss Tigger. Very soon he will be returning to Colorado for 5-6 months of final specialty training. He will be taught to recognize and respond to the physical signs of Simon's clinical seizures (on a related note we figured out that the reason he has not yet been able to alert to a seizure before it has happened is probably because Simon is having seizure activity all the time. Tigger probably thinks it is normal... the kid must always smell like seizure!), he will be learn how to protect Simon and keep him safe, and he will be trained to assist Simon with balance and mobility.

All of these things are very important and the intensive training is a necessary step, I know, but I am still dreading the separation. Over the past 6 months Tigger has become an intrinsic part of our family -- his exuberant but gentle presence makes our home a happier place. Additionally, we've seen improvements in Simon's language and empathy when he is with Tigger, and he and Simon have steadily become closer.  

Simon's "too big doggie" gives the best hugs.

We need Tigger's help now more than ever, and I am as sad and worried now as I have ever been. I have some big turkeys pulling on me. Fortunately, today I didn't need to look any further than Simon's backpack for a lift. 

A friend's son, who has also battled epilepsy and who has been through the testing and surgery we may be facing, sent Simon a sweet stuffed puppy to brighten his day. Simon told me it was a "not too big doggie" and it does have a striking resemblance to our "too big doggie." N2BD will be good to cuddle with in the months ahead, when I am sure Simon's bed will be feeling conspicuously empty.

Earlier this week I got a lovely card from a family friend with a gift intended to send Brian and I out on a date, since she also knows from experience how stressful a situation like ours can be on a relationship. Over the weekend my sisters-in-laws have called to see how we are, my parents have been helping us cope with our over-burdened schedule, and my friends have checked in and sent love.

The truth is that hands are all around me trying to lift me up, and as I realize this I am reminded of something I said at the "TiggerFest" party we threw earlier this summer to recognize all the kindness we had been shown as a part of our journey to bring Simon and Tigger together: 

"This year, we have gone from feeling frightened for our son's well-being, to being embraced and uplifted by our family, friends, community, even people we don't know -- together, we have experienced a true miracle, and I can't thank you enough for being a part of it. I will carry this in my heart always and I know that years from now, when Simon is encountering more challenges as we all inevitably do, I will have the story of what happened here to remind him of how loved he is, how great people can be, and how miracles really can happen."

The challenges have come sooner than I'd hoped, but the rest of what I said rings true. All I have to do when I am feeling afraid and overwhelmed is to remember that sunny day when my heart was bursting with gratitude for how much love we had been shown. All I have to do is look around to see how loved we still are.  Knowing this gives me hope to believe that if one such miracle could happen, more are possible.  

A very special friend from another very special friend -- thank you for this "not too big doggie" Ian Moore!

What Is

We tried to take the weekend to rest, to regroup, to catch up. I'm not entirely sure we succeeded, but we tried. We spent time with friends, attended church and Olivia's field hockey game, caught up on work and homework, and we got as much sleep as we could manage.

Brian and I tried to talk about how we are coping with our new situation. We are worried about each other. We acknowledged the cosmic sense of unfairness we feel -- Simon does not deserve to be faced with so many challenges. He does not deserve to go through all that he already has, much less all he yet has to face. In his sweetness and innocence he has done nothing to warrant being subjected to so much frightening medical intervention, tests, drugs, and surgeries. He should not need to spend so much of his precious childhood in hospitals and doctors' offices. He does not deserve to have his hard-won abilities threatened by this monstrous disorder. He does not deserve to have his young life endangered.

We don't deserve to go through this. No one does. We are frightened, and angry, and overwhelmed. We tried to comfort each other, but in the end the best we could do was sit beside one another silently crying. Which, in its own way, was comfort enough for now.

But, being me, I can't sit still for long. Maybe one day I will fall back, but not yet. Now is a time for doing. So I am spending a lot of my time researching, and talking to multiple neurologists. We learned a lot in our meeting with Dr. Riviello and I need to figure out how to act upon it.

We learned that Simon's ESES is pretty severe and has most likely built gradually over time (how much time no one knows). I actually saw surprise register on the kindly doctor's face when he scrolled through the EEG and saw the unceasingly wild and wavering lines. He diagnosed Simon as having CSWS, a syndrome within the syndrome of ESES. Based on this, and on Simon's repeated status seizures (which the doctor was also very worried about), he feels we need to proceed aggressively with treatment.

This is what a normal EEG looks like during sleep

This is what Simon's EEG looks like during sleep.

The first thing is to try to control the epilepsy with more aggressive drugs and to frequently test their efficacy with overnight EEGs. If the more standard epilepsy drugs do not work, we move to high-dose steroids that are so heavy-duty they have to be given inpatient via IV for 3 days at a time. Ultimately, however, based on Simon's history of refractory (drug resistant) epilepsy and Dr. Riviello's experience with kids like Simon, the projection is that the effect of the drugs will not last indefinitely and we will most likely need to pursue a surgical solution.

