Dray is almost 12!! I can't believe it!!

Hello everyone!  Can you believe I have documented Dray and our family's life with Landau Kleffner Syndrome for almost 8 years now, crazy!  Dray was diagnosed at age 4 and I have tried my best to keep a record of every therapy, intervention, medication, and tests we have had over all of these years.  I hope that all of this has been useful to someone out there.  I tried my best to give hope, but not sugar coat LKS.  Thank you for the comments of encouragement, adults who have had LKS and their stories of success, and especially the parents of children with LKS reaching out to me for help and prayers for their kids as well.

Dray just finished 5th grade at a charter school this year.  Here's this year in a nutshell:  tested average in everything except for abstract language and reading comprehension (both very difficult language areas for him to overcome) and he was also below average in his short term memory, got MOSTLY all A's (a C in science - more on that later), made new friends,  was bullied quite a bit too, got his brown belt in karate, and played basketball (his first team sport since he was a little kid).  

So, in school he does well when he has someone telling him what to do step by step and then enforcing that he gets it done.  If I know about a project or test, I can help him organize it and tell him how to put it together or help him to study.  BUT, he has serious struggles with remembering to tell me just about anything.  I have to have constant communication with teachers or else he won't tell me there is a book report or test.  So, in science, he NEVER told me about tests.  As a result, he did not do so well.  Obviously, if Dray doesn't study hard...he will not do well.  His tutor stays on top of math, grammar, and reading comprehension.  I make sure he does all projects, at home reading on his own, and I study with him on all other tests.  Obviously, science was not a strength for me.  I have determined that sometimes you have to pick your battles though, and I chose to focus elsewhere, obviously :/

Well, the other day Dray turned 12.  This has been bittersweet for me.  I think a parent of any child, average or special needs, laments their baby growing up.  Remembering the innocence of their childhood, how carefree they were, and how they just adored their mom and dad.  BUT, for me it's more than that.  Every year that goes by he understands more and more that he's different.  He sees that other kids understand more, converse better, joke around in a different way, and can organize their life in such a way that they get praise from adults and peers for both simple accomplishments and also now for big accomplishments as well.  He has been telling me how hard his life is because he had LKS as a child.  He tells me that everyone thinks he is bad and he is always in trouble.  When I hear him say that I feel awful, because I feel like I don't give him a break.  I need to be more loving, accepting, and lenient of his weaknesses.  I probably could learn to do that better and I strongly believe in reevaluating and trying to see myself objectively.  I want to change, evolve, and do better.  But, there is always that side of me that feels that I should not let him make excuses for not being responsible, respectful, and a hard worker.  I feel strongly that he can try better to remember and stay on task and that I can demand that of him (within reason).  I absolutely want to see him overcome and have faith that he can.  Tonight I tried to have this conversation with him (one of many) and tried to keep the conversation concise, simple, and to the point.  I left not feeling confident that he understood, or felt any drive to do better.  I was frustrated.  I picked up my phone and saw a new email from a mother of a daughter, in the beginnings of this scary disease, and she poured her heart out about her sweet little girl.   She told me she had read this blog and appreciated the truth and the hope that it brought her.  But, she also told me about sitting over her little girl at night and crying and praying that she would be ok.  Now...these nights I remember, because I had many of these sleepless nights of tears and prayers for my little boy.  This email brought me to tears because it brought many overflowing emotions of remembering those scary beginnings, remembering the worst part of it all - the unknown of any outcomes, and also bringing me back to this moment right now and the reality of it.  That I have a 12 year old boy that has had a very scary diagnosis, and here he is alive, healthy, loving, active, learning, growing, speaking to me, and a beautiful part of my life.  I need to be more thankful to be where I am and I will always try my very best to remember all of those mothers and fathers who are in the scary beginnings, the unknown territory with no answers yet, and those who's children haven't had such a great outcome.  They are the reason I write and have put all of these things we have experienced out there for everyone to see, good and bad.  

So, I hope I have done that!!  In the end...we love these children with all of our heart and soul.  They are precious.  Just a last few updates on what we are doing righy now - as an end to this post ;)  Dray still needs speech therapy to help him understand sarcasm and story telling/comprehension, and following conversations.  He takes Ritalin for ADHD.  Judge if you will, but we must as parents make tough choices.  I talked to as many doctors as I could to make the best decision possible.  Dray's neurologist, several pediatricians, and his speech pathologist have all told me that it is in his best interest to have him be able to focus, not stick out in class, have less frustration from him, his classmates, and teachers.  So...there it is!  We have started in on school classes for next year on navigating 6th grade and learning to socialize better.  Also, he has 2 hours of tutoring Monday-Friday.  I always hope I'm doing enough to help him...it never feels like I can give him enough!!  

Dray driving on his 12th birthday with Grandpa!!  No worries...it's in a big, empty parking lot.  He is a good driver for a 12 year old.  We love Dray so very much and I love seeing him in his element (behind a wheel)!

Has it been THREE years?!? Oh dear...it has!!!

Hey everyone,  it is definitely time for a Dray update.  I won't be blogging about him as much as I have in the past.  Here is why:  1.  We don't have as many medical treatments and interventions as we used to.  He has been seizure free for 4 years!! 2.  He is doing so much better and I have less to complain about, and this was therapy for dealing with my stress ;) 3.  This blog was intended to be a long-term case study, for others to see how Landau-Kleffner Syndrome has effected Dray's life for the long haul.  I would have LOVED to have read about a child's life over the span of many years of dealing with this disease.  It would have brought me great joy.  BUT, I still shouldn't have waited this long to write.  Life is busy, but I'll try to do better.

Let's talk about school first.  This is the most difficult aspect of for an LKS child, for us it is.  Last year (3rd grade for the 2014-2015 school year) he went to a small group class within the public school system.  We had gone to a private school, but it felt like they were wanting academic achieving kids to be in the classes more, and honestly he wasn't loving it.  So, we looked at all the options and felt this would be a good fit and much closer to us.  He had the BEST most loving teacher.  It was a class of about 18 kids (not as small group as I would have liked), and they all had learning disabilities.  There were some great aspects of this decision such as:  great for him socially, awesome teacher, lots of aids in the class, very flexible with us on his individual tutoring, and like I mentioned closer to home.  The problematic areas were that he was in a class that had kids with much more severe disabilities than his own.  He was by far the furthest along and the least impaired of all the kids.  Therefore, I felt like he wasn't making the progress he could have made if he had just slightly higher expectations on his performance.  Keep in mind...you have to know your kid and what they are capable of.  I felt that he could have performed at a higher level.

