Thursday, December 20, 2012

The List

In the last few weeks Cole has had a downward spiral.  For those who have been asking and have Dravet kiddos of their own, here is the list of things that we have tried and the rundown on what has been happening.  This isn’t even the half of it, but for record keeping purposes I will hit the highlights.

October-Cole starts seizing more often.  At this point we have practically stopped using benzos and rescue meds in general.  He has once again become immune to them and we fear withdrawal symptoms.  Also, in prep for starting Onfi.  Only used rescue meds 3 times all month.  We go to Camp For Courageous Kids.  I still need to write about that.  It was wonderful!  Had our first 3 Tonic Clonics in one day.  We stopped Potassium Bromide in late August and the month of getting it out of his system has ended.  Start Onfi.  Largest break in between major seizures was 4 days.  Every seizure looks different.  Different types, different times, different lengths.  There is no regularity or ability to predict what is coming next.  This has kind of been the theme of Dravet, but this year has just been mind blowing.  It makes Sluggers job extremely hard and training new nurses difficult. 17 major seizures recorded.

We prepare for Superstorm Sandy.  End up evacuating anyway.  We were gone for 5 days.  Drive 14 hours home.  The next day, Daddy leaves for NYC to help with the aftermath.  He is gone for 2 weeks. 

November-Get a small break when we increase Onfi.  Have 7 days with no major seizures.  Then things get hairy.  Daddy is still gone.  Have a nurse quit and so only have coverage 3 days a week.  Start Anat Baniel Method Therapy.  It is a very slow process with Cole and his sensory issues.  He doesn't like strangers to touch him.

Cole starts having at least 2 tonic clonics every day.  Nothing is stopping them.  Onfi, double Keppra, and rescue meds are hardly working when we use them.  Still using all rescue meds and double Keppra sparingly.  Cole starts having major regressions.  Reverts back to oral phase, acts a lot like an infant and starts sticking every thing in his mouth.  Has some potty accidents.  Loses some of the songs he knew before.

Brian comes home and the next day we leave for Miami.  Read about our Florida adventure HERE.   24 major seizures recorded, not counting nocturnal.

December-We drop the rest of the Onfi.  Cole finishes his amoxicillin on the 1st.  We get ready to start Verapamil.  Want to go back to school and get settled into routine before we start something new after all of the travel.  Silly us.  The 2nd reintroduces daytime TCs.  It is so weird how he has a honeymoon every time he is on high dose antibiotics.  We start a love/hate relationship with 911.  We call them at least once a week all month.  If you know us at all, you know that it is totally abnormal for us to get to our breaking point so often.  Cole continues to live his legacy and stops seizing once we call, or once the paramedics show up.  Whether we wait for 29 minutes or 8 minutes, the story is the same.  It does not work if we pretend.  He knows J We have to be serious and dial for real.  We start the Verapamil.  Cole catches a cold the first day he goes back to school and shares the love with Mom and his main nurse.  We stop the Verapamil, after one whole day!  Still not sure if it works for him, but we couldn’t know while he was sick.  Also didn’t want to take the chance of a major drop in blood pressure when he was ill.  We take him to the doc, strep negative, flu negative and throat culture is negative. He loses his voice and looks horrible, but still has some stamina.  The entire month the longest break he has from tonic clonics is 2 days, and that only happened once.  The myo’s abound.  The TCs ramp up from 2 a day to 3 a day.  Every single day.  Cole regresses further and does strange infant-like behavior like chewing on his feet and licking the floor.  We try double doses of Keppra, since that helped on the airplane in Florida, kind of.  It helps maybe 1 out of three tries.  Mom gets super sick and wants to curl up in a ball and hide.  We don’t have nurses, so this makes things interesting.  Cole, per his M.O. continues to be sick, for a long time.  At this point, Cole has been de-sating to the 30s and 40s during major seizures and will hover for minutes even with 5 Liters of oxygen.  He is congested and occasionally coughs, but it is just a virus, right?  We throw around the idea of possible pneumonia.  I am talking to the pediatrician daily. 