Regarding surgery, we got more bad news when the doctor reviewed the MRI of Simon's brain. The best case senario would be to pinpoint exactly where the seizures are originating on the EEG, and then in reviewing the MRI find a corresponding area of damaged tissue which could be isolated and surgically removed without risking further harm. We do not have a best case senario. Although we know from the EEG that Simon's seizures are primarily coming from the right side of his brain, and though we can clearly see the damage done from the stroke, it is diffuse throughout the right side. Dead tissue is mingled with healthy tissue and we can't easily tell what Simon is using and what could be removed to help him without creating further injury.

So.... what do we do now? First, we start with drugs to try to control the syndrome as quickly as possible. We started this last week and are continuing to make adjustments and get bloodwork to test levels. Once Simon is at a therapeutic level we will get another EEG. If this works for now, great. If not, or if it stops working, we move to the steroids. I have already discussed setting this up locally with our neuro.

In the meantime, for the past 3 days I have been calling and emailing with multiple neurologists to try to find ANOTHER doctor to help us with the extensive and highly specialized testing that will need to occur (and which can take a very long time to do) to determine if Simon's epilepsy is operable and, if it is, to "map" that surgery for us and work with a neurosurgeon to implement it. Currently, I don't know where we will end up for that. We are discussing options in New York, Washington, Philadelphia, and Cleveland.

Right now, I don't have time to sit and cry silently. Though I think I have always been tough, and for a long time I have been trying to be a super mom (for both my kids) and an impassioned advocate for my special needs son; over the past two weeks I have felt myself evolving into something else entirely. Harder, more intense, more determined. A dragon mom? A warrior mom? I don't know yet. I don't quite recognize this more ferocious version of myself. Though I am reluctant to embrace her, I am also glad she is there. I think she will hold me together, and I hope she has enough strength to hold Simon, and Brian, and Olivia, too. I am frightened of what is to come, and how our world may change (has already changed), but I know I cannot stop it or change it or wish it away. "It is what it is" (a phrase I have a long history with) but also I know that I am who I am, and I am going to kick It's ass.

I hope.

Simon and Tigger take Manhattan

Today we went to meet the ESES specialist in New York. We decided to take the train to make things as quick and easy as possible, and because we thought Simon might like it (he did). Finally, after about 10 hours of traveling and 2 hours of meeting with Dr. Riviello at NYU, we are home. 

It was a very long day, but a successful one. Thank you to everyone that reached out to us today to tell us you were keeping us in your thoughts and prayers. Overall we learned enough to simultaneously give us hope and terrify us. I daresay that in the two hours we met with the good doctor we learned more than most doctors will ever know about ESES. Indeed, as Dr. Riviello pointed out -- this condition is so rare (it effects less than .2% of the patients presenting with childhood epilepsy) that it is often up to the parents to become the authority on their child's condition in order to care for them. Fortunately, that is a role I am already used to.

And it is a banner I will take up again in the morning. Right now, we are weary in every sense. Simon and Tigger have been tucked into bed and Brian and I are tucking into some sushi and a beer (or 2). We keep starting conversations about what we learned.. and then dropping them. We are still processing it all. We don't yet know what to think, much less what to say.

Rest assured, however, another post will follow soon. I will share what I know, what I have learned, and what our next steps will be. Thank you again for reading, and for opening your hearts to us. We feel the love and are using it to help us stay positive and focused on one step at a time. Our little man needs us all in top form. 

We took the train and got an early start this morning. Simon was super excited to be on a train -- he kept singing the "Chuggington" theme song and offering to take everyone's tickets. Tigger wasn't quite so keen on the experience. He settled down after a little while, though, and took a nap. Good thing since the walk to the office from Penn Station was just a tad over a mile.

Tigger and Simon made their typical grand entrance to an adoring crowd at the NYU Epilepsy Center. They are rockstars... Brian and I are just part of the entourage.

As usual, we bribed Simon with a sandwich to get him to cooperate through the 2-hour-long appointment. Tuna on rye from an authentic NYC deli... what could be better than that?

My boys.

Bye-bye city!

Naptime on the train for a very tired Tigger (Brian fell asleep too...). It was a long day after a long week. Now, it is definitely time to get some rest, take a little time to process all of the information (and emotion) we are faced with, and then--sharpen our swords and our determination. We will beat this. We have to.

Making changes

 

This is a photo of Simon's current night-time meds. It is practically enough to make a small meal of and it takes almost the same amount of time to prepare and feed it to him. The capsules need to be broken and combined with yogurt and fed to Simon. The liquids need to be taken slowly to prevent gagging, and the chewables come last... after dinner mints?