So, this year we moved to be closer to a new school, a charter school.  This school has him with average peers and with expectations closer to what a child his age should be experiencing (reports, tests, homework being turned in at certain times, etc.), but with some modifications.  They worked with us, after some pushing, to have his tutor pull him out for one on one time.  They also have the kids working on their own level in small groups.  Plus, they still have an extra aid in the classroom.  I'm not going to lie....it has been a BIG leap for him this year, even with the modifications, we have had growing pains.  But, I really believe he needs to be on a path that will teach him the expectations that kids his age are experiencing.  His biggest struggles are the tests, feeling like a bit of an outsider (more on that later), and not telling me that he HAS homework, ugh!!!  But, I keep telling myself that he needs these life lessons and in the end it will help him as he grows older.  He is on grade level for math, reading, writing, and above grade level for spelling.  When I say he is on grade level for reading, I only mean that he can read the words appropriate for his grade level.  He cannot comprehend a lot of what most kids his age are reading.  He has a hard time recounting details from a story, putting them into a timeline that makes sense, understanding intentions and complicated plots, and answering complex questions about a long story or novel.  We work on that EVERYDAY.  He reads 3 or 4 stories and has to do all of the above for each of the stories.  They are not even long, but he struggles.  So, his inability to conquer this skill causes him to suffer on taking tests with long questions or stories, reading from a history book or other subjects and understanding all of the subject matter.  It is a huge struggle.

Socially, this has been a tough year too, but I knew that going into this.  I expected it and I knew I couldn't shield him from that forever.  I'm like every parent...I want to turn into a mama bear and attack any kid that dares to hurt Dray when I see him as a walking miracle that he can even be in the same classroom as them.  But, kids are kids, and I have to step back a bit ( a bit) and let them all learn.  Not to say I don't get involved at all, because I do.  But, he really believes he I shouldn't and wants to deal with it on his own.  There has been boys not treating him kindly and it breaks my heart.  He tells me, "Mom, I'm 10 now, and I can deal with it on my own." Which, I try to respect within reason.  But, I secretly talk to to his teacher frequently about certain kids to monitor the situation, so that I know when I really need to step in and get involved.  He tends to like girls as friends better.  I think they are kinder to him mainly because he is a cute kid and really knows how to flirt (for reals, he is a charmer), and he doesn't play sports and they are doing activities that he can do.  I knew that not playing sports would be hard for him as a boy.  He just couldn't play anything for such a long time because he was slow and sluggish, didn't understand what was going on, and he didn't enjoy it at all.  Which is difficult because that's a huge way that boys socialize.  It's hard because he doesn't have close friends that he can hang out with and really bond with.  We try to keep him involved in activities so that he feels like he is involved with other kids, but it isn't the same as for typical kids because they invite each other over and really form strong attachments.  He just doesn't have that.  On the other hand, he doesn't complain too much and doesn't make a big deal out of it.  So, we try to just do things with him and enjoy that he is with us.

As for hobbies he has been trying new things this year.  Last year he begged me to do karate, which I resisted.  We finally did it, and it has been the best thing ever!!!  His grades went way up in school...by leaps and bounds!!  He really enjoys it.  So, I should have listened to him earlier.  He had just worked so hard at swimming and I was just starting to see the work paying off, plus I pictured him in a quiet karate class with him being crazy, not understanding, and not paying attention.  OR, him quitting swim and trying karate and then 2 weeks later wanting to quit that too.  I hate that.  But, he is still doing that 5 hours a week.  He also goes to cross fit now for 1.5 hour per week.  We also got him a sports coach that works one on one with him on sports skills.  I know he'll never be really good at sports, but I at least want him to learn the basics and be able to be involved in what other boys are doing, if he should want that.  He asked to learn, so this was the best I could come up with to give him that chance.  He's picking it up and we will try some team sports next year for fun.

He is only on Namenda and Daytrana (for ADD).  We went a long time with out the ADD meds, but his neurologist and his pediatrician both recommended it would be better for him in all ways of life.  Since everything Dr. Chez and his pediatrician has said has been sound and good advice, I listen.  This too has proved to be a good decision.  He doesn't like taking his medicine, but it makes a huge difference in his, ours, and everyone else's frustration levels.  He is like a fly when he's off of it.  Bouncing around from one thing to another, no concentration, no focus, and you can't even really have a conversation with him!!!  So, I'm not sure why people resist that (we all make our own decisions for our kids), but for us it helps in every aspect.  He only has speech at school for 1 hour/week and he sees a literacy specialist every Friday for an hour.  She is amazing!!!  She helps him make sense of stories, characters, plots, vocabulary through acting out and fun activities and understanding his own life stories.  They do the most amazing things!!!  She puts together stories of topics he loves for him to do diagram pictures, acting/plays, and creative writing, chemistry shows, rockets, makes movies, the list goes on an on.  But, she makes it fun, interactive, hands on, and educational.  She's amazing, beyond amazing!!  We are blessed with some pretty amazing people in his life!

I am extremely proud of my son.  I have 2 daughters besides Dray that are extremely high achieving in academics and in their outside activities.  I absolutely hold Dray in the same high regard as I do with my girls, if not even more.  He blows me away almost everyday with his wit, humor, abilities, and tenacity.  He complains about a lot (he is normal), but never about himself.  He has so much confidence in himself, it is unbelievable at times that he never doubts his ability to learn something new, talk to someone new, and to just be himself even if others don't respond well to him all the time. His life is full of challenges, but in the big picture he likes himself.  Sometimes I think he is too confident, and he may be borderline clueless.  He tells me quite often that he doesn't need a tutor, he is way too smart for that, and that he intends to skip a grade.  What?!?  It's troubling.  But, I love that he sees himself that way.  What a blessing.  He is a blessing....I wish every parent could have the lessons that I have been taught in my time of parenting Dray.  I love him dearly!!!

Long time, no blog, but much to write about...enjoy!!

I have so much to say....why do I wait so long to blog?  Easy!!!  Life doesn't slow down, especially when it comes to Dray!  Where do I start?