It doesn’t matter what we do.  If we use rescue meds, the seizure doesn’t stop.  When we used to administer medication like Diastat or Versed, at least it helped to prevent future seizures that day and would give him some sort of a break.  Cole is seizing again within a few hours, even with Diastat.  Has 26 major tonic clonics (this is not including the short nocturnal ones) in 12 days.  During all of this we call Dr Miller.  He suggests that we start Bromide again for a short-term solution.  We know that he broke out in a rash about 2 ½ weeks in to it before.  So, back to dog medication we go.  Immediately we notice that Cole’s speech declines.  By the second day, he is slurring his words.  By the third day, he is drooling even without seizures. We are just looking for a short-term solution.  Something to just break the cycle of seizures.  We know that Cole can’t handle long term Potassium Bromide.  We see our son slipping away from us.  Call Dr Miller again.  Don’t want to wade into any more old medications.  We could start increased eye fluttering, maybe even those evil drop seizures could come back?!  Things are already bad here, why would we want to possibly make it worse?  So, we get into “illogical and completely bizarre” territory.  Discuss things like IVIG or prednisone.  Heaven help us, ACTH comes up.  Also high doses of antibiotics…to control seizures.  Illogical.  Remember how Cole had a honeymoon with the Amoxicillin?   As bizarre as it seems, some kids with Dravet have decreased seizures on high doses of antibiotics.  There are side effects, but it is less risk than steroids.  So-we decided to start 3 days of 1000mg Rocephin shots, that day.  Cole gets 6 huge shots in the behind.  Fun...not really.  Dr Miller wants to keep up the Bromide for a week and we talk about steroids as the next approach.  By now, we are on the fourth day of Potassium Bromide; Cole can barely speak at all.   He is drooling like an infant and does not want to eat.  His gait is slowing.  He is grabbing his face before a seizure, going tonic and then scratching himself.  He looks like he has been in a fight with a rabid raccoon.  Perfect for those family pictures next week.  Brian and I decide to take him off Potassium Bromide.  This entire time we are vacillating between deciding to go or not to go home for Christmas (cross country flight).  The next morning, Cole wakes up shaking like I have not seen him for a long time.  The tremoring and myoclonics are so intense that his whole body is involved.  Almost into tonic clonic territory.  We wonder if it is due to this, due to that.  Always having to play detective.  We give him a double dose of Keppra and 5 mg of diazepam.  Decide to continue with the antibiotic shots.  I say, "We are not going home".  Cole improves throughout the day and regains some speech.  He still sounds like a drunken sailor and cannot say the ABCs, but hey…he is talking!  We’ll take it!!!

The entire day of the 2nd antibiotic shot, he does not have a tonic clonic.  We are still holding our breath, but so grateful for the small break for our child.  His color starts to come back; he doesn’t look like death warmed over.  Day 3 of the antibiotic (today), at the time of publishing, he has had two big seizures.  Better than 3!  So-if you really feel like nothing is working and your child just keeps clustering no matter what you do,  go out on a bizarre limb and try high doses of antibiotics.  Or maybe not.  It is not a long-term solution, but worth a shot.  I think.    31 major seizures recorded, not counting nocturnal, and we have 11 days left.

 I still don’t know if we are going to go home for Christmas.  But really, what if this is his last Christmas?  Won’t we regret staying just because we were scared?  Our life the last few years has taught us to live to the fullest.  So we will probably put him in a drug-induced stupor, board that plane and hang on for dear life.  Who needs performance enhancing drugs, bungee jumping, marathon running and rock and roll?  Just get a child with Dravet Syndrome and you can have all of the adrenaline rushes you could ever ask for! J

Wednesday, December 19, 2012

Our Florida Adventures

We had our 6 month visit with Dr Miller scheduled for November.  We decided to move it from the regular clinic day and combine it with our Thanksgiving break.  Two birds with one stone! 

Before we even got to the hospital, we had all sorts of drama.  Cole had been having very frequent tonic clonics at this point and we were nervous (as always) about flying.  Somehow taking care of a seizure at 30,000 feet isn't so easy.  Landing the plane, also not so easy.  We gave him a double dose of Keppra per Dr Miller and sent up a hundred prayers that he could make it on the flight.  God has a sense of humor!  Cole made the flight, but had a severe seizure at baggage claim.  We were quite the sight.  Urine streaming down my legs (Cole's), holding a seizing child, Brian trying to grab our bags off of the carousel, Slugger wondering what the heck was going on.  Hey-he didn't have one ON the plane!  The next day he was so bad that we considered calling 911 and going to the local hospital.  However, we totally knew that if they admitted us, we would not be discharged in time to make our appointment in Miami the next day.  We didn't call, Cole made it through the night.  We got up the next day and headed 3 hours south to Miami Childrens Hospital.