The "me" of two years ago would have been horrified to be pumping my son full of drugs. The me of today is just grateful that there is something to help Simon outside of the MAJOR brain surgery which is already being discussed. I'm hopeful that this cocktail is the most I will have to administer, but I know that more meds are on the horizon and will be our next steps in treatment.

Today we met with Simon's neurologist to review the actual EEG, get bloodwork, discuss new medicines (and their side effects) and schedule our next EEG for later this month. We pulled together paperwork and older test results for our meeting with Dr. Riviello on Thursday. We discussed how we could work all together as a team moving forward. Again, I realized that the me of two years ago would have been horrified to be surrounded by so much medical intervention, tests, and hospital time. The me of today is just grateful that we have the resources to get the help we need.

Sometimes I think that the me of two years ago would not recognize the me of today. I wonder if she would look on who I have become with a mixture of pity and/or misplaced judgements. Occasionally I'll see a reflection of my former self -- the confident and self-congratulatory mother of relatively healthy and well-behaved children --  in the eyes of another woman and I realize how far I have come and how far I yet may have to go. I see all in a moment how much I have grown, and I silently pray for that woman I don't know, that woman I was, that she may never have to walk down this path with me. I pray that she may gain the wisdom of a kind heart without ever having to go where others (including myself) fear to tread.

The EEG

It has been a while since my last post, and a lot has happened in the interim. Summer turned to Fall, schedules got crazier, and Simon has had a few more seizures. Not knowing what else to do medication-wise we decided to do an overnight EEG (electroencephalogram) with Simon to see if we could capture any information on his seizures that would help lead to more targeted treatment.

The EEG itself is non-invasive -- basically a whole bunch of sticky electrodes are placed all over the head and chest of the person being tested -- but it was still pretty traumatic for our little guy. I did my best to make the test as easy on him as I could, preparing him through viewing social stories and you tube videos of the process, and then trying to put a positive spin on it (I called it a "hospital sleepover with stickers!" I even brought popcorn and a new video), but he wasn't having any of it. As soon as he saw a hospital bed and a bunch of wires he imploded and we spent the first several hours of the test just trying to calm him down and hook him up. Eventually, we succeeded and he did fall asleep. The next morning the technician unhooked us and we were sent home after being told it would be 2 weeks before we could see any results.

I doubted we would find anything from the EEG. Our doctor wanted to keep Simon on his meds for it to get a "baseline" view and he had no seizures while we watched over him (all...night...long). I left thinking that the effort was futile and we would have to repeat the process another time without medication in order to learn anything.

I was half right.

We will be repeating the process, many more times, but not because we didn't catch anything. As it turns out, we caught a lot.

Monday I got a call from our Neurologist saying that the results were in, they were interpreting them, and she wanted to let me know that they had noticed some abnormalities. She asked me a lot of questions about Simon's development and progress. She specifically wanted to know when we started to notice any autism-like behaviors. She explained that there are epilepsy syndromes related to the abnormalities they found and she needed to do more research to be sure of what we were dealing with. 

I tried not to freak out (too much).

Over the course of the week there was a lot more discussion between myself and the KKI neurology team about Simon's EEG. Finally, he was diagnosed with ESES -- Electrical Status Epilepticus of Sleep. People who have this condition experience many, many sub clinical seizures (a sub clinical seizure is a seizure in which the brain activity is epileptic but there are no outward visible signs of seizure). Sometimes they have them while awake, but they mostly occur while sleeping. Over time, the constant seizure activity can erode a person's cognitive and physical abilities. It can cause language and communication delays (and therefore is sometimes mistaken for autism) and behavioral changes. It can even cause psychosis.

We learned that for over 85% of Simon's non-REM sleep he is having seizures, and that he also experiences them while awake. We also learned that this condition is very, very rare. So rare that there isn't a statistical prognosis or a set course of known effective action. So rare that no matter how many times I google it I only come up with the same handful of articles (which mostly state how rare the condition is). So rare that most doctors have never dealt with it and there is only one person with enough understanding and experience in it to be considered an expert. 

Fortunately, that expert is no further away than NYU, and doubly fortunate he seems to be a very nice and knowledgeable physician who doesn't mind answering a very worried mom's millions of questions for nearly an hour this morning. His name is Dr. James Riviello and we have an appointment with him on Thursday of this week. 

So, we are headed to NY in a couple of days and I am picking the blog back up. I know that somewhere out there there is another worried mother whose baby has just been diagnosed with a rare disease... maybe even ESES. For her, and for the many people that love us and hold us in the light, I'm writing again. Pray for miracles -- we need them.

A Tale of Two Doctors

"The children that do best are the ones whose parents are the most involved."

This seems like common sense, I know, but nonetheless I needed to hear it. Brian and I were sitting in a conference our "regular" neurologist had called in response to an email I had sent her following our slightly disastrous first appointment with an epileptologist (a neurologist that specializes in epilepsy).