His last EEG results is a good place to begin.  We went to Sacramento in April to see Dr. Chez.  We visited overnight at the hospital to do our EEG there.  It can be hard coordinating between an out of area doctor and our hospital here.  So, we opted to just do it all there.  We tried new medications because we HATE keppra (and that's an understatement).  I tried it again for Dr. Chez, but for all the reasons I hated it, we took him off.  Life has been better with out keppra!!  He is now on 12.5 mg clobazam at night, 10 mg Revlamid every other day (a drug that is supposed to have similar effects as steroids, but with out the nasty side effects), and a lot of depakote (can't remember exactly how much).

So, the results were improved, but still a slight right temporal seizure spike that is NOT constant and very sporadic.  Dr. Chez called it a benign seizure that can often be seen in normal kids.  His only concern is that it will turn into the constant seizure spikes of Landau-Kleffner or ESES.  So, we have to keep Dray on his meds...ugh!  He was ALMOST two years seizure free when that little right temporal bugger showed up and now we have to keep him on meds.  Breaks my heart.  I just sometimes wonder what he would be like if he was on no medications.  Would he have more of an attention span, more energy, would he be happier?  Who knows...and I shouldn't bother thinking about it.  

So...we will go back to Sacramento at the end of August, and check again.  You have to stay on top of it.  Todd and I always say that we are just fighting the good fight until he hits puberty....so there are many more years of battle to come. 

This fall will be 3 years with an almost cleared EEG.  His language is improving, but it is slow.  It's like he is close and sometimes you may not notice all the problems because he talks pretty freely and sometimes won't be quiet....but, there are BIG holes everywhere in his language.  I would say his biggest problems are word finding (he tends to stick to words he is very familiar with), abstract ideas/concepts, memory, following complex instructions, story telling, and catching on and understanding the "small talk" and casual language that other kids engage in.  

(Dray's self portraits)

Which leads to my biggest challenge this summer...SCHOOL....UGH again!!!  Up until this last year he has been in the right place and had the all the right supports to get by.  He has done ok, not great, but ok.  He had a teacher fluent in ASL and his own class room aid fluent in ASL and there just to help him.  First grade was a challenge, and I think it changed him, not in a good way.  He has started saying he's dumb this year.  Which is hard to hear your child say.  We try to explain his situation, so that he can understand why he struggles, but it's so frustrating to him nonetheless.  So, we are off on a journey to find new supports, tutors, and a new school situation, if necessary.  He was at a private school and We have been looking into EVERYTHING for next year.  This is what he needs:  small class size, an aid, lots of visual aids/supports, explicit instruction and one on one tutoring/help.  The school district might be able to offer some of this, but of course, in a different city.  We just finished a bunch of testing (so much fun) to get his IEP and find out what services they can give him. They have already told me he can't have an aid.  I have found two private schools that would work.  Both of them I would hire an aid to go to school with him.  Luckily, our state offers a special needs scholarship to both of these private schools.  We have found a reading recovery tutor to help him progress in reading and writing.  He is a fairly good reader, but his fluency is terrible, and he has holes in his understanding of syntax.  His writing is terrible. We also hired a math tutor because he struggles to keep up, and again, there are so many holes in his understanding of math.  Like he can do some addition/subtraction, but cannot count to 100 or county by 5's.  There are lots of problems like this throughout his schooling.  

So let's do some math right now:  how much money do you spend on two different tutors, occupational therapy, speech therapy, hospital stays, medications, and a neurologist that is a plane ride away?  You do NOT want to know.  Let's just pray that we don't have to pay for private school this next year...yikes!! Okay, I'll throw in another math problem...for fun.  How many hours do I spend at all of these appointments?  Answer:  at least 10 hours a week of appointments.  Oh. my. goodness.  When I say that out loud it seems crazy!!  But, knowing that your son with serious disadvantages, maybe just maybe might have a chance at a real life, if you help him enough... that is priceless!!


On a positive note.  Dray swam in a meet the other day.  He has some struggles with coordination, stamina, and focus.  But, with all that...he did SO good!!  He won 2nd place in breast stroke, 3rd in back stroke, and 1st in free style.  Yay!!!  He was so proud of himself.  Just trying to keep it positive!!

Small update, but much more to come....I know you are all excited!!

Sorry for my absence.  There has been a lot going on and I hope I leave nothing out.  We have had a couple of EEG's since my last post.  I never reported on these EEG's because I waited a long time for Dr. Chez to give me an answer as to what the findings were....so, the results were NOT good, and NOT bad.  This sounds like an answer my dad would always give me, kind of frustrating not to be in the black or white.  We are in a gray area for sure.

Dr. Chez found a seizure spike starting up again in the right temporal lobe.  He called it benign, but are there benign seizures?  They all sound bad to me.  He related to me that even normal kids can have these types of seizure spikes sometimes.  BUT, he didn't like it because it could lead to a full blown LKS non stop spike and wave pattern that we had before the ACTH steroid treatment.  So, he took Dray off of Zarontin (ethosuximide) and put him on keppra and vimpat along with the depakote he already takes.

I do NOT like, no I detest keppra.  Evil, nasty drug that changes your child into a daydreamy, anger filled, moody, nasty child.  He had tried keppra in the past and I hated and it and I still hate it.  So, we suffered with that until the his NEXT EEG.  Nothing changed, so now we changed meds again just recently.  We are trying clobazam (onfi) and a drug called Revlamid.  Revlamid has a similar effect as the steroids by suppressing your immune system, but with out the awful side effects.  If you want to know how bad those side effects were....you may read back in the history of the blog and see just how bad it can be.  I don't want to sound ungrateful because steroids have saved his life, but it was a rough road that I NEVER want to go down again.  We will go to California to see Dr. Chez and do an EEG again in February.  I will report on how that goes with his new medication.