While we were there, Cole had his first sleep study.  Results show there is no major change.  He is still seizing throughout the night.  No sleep apnea though, hooray!  We discussed with Dr Miller the increased frequency in tonic clonics and myoclonics.  Cole had not been sick lately and we felt like we had a baseline established, as fluid as it was.  Bottom line was, we knew that the Onfi wasn’t working. 

Dr Miller, as great as he is, basically tells us during our appointment that we are running out of options.  Which we kind of already knew, but it is hard when one of the best doctors in the country for what your child has, tells you that he can’t help you.  Cole has tried 7 or 8 meds at this point and has failed them all except Keppra-which we really don’t think is working very well anyway.  So we decide to get off of Onfi.  Next stop, Verapamil (a blood pressure med of all things).  You know we are all about Plan A, B, and C…so after that, it is time for Stiripentol or revisiting old meds.  We discuss alternatives such as VNS, medical marijuana (which is illegal where we live), IVIG, steroids such as ACTH or prednisone.  He wants to see us in 3 months.  Okay, now things are really getting real.  On the day we visit Dr Miller, Cole has three tonic clonics.  He also seems really sensitive to light.  Much more than usual and is hiding his head under a blanket.  I will say again, seizures in the car, on the freeway are definitely ranked in the worst top 5 places to have your child seizing.

The next day all hell breaks loose.  Cole has 4 tonic clonics and was basically in NCSE (non convulsive status epilepticus) the entire day…we just didn’t know it.  He is inconsolable and we can tell that he is in terrible pain.  He is actually complaining of eye pain.  For a kid who has run around on a broken foot, twice, this is huge.  The light sensitivity is very intense and he wants his special glasses on even indoors.  We try a double dose of Keppra, Motrin, Tylenol…nothing is working.  We contact Dr Miller and tell him we suspect a migraine.  He tells us to give a combo of Benadryl and Aleeve.  By tonic clonic #3 we are getting anxious.  We give Versed, it doesn’t help.  Cole can’t hold up his head, is drooling profusely and can barely speak.  Yet, he doesn’t want to be left out.  The boy is adamant that he is a part of the holiday party and refuses to sit out in the car with me.  So I take him inside and he sits on our laps, wrapped in a blanket as we eat and looks the definition of disabled, which is rare for him.  But he is there and he breaks out a crooked smile; such the definition of resilience.  At TC #4, it is evening and we call the on-call neuro, who told us she was extremely nervous and wanted us to come in.  It is never reassuring when a neurologist admits to you that they are nervous!  We explained that we were 3 hours away and would have to be Life Flighted, which could take over 5 hours from start to finish since we had to go through the local ambulance, hospital, etc.  She agreed that it could take too long.  Getting through to a new hospital that doesn’t know us and doesn’t know Dravet takes forever.  By the time they believed us enough to call Miami and get the go-ahead, it could be hours.  Remember he isn’t actively seizing at this point so to a regular doc, he would look fine.  She suggested that we actually get in the car and drive down.  At the end of the conversation she gives us instructions to give him Diastat and a double dose of Keppra.  If he has another, we are to call AirMed and get down to Miami.  No matter how inconvenient it is.  The Diastat in combo with the other meds settles Cole’s brain to the point he can sleep, just through the night.  It also tips us (and Dr Miller) off to that his supposed “migraine” was actually bizarre seizure activity.  Since pain relievers did nothing for it and a benzo did, it was probably seizures.  Weirder things have happened with Cole.  Add it to the list of "rare".  Most regular people would sleep for a day or two with all of those medications in their system, not our Mini Hulk!  He only got a 7 hour nap.  We truly experienced a miracle though and made it through the night.  I really didn’t want our first helicopter ride to be in a different state and take a couple of hours.  Thanks divine intervention! J

Those meds carried over and he did not have a major seizure the next day.  However, we got a new surprise at night.  Cole started having major nocturnal seizures.  Tonic clonics that last from 30 seconds to a minute.  He will sit up in the middle of the night, grab his face with his shaking arms and have full body convulsions.  We can only hold him and tell him that we will be there for him.  They are too short to drop his oxygen and don’t need meds.  However, it gets my brain kicked in to overdrive and I just lie there awake, waiting for the next one.  One night he had 9.