We'd been referred to the epileptologist following Simon's most recent status seizure. The consensus of the many medical professionals following Simon has been to advise us to seek more aggressive treatment of Simon's seizures, which have not yet been controlled through medication(s). I imagine that, were they all "normal" (i.e. short) seizures, we'd be directed to keep on keeping on with medicines alone, however the fact that Simon has had 4 status episodes (each carrying significant risk for brain damage, or worse) in increasingly rapid succession is a serious cause for concern. We might not always be as lucky as we have been, and it is time to start taking more intense (or drastic, it depends on your opinion...) measures. Currently up for discussion have been brain surgery to remove the area of activity, the ketogenic diet, more medicines, and/or a VNS implant (the latter 2 options are what I am most interested in presently).

So, enter the epileptologist. The über specialist we need to consult in order to determine viability of options, create next steps, and ultimately set a course of action. Unfortunately, it turns out that there aren't that many pediatric epileptologists around, and of the three that work with Simon's neurosurgeon two are not taking patients and the third had a six-month waiting list for new patients. Fortunately, a waiting list is no match for this mom. Knowing how many times we have been in the hospital for seizures over the past several months, I was pretty certain we had seen every neurologist during "rounds" at some point or other. If this doctor had already seen Simon, we weren't a new patient, and therefore we could have the next available appointment. Sure enough, it turned out that this doctor was the guy we saw during our very first stay in the PICU. He had notes on Simon, we were already "in the system," and so we got an appointment to be seen within the week. (Go me.)

But...  uh oh. He's the guy we saw the first time. The big shot epileptologist we needed to see was the same guy that wouldn't take five minutes to talk with us, answer questions, or give us any solid info at all (unless you count him condescending to tell me the medicine he prescribed tasted like cherries, like that was my biggest concern. Personally, I don't count that). This was same guy that walked away from me when I asked him questions while standing over my four year old son's comatose body in the pediatric intensive care unit. This was the guy I had to rely on to help us.

Well, crap.

When I wrote to our neuro to tell her I had made the appointment I also (as tactfully as I could) mentioned that I was concerned about the demeanor of the doctor we were being sent to based on prior experience. I asked for her guidance and she advised me to go in with an open mind, and remember that I am a much more educated mom now that I was 2 years ago. She also said that she would email the doctor in advance to discuss both Simon's history and to let him know that Simon's parents are very involved and educated.

If only that had worked.

I can honestly say that in over six years of dealing with many "créme de la créme" of the medical profession, Brian and I have never ever been treated the way we were during this appointment. I won't go into the gory details, but after 15 minutes of talking at us, ignoring Simon (but petting Tigger), suggesting that we "scoop out" part of Simon's brain, repeatedly contradicting himself and other doctors we have consulted, completely dismissing our concerns, and behaving more than a little like a bully when I told him we aren't currently interest in allowing Simon to participate in his research project... he looked at the time and then walked out on our appointment while I was in the middle of asking him a question.

I considered following him. Making him answer my questions fully, making him recognize that he can't dismiss this parent so easily. I've done it before. But those were different circumstances -- I was following the doctor not because he hadn't answered me, but because I hadn't understood fully, or had realized after he left that I needed more information.

This was different. This time, I realized that I didn't want this doctor's help, and he wasn't good enough for me to try to teach a lesson to. If he couldn't deign to answer my questions, if he contradicted myriad other professionals with merely a shrug, and if he thought that it was ever okay to bully a parent into participating in his research before giving them assistance in other areas -- it was clear that he was not a person to be trusted, much less a doctor to entrust with the care of our precious son.

I knew this. My gut screamed it. I acted on it, but I also doubted myself. Maybe he was that brilliant that he was entitled to bad behavior? Maybe he was Simon's best hope and what if I was letting my pride get in the way? He couldn't be all bad if he had other patients and so much power in a "world-class" hospital?

What if I was trying too hard, pushing too much, over-educating myself in areas where I had no business having opinions and was therefore endangering my son.

Talk about walking around with the world on your shoulders!

Fortunately, our neurologist does not treat me like an imbicile. Fortunately, she takes the time to listen to her patients, answer questions, and field the frantic emails of worried moms late at night.

When we finally met with her, she didn't seem terribly surprised by the account of our experience with the epileptologist. She understood where we were coming from in wanting to work with someone we could trust, and she offered to contact her colleagues from another very well-respected hospital to get us in for a second opinion (we took her up on this).

What I am most personally grateful for, was that she took the time to let me know that I am on the right track. I often wonder about how other parents in situations like ours cope. I pay attention to snippets of other's experience from the social media groups and email list serves I belong to. Sometimes I find parents like us -- who take it upon themselves to spend sleepless nights learning about their childrens' condition and searching for ways to keep them safe and improve their quality of life. Other times, I see parents who step aside and put all their faith in external sources. Most often it is something in-between. Sometimes I don't know what approach is better. Like everyone, I simply do what I believe is right. I do what I have to do.

