My husband, Dan and I have 2 sons. Ben is 6 years old. Luke was born March 17, 2010. Luke has a rare genetic condition MPPH (Megalencephaly Polymicrogyria Polydactyly Hydrocephalus) Syndrome and epilepsy. This blog is to help keep friends and family updated and also to hopefully find other parents/families who have experience with polymicrogyria and MPPH.
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!)!