One year later.......

February 19, 2014 Sammy had his first tonic-clonic seizure. Oh how our lives have changed since then.

Then: Sammy didn't take any medications, and what he would take had to be liquid. He was in a regular education classroom with just a one-on-one for reading and math.

Now: Sammy takes upward of ten pills twice a day (one pill at noon), he's been weaned off all liquids at this time. He's also in a special ed class with a full time LPN assigned directly to him, plus his class has an aide. He is now wearing a harness on the bus.

Then: That first EMS call scared everyone, but mostly Henry. He didn't have any idea of what was happening to his big brother. One of the EMTs gave him a special fireman's hat to ease the scariness. He would just stand by and watch most of the time.

Now: Henry is a pro at helping Mom, Dad, or any other adult around if Sammy has a seizure. He knows to get a magnet (for the vns) or Sammy's "butt medicine" (diazepam). He helps pack Sammy's go-bag for the hospital, getting Sammy's puppies or blanket. He has sacrificed mommy time because I always accompany Sammy in the ambulance or on overnights to the clinic/hospital. Henry really has taken on the role of big brother lately.

Then: As a family we could go out without a care in the world about medicines. Eric and I could leave the boys with just about anyone that understood Autism. 

Now: We check and double-check we have everything in case Sammy has a seizure. Meds, wheelchair, a towel, maybe even a couple of disposable undies and change of clothes. Leaving Sammy with someone not familiar with seizures or his particular protocol just doesn't happen. 

We're stronger for it all though. As a family, as a couple. And in just 12 days, our family will be even stronger with the addition of Sybil. She will help us care for Sammy in a way only she can.

Hard to believe

I don't understand something........why do people fake a child's ASD diagnosis (or any other dx for that matter)? I would happily give up my life with Sammy for a day if they could truly experience all the bad that goes with ASD and epilepsy. A day where a meltdown precedes a cycle of 7-10 seizures (complete with loss of bladder control), stimming with voice and body, refusal to eat anything but chips or cheese sticks, and a call from the bathroom to come wipe his rear end.

Don't get me wrong, I love my child the way he is. I'm weird in that I take heart in the matter that at nine years old he still needs me to help him get dressed, that he wants to snuggle with me at night, and that he tells me I'm the best mom ever because I let him have a grilled cheese when the family is eating spaghetti.

2014 has been a hellatious year for my family. If I wasn't living it, I'd say it was all a lie. There are days when I *wish* it was a lie. That I could just tell everyone "just kidding" and move on from it all. From continuing to reel from the loss of my dad in October 2013 to losing my grandma in September 2014, from a rare cancer diagnosis to several hospitalizations for a new epilepsy diagnosis, it's just been super hard. (financially, my life is a disaster)

I just don't understand why someone would lie about it when the people living it wish it wasn't true.

Let him be a kid

This is my favorite piece of advice......NOT!  I would love to just let Sammy be a kid. Unfortunately, there are things to consider.

At nine, I stayed home from school alone. I participated in sleep-away camp. I rode my bike around my neighborhood. I played in a room separate from my parents at parties. I helped watch younger cousins. My parents had a lock on their door and used it. (totally a foreign concept then, standard now)

These are things that Sammy can't do (yet). He can't be left alone. It's highly unlikely he'll ever be away overnight without a family member. He doesn't have the coordination to ride a bike. Saturday at a party, he was with the other kids and had a seizure, no one came to get us......not even Henry (I think he was too busy playing.....we happened to hear another child crying). Sammy would rather PLAY with the younger kids because he's on their level.  He may like shows like Johnny Test, Casper, and Wild Kratts, but he also likes Teletubbies, Sesame Street, and Pajanimals.  Sammy sleeps right with me every night. Can't tell you how many times I've woken up to be peed on during  a seizure. My bed is now triple sheeted with waterproof pads between.

I would love to sign him up for group sports, after school care, or other activities. And yes, I understand there's a need for him to be a normal kid.  But he's not normal.  He's Sammy normal, just not society's version of nine year old normal.

Ultimately, it's not the random friend or close family member that is responsible for his welfare, we are. There are worse things you can call me than "overprotective" or "sheltering" and I'm glad that there are. In the end, Sammy will be safe.

