Hello friends, we've had a few things take a turn for the better (whew!)  Casey's cheek, miraculously, has started to heal.  I am JUMPING FOR JOY over this.  It has been so stressful having his little cheek be a big bloody scabby mess.  Especially when told it may scar.  After battling this eczema for 3 months and having it come and go - it looks like it may be healing all the way finally.  I have stayed up all night all weekend keeping him from scratching it on sheets or with his hand and I think this is what has helped it heal - finally no irritaion from little fingernails or fabric!  I'm a zombie, but it was worth it. 

Cody's still having big seizures and is still up all hours of the night, but I'm praying that I've found a light at the end of the tunnel.  I called the dept. of developmental disabilites (DDD) and they have an emergency respite allotment.  After describing our situation, they said it "may" qualify as an emergency.  I had to submit some info and get a Dr's support so our super amazing neurologist helped plead our case with the following:

"I am the pediatric epileptologist caring for Mr. Cody Graves.  Cody has catastrophic epilepsy, meaning his seizures are intractable to seizure medications and his development has been severely blunted by his seizure disorder.  He currently has 30-50 seizures per day.  The etiology of his sleep disorders is not understood but likely stems from his frequent seizure episodes.  Often he will be up most of the night with episodic seizures.  The toll on the parents sleep has been extremely devastating.  They only get about 2-4 hours of sleep per night.  This sleep deprivation has impacted their executive function, concentration, ability to stay awake while driving and cognitive processing.  This added stress has also impacted their health.  Shawna (the mother) has heart palpitations due to this stress.  Although we are currently investigating sleep medications, they have so far been unhelpful.  I am writing to place my concerns for their ultimate need for sleep.  Could you please grant them emergency respite for the next two months?  During this time we will be trialing sleep medications but in the short term they really need sleep.  A respite worker would help them regroup and hopefully allow our trial medication to begin to have an effect on Cody's sleep.

Sincerely,

Russell Saneto 

Associate Professor Neurology and Pediatrics

Children's Hospital"

So.........with our beloved neurologists help, I'm praying we are granted temporary overnight respite so we can re-gain control of our lives.  Please cross your fingers, pray, do a dance, juggle scissors...whatever you feel fit to give us a cosmic nudge toward this goal!  :) 

It is like squeezing blood out of a turnip to get any type of respite from anyeone so I'm skeptical - but hopeful.  They sure make you feel small too.  Here you are, calling to humbly tell them your life is falling apart, and they question you as if you'd just robbed a bank.  "how many hours a day do you need help?"  "ummmmm....well I don't want to be greedy...."  "maam, you have to tell me what you need" "ummmmmmmmm.....I'll say 8 hours?"  "EIGHT HOURS?"  "ummmmm..you told me to tell you what i needed."  "EIGHT HOURS????"  "ummmmmmm....is that too much?"  "JUST TELL ME WHAT YOU NEED!"  "I JUST DID!  AND YOU'RE ACTING LIKE I'M CRAZY!" 

I also called DSHS to ask about a medical coupon (which you don't qualify for unless you're low income - but there's a "spend down" plan where once you hit a certain amount of outgoing medical bills, they assist you.)  They, too, act like I'm an idiot.  I had no idea about this program so I called and said "can I get some info on the spend down program?" 

Rep: "I'll send you an application in the mail.  thank you.  goodbye." 

Me: "wait...I have a few questions." 

Rep: "maam...I have 20 people holding on the line." 

Me: "well, I just waited 20 minutes to talk to you." 

Rep: "what is your question maam?" 

Me: "we spend about $20,000 a year on medical bills alone.  will we qualify for the medical coupon?" 

Rep: "maam, I just TOLD YOU, I'll send you the application." 

Me: "but I don't really understand what I'm applying for - could you explain how 'spend down' works?" 

Rep: "like I said, maam, I have 20 people on the line."  CLICK. 

GRRRRRRRRR.  Like life isn't stressful enough, these government agencies treat you like dirt.  And anyone who calls them is truly just looking for help.  Only to be minimized and shot down. 

But for those parents of special needs kids, those are two options I didn't know about until this past week - emergency respite and "spend down."  Worth checking out.

Thanks for your kids emails, thoughts and prayers.  We are having a rougher time than usual and your support is felt. 

Gratefully,

shawna