I went to his school's parent teacher conferences today.  I always get so nervous and just sad really when I talk about him with his teachers.  It's so hard for me to see him struggle at EVERYTHING he attempts in his life.  There are very few things that come easy for him.  Anything involving school is a huge mountain for him to climb.  But, today was a success!!  His teachers know that he has learning problems, but they also praised him for the progress that he has made.  He went from getting 1 or 2 out of 20 spelling words correct to only missing 3 or 4.  These spelling words are not easy words either...I was blown away.  His writing and spelling have improved tremendously.  His biggest issue is math...MATH?!?  Who would have thought??  I just automatically assumed that words and reading would be the thorn in his side, but it's math.  In general though it is hard for him to think abstractly.  His memory is horrific and so it is hard to teach how to solve and memorize math problems, concepts, and facts.  All in all today was a relief.  I just wish that he could have friends.  He is friendly with kids, but they don't really reach out to him and include him like with other kids.  But, Dray has a gift...our Heavenly Father gave Dray a strong sense of self - he likes himself.  He likes himself and he is okay with who he is.  He does every now and again say, "I have a stupid brain", and it breaks my heart.  But, when it comes to being included or rejected....he doesn't care.  He is fine playing alone, and he rarely complains about all that he has to endure.  For the most part he accepts what is going on with him and his circumstances and just goes about his life as if it was the same as any other.  I know this doesn't have to be the case because his sister is the opposite of this!!!  So, Dray has been given a special gift and amazes me daily!!

We still have our struggles.  His communication is much below his age level, his behavior can be immature, his motor skills are terrible, and his attention span is very short.  Hopefully we can find every means necessary to help him through these problems.  Everyday is filled with me trying to figure out how to help him...it can feel very overwhelming!!  I know I could have it much worse...so I am grateful, but I also know that if I do everything I can it could mean the difference between a normal life or a life of a disabled person.  He is so close I can't stop...well, and I won't stop!!  How could any parent, right?

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?

I wish I could scream it from the mountain... Seizure Free for One Year!!

What an amazing year this has been. I remember at the end of the summer, 2010, thinking... what are we going to do? Our doctor in Utah retired and the doctor they turned us over to had no real direction for us. I recall his words very clearly, "what do you want to do?". It was like he just wanted me to tell him to write a prescription for something so he could be done dealing with it. But, the amazing people that come into your life just at the right moment, through prayer and a burning desire in our hearts to never give up. My good friend, Kelly, who's son has recovered from LKS told me about Dr. Chez. She had a good connection to him, and best of all, I had his direct email. So, I emailed him and about an hour later he responded to the email and told me to bring Dray to CA. He saw Dray only just a few weeks after I contacted him. You would have to have dealt with specialists, especially highly sought out specialists, to truly appreciate how quickly he saw Dray. He is the most amazing doctor, not just because of his expertise which is impressive, but mostly because of his caring demeanor and determination to find answers. Dr. Chez and many prayers are the reason we are here at this moment!

All of that being said... I have to share the emotions that went along with Dray's EEG that he had on October 7th. Todd usually goes with Dray to the hospital, it is much easier for him to do it, but he ALWAYS texts me pictures of his EEG. Well, Todd texted me a picture, and it did not look like the nice calm straighter lines of previous EEG's. Well, my first reaction was concern. So, I kept comparing to the old pictures, and started to panic. After many tears, because of all of the memories of language loss, and how hard treatments are on his little body... it all flooded back to me. I just lost it. I emailed Dr. Chez the picture (knowing that he needed to see the whole night to know for sure). But, I had to do something. He IMMEDIATELY emailed me back and told me that he thought it still looked good, but needed to look at all of it. Even with his positive words I was so overcome with all of the different emotions that involve Dray: not seeing his progress, watching him lose language again, not being one day closer to leading a normal life, all of the weight gain, watching him suffer with being hugely overweight and having such high blood pressure, all of the tears to find a cure, and I could go on an on... I was just incredibly overcome with how much we had gone through and I realized how fragile and precious his life is to me, and how fragile and precious his current success is. I have to be grateful each day for his progress and not take that for granted.

So, for those who might be reading this for their own child, I wanted to let them know what one year seizure free looks like (for our son). He understands ALMOST everything with out sign. New and unfamiliar words I just need to say very clearly and articulate. He can mimic almost any new word we say to him. He will mimic phrases he hears us say. For more complex explanations I have to use sign, or use very simple words and explanations. His language is much more complex, and vocabulary MUCH larger. He is barely starting to sing songs again, simple songs. His major struggles: telling complex stories and complex sentences, memory, and attention. Even with those issues we could not be more grateful, at least we try to be grateful every moment for where we are now.

Dray's Birthday!

I'm glad Todd wrote the previous post for Dray because he has been silent in this blog... and he is not a bystander in all of this. Todd is very involved. I am the one that is persistent, and always pushing for more answers and more progress, Todd is the calm one that doesn't stress as much, but just shows love and concern for Dray. They have such a neat bond. Todd has to be gone for 6 weeks for instructor pilot training this summer. He was on skype with Todd and said, "Dad, I want to take you out of the computer and snuggle you!" He loves his dad!! This past week Dray has really been communicating so much more effectively. The new words he has added to his vocabulary are coming at an impressive rate. I can hardly believe the words he is picking up and repeating back to me. I have not seen him pick up new words like this since he was probably 3 years old. I know we are not totally in the clear, but if this continues I see such a great future for him.

Dray had his birthday on Friday, July 22nd. Every birthday is a time of reflection for me. On his 4th birthday, just 3 days before, he was diagnosed with LKS. I remember not being able to explain the concept of a birthday to him... he had no idea what was happening, or how old he was, he couldn't understand anything going on around him that day. I couldn't ask him what he wanted for his birthday... he didn't have the words to respond to that question. He could barely speak. But, this year has been awesome. He understands everything, and came to me with a list he had made of the presents he wanted. He could repeat back to me what we were doing for his birthday, who was coming, and he knows how old he is. This is so different than 2 years ago. What a miracle!! Only problem is that he now thinks he is old enough to do everything.... he says, "I'm 6 now, I can stay home by myself, or I can light fireworks...." Oh dear! What a sweet little boy... can you tell we love him so much? He is constantly amazing us, and we can't wait for more!

For those who might be interested... we have kept Dray on Depakote (20 ml daily, split into 2 doses), zarontin (6 ml daily), Namenda (2 ml daily), L-carnosine ( 1,000 mg daily). I know when I talk to other parents with LKS kids I always wonder what their meds are, so that's for those of you who may be reading this for info regarding your own child!

Kerri has made every post on this blog and for a while I have felt like I needed to contribute. Perhaps a father’s perspective about Dray and this experience on our family could benefit someone.

