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 1^st.  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 2^nd 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 2^nd 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

The Dog Days of Summer

Our summer started off quite interesting, with a huge four day road trip. It only got more interesting. Again, we are never boring! More details to come on the little boy, but here is a little tidbit on Slugger.

One night, Brian noticed that Slugger was unusually thirsty. He thought he must just be hot, he is covered in fur after all!

The next morning, Slugger once again went straight for his water bowl and drank like he had been in the desert. Again, must just be hot-it has been 100 degrees in the shade, plus humidity around here. He ate his breakfast and went to the bathroom, so he must be fine.

We noticed that Slugger was kind of mopey and was laying in corners that he did not usually frequent. However, no real extreme markers that something was wrong. Then he had an accident downstairs. That has not happened since we first brought him home! In the commotion, we learned from our nurse that he had thrown up in the house the night before while Brian and I were out at Costco (recent version of a hot date). That would have been good information! So we know that Slugger is not feeling like himself. I keep him close and watch him.

As the day goes on, he is still somewhat sluggish but will come when called and has been outside. Dinnertime rolls around and he refused to eat. MAJOR red flag! This dog is totally motivated by food. Usually he practically inhales his dinner. In training, we were even told, "If Slugger doesn't eat, you know something is wrong". I went over and started to examine him. Since we are working on bonding and I do not touch Slugger, I did not notice that his abdomen was distended earlier. I felt and it was tight and bloated. I was praying that his stomach had not flipped and knew that we had to go to the hospital. I hoped that it was just bloat, but had no idea what he could have eaten. Brian got home and Slugger and I headed to the Pet ER. Cole was super worried and anxious about where I was taking him. He has never really been away from him, especially at night.

I do like the facility. They make it seem like a posh hotel with couches, nice rugs, arm chairs and art every where. They even have oncologists, neurologists, opthamologists, internal medicine doctors, etc here...for pets! The desk is super long with all of the departments, but we wanted this one.
We checked in and got set up in a room. Slugger was very obedient, but I could tell he was miserable. They took him right back for x-rays and then we had to just hurry up and wait. We hung out in the nicely appointed room while we waited for results. They came back and asked me if I was missing a loaf of bread. What?! The doctor actually said it is quite common. Slugger has been naughty recently and has been eating things that have been on the floor, but I don't think that a dog without opposable thumbs could open my fridge :) His food is in a locked bin in the garage and anything he gets is strictly monitored. One cup, twice a day and only gets treats from Cole or when he is tracking or for seizure alert. I don't think that he could have eaten a huge amount of anything without me knowing!
The x-rays did not show any metal, that is good. Plus, his stomach was in the right position, also good...it was just 3 times its normal size! I saw the films and it was indeed, "Remarkable and absolutely incredible" as the doctor kept saying. Slugger's stomach was so bloated that it had pushed his intestines and colon clear back in to the rear of his body. I would have never really known, had I not felt his stomach. Now I have a kid AND a dog who will not whine or cry when they are in pain. The x-ray could not show exactly what he ate, it just looked like "granular material" aka food. Sluggie is known for loving plastic, but it did not seem like there was any hard object in there, that they could see. I can't wait for technology to be able to just peek inside our bodies without having to cut us open. SO-no emergency surgery for Slugger. Relief! They took him back and gave him huge amounts of IV fluid, so he looked like a hunchback. The doctor wanted to keep him overnight since he would have to go out multiple times to relieve himself of all of that stuff in his stomach. He might throw up and have diarrhea. There was heavy medication on board to help get things moving. I told him that I was not scared of bodily fluids and that we could handle it at our house if he didn't think there was any other reason to keep him. ;) I knew that Cole would be anxious without his buddy and dollar signs were flashing in my head at an overnight stay. So, they set us up for a follow up x-ray the next morning, wished us luck and we were on our way! Slugger almost puked in the car on the way home, but held it in. I had the windows down and was driving as fast as I could without breaking the law just trying to get him home. He must have had nausea like a first-trimester pregnant woman. I laid out a sheet for Slugger and kept him in my room, taking him out multiple times that night. When Cole woke up, he was so happy to have his Sluggie back!

We went back for the follow up x-ray and his stomach was empty. We will never know what he ate, there is no evidence that is was anything abnormal. I am just glad he is okay. All of my boys keep me on my toes! I feel like Ellie from UP with my fist in the air and screaming, "Adventure is out there!" Come and find it at our house :)

A Major Case Of The Sickies

Now that February is over, I can genuinely say that at least one of us were sick...the entire month.

Cole missed over two weeks of school due to illness. Fevers, coughing, the works. I am so glad that we did not end up hospitalized.

