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!