The first thing I want to mention (as Kerri has done) is the amazing people who surround, include, and encourage Dray continually. Doctors, Speech therapists, Nurses and Specialists provide much more than their professional expertise, they deliver a level of care and genuine concern that goes well beyond Dray’s medical needs. Family members from all over the country and some from overseas have included Dray in their prayers, contributed to his trust fund, and many of them have taken the time to learn sign language to help Dray feel welcome. Specifically, I want to acknowledge the Grandparents who are probably Dray’s favorite people on earth. They have had a profound influence on his character and his self-image and continually support Kerri and I on a daily basis to deal with the stresses associated with Dray’s condition. We have also been fortunate to have friends and neighbors who have gone out of their way to include Dray in activities.

Of all the people I’ve mentioned above I believe three people in particular truly shape Dray’s life more than all others… those people are Dray’s two sisters Kate & Elle and Dray’s amazing mother, Kerri.

• Kate (14 months younger than Dray): It is awesome to watch the kids play together because Kate takes the time to sign everything to Dray and then he responds by using words. Both struggle through the process, but both enjoy each other’s company and they really do play well together. Kate is particularly advanced for her age and very mature with how she patiently communicates with Dray. We couldn’t have asked for a better friend for Dray.

Elle (4 years younger than Dray): Elle has an impressive signing vocabulary and she does an awesome job communicating with Dray. Even though Elle pushes Dray’s buttons at times she provides an opportunity for Dray to teach a younger child about things and he really does watch out for her needs.

Kerri: As many of you can tell who read this blog, Kerri is an amazing mom. She has never given up and has chosen to not let this challenge defeat Dray or our family. She has persisted numerous times when we weren’t making progress and her persistence has been CRITICAL for Dray’s advancement. I can’t overemphasize how her persistence and continual efforts to find the best treatments for Dray has made the difference. Kerri has been right so many times on what steps we should take and what we need to do to move forward. I shutter to think about where we would be without her intense involvement.

Shots, doctor’s visits, constant medications, the inability to communicate, and the fear of not understanding what is happening in the world around him have forced Dray to be a “big boy” at a very young age. He has responded brilliantly and continues to move forward in life. Dray is absolutely an amazing boy. With his disability he should have no reason to have confidence to speak with or communicate with anyone, and yet he approaches people without the slightest hesitation and engages people with his huge smile and just starts trying to talk like there is nothing wrong with him. I’m amazed at how fearless he is about life and his level of confidence. His ability to jump into people’s hearts is astonishing.

I was able to take Dray to his latest appointment with Dr. Chez. We took two flights from Salt Lake to Sacramento in the morning and another two in the evening to return home. It is a very long day, but it was a pleasure to be with Dray throughout it all. He made a number of friends throughout the day. Our first flight when we walked on board I turned right to go down the aisle and Dray turned Left and entered the flight deck. He just wanted to say hello to the pilots. When we arrived in Sacramento Dray was able to win the hearts of a couple of Southwest Airlines gate agents and they let him make a Passenger Address in the Terminal, a simple “Hi” rang throughout the building. His appointment with Dr. Chez went very well and it was good to see the level of knowledge Dr. Chez had on Dray’s case. Dray had a fun time playing with other patients while we waited for our appointment. On our first flight home he sat next to a 7-year old girl who was flying alone, amazingly she knew a lot of sign language and chatted with Dray the whole flight. When Dray discovered the girl’s Uncle owned a Ford Mustang he instantly fell in love with her. Before the flight ended Dray asked her if she would give him a hug. The embrace was priceless. While we waited for our last flight of the day Dray made friends with a woman and her dog they entertained each other for about 20 minutes. On our final flight a flight attendant loved Dray so much she gave him a huge bag of airline peanuts. It was his prize trophy for the trip.

Our blessings continue!

We had an EEG for Dray May 18th, but it took so long for us to get the full results back from Dr. Chez, due to USPS issues and Dr. Chez being out of town. But, I was confident he was going to tell us that his EEG was still clear because I saw it and it looked so good. So here we are at almost 9 months of cleared EEG's.... seizure free! Dr. Chez a few months ago had said that when it has been a year we'll see the biggest changes. He is still on the same meds: zarontin, depakote, and namenda. He has cut back on speech therapy from 2 hours per week to 1 hour per week. Melanie, our beloved speech therapist, suggested the cut back. She felt he was doing much better and would benefit as much from just the 1 hour. Still a long road ahead for him...

I have to say that although I'm incredibly grateful each day that we have, for 9 months, conquered this disease I am constantly on a roller coaster of what I think his outcome will be. More times than not I know that if he stays on this course he will be fine in a few years. I know that he will for a very long time, if not all of his life, have learning disabilities. His auditory memory is horrific. He struggles to remember new words he is learning, although this is much better than before, it is still hard for him. A lot of times he can repeat new words, but still with a lot of complex words it takes a few tries or it's just off a little. He really struggles to remember songs, phone numbers, and counting is difficult for him. He does fine if he can sign it, but trying to just say it can be a struggle. Everything takes longer for him and what you think he understands one day can either be forgotten or misunderstood the next day. I think I have to see the much smaller steps he has taken and not get lost in the thinking of how he is different from other kids or how long it takes to understand a concept that is easily understood if your brain is working correctly. But, he is on a good path, and when I look at where he has come from I know that there have been changes for the better and his language and comprehension is ever so slowly coming back to him. Patience with something that comes so easily to all of us and is just a "given " for all children is and will be our challenge to overcome. If I had to choose two words that get me through LKS it would be patience and faith. I need both of those virtues to face this on a daily basis.

I recently read a book titled, "Search for Tomorrow" by Keith Mason. The book was about Colleen Mason, who at the age of 3 lost all of her language due to LKS. I recommend it because this family was an amazing example of NEVER giving up on a child with this condition. Colleen did not speak for 2 years, but they kept searching for answers and solutions, and moved their family anywhere they had to for the best schooling and therapy. This was at a time when LKS was unknown and there were no medications. I look at all of the schools and teachers that we have in place to make Dray's life and recovery as wonderful as possible. Colleen had those same amazing people in her life, and I know this will be a major part of Dray's recovery, just like Colleen. Colleen graduated from college, was an All-American track runner, got married and has 4 kids. These are the things that I want for Dray. Simply... for him to have a family and be able to provide and give his love to them, and receive love back. I am so grateful for all of the people in his life that make this dream of mine even a possibility that I can dream about. I also know that anything is possible with God and I put my faith in Him that He will give Dray all that He needs to overcome and be on the path that God wants him to be on. I just hope that I am aware and prayerful enough to do His will, as a parent, for Dray.

