Rough patch...time for some blogging therapy!

I haven't been wanting to write this post.  I just loved being able to be so positive about Dray and I was loving that feeling and have not wanted it to end!!  But...it has...and I have had some rough days and today was a low point for me.

Where to start...so, back in June we did an EEG.  I was so relaxed about it and felt like Dray had been making such great progress.  Dr. Chez's assistant called with the results and I was completely unprepared to hear that there were seizure spikes again.  After almost TWO YEARS of seizure free!!  I could NOT even bear to hear it.  I was pretty much a mess and immediately emailed Dr. Chez with my questions and concerns.  Being the attentive doctor that he is, he responded back quickly, and reassured me that this wasn't what we saw in the past.  I had in appointment set in August for us to see him, so we would change his meds and see how an EEG looked in August.  Here I was just yesterday thinking that I would be able to take my son off all his medications (which you need to have a 7 year old with at least 7 different pills and liquids to take twice a day to appreciate what I'm saying), and now we are adding MORE!  Plus, the worst part, that this will continue to hang over us, and we are NOT out of the woods with LKS.  We are still very much fighting this battle.

So, I'll cut to the chase.  We went to our appointment and Dr. Chez did an EEG in his office.  Dray was NOT asleep, but he still wanted to see and compare EEG's from his last.  He said that he sees what he called, a benign seizure spike in the right temporal lobe.  So, benign...should be fine?  We don't know for sure.  More EEG's to keep an eye on it.  It could turn into something more than benign.  What you are looking for is the spike and wave pattern that is almost constant during their sleep.  Which he isn't seeing, so that part is good.

So, back to today.  The past few weeks Dray's personality has taken a different course.  He is such a personable and social little guy.  But, lately he has been much more withdrawn and stays to himself.  He seems to understand okay, but his sentence structure has been terrible lately.  A lot of times I have a hard time understanding him.  But, the worst is his behaviors.  He is very irritable and extremely frustrated.  He instantly is frustrated and that instantly turns right into yelling and hitting.  Especially in the mornings.  Why mornings?  He's not a morning person, but his behavior in the morning goes way beyond not being a morning person.  He is just mean...and what I find most irritating is unresponsive.  So, this morning he was supposed to go play soccer.  Which is NOT a good sport for him.  Too much happening at one time and Dray's reaction time to the world around him is typically a few seconds off from the normal child.  Okay....sometimes more than just a few seconds.  But, he was playing on the same team as his sister, Kate.  Kate is a go getter and really focused.  This was frustrating for Dray.  He did NOT like her to be better or to have the ball and he not have the ball.  He spent the game pushing her and hitting her.  Todd took him right out.  Which lead to him hitting and screaming.  Him getting into trouble is only the beginning...everything escalates after that.  EVERYTHING!!  He has zero control over his anger.  He was in so much trouble.  He can be angry, embarrassed, sad, shy and it doesn't matter any feelings he can't deal with or cannot find a way to vent...it ends with hitting and/or screaming.

This is difficult for me to watch because I know how frustrated he must be.  Having a brain that just doesn't connect with anything else in your body and not being able to articulate and explain what you are feeling...I DO feel for him.  But, as a parent you know you have to help him articulate and vent in an appropriate way.  I just haven't exactly figured that part out yet...any suggestions out there?  I'm wide open for help on this.  These episodes happen almost daily and it is tiring!!  So, then I was cleaning and came across his test results from last May from the school district's speech pathologist.  Those scores depressed me...he scored so low still.  I feel like even with tons of progress we are still just chipping away at a huge problem.  He is still so far behind and it feels like we are basically where we started some days because he just lags behind so much.  I want to scream!!  I honestly don't know what more I can do.  Also, being SO far behind in language, when do you catch up?  Or, at least get to a point where people don't notice your handicap?  It feels insurmountable right now and I'm really having a hard time accepting that he may possible never have normal speech.  I know it won't happen over night, but it feels like it he is so far away it may never happen.