I know that resources, education, culture and personality all play a part in determining how people react in extreme circumstances, and parenting a medically complex kid like ours is definitely an extreme circumstance. I try not to judge others, just help, and provide support where I can. But, sometimes, I need know that I am not only doing what I think is best, I need to know that am doing the right thing. 

"The children that do best are the ones whose parents are the most involved." 
Even a super mom needs a gold star once in a while.

Pupdate

Tigger has been with us just a little over two months now -- which is hard to believe since his larger than life presence (I mean that literally -- he is 70 pounds and growing!) is already a fixture in our home. We've fallen in love with him and I know he loves us back.

Tigger is the friendliest, most affectionate dog I've ever encountered -- in fact, I think his love of people, especially children and the elderly, is going to be one of his biggest challenges as a serious service dog. He often gets distracted by his love of love, and can forget what he is supposed to be doing (it took me an extra half hour to pick up a prescription from Target this week because of all the old folks Tigger had to love on -- though this is my fault, too. He is so sweet that I don't have the heart to stop him!).

Tigger is also very smart. Smart enough to learn and follow many commands; and smart enough to decide when he doesn't want to follow them. Like a little kid, he tests his boundaries to see what he can get away with; eating Simon's leftovers and the cats' food, stealing toys, and barking at strangers passing by the house (I'm pretty sure he just wants them to stop and say "hi") are his most frequent infractions. Over the past several weeks Tigger has figured out that I don't like to yell, Olivia is a big mush for his fuzzy face, Brian is the "alpha" but has a soft spot for happy puppy antics, and Simon is... well, Tigger still seems to mostly see Simon as the "other puppy."

It hasn't been love at first sight for Simon and Tigger, which has been hard for me to admit even to myself. Along with everyone else, I wanted the "Hollywood ending" to our boy-meets-dog story; particularly after the incredible outpouring of support given to bring the two of them together. A part of me knew that it couldn't be like that; because it has always taken plenty of time for Simon to adjust to anything different, and this dog is whole lotta different. I knew this, but it wasn't what I wanted, and I worried about their relationship. A bond with a service animal is something that can bring stability and safety to Simon's life on a long-term basis, which (like any parent) I desperately want for him.

So, being me, I had to do something (I'm really not a wait-and-see person. I'm not sure if this is a fault or a blessing?). Though I know that some things can't be forced, I also know that most things can be helped along if approached in the right way, so I did some research (you're shocked, I know) and then I looked for some help.

Since the autism seems to me to be the biggest challenge in this (or any!) relationship, I started out by researching autism and service dogs, more specifically service dogs for people with autism. I wanted to know what those relationships are typically like (if there is such a thing as "typical" when it comes to autism), and I wanted to know what a service dog can do for a person with autism. We know what Tigger can do to help us with Simon's seizures, but it occurred to me that maybe there are other things Tigger can do for us when it comes to his cognitive and communication disabilities.

I found out that the autism service dog relationship  (it is worth it to mention that most of what I found had to do with children and autism, not so much about adults...no idea why) generally starts as a 3-way, not a 2-way relationship. The dog, the child in need, and the caregiver(s). The dog knows that the child is not the alpha, so a broader relationship is needed with the child taking on as much care for the dog as they are able. Over time some children are able to care independently for the dog and establish a 1:1 relationship but like all things with autism and disabilities, this varies depending on the individual.

In regard to a dog's autism-related service function, I found a ton of information on their therapeutic benefits both at home and even in the classroom (there are even reading programs that use the dogs in schools!) -- but this is mainly what I was expecting. Judgement-free companionship, developing empathy through caring for an animal, and establishing a bond through both nonverbal communication and verbal commands are all great for kids on the spectrum; we've already seen this with Simon. But... these are benefits that could be obtained through use of any well-trained and kid-friendly pet. They are not by definition a service animal's role.

What I wasn't expecting to find is that service dogs for autism have a very conventional service-dog role (even more conventional than a seizure dog!). An autistic person's safety and functionality are compromised because their perception of the world is impaired. Traditionally, a service dog is trained to pay attention to what their human cannot, and then assist that person accordingly. It is generalizing a bit, but essentially this concept isn't any different from the way a blind or deaf person uses a service animal -- something most of us are pretty familiar with.

I honestly don't know why I had thought that they would do something more avant-garde. In retrospect it makes complete sense, and I even wonder why more people aren't using service dogs for autism currently -- though interest in it does seem to be on the rise.

After all the research, my next step was to determine what to do with all the info. To figure that out, I knew I would need help. Training both Tigger and Simon for multiple purposes is going to be quite an undertaking.

