Tuesday, June 23, 2015

Summer 2015!!!

The end of the school year has come and gone...the end of preschool.  It seems like such a short time ago I was anxiously awaiting our first big IEP.  Our first big step into the school world.  Now over two years have gone by.  It's been good for him - for all of us. 

Nurse Leah, Ms. Birner, Mrs. Walker
Mrs. Mayer & Luke
Luke's social interaction is rapidly increasing.  It's still not typical but showing steady improvement.  His teacher told me that he increased in all of his social goal areas.  I have seen him talking to and interacting more with other children.  He has been going to kindergarten play dates that are set up by the school.  Mostly he kind of runs around and does his own thing.  But at the last one, he talked to and played with a sweet little boy for a long time and even cried when we left.  He asked about the little boy as soon as he woke up the next day.  It's been really exciting to see him start to even care about playing with other kids. 

When I talked to Luke's current teacher about his progress recently she said she thinks he's ready for kindergarten.  They've worked really hard with him but she said that he's ready for this next step.  I feel like he is...but I'm still so nervous.  But I guess I'm pretty nervous before each big step....every parent is! Luke has grown a lot with his teachers the past two years.  We've also had a lot of hand holding by his nurse, Nurse Leah.  She only works with the early childhood kids so we are moving on to new teachers, new therapists, new nurse....EEEK.  

Exciting stuff...Luke is learning to write his name!!!  He's been doing pretty good with hand over hand assistance but the other day he just picked up a marker and did this independently.  It's so fun to see such great progress! 
All. By. Himself!!!!

His seizures have been pretty under control (as usual...knock on wood, please!).  We had a little hiccup a few months ago when a few came completely out of the blue.   Otherwise it's been pretty under control.  We've gone over a year since his last big status seizure.  I hope we can make it a LOT longer than that....maybe forever!  That's not too much to ask, right!  We are continuing to work with his epilepsy doctor to decrease one of his medications and get him down to two and hopefully eventually to one.  As we decrease this medicine we can see him changing - becoming chattier and sillier and more outgoing.  I'm really hoping that we can safely have him down to two by the time he goes into kindergarten. 

First hour into an almost 3 hour
neurologist appointment with
both boys...oy!  
I try not to worry about it too much. One of us still sleeps with him every night and at this point the plan is to continue that until he can tell us he is having/has had a seizure...So maybe forever??? Ha!  I hope not!  When he had some unprompted ones in March, he was able to tell us he felt wobbly which I thought was progress.  It's really, really hard to make the call to STOP sleeping with him, though, since we're always afraid of missing something on the monitor.  We've ordered a device called the Embrace which is supposed to be able to alert us to his seizures but there has been a delay in distribution. 

Reading stories together.
This summer we're settling down...We're not sending him to summer school.  We're decreasing therapy (decreasing, not stopping!).  I don't know if it's the right choice but I feel like the whole family could use a little break from everything.  I'm hoping to do lots of play dates with friends that I never get to see during the school year.  I think that's the best therapy for all of us! 



5 comments:

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  2. Our son has same disorder, please call us at 217 853 0839

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  3. Hello everyone. My name is Ray; I am a Lieutenant in the Navy deployed to the Persian Gulf. I have been in the Navy for 15 years and never had any medical challenge except minor headache that results from training which pain killers took care of. My first seizure occurred 3 years ago, although I lost total consciousness during occurrence and never knew what happened, but my roommate witnessed everything. I learnt the entire episode when I regained myself in the military ER. I was examined and the Navy Doctor told me it was Tonic-clonic seizure, which treatment drug was immediately recommended for me. I was placed on medical leave for proper treatment, and Depakene was given to me as a treatment measure. I also took various AED’s medications which caused me side effects. I love my job, and do not want to be discharged on medical ground. As a result, I went in search for more knowledge on seizure as well as its cure. When I first read about seizures and its causes, I was not surprised because I have had various head inquires resulting from training, but I never knew it’ll be complicated and result to seizures.

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