The next day, I had my mommy instinct telling me he might have an ear infection.  Mind you, there was no complaints of pain, no major fever, no pulling of the ears, no lethargy, just a hunch.  We took him in and BAM, both ears were infected; they started him on  Amoxicillin.  The rest of our Thanksgiving break was full of nocturnal seizures, but he had a break with daytime ones. 

I was so ready to go home.  I wanted our routine back.  There were rumors flying around that Brian was going to be sent back to New York which stuck fear in my heart but I knew that I had a back up plan for support and we could really use the money.  The hurricane, him being gone, Miami, the holiday and all of these seizures were getting to me.  So, we were grateful for the break from daytime chaos.  Well, at least where seizures were concerned!  We had a great time with our cousins and other family members that we don’t get to see very often.  Plus, it was 80 degrees the day we left!  Is 32 too young to become a snowbird? J

Monday, December 3, 2012


Hey there.... *awkward silence*
It's been a while.  How are you?

We. are. alive.

If you live in the United States, you probably heard of Frakenstorm otherwise known as Hurricane Sandy.  At one point it was headed straight for us.  So, we readied our house.  Our emergency preparedness skills kicked in, full force.  We took everything out of the basement.  Moved all of our pictures and precious possessions to the top floor.  Pulled all of our furniture away from the walls.  Put towels in all of the windows.  Got gas for the generator, bought water and food.  Stocked up on medication.  In the end, even though we were super prepared with heaters, batteries galore, flashlights, blankets and enough food to feed a large family for weeks, we still ended up evacuating.  It was the best thing for us as a family, especially for Cole.

Our house was fine and we ended up spending the time in warmer weather.  Some would say, "Why?".  Others knew exactly what we were thinking when we packed up and left in a matter of hours.  Barometric pressure, possibilities of no power, no access to the hospital, etc.  Even if there was something as simple as a tree blocking our road, it meant that the ambulance couldn't get to our house if we needed it.  We didn't know what would happen, but the majority of our life is hanging in the balance of the "cone of uncertainty" to use a phrase from the weather man.  We didn't need any more uncertainty.  Our life is an emergency and we did not need to add to it.  So, we left for a little while.

I feel like I have kind of evacuated the blog.  Even social media.  No more Instagram, very limited looking at Facebook.  It was the best thing to do in the moment.

I really want to catch you all up on what has been going on around here.  Honestly, it is overwhelming.  Failing multiple medications, stress with work, new therapies, school stuff, nursing stuff, family stuff, and more just stuff.   Cole is having more seizures than ever...and I mean, ever.  I kind of evacuated my life too.  This little semi-reseblance to a normal existence that I have been carving out for the last year has kind of been put in the closet.  Since our nursing is extremely limited I have gone back to full time caregiver 24/7.  The boy is with me everywhere.  He has also been missing lots of school.

Hurricane Sandy also took our daddy's attention for a month.  For a week he was constantly on his phone and computer and then he was in NYC for two solid weeks.  Cole was really struggling during all of this and it could have been a really dark time.  In the end, it showed me that I am stronger than I thought.  I always knew I was good under pressure, but I really reached my breaking point.  That is when people stepped in, who owed me nothing by the way, and took a little piece of the burden.  We are not out of the woods yet.  We almost had to Life Flight Cole and my little calendar book is full of days upon days of multiple major seizures per day.  We went to Miami and hopefully have a new plan (or two), but we are kind of running out of options.

Stuff like the blog, e-mail, Facebook and Instagram have been so far in the back of my mind that it seems like another life completely.  I still miss you and want to catch up on our high highs and our low lows, if only for record keeping purposes.  In between all of the trips to the hospital and the days of not showering because you can't leave Cole for a second, we have had some funny, good times.

Stuff like Cole going to the beach.  Playing with cousins we have not seen in a long time.  Cole being obsessed with excavators and wanting to call Santa on the phone.  We have always known that the only thing we can control is our attitude.  So-we had an adjustment and are going to make this holiday season the best that it can be.  Yep, our life is still an emergency; but we will show up at the ER with antlers and tacky Christmas sweaters!

Happy Holidays,

P.S. We got nominated for an award.  Kind of fun :)

Tuesday, September 18, 2012

All Over The Place

Hey. We have kind of been all over the place the last few months. High highs, low lows.