First, I spoke with Tigger's trainers from Noelle's Dogs Four Hope about what had been going on with Simon and my thoughts on how Tigger can help us, not just with the seizures but with the autism as well. Much to their credit, they are not only willing to help us train Tigger for both purposes, but they have been excited by the opportunities it presents and have been actively doing their own research and communicating with us about what we can do moving forward. (They are truly awesome people!)

Next, I made an appointment with a behavioral psychologist. We'd been offered this service ever since Simon was diagnosed with autism, but I'd put it off thinking that it was really only meant for parents that had "lost control" of their particular situation. This is another great example of "Laura being wrong" (how many are we up to on this blog?). The more I thought about it, the more things I realized I needed help with. Not because Simon is out of control, but because I want to find as many ways as I can to help Simon be as successful as possible. We are in many ways blessed, but we also have a lot of challenges; Simon's relationship with Tigger is just one (safety awareness, attention difficulties, and coping with stress are a few more..). Last week we met with our therapist for the first time and I think it was a very positive step. He thinks we can address all of the issues we brought up, and we made some great goals. Best of all, he thinks that Tigger's presence in Simon's life is a GREAT thing. He confirmed that developing a 1-1 Tigger-Simon relationship will take time (a lot) and work (a lot) but the benefits for Simon have the potential to be huge. (He also didn't seem think that I am crazy, which is a nice bonus.)

So, we have a lot to work on, but I can say that already we have made a lot of progress -- Tigger knows that Simon is the one that feeds him, he will sit for Simon on command, will walk nicely beside Simon when he practices holding the leash, and he only steals Simon's goldfish crackers when he is pretty sure Simon isn't looking. Simon also recognizes that Tigger is his dog. He will answer questions about Tigger, he seems to enjoy the process of feeding Tigger, and he likes to give him commands and treats. He doesn't even mind when Tigger plays with his toys (Tigger loves any ball or stuffed animal). Simon also continues to talk to Tigger a lot, mostly using complete sentences, which is pretty amazing.

We may not have had our love-at-first-sight Hollywood beginning, but the drama is well underway, and I do believe that we will have our happy ending. The boy and dog will live happily ever after, but it may take quite a storied arc to get us to that conclusion.

Stay tuned! 

Be OK

I'm going to tell you a secret: today, I have not been okay. Simon is back to normal, and all's well that ends well, except I'm not... yet. I do know that I will be -- I've been through this routine -- this low in the wake of an adrenaline-pumping-life-threatening-emergency -- enough times to have it feel routine, but it still catches me a little off-guard.

Each time, I try to convince myself that I've toughened to the level that I will no longer be so affected. I tell myself that I can handle everything and anything and keep on keepin' on... but... It always ends the same. I am tough as nails as long as I need to be, but as soon as I know that everything is alright I start to crumble. I've been on the verge of tears all day, I haven't been able to focus on my work, and (though I have slept since the weekend's marathon) I am bone-weary tired. I remember once reading that the stress levels of special needs parents can resemble those of combat soldiers. On days like today, I believe it.

So, what's a good soldier to do? Fortunately, I know this routine, too. Just as I have a plan to cope with Simon's crisis, I have a plan for my mini breakdown post crisis. (I'm a little type A, deal with it.) I'm sharing my outline below just in case you are ever in need of a pick-yourself-up-by-your-really-cute-shoes survival guide. Introducing:

Laura's 5 step program to coping with the post-post-crisis-crisis:

1. Buy a new pair of really cute shoes. This is extra effective if you have a coupon to DSW. Sadly, this time DSW had nothing I liked, so I cashed in my Bed Bath and Beyond Coupons (the shops are next to each other, it was kismet) to get myself a robot vacuum. I've only had it for a day and I love this thing. Not only did it serve as my stress-purchase BUT it cleans my house, too! All by itself! While I watch sipping a glass of my favorite vino! Which brings me to step 2...

2. Have a beverage of choice (or two). Not enough to cause a headache tomorrow, just enough to loosen that clenched jaw and the knot between your shoulder blades.

3. Now that your jaw is unclenched you're ready for a good cry. This is best done in the shower. I swear the shower is the very best place in the world for a good cry. Just stand there in the steam and the stream of hot water and let it go. Magically, you emerge a much calmer and more rational individual.

4. Hug your family and remember you ARE all okay. Pet the dog. Get into a tickle fight. It isn't possible to be sad with all this cuteness around you.

 5. Know in your heart that you got through it, again. Know that if you did it once.. twice.. (four times, who's counting...?), you can do it again. 'Cause it will happen again, and maybe next time you'll be able to just keep on keepin' on. Be as tough as you know you need to be.

And if not, I've got a list.