Daddy actually had to take a sick day for himself-that never happens.

He also had to take a sick day for Mommy. That, is not as rare.

I am done with the vomit, stomach issues, migraines and body aches. Oh, and seizures.

My brain has been so fuzzy that I have not been able to focus on anything. I have three articles that I should be working on, but I can't gather enough brain power to write. I literally spent four straight days in bed and did nothing. It was too much to even watch tv. I did, however, play on Pintrest a lot :) Doesn't take a lot of mind power to look at cute stuff sporadically. Pintrest is evil and wonderful all at the same time.

Here is to hoping March is much healthier!

Oh, Murphy and Your Law.....

I escaped to the Fortress of Solitude (aka the movie theater) last night, alone, just because I needed a serious break from reality. Thanks again to my friend Ruth for suggesting that I take a time-out there.

As I was waiting for the previews, I thought of Mr Murphy and his law-anything that can go wrong, will...and then I laughed to myself.

I feel like I should be walking billboard for this adage, lately. Especially in the last 72 hours. If I were Jewish, there would be a lot of 'Oy' scattered throughout this post.

I mentioned that we are in the middle of an intense med wean. We have now had to come to a standstill. The road just does not fork presently in order for us to take another direction, at least until after we get home from Ohio.

Cole is not doing so hot right now, there are still a lot of seizures and 4 out of 5 days at school last week he needed rescue meds and oxygen. His sleep has been wack-a-doo, his appetite so-so. His behavior...still bad. Until further notice, being outside is now off limits. It has been a definite trigger.

We can not go any lower on the Keppra without adding something else, because that will cause him to have more big seizures. Less behavioral issues, but the larger ones and overstimulation problems have definitely increased since the initial wean of this med.

We can't start the Clobazam because 1. It will change his body chemistry and therefore his scent...not good for the dog right now. 2. We always have at least a 2 week adjusting period when starting a new med. Sometimes it's a honeymoon, sometimes it is really bad. Either way, we will not be able to tell what is what when we add a new environment and being really overstimulated at training into this equation. Is it the meds? Is it the temp? Is it? Is it? 3. Some people see a decrease in seizures when they first get their dogs. Not seizure freedom, but a small decrease. We need to know exactly what is going on with his baseline so we can see if he changes. 4. It just plain might not work. It's a lot like two other drugs that we have tried that actually made things worse. So, we just have to hold on to our hats and pack a lot of rescue meds around. Dog-who-is-yet-to-be-identified...we're going to give you lots of practice.

All the while I have had the lovely experience of shuttling back and forth to the dentist and being on antibiotics. I have an infection somewhere in my mouth, hopefully not IN my tooth. I probably need a root canal and a crown, and get this...our insurance is not active until Jan. 1 (that's a fun story)! I have an appointment with an endodontist on Wed to see just how much work needs to be done. Y'all know that mouth pain is no bueno and in turn I'm averaging around 4 to 5 hours combined sleep at night. I might actually be flying to Utah over the weekend so I can get my procedures done first thing on Mon. Turns out, without the help of insurance...it is WAY cheaper out west. Even with the plane ticket. Plus, I trust our guy out there. Here, is uncharted territory. Who knows, maybe I'll be able to throw in a lunch with my besties? Now, I am also having pain on the other side...say what?! More info on that once I see the endo on Wed. Maybe he will know what the heck is going on in there.

I sent a 4 page letter to the Superintendent, Principal and some other important people on Thurs about the dog and the law. Have not heard a word back. We had to call a plumber. The car needed a bunch of work done in order to pass inspection. We had to steam clean our couch. Still working on the oxygen fiasco. Getting closer to a solution. Six months later, but still, progress! :)

Sunday, Cole had a small seizure as he was going down the stairs and it threw off his balance. He tripped and fell down the last two or three. He kept saying his foot hurts, there is a bump on it and he was still limping Monday. Plus, an increase in seizures which means he is either in pain or getting sick. Nothing else had changed. So, we took him in for an x-ray, which was clean. Does this sound familiar? Last July, we let it go and came back 4 days later to find there was a stress fracture, (this is the other foot). With his history of high pain tolerance and a previous break, we were not going to take our chances. SO-Cole is in a splint and has to be non-weight bearing until we can see the pediatric orthopedist on Friday. Cole. Non-weight bearing. This is going to take some creativity.

On a positive note, I have been cooking a lot lately. Unfortunately, it tends to happen when I am really happy or really stressed. Been cranking out some good stuff. I watched a Doris Day movie in my bed. Cole giggled. None of us are IN the hospital. Our couch is clean! I think we have a couple of nurses with good potential (now if we can just fill all of the shifts).