Let's relate to the playlist. You know about the Soundtrack For Life by now.
This morning I put the: Faith Hill, Savage Garden, Bellydance, Sade, Jack Johnson, Best of the 80s, Mormon Tabernacle Choir, Usher, Dierks Bentley, Josh Groban, Mariachi, James Taylor, Adele, 90s Country, and Michael Bolton Pandora Stations on shuffle. Confused?

A little bit of everything. (and this is not even half of the variety in my library)

Smash all of those artists into one playlist and you get something that is similar to our universe the last little while. Kind of crazy, but it works.

I promise that I have sat down with intent to update, but it is one thing after another around here and I have gotten distracted more than once.

So, Reader's Digest...we are alive, we will survive and I need a nap :)

Thursday, August 23, 2012

Surrounded By Greatness

I have never really been star struck. I can have a conversation with a CEO or a governor and I won't get nervous. I remember being nervous the first time I met Dr. Dravet. She just represents so much emotion in my life. This year was much better ;)I love that this conference not only gives you the opportunity to connect with other families, but with incredible doctors; who could end up helping you in the future.
The consultations are incredible and you have the chance to have one on one time with the best doctors in the world...without having to pay a dime! I try to tell everyone that you are entitled to a second opinion, and a third and a fourth. You are the best advocate for your child and should totally trust your doctor and treatment plan.I had the opportunity to once again share meals with these people and get to know them outside of their offices. It was something that really impressed me at the first conference.
We had the opportunity to hear from doctors around the world with the magic of the internet. There were presentations from Italy and Australia, even though the doctors were not physically present. We can give each other feedback and spur ideas for new research and treatments. It also gives us the opportunity to laugh. I made Dr Miller laugh more than once with a recount of our summer. See, even he thinks we are never boring ;)

Wednesday, August 22, 2012


Welcome to the first in a series of VERY picture heavy posts.It is always great to meet with my Dravet friends "In Real Life". Some have been friends for years, others this is our first interaction.
All are special. These are some of the people who can read me like a book.
Some of the people who cheer/roar for us when we accomplish even minor things.
Or understand my twisted sense of humor, because most of them have the exact same dose of sarcasm.Some come from far away places-We had people from Australia, Austria, Ireland, Israel, Mexico, Cyprus, England, Africa, a crazy big group from Canada and other countries represented this year!
Some are from your backyard. Some are so sweet that you want to pack them up and take them home with you.
The children especially leave huge marks on your heart. I love these two.
Some have an alarming amount in common with you.
But with all of feel a whole lot of love. This is my favorite part of the conference. Making connections. The internet is awesome, but I will always prefer to "friend" someone IRL.

Tuesday, August 21, 2012


Home from the Dravet Syndrome Spectrum Disorders 4 Biennial Conference! I have been working for months and months to prepare for this and I was so busy the entire time. I am so glad that we got the opportunity to participate in something that we are passionate about.

When I was deciding what to pack, I had to conclude that I have a severe addiction to stripes. It might be hereditary.I spent a lot of time putting together these bags for the families and doctors. Special shout out to my amazing committee!I even had Dr Dravet herself sign my book! Can you believe that she didn't have a copy? I was pleased to be the person to present her with a copy of her own book. It was amazing that we were able to give these to every family.
She is not a fan of getting her picture taken. I got a better photo later on in the week. So much happened! We saw old friends, made new ones and learned a lot. I will need to break it all up or the post will be a mile long!

Monday, August 20, 2012


We started Potassium Bromide a few weeks ago. This is a medication that is considered "old school". It was used for hundreds of years, but fell out of doctor's circulation when bigger and better Anti-Epileptic Drugs (AEDs) came along. It is still widely used by veterinarians, to treat dogs with epilepsy.

Since Cole is severely intractable (hard to treat) our treatment team is at a crossroads where we are ready to use out-of-the-box treatments. Bromide takes a very long time to reach therapeutic level, about three months. We are going extremely slow since Cole is so sensitive and Bromide has an incredible half life. It stays in the system for weeks, versus hours like other drugs. You can not get it at your local pharmacy. We have been using a compound pharmacy that is out of state to make it for us.

So far, it has been good. Potassium Bromide is a salt, so it dissolves well in warm water and is easy to push through Cole's g-tube. We will just have to be patient and see if it makes a difference. We are really looking to decrease myoclonics, since he is still having on average 400 a day.