Status Update

Friday night, after a pleasant family trip to the mall (incuding Tigger), I had a strange urge to check the emergency bag I'd packed months ago for impromtu trips to the hospital. I don't know why, I just felt the need to make sure all was as it should be, just in case. iPhone chargers, ear phones, instant coffee, yoga pants and top, socks, Simon's yellow blankie (we have multiples), toothpaste and toothbrush for me and Simon, hairbrush and tie, tissues, notepad, pen. It was all there, but I did decide to add a few pull-ups for Simon since they never have them at the hospital. I zipped the bag and went to bed.

It has been a pleasantly busy summer so far. I've had lots of great projects to work on, the kids have thoroughly enjoyed their new babysitter and their inclusion summer camp, and we took a lovely trip to the beach just a few weeks ago. Most especially, this has been the summer of Tigger. Right away we came to love having him in our family. Getting to know him, getting he and Simon to bond, maintaining his training, and just adjusting to life as dog owners has been a big focus of our day-to-day over the past several weeks. (I promise a more in-depth Tigger post later this week).

Things had been going along smoothly until Friday night. About an hour after going to sleep I heard Brian calling for me from Simon's room and I immediately knew what was wrong. Brian had seen Simon suddenly sit up in bed on the video monitor (Brian is a night owl) and, when he went in to check on him he found that Simon had vomited and was in the beginning stages of a seizure. 

We waited the required five minutes, but the seizure did not stop on its own. We gave a new emergency med (nasal diastat), which slowed but did not stop the seizure, and then called an ambulance.

While waiting for the paramedics, Simon lay on the floor seizing with Brian and Tigger by his side (I ran out to drop Olivia off at a neighbors house and flag down the ambulance). Tigger sniffed Simon all over and stayed close, but as he is not yet specialty trained, he didn't know what to do. Since this was Tigger's first experience with a big seizure I have to assume that it was simply a good introductory learning experience. Sadly, the only way Tigger will get to know and recognize Simon's seizures is for Simon to have more seizures. Ugh.

As usual, the paramedics had to take us to the closest hospital, not our preferred hospital. Usually, this is a disaster, but (I can admit to being pretty pleased with myself) through really awesome preparation that I intend to make even more awesome, I was able to make it a successful trip. After our last status episode, which was quickly and successfully treated at Hopkins, I requested a list of the drugs and dosages that they used. I wanted to have a record of what they did since they were able to stop the seizure without causing a coma (not being in a coma is a really good thing). I took a photo of that list (signed by our neuro for authenticity's sake) and keep a copy in my phone so I ALWAYS have it with me. I was able to show the list to the ER doctor and insist we follow it to the letter.

I did have a bit of a squabble with the doc about this. Apparently, the meds we used aren't typical protocol for a status seizure (a medically induced phenobarbital coma is actually the protocol), and the med that I really wanted was not immediately available. I was polite, but I had to be quite firm and more than a little pushy (I believe I asked the doc how many status seizures she had seen and then pointed out that I was a lot more experienced in this particular area...). Nonetheless, it still took a half hour to simply get the medicine we needed for Simon from their pharmacy to the ER. But, once we had it and loaded Simon with it -- the seizure stopped. Two and half hours after it started.

Despite the fact that we'd stopped the seizure, the hospital still transferred us to Hopkins (they seriously can't wait to get rid of us, it is almost comical). During the ambulance ride to the second hospital I mentally braced myself for Simon's usual (warranted) terrified post-ictal state, when he'd wake in a few hours to find himself in the hospital attached to so many wires and tubes and machines. Compounded by the misery of being stuck there for at least the next 24 hours. 

Simon started to wake up (and freak out) almost as soon as we were in the ER at Hopkins. After we got him settled and he finally fell back to sleep, the doctor pulled me aside into a private room. There, she confessed that she has a 10 year old autistic son. She told me that she understood some of what we were going through personally and she knew that, in my shoes, all she would want would be to take her boy home so he could really rest as soon as possible. "You look like you know what you are doing," she said, "is that what you want, too?" 

My eyes filled with tears and I nodded hard. To avoid a hospital stay would absolutely be best for Simon and I absolutely did know what I was doing. She asked us to stay for another hour so she could watch him, and she made me promise to bring him back at the slightest sign of trouble, but she went ahead and got our discharge ready so we could leave right away.

As we left, I thanked her profusely and noticed that she, too, had tears in her eyes. "I can't take it away," she said, "for either of us. But if I can make it just a little bit easier, than that is what I am happy to do." 

Tigger stayed by Simon while we were in the ER...

and he held Simon's hand on the way home...

and watched over him while he recovered.

TiggerFest!!!

Some of the kids showing appreciation for the guest of honor.

The party to recognize all those that helped bring Simon and Tigger together was a HUGE success (and I mean that literally -- there were well over 100 people in attendance!). Thank you to everyone that came out to celebrate with us -- It was a beautiful day and a beautiful reason to throw a party.

Me with the awesome band, Confidence in Volume!