Enjoy our pictures of Disneyland. Dray loved it! What an awesome time we had and we so loved spending time with him and the girls. Great memories!! I wish I could post all of the pictures. I hope to continue to have good news from here on out!

P.S. I get so many great comments from moms of other LKS children. I would LOVE to communicate and share more with you, but I am not the best at responding to comments on the blog. If you would like to email that would be better, and I really would love to share even more! My email is kerrideshler@yaoo.com

Let's just continue to have GRATITUDE!

GRATITUDE is completely what I feel right now. We, of course, ALWAYS have Dray in our prayers and in our fasting. Todd and I pray for him constantly and Kate always prays for Dray to get better. We are seeing so many answers to prayers for Dray. From Kids Village (Dray's school) and what a perfect fit that is for him to actually seeing almost 7 months of cleared EEG's and steady progress in language and comprehension... I am trying to be grateful for ALL of it. Even if it all went away tomorrow. I have to celebrate each success no matter how big or small and I have to minimize the bad. Not to say, ignore it, because you certainly have to address all of the issues and disabilities that LKS brings with it. But, I find that if you make a big deal out of all his problems and issues... you make yourself and your child miserable. I know what needs to be done: special teachers and schools, sign language, being safe and aware of his social situations, extra time explaining simple concepts, medicine, doctors visits, and I could go on and on. The point is that if I sit and make those things the focus then I am a depressed mom.... he doesn't need that... nobody needs that! So, I choose to focus on all of the things that we are succeeding at.

March 11th was another cleared EEG and that was with him off of his steroids completely!! So, let's go through all of the blessings that this news brings: progress with language, weight loss (4 lbs lost), blood pressure stabilizing, so much more energy and smiles, and his social skills increasing. I can't believe how much more energy and how much happier he is with no more steroids. Yay!! Other things can be falling to pieces around me, but Dray getting better makes everything easier to handle. We just got back from California on a trip to visit Dr. Chez. He has put Dray on 2 new things to help with his recovery. I might have mentioned the supplement, L-carnosine, and now a medication called Namenda. Namenda is supposed to help with auditory processing problems. Dr. Chez has done a lot of research on how to get these little brains to heal and recover. So, we do what he tells us. He said that Namenda may cause him to be irritable, but that is the only side effect to look for. So, we'll see how he does on it and hopefully we'll have even one more piece to Dray's recovery. We had a good trip to CA and Dray made so many friends. He wraps people around his finger. The flight attendants just go crazy for him. They invited him to the cockpit to sit in the captain's chair. He LOVED it!! That's an understatement!! The pilot was even fluent in sign language. Dray and I always meet such interesting people on our trips because he is so friendly, smiley, happy, and adorable. People just love him... and Dray just loves them right back! My sweet little Dray Bear... I love him!

Where have I been? Not blogging...

But, I'm back at it now.... finally, I have a moment. We have been busily finishing our basement. Which is a big project in itself, but to add to it, I will be teaching ballet and fitness classes in it. So, there is much preparation, and much time taken away from me and blogging. But, it's nice to sit here and reflect on Dray. I really just love him, and as much heart ache as his life brings, I feel so much joy being able to raise him. I feel victorious when he overcomes the slightest of struggles. He humbles me, makes me more patient, more loving, more sensitive to those struggling, and this list could be endless to the amount of maturing, learning and refining I have gone through because of him. Hopefully, my family is being benefitted by my growth. Although, I am all too aware of how much more I can be doing for him, and I am definitely nowhere near to perfect.

With that being said, we are at a good place right now. He is still VERY heavy and uncomfortable and he is still not quite as chipper as he once was (still edgy and grumpier). But, he is really making gains that are awesome to see. I feel less frustration from him in every area of his life. He is learning in school so much better, communicating so much better, socializing better, and this means the world to us as a family. We went to Sacramento to see Dr. Chez again. We looked at his EEG together there, and it was awesome!! Yay!!!! So, I always ask the same question, "If we can't keep him on steroids.... how do you keep the seizures under control after he is off the steroids?" He seemed confident that with how much we have reduced his dosage and his EEG staying clear that he will be able to remain seizure free. I'll believe it when I see it, but I'm ALWAYS hopeful. He is down to 20 units (.25 ml) injection everyday and we started at 1.5 ml. We have one more week on the .25 ml and then we reduce down to that amount every other day. At that point we need another EEG. I'm reading this and realizing that I need to start scheduling that EEG NOW!! Always something. Dr. Chez was happy with how much he has changed clinically. Of course, he is nowhere near to where other kids his age are, but he is at least able to understand most of what we say to him with out using sign and have conversations with out sign. Dr. Chez says that about a year of being seizure free and we should be more able to tell what his outcome and capabilities are with his language recovery. Patience. He gave us a study he did with a supplement called L-Carnosine (1,000 mg is what he takes). In his study there was a positive change in language and autistic behaviors in children with abnormal EEG's. So, we are trying that now too.

He is doing well considering his disability and I couldn't be more grateful for that. He reads well, writes well, understands his homework, and has friendships despite it all. Not to say that these things don't have any struggles that come with it, but he is doing well and progressing. He is a very typical 5 year old and is just a delightful little boy. Sometimes a little too independent for his own good. I cannot tell you how often he just figures out how to do things on his own and doesn't need anyone's help. He just takes care of his business. He makes me laugh!!

Getting bigger... with no signs of slowing down... so sad!

Dray is hanging in there as usual. Our poor little guy, is unfortunately, not little at all. He has put on so much weight. He seems pretty miserable lately. I'm trying really hard to put myself in his shoes: so much medication messing him up, hungry beyond your imagination, and carrying around tons of extra weight. These things cannot feel good to him and he seems down. He is not nearly as smiley and playful as he was. So, I ask him to smile, which makes me more sad because he can't smile because his cheeks are so full and big. I'm questioning all of his meds right now, but his EEG's look so good. I don't dare to take him off any of his meds when his EEG is cleared and when he does talk he talks so much better, and understands so much more. My heart just aches to have my happy, laughing, playful little guy back. So, with this mood of "missing him" in my heart I realize so many things that I miss about the old Dray pre-LKS. I miss just sitting down and reading books and having him repeat words and phrases back to me, I miss teaching him songs, I miss hearing him sing, I miss watching him really enjoy playing with other kids, I miss him being outgoing and asking other kids and adults questions and engaging with them, I miss telling him other people's names and having him be able to call new people by their names, I miss hearing him quote movie lines.... I could go on and on. They seem like such small little things that you would NEVER think about your child doing and loving it, but to me, for me to have that back would be so huge.