One concern was that Bromide can interact with chlorine and patients are cautioned to stay away from chlorinated water. However, there is no research to back this up, just hearsay from an organic chemist who is certain that the reaction between chlorine and bromide would cause an effect similar to the bends in SCUBA diving. Our doctor gave us all of the necessary precautions and warnings. Us being us...we tried it out in lots of different environments. We poured three capsules in the pool, waiting for effervescence. We tried a cap in the hot tub, to see if increased temperature would cause the bubbles. We called vets and asked if they had ever heard of cautioning pet owners to keep their animals away from pool. Their opinions and alll of our tests turned up negative. We then decided to not totally submerge Cole and took him to our local splash pad.
He had a good time testing our hypothesis!
No problems. We showed the pictures to his doctor and he laughed. Apparently, we have proved ourselves. We always keep a close eye on Cole anyway when he is swimming. I am just glad that we didn't have to take something else that he loves away from him.

We also started Prevacid, after finding that his upper GI series revealed he is having reflux, which could be the reason for his gagging all of the time. Since starting both of these medications, Cole's seizure control has been better. The Bromide is certainly not therapeutic yet, and Prevacid is certainly not an AED. Who knows?! I am just grateful that it seems like we have broken out of the cycle of needing rescue meds every day.

Monday, August 13, 2012


We finally got to meet our friend Evan and his dog, Mindy! They just got home from 4 Paws for Ability. You might recognize Evan from his appearances on Good Morning America, stories in the Washington Post and other publicity based on his book "My Seizure Dog".

I have actually been friend's with Evan's mom for a long time, even before we moved to D.C. We are so happy for Evan and the impact that he has made. Slugger really enjoyed getting to play with Mindy and show her his home turf.We actually met Mindy when she was just a ball of fluff, on the day that she and her brother came to 4 Paws for Ability, while we were there getting Slugger. It was great to see her all grown up and with her special boy. Cole really enjoyed getting to spend time with Evan and showing him all of his toys. We can't wait to see Evan and Mindy again soon!Mindy's television debut was last week on FOX News, you can see it HERE! I teased Evan and told him that we were so lucky to have celebrities at our house ;)

Friday, August 10, 2012


We took Cole to the dentist for the first time! Based on recommendations online, I chose a dentist that was known for doing well with special needs patients. The office was beautiful and had a lot of distractions for kids. The staff was wonderful and we really liked the doctor.Cole loved getting to blow up gloves with the air. It took him a while to settle down even though there was a magnificent dragon coming out of the wall and he is obsessed with dragons (and underwater creatures) lately. They were extremely accommodating and Cole did not cry.
The doctor was not worried about his two teeth that have ground down during seizure activity. She said to worry only if we see a visible nerve.

We go back in 6 months!

Wednesday, August 8, 2012

Brotherly Love

We love it when we have a chance to visit Slugger's siblings. Lucky for us, two of them live in the D.C. Metro area. We stopped by and saw his sister, Samba after a doctor's appointment. They really enjoyed running around and Samba's favorite-wrestling!It was hard to get a picture, they were moving so fast! I think it is great that these two still recognize each other. They act completely different than if they were with another dog. Even when Sid's family member came to our house, without him, Slugger acted exactly as he does when he is with Samba or Shaggy. He could totally smell his brother and was really disappointed when he could not find him. He moped for an entire day after his scent left.
We love Samba and her family. Her mom even came all of the way to our house to help me clean. She knew that this summer has been hard and I have been backsliding on housekeeping ;) I really appreciate friends who can read between the lines and who sacrifice their time and energy to serve us.

I can't believe that the S Litter is going to be 2 soon. Time for a party!

Tuesday, August 7, 2012

Lighten Up

Kids, it seems like it has been downright depressing around Warriors lately. I'm sorry it has been a little towards the dark side. Yes, it has been rough lately and it seems like our universe is revolving around seizures, but we still find time to laugh and do semi-normal stuff. Because who ever said we were trying to be normal :)

Things like making Bacon Cheddar Scones three times in two weeks. Um, maybe this is why my pants don't fit? I curse my friend for introducing me to them.Things like trying a new, matte color and trying to prove to myself that red lipstick is a state of mind. Hey, maybe if I can rock it in Target I can rock it on date night.