Sybil will give Sammy some of his independence back, especially sleeping in his own bed/room. He'll be able to walk more steadily. He won't be alone at home or in public.

Hopes and dreams..........

It's always hard to have hopes and dreams for your special needs child. You never know what is appropriate. You don't want to encourage dreams that are well beyond their reach, but you want them to aspire to be something more than just a living organism.

It's only been recently that I've started thinking about what Sammy can and can't do against his peers in terms of life goals  He talks about marrying his best friend and having a life. Of course he plans to live with us for the rest of his life.

I've continued to watch Henry "catch up" to him, and recently, he's started to surpass him mentally and academically.  This is the hard part of having your special needs child first. I'm not saying it's harder, I watched my sister go through having her Autistic son second. It's just different from my perspective.  You don't notice just how far behind their peers they are at the older stages.

Sure, he wasn't talking in phrases at 3-4 years of age. He wasn't potty-trained until almost five. Heck, he had a paci until 4 years 10 months and I remember the day clearly he finally lost the last one. But it's not until you start putting Sammy with other 9-10 year olds that you really realize how far behind them he is and how he just isn't going to catch up to them.

Sammy's IQ has dropped due to his seizures. We don't know if it's permanent, my hope is that he will regain what he's lost.

I don't like having to be careful with my encouragement. I don't like asking my five year old to wait for me to help him because his brother can't do things his age peers can do on their own.

My hopes and dreams from the moment I found out I was pregnant with Sammy have changed so drastically, I no longer know what they are.

"I'm getting HUNGRY!"

Probably the most popular phrase heard out of Sammy's mouth. And it doesn't matter if he's just eaten and walked away from the table saying he was full. Within 5-10 minutes he's "hungry" again and means it.

Reason #1: the medications he's on. Sammy takes three different epilepsy medications on a daily basis. One of them, Onfi, is known to slow down the metabolism. He's eating out of boredom and gaining weight. He's gained 35-40 pounds since his diagnosis.  My little peanut who was borderline failure to thrive now outweighs many kids his age and older. He's gone from a solid size 8 to a 10/12 husky.

Reason #2: he forgets he eats. The seizures have taken a toll on Sammy mentally and physically. His short term memory is completely shot. He doesn't remember doing things, including having a meal. I spend A LOT of time reminding him of the meal we just ate. Did you see the movie "50 First Dates"?  My life is like that in many ways. He truly forgets and it SUCKS.

Are service dogs REALLY that expensive?

Many people's mouths just drop when I tell them Sybil cost $11,000. They don't understand how a dog can be so expensive, until you actually spell it all out.

I'll start by reminding you that Sammy is autistic, epileptic, intellectually disabled, and has a genetic abnormality as well as a brain malformation. Sybil is not a pet, she is a working dog that will be with us as long as we need her. Our goal is to be in a different place so that when she is ready to retire, we will be able to keep her as well as a new service dog.  But that is YEARS down the line.

Sybil will come to us at 14 months of age. Consider first that it means 14 months of boarding and vet care, including spaying. It also includes her flight from her breeder, Sandy with Sho-Me Labradors of St. James, Missouri to the trainer Jason at Canines 4 Hope in Palm City, Florida. We specifically looked for a Florida-based trainer because we didn't want to have to travel with Sammy (who shouldn't fly).  We also wanted someone close enough that was a day trip for us.

Sure you can rescue a dog from the shelter and train them commands, but truth is they still have an unknown history. Service dogs are chosen from puppyhood based on their nature and ability to follow commands. It also requires them to be able to ignore distractions from people (petting, calling, staring) or other animals (cats, dogs, squirrels).

Sybil will have had a few months of basic training with Sandy, including manners. She will soon be flying to Palm City to begin four full months of intense training with Jason.  We'll go and visit her for training. I'm actually grateful things were a bit delayed so we'll have some holiday breaks to go down and see her overnight.

Canines 4 Hope is at the lower end of cost. Many organizations require you (as the family) to fund-raise $14,000 or more and there's a serious wait list for those "free" dogs.

We have secured more than half of Sybil's cost via private donations and selling "A Friend For Sammy" bracelets which have been sent all over the country. We also secured two grants from epilepsy foundations.

