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?