Or having doggie family reunions after another marathon doctor's appointment. The bone health clinic is SO not on my good list. Slugger was so happy to play with his sister, Samba.
Welcome to DC, where ghetto gas stations are the norm. They didn't even try duct tape, just went for plain old clear packing tape to hold it together. Apparently, the owners were not raised on a farm, or they would have done it right the first time. *wink, wink*

We will try to take a little time each day to lighten up. You should too ;)

Sunday, August 5, 2012

Dr Niki's Report

There have been questions about clarifying Brian's injuries. My Emmy screen play was really not clear enough and I tried to not make him look foolish. Yard work can be dangerous ;) It was more about how crazy our day was. I am glad though that so many of you have asked about him.

He finished cutting up the tree. Then he got attacked by a great white shark that came out of nowhere! maybe, not a shark. But that would be an awesome story and one that my dad would totally tell ;)

He has 14 small puncture wounds on one leg, right by his knee, from a shark tooth hand saw. I will spare you pictures. There really was the blood, the almost fainting, the banging on the door, the seizures. I told you, no one could make this stuff up. He has a nice limp and we are watching it for infection. AND he will probably continue to live up to his reputation of not being very "handy". Hey, the man has many other talents.

You know that you can always tune in for more! We usually like to be a comedy, but lately it has been a drama kind of series. Coming up this week-Cole finally gets his wheelchair that I ordered in April. We head back to the bone specialist and Cole's first trip to the dentist. Gonna be a nail biter! haha

In good news: It is 11:00 pm and Cole did not have a major seizure today! Plenty of small ones, but hey...we will take what we can get! It has been 5 weeks with only 4 days that we did not need rescue meds. We can only hope that he is turning a corner.

Saturday, August 4, 2012

The Day We Should Have Won An Emmy

Category: Best Drama

No, really...we had an episode of ER in our living room. Also, Dear Lisa-be prepared to laugh.

Set the scene-After a torrential storm that left millions without power, the streets are strewn with carnage from the trees that are plentiful. A house down the street has a hundred year old oak in their garage. The family car is ruined. (side note: *cough* the storm was four weeks ago, but we are being dramatic here :) back to the story) The father, we'll call him Brian, goes out to the yard to survey the damage and finds part of the fence has fallen down and there is a 20 foot limb that graciously left his family unscathed in his back yard. He heads out with a shark tooth hand saw, to make the clean up more manageable.

The sexy, intelligent wife, Niki (Hey-I can be dramatic too!) starts to clean the inside of the home. Keeping watch over their child, who wants nothing more than to be out with his father. She has to run outside to bring him back, twice. She carries him in, saying that it is just too hot for him. So she locks the door to put one more barrier in between him and the outdoors.

She goes about her work and suddenly hears a desperate pounding on the door and screams from the outside.

Brian: Open it! Hurry!

Niki: I'm coming! I'm coming!

She sees blood streaming down his legs, gushing between his fingers. Has a brief flashback of an incident where her father accidentally cuts his face open with a chainsaw.

Unlocks the door and throws it open. Brian staggers into her arms. She leads him to a seat in the kitchen.

Niki: Breathe! Just settle down and breathe.

Brian's head lolls to the side and snaps back up. He moans.

Brian: slurring-I'm okay.

She grabs towels and removes his hand to see that there are multiple small cuts. There is blood all over her hands. She applies pressure and tries to slow the bleeding. Knowing that her husband is prone to fainting at the sight of blood, especially his own, she tries to keep him talking.

Niki: Stay with me!

Brian's eyes roll back in his head, his face is ghastly white and his breathing is fast. There is a noise in the background.

Brian: He is seizing!

Niki has to make a decision, lead her husband to the floor in case he passes out, or run. She chooses to run.

Brian: Slurring-I am okay. Get him.

Niki runs to her son who is having a seizure and scoops him up. She races to another level of the home where the oxygen is located. His face is blue. She tries to wipe her bloody hands on her pants. As she attends to the seizing child she continues to try and talk to Brian, who is on a different floor, making sure he is conscious. The only response she gets is moaning from above. She sets the little boy up with a pulse oximeter and prepares rescue medication. She chooses not to use it, since it looks as if the seizure is going to stop on its own. The seizure lasts for an agonizing 4 minutes. As she attends to the child, her extensive training is guiding her instincts and she is calm and efficient. After it stops, she makes sure he is okay, lays him on his trusty Service dog and runs upstairs to check on her husband.

Niki: You okay? Just don't look at it.

Brian: I almost passed out.

Niki: I know. Just hold this here okay?