Before our awesome band played, I took a moment to personally thank everyone -- here is (more or less) what I said:

This party is not about a dog -- albeit it an absolutely adorable super hero dog. It still isn't about the dog.

This party is about a little boy who, in his first six years, has encountered challenges that most of us would not be able to survive and still be standing; from a stroke before he was born, to three life-threatening status seizures over the last 18 months, to more diagnosis than I care to think about. And Simon has not just survived -- he has thrived. This has been a year of incredible progress for Simon.This year he had a favorite color, deepened his love of all things pirate, and taught everyone some new songs. He also wrote his name and read his first book. This year, in kindergarten, Simon made his first friends. He had his first play date and he had his first ever birthday party (that he helped plan! Pirate themed...). Most recently, Simon got his first dog and with it his first responsibilities in helping to care for Tigger.

Simon has had an incredible year, and we are profoundly grateful. We are grateful for his indomitable spirit and amazing resilience, and we are grateful to the many people that worked with him, cared for him, befriended him, and let him into their hearts to love him.

Which brings me to what this party is really, REALLY about -- the reason it was so important to our family to get everyone together that has so positively impacted us this year -- this party is about YOU. Our family, our friends, our community.

One of my many faults is not knowing when, or being able, to ask for help. The people that love me know this and, as soon as we started to talk about a seizure dog and said the word "deposit" my parents and the rest of our family were there (as they have always been), this time literally with cash in hand and not taking "no" for an answer. I am grateful that they did.

Mom and Dad chasing the kids!

Our friends, also knowing how hard-headed I am, went right ahead and called Noelle's Dogs for Hope to find out what they could do to help us get Tigger. They shared our story with their own friends, and their families, and without me ever knowing about it, they collected funds to cover Tigger's travel from Colorado as well as a significant portion of the cost. And then we went out for dinner one night and they waited for me to finish a glass (or two) of wine before they told me what they had done. Four months later, I am still speechless.

I am unspeakably lucky in my friends!

Simon's school, Lutherville Lab, not only took amazing care of Simon this year, but have completely embraced our entire family and been right beside us in looking for solutions to make sure that we do everything we can to keep Simon safe. I honestly don't know of another school that would say to a parent (without knowing what sort of legal challenges bringing a service dog into their school would present) -- "Whatever we have to do, we will do it. We are here with you." 

Some of the great ladies from Lutherville Lab

Most of all -- the kids. We spend a lot of time talking and worrying about bullies; especially we parents of special needs kids who worry about our children being particularly vulnerable. But the kids that are here today have proven that they are capable of more kindness, acceptance, generosity, and true friendship than we could ever have imagined. 

At his own birthday party, Jaidon asked not for gifts for himself but for his friends to give him gift cards to Petsmart and Petco so that he could give them to Simon to help buy what Tigger would need when he came home with us (Tigger says thank you for the toys!).
 

Simon with some of the great stuff for Tigger we were able to get with Jaidon's gift cards!

Ridgely Middle found out about Simon and Tigger through Kayla, whose mom is Simon's kindergarten teacher. They used their annual Arts in Action night to raise awareness about epilepsy and seizure dogs, and raised funds for Tigger through the auction of some pretty amazing pop art sculptures. 

"Club Friends" created by a group of students at Lutherville Lab to be a club for kids both with and without special needs to celebrate friendship and share their kindred spirit with the community through good works; waged a "Cents for Simon" campaign that raised impressive funds, awareness, and an amazing affection for Simon throughout their school and beyond (we have heard fifth graders describe Simon as the most popular kid in the school -- I have a feeling that Tigger is going to totally lock that in for next year, too!).

Simon at school with his teacher, friends, and Tigger!

Finally, Simon's kindergarten friends this year, and his teacher and aide Mrs. McGee and Mrs. Natterman. These were the most enthusiastic supporters of the "Cents for Simon" campaign; canvassing their friends and relatives for support, creating lemonade stands and wearing their "Help Simon get a Seizure dog" pins with pride. This year -- seeing how Simon is not only accepted by these awesome kids, but cared for, helped, and genuinely loved by his classmates, has been the most profound gift this mom could have ever received.

People typically throw parties like this to celebrate milestones in their life -- to recognize an important place they have reached and to celebrate with the people that have helped them get there. This year, we have gone from feeling frightened for our son's well-being, to being embraced and uplifted by our family, friends, community, even people we don't know -- together, we have experienced a true miracle, and I can't thank you enough for being a part of it. I will carry this in my heart always and I know that years from now, when Simon is encountering more challenges as we all inevitably do, I will have the story of what happened here to remind him of how loved he is, how great people can be, and how miracles really can happen.

Our awesome school-bus-driver-ice-cream-man made a special appearance with his truck for the occasion. He was just as popular as Tigger!

Beanie Baby Service Pups in Training for everyone to take home!

Simon had so much fun he required a two-hour post party nap.

This about sums it up. :-)