It was so nice to just sit in the dark, with hardly anyone there, and eat my sandwich and cupcake in peace last night. FYI, eating a cupcake in the dark is dangerous. I had crumbs in interesting places :) There was no one to take care of. I was forced to turn off my phone, no waiting for matches, e-mails, calls, or interruptions. Just me, turning my brain off and becoming engrossed with the story. It has been so long since I did something like that. Superman goes to the Fortress of Solitude when he needs to be alone. Me, I'm going to the movies. Murphy can't bug me there, even if it is only for 2 hours.

*I'm so frazzled that I was speaking about yesterday, today, etc...when some of this stuff happened over three days ago. Mercy! I have fixed it.*

Presents

While trying to convince Cole to create a sample for the nice people in the lab yesterday, I took him around town so we didn't have to go home, and then come right back with the yellow stuff. I don't blame him, who wants to have a bag attached to their body? Still, if you have been reading Warriors for any length of time, you know that he is practically famous for not cooperating when we need him to perform whether it be blood, or any other type of bodily fluid. Yesterday, only two pokes and one blown vein for 7 tubes of blood. Hallelujah! Compared to the multiple sticks and multiple trips last time, this was a cake walk. Now if I could only get him to go on command! TMI.

I took him to a little diner, since I had to wake him up early and these were fasting blood draws. No food, no meds and little sleep makes for an interesting morning, but I didn't want to have to go home and turn right back around. We had a lovely time, just the two of us. He had pancakes with some orange marmalade and I had caramel french toast. Compared to other restaurant nightmares, he was pleasant. Yes, we still had to administer meds while waiting for our food, he still stood on the banquet, was banging on the window, yelled greetings at the other customers (including the ones who were on the other side of the window) and dropped multiple items of silverware. However, he did not lay on the floor or scream bloody murder once. Like I said, it was lovely. What a gift to be able to take him to a restaurant and watch him eat a meal. No major seizure, no special diet, just hanging out with my special boy.

After our little breakfast, he had still not cooperated with his sample for the UA, so I took him to a thrift store. There, with a little digging, I found three precious gems. I have read the entire Mitford series probably 3 times. I always borrowed from my mom, grandma or aunt. However, they live too far away to peruse their library shelves. For $1 each, I found the first three books. Tonight, I am going to curl up with Father Tim and visit a little town that has characters who have become like family over the years. They each have their struggles. Their likes and dislikes. Some of them are downright crazy. Overall, the feeling you get from them is love. It is so nice to just escape to a nice little, charming Carolina town and pull yourself out of the real world; even if it is just for an hour or two.

I finally gave up trying to get Cole to cooperate. We headed home so we could let in the nurse who was arriving for her shift. Wouldn't you know, the minute we got through the door, he went. I should have just come home in the first place! At least I didn't have to pack him back into the car and tote him with me to the lab. It was wonderful to just leave him home with the nurse and not have to worry about putting any additional strain on him. It had already been a long day and it was only noon! He got the privilege of taking a nap, I got the privilege of taking a sample to a lab, alone. Sometimes we all have to give presents to ourselves, even if it is $1 books and 45 minutes of alone time in the car:)

Diagnostics

Have an appointment for Cole today. Something's up, I just don't know what.

Back to being a detective.

What do excessive thirst, interrupted bowel routine, lethargy, poor appetite, constipation, excessive urine output (that is colorless), decreased ability to handle overstimulation, increased myoclonic activity and fever spiking equal??

I don't know either.

Hypercalcemia? Skeqwampus depakote levels? Unbalanced nutrition?

Your guess is as good as mine :)

Fog

The thick fog of illness is being lifted somewhat, just leaving a thin haze behind.

You know, when you feel like everything is fuzzy and you can't really see from one moment to the next. All you try to do is survive, so you can break into the light eventually? Everything gets put on hold, laundry forms mountains and all that really gets accomplished is basic needs. You just lay in bed, occasionally sipping clear liquids, and sleeping. Rarely do you get up for anything but the bathroom.

Eventually you can focus enough to watch television, but nothing that requires thinking too much. Reading is out of the question. It is too laborious, and that is saying a lot for someone who prefers a book to almost anything else. Little by little, there are breaks in the heavy mist and you can imagine being vertical again.

