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. 

Happy 2nd Birthday, Luke!

Today Luke celebrated his second birthday!  I can't believe how fast time has gone.  Two years ago yesterday, I was crying on my way to the hospital.  We knew about his Polymicrogyria. But we had no idea what the road ahead was going to look like for our family and for our son(s).   I wasn't ever sad about him coming - I just didn't know how or if we were going to be able to protect him once he came.  But man is this child a fighter & hard worker! 

I think I've said before that this blog has become somewhat of a journal for me.  I like to go back and look at his progression - how big he's getting and how much he's learning.  So to mark this important milestone - here's what Luke is up to at two years old!!

*He is doing well with his gross motor skills.  He is learning to jump - he can jump with both feet when he's holding onto something.  Sometimes he can make a small jump by himself.  He is walking backwards and is sooo proud of himself!  We are working on running.  He is starting to walk up hills independently and is becoming more fearless as he goes down them (yikes!).  He is able to climb up into our play set and is going down the slide on his belly.  He loves it!!

*His speech is coming right along.  He seems to understand most of what we say.  He is still difficult to understand but it's becoming easier.  He has a lot of words that I understand.  He is still inconsistent with producing some of his 'known' words.  He'll have a word but then when you ask him to use it - he can't spit it out.  We are trying to get him to understand how to use two words together and to speak more clearly.  His speech therapist has worked wonders with him.  I think he is starting to show some frustration as he tries to communicate something to us but is unable to - but that's normal toddler behavior:)  Yay!

*His fine motor skills are improving.  He still has difficulty using the pincer grasp but is making progress.  We are continuing to work with him while he is eating.  Luke still tends to shove too much food in his mouth.  He understands the concept of picking up one piece of food at a time but he doesn't choose to do it most of the time.

We had a quiet birthday day for our big boy who tends to get a ton of attention.  Since we hadn't really planned anything for the big day (GASP), we forgot to get him a present!!  Yes, we are terrible parents!!  We went out for dinner tonight and then to Toys R Us.  Luke got to pick out his very own toy for the first time.  So we walked out with an Elmo doll & some Elmo books.  The kid loves Elmo (Ehhhmmmo!). 

He has a neurologist appointment coming up next week.  We are also meeting with our First Steps coordinator to determine his services for the next 6 months. 

Of course, his birthday celebration continues tomorrow.  I am a big believer in Birthday Weekends (weeks, months...milk it!).  Again nothing too exciting planned - except for time with our little family.  Wait - that's huge! 

Happy St. Patrick's Day to all of you and most importantly - Happy Luke's Day to everyone!!  Love to you all!