I'm really using this post as therapy and venting.  It's been a challenging few months for me.  I usually stay pretty calm and look at the facts and logically think things through.  But, this whole LKS thing really brings out some serious anxiety, and quite frankly, scares me to death.  To have a son that is SO close to being normal in so many ways.  But, in that same breath of saying that...he still has mountains to overcome for his future.   He looks like a normal boy and makes faces and in most situations behaves like a normal kid.  But, he is handicapped.  He is academically impaired, socially awkward, physically uncoordinated, and completely unfocused.  He acts more like a 5 year old than a 7 year old.  All of this and he has moments of maturity, brilliance, keen intellect, and can be so fun and the  life of the party.  Which part of him will win over in the end?  The unknown sends me into a whirlwind of emotions and today the fear has won me over.  All of the worst possible scenarios come to my mind and it makes me sick for my sweet little guy that started just like any other child.  I keep a lot of baby pictures of him around because I long for those days back when his life held such hope and promise for a great future.  Not even anything spectacular...just a normal life.  Normal.  I know is subjective, but for me it has taken on a new meaning.  It really is nothing spectacular...normal means friends, socializing,having a talent that comes easier to you, doing good in some subjects and struggling with others, but being capable of overcoming, going to college, getting a job or trade, and having a family.  Are these things possible for Dray?  I work and push everyday so that these things can be his and will be possible to attain.  Feels like I'm trying to move a mountain some days...I'm exhausted!!!

I'm done venting and I love my boy...that's it.  In the end, that really is it.  So, the rest I put in God's hands and have faith that he will guide me as a parent and help my little boy to overcome.  So, excuse my rambling because I have to do it some times to get through this!! Thank you for allowing me that :)

Updates on our little bear...

This is Dray with his AMAZING neurologist, Dr. Chez. Words cannot express enough gratitude to this man! He is the most caring, thoughtful, knowledgeable, loving, and definitely most determined doctor I could have found for my son. I remember feeling so hopeless as far as medical treatments, because doctors here in Utah had made me feel that there was NOTHING left for him. One doctor said, "what would you like to do.....?" and I literally mean there was just an open end to that question. He basically was telling me he had nothing and I just could tell him what to prescribe and he would do it. But, that is never true! If I have one piece of advice to give to a parent who has been searching and hasn't found relief from this form of epilepsy, I would say do NOT give up! You need to change course get a new opinion... you will find the answer. Dr. Chez from day one was absolutely determined to find the answer for Dray. He was meticulous, asked me lots of questions to really get to know Dray personally, and let me talk and ask as many questions as I desired. He is ALWAYS so responsive...couldn't be more grateful....can I say that again, I probably could a few more times and still not say it enough!!

So, Dray is doing well, he is progressing like crazy. Right now we have several concerns. It's deciding which concerns to battle the most aggressively. We are always trying new things to help him with his speech. At this point it's learning the correct words for everything, distinguishing his vowel sounds better, understanding his more complex world, following more complex instructions, being able to socialize with other kids, and being able to keep up with school work. That all sounds like a lot when I write it down. But, I'm just so grateful that he CAN communicate so effectively enough to get by and that he CAN do his school work so well. Trust me...it's a long road to catching up with other kids his age, but communicating with him now, versus 2 years ago is night and day. I will try to put up a video of him talking soon. I keep forgetting to put it on. But, it will give you a good idea of where he is at and you will definitely see the deficits in speech. However, just being able to have a normal flow of conversation, for the most part, is a miracle everyday for our family. I try not to take that for granted.

So here are the things we do to help him progress even more:

With school he goes to a private school that uses ASL along with speech in class. He has an aid to work with him one on one. I am also getting him a tutor once a week to give him even more personal attention with school work. He does well in most subjects. He just has a really hard time with attention/focus and has terrible hand writing. He is not able to do things with the other kids like memorizing poems/songs and he struggles like crazy to with counting...weird. He knows it, but the memory part of counting is where things get ugly for him. He does so much better if he signs it, but is a stinker about that :(

He has 1.5 hours of speech each week. Working on mostly discriminating sounds (earobics on a computer), and also still understanding concepts (first, second, before, after, etc).

He has a music class. Which I did NOT have high expectations for, but he has done amazingly well. He makes Herculean efforts to sing songs and is able to do the more simple melodies. He is probably at least a word behind in every song. I mostly did it for him to practice with pitch and sound recognition, but he is doing amazing with understanding music theory and recognizing different patterns in music.

He takes zarontin, depakote, L-carnosine, and namenda. Thank goodness Dray takes pills now...that's all I can say for that!! He also has a patch for his ADD. It has been helpful for school.

I hope any of this is helpful. I think if I can say one last thing that breaks my heart for him...is his inability to have close friendships. I really could use some good advice, of any kind, on how to deal with that aspect of his life. I really don't know how to help him. I just keep hoping that his speech will catch up and at this point I need to have more patience!! But, that's just part of parenting, right?