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!