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?