Monday, March 16, 2015

The Big Five!

Happy St. Patrick’s Day and Happy Birthday, Luke!!  Five years old!  Luke is really excited about his birthday this year.  He has been doing really great overall (knock on wood!).  He hasn’t had a visible seizure since July.  We’ve even started weaning down two of his medicines.  As we’ve been coming down on them, his whole personality is changing.  He is becoming far more outgoing.  He has been walking up to complete strangers and talking to them.  I even got lectured by a man in Wal Mart after Luke started chatting with him…if he only knew how huge it was for Luke to talk to him and use a volume that the man even heard him!  It makes me a little nervous as we decrease medicine but also very excited.  His epilepsy doctor would like to get him down to two and hopefully eventually to one! 
Luke's new bike!

We’ve been struggling with potty training for quite a while now.  Luke is able to stay dry for really long periods of time but he does not tell us when he needs to use the restroom.  Unless someone remembers to ask him on a regular basis if he has to go to the restroom (and usually force him to go), then he’ll eventually wet himself.  On the weekends and when he’s with his Grandma Beth, he’s in underwear 100% of the time with little to no accidents.  Soooo since he is turning the big  ‘Oh-5’ tomorrow, we’re going to go ahead and start sending him to school in underwear.  He’s on spring break right now so he’ll be at our daycare this week.  At his preschool, he’s been started on a potty chart.  For some reason he will not use the restroom there. If I take him to school, he will, but he will not use the restroom for his teachers. He stays dry the entire time he is there so I am not sure what is going on…little mystery man! I don’t know why he’s not telling people when he has to go when he is clearly able to stay dry for long periods. 

Luke is officially registered for kindergarten!  We had his formal IEP/transition meeting several weeks ago.  I was so nervous about it but I feel like it went ok.  Luke has really been struggling with fine motor skills for a while now.  We were really hoping to get his occupational therapy minutes increased in the school setting. Right now, we are able to take him for 120 extra minutes a week to private occupational therapy.  I don’t know if he’ll be able to tolerate that next year since he’ll be in school full days.  We were not able to get his school OT minutes increased which is really disappointing.  They’ve assured us that they have several plans in place to help him in this area.  He will also have someone with him at all times to make sure he is where he is supposed to be and safe.  We were also worried because he still doesn’t always recognize environmental dangers such as stairs and uneven surfaces.  And of course we are concerned about the possibility of his seizures vamping up.  They’re so hard to notice!  It will be nice to make sure there is someone with him at all times that is able to administer his seizure medication if needed – hopefully not!  He’ll have a lot of therapy minutes but also quite a bit of time in the regular kindergarten setting.  I don’t know what the best fit is for Luke but we really want him to try.  I feel like there is a good plan in place and it’s a great place to start. 
We love bike riding - we finally found an option for Luke to ride the tag along bike.

Since before Ben was born, our family has worked with Parkway’s Parents as Teachers program.  Our parent educator, Lori, came out to visit with Dan and me while I was pregnant with Ben to talk about early development. When we told her about Luke’s brain, she immediately jumped in to help.  She has been an active member of team Luke from the beginning.  She has found resources and websites and just offered her personal support through the last five years.  She recently has gone on to another job within Parkway and we’re really happy with her.  She was still working with Luke on a regular basis due to his special needs.  She would not have been working with him past five so we were fortunate to have her up until the end!  Here is a photo of Luke and Lori at her last visit.  We miss her already, as we miss so many of the others who have been there for us and helped make Luke as successful as he is. 
In other hopefully exciting news, we have recently learned about a watch called an Embrace.  This watch is designed to detect seizures even when the seizure is not primarily movement.  It works through some kind of smart sensors that detect physiological signals and will be able to send an alert to a smartphone or ipad.  Since Luke’s seizures got so bad last winter/spring, someone has slept with Luke every night.  We do not know at what point we would be comfortable taking a deep breath, hoping for the best and letting him sleep on his own. This watch is not going to be our savior.  We know that. But at the very least it will hopefully give us a little peace of mind.  Quite honestly, I hope we don’t know for a very long time (if ever!) if it really works well.  I hope and pray Luke never tests it but if he does, I sure hope it works!  Keep your fingers crossed!  It ships in July!! 

Overall our sweet leprechaun has been doing great.  So great!  He’s reading a ton of words.  He’s getting faster and stronger.  He’s talking a ton and is obsessed with knock knock jokes. His teachers at his daycare, Lakeside, have been working hard to teach him a variety of jokes! 

I feel like five is a huge milestone.  I reread our first post and am overwhelmed by the emotions I was feeling then…continue to feel now.  As I browsed through our journey I am truly constantly reminded how much support and love we have felt over the past five years.  As time goes on, we continue to be blessed with fabulous family, friends, teachers, and therapists.  We are so lucky to have you all in our lives.  Happy St. Patrick’s day and of course, Happy, happy birthday to our sweet Lucky Luke (click here to see a little hodgepodge o' silliness!)!