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!

Get Away

There's nothing quite like packing for a beach trip with the kids to make me long for simpler days. Days when going to the beach meant throwing a bikini, a toothbrush, and a sundress into a cute little bag and dashing off to lie on the sand, work on my tan, and listen to the waves; occasionally breaking routine by reading a novel or going out dancing.

Sigh.

However, despite having to literally pack everything including the potty seat; I was looking forward to our trip to the beach last week. A change of scenery, time with family, and a chance to break a bit with reality -- namely work, chores, and therapy appointments five times a week. I even imagined that I would be able to mentally relax, simply enjoy the kids, and take a time off from worrying so much about Simon's present and future.

And, it was nice to get away. I needed that whiff of sea air, and I think the kids did, too. It was great to see our big, boisterous family, and I did manage to get a tan. But, my fears followed me to the shore. In truth, I was forced to face some things I'd been dreading wholeheartedly.

One thing I was prepared for. One my nephews is only a few months older than Simon, and watching Olivia play with him in a way so different from the way she interacts with Simon hurt my heart a little, dredging up unwanted "what would life be like if the stroke had never happened...?" thoughts. But, I had known this was coming -- and I was more prepared this time than I have been in the past. I let the thoughts come, and go. I checked myself when making comparisons, reminded myself to be positive. It was a little tough when the five year old cousin started asking questions about Simon's age and ability (and was in complete disbelief when I revealed that he and Simon were both 5); but, no harm meant or done. Simon is doing well, I remembered, he's okay.

Until he wasn't okay. Monday night, after a day full of parades, swimming, parties, and fireworks; Simon fell asleep in his car seat while we were stuck in traffic on the way back to the beach house. Sitting in the front passenger seat I found myself dozing off as well, until I was woken with a jolt by a horribly familiar rhythmic gurgling noise. The last time I'd heard that noise was November -- it was that strange sound that had alerted me to Simon's first seizure, the one that had lasted 2 hours and ended up with him unconscious in the PICU for days. I whipped around in my seat to see my fear confirmed -- Simon was having another seizure.

Though I was completely terrified on the inside, and I know Brian was too, we were -- to our credit (I think); completely calm outwardly. Brian pulled over and started to watch the clock (we've been told to administer Diastat if the seizure lasts more than five minutes), while I climbed into the back seat to unstrap Simon and lean him over so he wouldn't aspirate if he vomited (which he did). I looked into Simon's wide-open, vacant eyes and spoke softly to him, and to Olivia (who was freaking out). I told them what I didn't really believe -- that everything was alright. Then, just as we were getting ready to give Simon the medication and head to the hospital, he stopped. His blank eyes suddenly met mine, and he recognized me. He took a drink of water, and went right back to sleep. We took a collective deep breath. Brian merged back into traffic, and I sat in the backseat all the way home; holding Simon in one arm, and Olivia in the other. No one spoke.

I dialed the Neurologist on call when we got back. She told me not to worry. Kids with epilepsy are going to have seizures and not all of them are a big deal. They increased Simon's medicine a little since he has grown a bit, and they told me to call them if anything else happened. We have an appointment later this month.

So, all is well that ends well. We enjoyed the rest of the trip; swimming, biking, shopping, and playing in the sand. The kids had a blast with their cousins. I did get a great tan.

But, I didn't get away from my fear, I was forced to face it. I didn't get away from worrying about Simon -- especially with the increase in Keppra, which makes his mood swings volatile, something both hard to watch and to mitigate. Instead being relaxed, I was edgy. I had moments where I simply had a hard time keeping it together.

It has been a week since that episode, and I'm coping better. Coming home felt good, safe. I've tried to remind myself to be positive, and strong, and recognize the fact that the medication and the seizures are just a part of our life, they are our normal and I have to accept that. But I also recognize that there is a part of me that doesn't WANT to accept it. I don't want this for Simon. There is still a part of me that longs for a simpler time, and I may always wonder what life would be like without the stroke.