No more being sad. Moving forward. He is doing better and I have to just stay with that. Like I said he had another EEG that was cleared, yay! So, we continue to taper. We have an endocrinologist appointment January 12th. He has been on steroids over a year now, so we need to look at what that is doing to his body, and the endocrinologist helps with that. We go to Sacramento again on January 19th to check in with Dr. Chez. We will do another EEG before we go to make sure there are no changes in his EEG as we continue the taper. We are at 40 units a day right now for the ACTH. Dr. Chez says that he will continue to gain weight until we get down to 20 units. So, pray for Dray. This is hard, I pray that we are doing the right thing, and that this will all be worthwhile in the end. He is my little trooper. He sits right down for his shot everyday and chooses where he wants to put it. He rarely cries about it. He takes all of his medications and supplements (about 5) everyday with no fussing. He asks me if he can go to speech and to get a white hat at the hospital. I could not be more grateful for such a sweet little boy!

Little bit of good news... again...

Dray's EEG was this last Friday on October 15th. He got hooked up, and now that I'm not so clueless (thanks to Dr. Chez), I can now tell what's kind of going on. Let me be clear that I'm no EEG expert at all. I just can tell what Dray's EEG should and should not look like. Anyway, I was so excited because it looked so good. When he fell asleep it looked perfect. Believe me I sat there just staring at it and waiting for the screen to show the seizure spikes. I think I saw maybe one page with a bit of spikage (yes, I know that's not a word). So, the EEG was completely and dramatically different from the EEG in California. Yay!! I mailed the EEG to Dr. Chez immediately. I was just informed a minute ago that my assessment was right on.

The bad news is that the steroids have really messed Dray up this time. He is ravenously hungry. His eating consumes his day. He just is searching, talking, thinking, and devouring food from the moment he wakes up until he goes to bed. But, it's not just that he's hungry all the time... no, no he has VERY specific menus made up in his head. If you cannot deliver on that menu it is just crushing to him. He'll decide it's a pizza or hot dog or whatever, and if you don't have that he is in a "roid rage". He gets so angry. It might not bother me so much except for the fact that it seems like he has no desire to do any activities besides eating. I take that back, when he's not eating he wants to lay on the couch like a beached whale because his stomach ALWAYS hurts. His stomach is so tremendous right now. I was patting it and said to him, "look at this tummy," to which he replied, "yeah... I'm fat". He said it like it was no big deal, but that he is aware of his largeness. He told me that for exercise he wants to ride bikes with dad, unfortunately Todd is in the Middle East right now. So, no exercising for that chubby little guy. He does give a great big bear hug these days. Love it! Anyway, Dr. Chez wanted to start tapering a little. So, we'll start tapering down a bit. Hopefully that will relieve him a little of some of these nasty side effects. I love steroids and I hate them. I have difficult feelings to reconcile with on this medication.

We go to California again on Tuesday. Hopefully this time we will not be staying at the Sutter Hospital Hotel, but at an actual real hotel. I will let you everyone know the full plan from there. Once you stop the seizures.... how do you keep them from coming back? That is the million dollar question. We shall see how Dr. Chez responds to the question next time on "Living with Landau Kleffner Syndrome". I will update then. Thanks to my family, and you know who you are, they help us endlessly. How blessed we are to have you!

California Adventures...

Well, I took Dray to Sacramento, CA to see Dr. Michael Chez. Where to begin? I booked us a hotel, not knowing what to expect because nobody could tell me over the phone. Well, we ended up having an all inclusive experience. A room with one bed and a fold out chair for me, all meals included, movies, a toy room, and only 2 hours per day allowed outside of our room. Sutter Memorial Hospital had it all! So, if you did not catch any of my sarcasm we stayed at the hospital for almost 3 days hooked up to an EEG. Dray did great though. No complaints and just took it all like a champ!

Dr. Chez is just really energetic and really "hands on". He talks everything over. We looked at a bunch of Dray's EEG's comparing and showing me what it should look like. Believe it or not, no doctor has done that for me. So, it was nice to sit and stare at those seemingly senseless scratches moving all over the computer screen and actually make sense of it. He had a bunch of ideas and did not want to waste one single second. He seems so bound and determined to kill this thing. He said the neurologists at Primary Children's did a good job, but he was disappointed in the lack of EEG's documenting Dray more carefully. Also, with seizure activity as stubborn as Dray's he was disappointed that they did not push the steroids longer. In his opinion you can't "pussy foot" around. If you are working with seizures that stubborn you either go full boar with it, or you don't bother introducing those side effects to the child when it does absolutely nothing to stop the seizures. So, we're going a different route with steroids... again. As hard as it is for me to stomach it. His feeling is, and I agree, that this is a terrible disease that if you don't get control of it could be too late. So, we're doing an ACTH shot every day. Which, guess who is the tougher one to give the shot, me or Todd? Me. Hands down. Todd won't even go near the needle (just a side note). The first night at the hospital his EEG showed minor breaks in seizure activity. The next night Dr. Chez wanted to step it up a notch and he doubled his depakote and gave him a large dose of valium (a drug I absolutely detest). But, it was that or put in an IV for more steroids. His seizures did break a lot more, but not as much as we had hoped. So, all that and in the morning Dray goes to get up and his legs are jello. Can't walk and immediately falls onto the floor like he's drunk. So, I carry him to the bathroom where he can't hold himself up to go potty. A drunk 5 year old. Crazy.

So, where do we stand? ACTH shots everyday until our next EEG in 2 weeks, and then reevaluate at that point. We are keeping him at a much higher dose of depakote. Now for some cute and funny stories. Dray has a way with people. He is as other people have told me, "infectious". So, the EEG tech puts on his "hat" and says to me that he is unheard of. He just sits quietly, lets her put it on and he talks sweetly with her. Which, leads to her "infection" with Dray. She comes back to visit several times each day bearing gifts each time. Dray just wraps people around his finger. Dr. Chez was quite smitten as well. He just could not believe how well adjusted, smart, and sweet Dray is. He just repeatedly told me how well he is doing, that he is smart, and so high functioning. He said, "I wish all of my kids were as cute as he is". The best story though happened on the night shift. I noticed our night shift nurse was a VERY pretty girl. I thought, "uh oh, Dray is going to flirt with her". Dray is SUCH a flirt with pretty girls. He took one look at her and turns to me and says, "I like that girl!", with a BIG smile on his face. She is just laughing so hard. After that he says to her, "You are cute," and says,"can you marry me?". She was dying. So hilarious. She was already married, or I'm sure she might have agreed to do it. She was smitten with his suave ways. He cuts right to the chase. No time to mess around.

