Speech, OT, PT, Oh My!

We had our First Steps reevaluation yesterday.  At a reevaluation meeting we look at where Luke is performing and decide what services need to continue, what services need to be added, what services need to be cut. 

As you all know - Luke is doing amazing.  I try to never forget that or let myself get bogged down in what he can't do.  But when I go into one of these meetings....that has to be my sole focus.  What isn't he doing that other two year olds are?  Where is he behind?  What should be be doing more independently?  The last several weeks, I have been focusing on watching the other kids in his daycare room when I pick him up.  I watch to see what words they are using, how easily they are moving around, what kind of interaction they have with each other.  I have researched developmental milestone lists and more about the brain and its areas of function. 

Looking at where he is and what he is NOT doing, I started stressing out about trying to maintain our PT services while increasing our Speech and OT services.  I wanted to increase Speech to twice a week and OT  to once a week.  I do not want to 'over-therapize' (I might've just made that word up...) Luke and burn him out but this time period in his life is critical for development.  The proof in that statement lies in how incredibly well he is doing after 2 years of early intervention services. 

Another worry I have, of course, is Ben.  As a teacher, part of the joy I have is getting to spend the summers with the boys.  If we were to get all of the therapy I wanted - then it would probably greatly decrease the amount of summer fun we were going to get to have. 

This quote has come to mean a lot to me.  Please don't think I feel like we are making huge sacrifices for Luke.  But in a way we are.  We are sacrificing our time with Ben.  We are sacrificing time with friends and with each other.  But if those sacrifices right now mean the very best quality of life for Luke - and our family - later, then they are indeed not sacrifices at all. 

Sooooo our First Steps coordinator is AMAZING.  She looks past the black and white of the paperwork and the guidelines she has and listens to his therapists and me talk about Luke, about his PMG and about his brain.  On paper, Luke is not terribly far behind.  But given the areas of damage in his brain his risk for becoming farther behind - particularly with his speech/language - is high.  She agreed - easily - to speech twice a week and OT once a week and maintaining our PT!!  So our lives have gotten crazier and better! We have one more year in First Steps and we are certainly making the best use of our time! 

I'm not sure what our schedule will look like this summer - Speech, OT, PT, Equine Therapy, ABM (Yikes!).  Of course, I'm worried about the amount of time that I'll have to occupy Ben while we have therapy as well as finding 'extra's' for Ben.  Luckily I have a lot of people who are more than willing to help so Ben may even end up with a better summer than I had planned for him!! 

Today we had Luke's neurologist appointment.   It was great.  Luke was not in a showing off mood because the appointment was not at a good time for him.  However, he did well and we come back in another 6 months.  I was under the impression that Dr. Smyser would be our neurologist until Luke was an adult.  I was wrong...eventually we 'graduate' from his program.   I DO NOT agree with this and am planning on figuring out a way for Dr. Smyser to keep his first 18 year old patient...Ideas on this???  Dr. Smyser just kind of laughs at me...he doesn't fully realize how very serious I am!!!!!!!

I've said it before but again, I am so thankful for the high level of support we have gotten and are getting for Luke.  In 'meeting' people around the country and the world, I have come to know that we have truly been blessed with the doctors, therapists and services we are getting to help Luke be the very best he can be.