She runs back down to the child, who is conscious and asking to watch television. He seems to have incredible strength and tries to stand. He wants to see his dad. She carries him back upstairs and situates him on a sofa, out of sight of the carnage in the kitchen.

Niki doctors Brian's leg, that is so sweaty it is hard to get a bandage on it. There are multiple small, shallow cuts and he will not need stitches. The cuts are starting to clot, so the bleeding is slowing, mingling with the sweat. Even wiping it down with a cloth is not enough to properly get a bandage on. She asks if he can stand and he nods. She leads him upstairs to the bathroom. She grabs the child, calls the dog and situates them on the floor. She proceeds to help bathe her wobbly husband whose color has returned. After the water drains, she doctors the leg again and helps him out and into the bedroom. She places the child on the bed while Brian dresses.

Niki: *sigh* We all just need to take a break. *laughs*

Pan out-Return to scene of Niki three hours later eating stale cheesecake and watching the Olympics.

Brian: *from a distance* NIK!

Acknowledging the cry, she runs into action.

Niki: Seriously? Again?!

She runs downstairs to find the child seizing yet again, this time harder and longer. Oxygen dips, the child is blind. Meds are administered...twice. There is tension in the air, but the team is efficient. They even work with the dog, commanding him, training him to bark and rewarding him with hot dogs.

Brian: This one is bad.

She nods her head and agrees.

Niki: Poor kid.
Mommy's here. I'm here sweetie. I'm going to help make it better.

The two work together as a great team. Brian runs back and forth for various things. After ten minutes, the seizure stops, rendering the child drooling profusely and unable to speak for an hour afterwards. The parents attend to the child who remarkably has great motor skill control.

Niki's stale cheesecake decides to attack her digestive system and she clutches her stomach, runs into the bathroom and shuts the door.
Close scene.

Open on lights going out in the house. Scan every one going to bed after hugs. Their faces look hopeful for a better day tomorrow.

Music plays in the background. Fade out.

No one could make this stuff up.

Thursday, August 2, 2012

Going For Gold

In the spirit of competition, Cole has decided that he wants to be the first in line and the best at everything. Even if that includes things like requiring his mother to call 911 and not get any more than 5 hours of sleep per night.

He is a champion, a warrior, much like the athletes in the Olympics. His story is more like those that qualify and are just happy to have the chance to be there. Not expecting to make the podium, but reveling in the experience.

We have kind of been like the gymnast that falls on their behind. Get up, wave and smile...and do it again.

This year has been wild, but the summer has just taken it to a whole new level. This child has needed rescue meds, every day. Even if I try to hold off and let the myoclonics just work themselves out, there is a tonic-clonic, or a complex-partial. Even though some of these facial complex-partials are resolving before I can get there with the meds, the "aftershocks" last for hours. Cole is always trying to be different. His brain is always trying to be the star. Seizures will leave you more exhausted than any workout.

Last week, I called 911 twice in 3 days. That has not happened in I don't know how long.For the sake of record keeping, which has totally fallen by the wayside: Cole went to the ER, after a 30 minute non-convulsive status seizure, with a 103.5 temp, even on Tylenol. He had been having fevers for a couple of days, but for him...that's normal! There were no other signs of illness. It is so hard to tell if Cole is sick, because he does not feel pain the way we do and he never complains. I have no idea if he is hurt, I just have to guess. The doctor said he MIGHT have an ear infection, but with a temp that high, ears just naturally turn red. They put him on amoxicillin, which he has had before and sent us home after his fever went down. That was technically Sunday morning.Warning:don't become friends with us unless you can handle an emergency phone call at 2:00 in the morning :) Thanks, S!

Monday, he broke out in a rash and it spread head to toe. It was not an allergic reaction, but a summer stomach virus. Had nothing to do with the anti-biotic. His ears are fine. Fun! Now the virus has taken up residence in his g-tube site and is causing all sorts of drama.

I have not been keeping score because honestly I would just be sitting with a notebook all day making tally marks. Statistics are dismal right now. SO-record keeping over.

There are times when I think that Cole is trying to make seizing an Olympic sport and he wants to stand on the top of the podium, proving he is the best at it. So many types! So many lengths! Different times, world records! He is a star :) I would hold him up there, but honestly this is not an event anyone should have to medal in.

However, we still have our champion of our hearts and his winning smile.and that is better than any gold medal.
Photos by Capture Me Candid