Many organizations aren't equipped to dual train a dog for someone like Sammy. Some won't take children at all, and some have strict guidelines and deadlines for acceptance. I had a lot of friends helping research different places, but ultimately, I'd dig in and find something that bothered me in the FAQ or the actual application. Even today, I found an organization that states "XYZ maintains ownership of the dog"  I have a HUGE problem with that.

Jason understands what we go through as parents, he has a son with epilepsy as well. This was a huge factor in our decision. We were working with a PERSON, not an organization.

He also understood our timeline for Sammy. When we first met with Jason in June, I had already had four in-patient chemo sessions and Sammy had been hospitalized twice for uncontrolled seizures. Fund-raising in the traditional sense wasn't going to happen.

Yes, service dogs are really that expensive.  And given Sybil can do so many things for Sammy at home, school and out in public, I think she's worth it.

If Sammy wasn't living it........

I wouldn't believe it.  My dad, Sammy's beloved Papa, died in October 2013. It was hard on everyone and I'm grateful that I took the boys back to Michigan to see him in July.

Four months later things sort of hit the fan. I'm serious when I tell you I think friends and strangers sit back and say, "I call bullshit. All this can't happen to one person."  I assure you it has and can show you my EOB's from health insurance, photos from hospitalizations and the bills that continue to pile up.

Here's a time line

• Feb 13: I had a biopsy
• Feb 19: Sammy had his first gran mal seizure EVER
• Feb 25: I received my diagnosis of rhabdomyosarcoma and had a CT scan
• Feb 28: I met the oncologist and scheduled surgery
• Mar 3: complete hysterectomy and oophorectomy 
• Mar 24: Sammy had his second gran mal seizure
• Mar 31: I had a smart port placed in my chest

All hell broke loose after that. From my first chemo session on April 14th to my last on September 29th, Sammy and I had seven hospitalizations between us (plus one more for me after that last session).  The most interesting was on April 18th, yes Good Friday. We were calling EMS for I think the 3rd or 4th time because SAmmy's seizures wouldn't stop. They get Sammy downstairs, I follow telling the responders that I had just been discharged two days prior. 

I became very warm and very nauseous in the back of the ambulance and tried to get out. They let me sit down.....next thing I know I am sitting with an EMT right behind me with her knees buried under my arms. I'd passed out. They transported both of us in the same ambulance. I was lucky to not have shown anything other than stress in my testing because Sammy wound up admitted. The ER dr was nice enough to discharge me with the understanding I was heading to the local children's hospital behind the transport team for Sammy. We spent the entire Easter weekend at the hospital. Bonus that weekend was we got our first taste of a service animal. 

                  

And that started our service dog journey. Sammy was admitted again in May for four more days, this time to the hospital where his neurologist participates. 

In early June, Sammy was transported to a different hospital because he'd had a drop seizure on a pool deck. He'd cracked his head pretty hard. Fortunately, no damage. He was wearing a helmet full-time within 2 days. 

At the end of June, Sammy's seizures were cycling. We'd already scheduled him for a VNS (vagus nerve stimulator) placement for July 3rd. June 30th Eric drove us to the hospital and dropped us off for what we though would be a couple days. It was a week. Monday to Wednesday Sammy consistently had seizures. His longest was eight minutes (8) and that was with the nurses giving him Ativan at the four minute mark. Sammy had surgery on Thursday. Normally a VNS placement is outpatient. 

Sammy spent another three days in the hospital. The seizures had taken their toll. He was unable to stand or walk alone. When we were able to get him upright in a wheelchair for 90 minutes, he took a three-hour nap afterward. We came home with PT orders. 

We use a wheelchair for him when we know we're going to be out for a while. Thankfully we shop at Publix where they have Caroline's Cart.  

His medications have changed too many times to count. His first he was allergic to. The next didnt' work. They discovered another allergy in the ER one night. He now takes three daily meds, two vitamins and an allergy pill. He also has two rescue medications. 

My poor kiddo has lost mental and physical abilities that may or may not return. We are hopeful. He's also seen a 35 pound gain since the beginning of the year from the medications and lack of activity (due to his balance issues)

Every day is a challenge. Every day we find something new that Sammy has learned or lost. Sybil will help immensely to keep him calm and able to learn new things and relearn the lost.