I know I'm long-winded, but bear with me. So, this is also of interest, maybe just to me, but I have to share. I talked with Dr. Chez awhile about his other patients. He told me he had treated about 50 patients with LKS. He said that people have come to him from all over the world, and usually in the later stages of it. So, I'm an early bird for him. Anyway, he said that of those 50 most are not LKS in the classic "text book" sense of LKS. That's what Dray is. He is smart and hasn't lost his intellect, they can learn sign, and they tend to have a better outcome. He said that usually LKS has other issues compounding it. Autism and different types of epilepsies that compound the issue. Dray is much more rare. He said that most of the kids he has had similar to Dray have turned out fine, but there are some who came to him later in the game that had persistent problems later in life. So, we have a few things going for us. We never know what Dray's future is, but it seems I keep getting encouragement along this horrible journey. Thank goodness for that! Seriously, Dray is such a joy and I just want him to have everything in life! Because, I know that he has so much to give to others. He truly is remarkable. I could really go on and on about my admiration for that boy! So, I will end it on that note. I will update 2 weeks from now. Lots of prayers until then!

It's been awhile...

Dray did have another EEG on the 28th of July to see how he responded to the 3rd IV steroid treatment. His EEG did not look good and has basically gone back to the way it was. For some reason I'm okay with this. I think because he seems to be doing so much better than he was. He is talking better, responding better, playing better, learning better, and he's always making progress. The progress is slow, but he is always gaining skills that help him with his disability. Even on bad days when he can't understand or talk as well, his signing is so good now that we can have good conversations and I can explain everything to him and he can do that for us. It's really been in the past few weeks that I feel like he's going to be okay. I know he has a disability and recognize he needs a lot of help and interventions, but I really feel like his intelligence is intact enough that he will someday be able to put all the pieces together and have it work out.

What to do now? That's a good question... I have no idea!! Dr. Thompson has officially retired as of Aug 1, sad for us. Dr. VanOrman has taken over. He has always read Dray's EEG's in the past and I have met with him before on a few occasions to discuss Dray's treatment, so I feel comfortable with him knowing Dray and his situation. He has given several suggestions to think about and I really don't know what to do. One suggestion is to go the Mayo Clinic. Kelly, if you are reading this I need to talk to you about the doctor you suggested in California. That seems like a possibility. We talked about more seizure drugs, depakote, to be exact. Maybe even surgery. Which, we talked to the surgeon already in Chicago about. We just need to follow up with more EEG's that he needs to see. I just feel directionless right now. So, then Dr. VanOrman said that we might consider that Dray is doing much better than he was before and we know that someday this will stop and maybe we shouldn't pursue another direction. Just keep him on the pulse steroids and ethosuximide until this ends one day. So, maybe I should run a poll, and whatever wins that's what we'll do. Kidding. But, I do feel like anything we do is a shot in the dark. I don't feel strongly about any one direction. I feel conflicted in any choice, actually. I won't bore you with my inner dialogue on the pros and cons of each choice I face. So, that is where it stands for now. My last phone conversation with Dr. Thompson was really great. I was having a tough week and told him that I had to know that either he was doomed or that he would come out of this. He flat out said that Dray will be okay; there will be language restoration at some point, although he can't say when. But, he has dealt with this more than any other person I know and he is confident that Dray will be fine and that in his experience with this condition, the kids have turned out much better than the literature suggests. So, to get to the point now,when I do make another decision I will post again!

FYI: Dray's school for kindergarten next year has been decided on. He will go to a private school, Kids' Village. They have an ASL class for him, and the class size will be right. The curriculum will be challenging for him, but the learning is more hands on. Perfect for him in every way!! What a blessing!!

Here's the latest news...

We had an EEG on May 25, and Dr. Thompson called this morning to give me the news. He said the seizure activity has picked up again. Not as bad as his first EEG's, but it has increased a great deal from the last 3 EEG's. So, here we go again. I have NO idea how to keep beating this thing off, but we are going to do another 3 day IV steroid treatment. That has been the only treatment we have tried yet that has been a great success. We will go in on Tuesday (June 1) to start that. After the IV steroids Dr. Thompson wants to keep him on a higher dose of oral steroids for a little longer than we did this last round, and instead of tapering (which is what we have been doing) we will put him on the pulse again. The pulse steroids are taken 3 days a week on high doses instead of taking the meds everyday. Todd and I are concerned because how many times can you go back to doing IV steroids. It doesn't seem like it would be reasonable to do an IV steroid treatment every 3 or so months. That is something I need to talk to the doctor about.

Today I told Dray that he was going to the hospital again because the seizures started again, and that he would have to get an IV in his hand. He was totally calm about it and just told me that he wanted the IV to be in his hand and not in his arm (the PICC line) because the IV in his arm hurt him more. He signed the sweetest prayer too. He prayed, all on his own accord, that he could get better and that his seizures will stop. That was so sweet to me that he knew he could pray and ask for that. Today was bad news for us, but I have to say that lately I have had so many reminders of what a remarkable child Dray is. I had a meeting with the deaf school because Dray will need 1 of 2 situations for kindergarten next year: to go to the deaf school, or to have ASL services in his kindergarten class. We talked for more than an hour about Dray and it seemed like over and over they were astonished at his abilities for a child with such a disability. His ability to do so well academically and be able to understand sign so quickly. His teacher reminded me that he is academically well above most kids his age for kindergarten. I get so discouraged by his disability that I need to refocus on all of the things he is so capable of doing, and there are many!! This is difficult to face again. We have been seeing some signs of good progress lately, and I so hope we can stay on that road. He has been able to understand spoken language so much better lately. We have been teaching him so many new words and able to remind him of words he couldn't remember how to say. It really has been awesome. Pray that Dray and our family can keep moving forward. Hopefully we'll have better news for the next entry.