I've spent the last few days watching way too much HGTV and daydreaming about the day when my furniture is not from the early ancestral period. I've also convinced myself that I am Canadian, and not a European mutt like my genealogy describes. Everything Sarah Richardson and Candice Olson does is pure genius and I have thought so for years. It was kind of like getting to store up a design feast on my DVR and have Thanksgiving Day, instead of a late night nibble here and there when I had the time ;)

Cole is starting to come around. He has more strength, but still just wants to lay around watching TV all day. He is eating a little, enjoying this new freedom of being off the diet. The doctors suggested we take him off and just concentrate on controlling his diarrhea for now. So, he is having a great time with food on demand. Such a new concept for him. He's loving the experience of being able to have as many saltines as his little heart desires, and all flavors of sugar-free jello. Oy, it is going to be hard to go back to the scale.

His g tube has been bleeding a lot, and has formed granulation tissue for the first time in months. It has us slightly worried and we are waiting to hear from the doc about what to do. It was a little loose after losing weight, but it has never just started to pour blood since the actual surgery. He is full of surprises and keeps us on our toes!

Hopefully we can get healthy enough to try and take him out to the backyard for a couple of hours. The weather has been gorgeous today (so we hear), but we just stood in the doorway and watched the squirrels. It is going to start to rain again tonight, but it is forecasted to be nice again next week. I guess April showers really do bring May flowers out here. Usually we are used to still having snow on the driveway! Maybe I'll ask for wellies for my birthday.

Risky Business

*warning: this post is a little graphic and contains multiple mentions of body fluids*

We took Cole out last weekend. We were brave, and decided to venture out and get some much needed social interaction. We took a risk. Every day we have to make decisions based on risk. I practically bathed Cole in anti-bacterial and we set off.

We had a great time at the Purple Day festivities, so much so that we were feeling good about ourselves and decided to be brave again the next day and take Cole to church for a little bit. However, in those short 45 minutes, he was exposed to some sort of illness. Another one of our everyday-life-experiences turning into life-threatening-dramas.

Tuesday, he started having diarrhea and did not want to eat much. This has happened other times we have gone to church or public places, where he touches things and then puts his hands in his mouth no matter how many times I wash them or tell him not to. I wasn't worried.

Wednesday, at 1:00 am he threw up, in his bed. It was everywhere, even in his eyelashes, then he proceeded to puke again on our carpet downstairs while I was trying to clean up the mess in the bedroom. He was having clusters, so we gave him Diastat and we all piled in my bed around 4:30 am. The entire family slept through two alarms for Daddy at 5:30 which, if you know me, is a BIG deal-Brian, not so much. Wed proved to be a hard day for Cole, with multiple clusters, high fevers (highest recorded was 103.8-this was 30 min after a tylenol suppository) and a 49 minute status episode which took Diastat, Klonopin and Versed to stop. His O2 dropped to the 60s, but we were thankful that he didn't have another 10% episode. My entire house smelled like death warmed over, something that even Scentsy can't mask. All the while, he still had diarrhea and no appetite, but I was giving him fluids through his g-tube. We knew from previous experiences that the hospital really could not do much for us except monitor him. After talking with our doctor back in Utah, we decided to stay home. We've done this before.

Thursday he seemed much better. He even ate a little bit, but it came right through him. We had company coming into town and he was lively and excited. Once they arrived, he turned into the happiest kid ever. I actually teared up when he was playing with his cousin Katherine. He rarely gets to play with other kids and he was having such a good time. No vomit on Thurs and the highest fever was 101.5, so I thought we were on the mend. Friday proved otherwise. He kept on having massive episodes of pure liquid diarrhea. 5 times in 3 hours. He was passing bile through his stool, even the long, green kelp-like strands that hang out in your intestinal tract. Even pedialyte through his tube would come out 20 minutes later. If any of you know c-diff, that is what our house smelled like. His speech had been impaired since the big seizure on Wed and was not bouncing back. He had not had a wet diaper all day. I was starting to get worried about dehydration and consulted with our doctor in Utah. She validated my concerns and told us to go in. I knew he had not really had solid food since Monday and was probably in need of some IV fluids. It can be very dangerous for keto kids to be dehydrated, as they can go into ketoacidosis (basically ketones become poisonous).

So, we had to schedule Daddy to come home (which takes an hour) and then pick him up at the metro since there was not a train running at the time. Drive over to the train station, get the GPS out of his car, (no way we could have made it otherwise) and then drive into downtown DC. I got to see the cherry blossoms on the drive-by. They really are as beautiful as everyone says. My grandparents would love them. Did not get to stop and take pictures, sorry! Our hospital experience was not so great. See my review. On top of all of this, Cole decided to be friendly and share the love.

I started feeling nauseous in the ER, but with my gallbladder issues I was not too worried. Besides, hospital food always tastes awful. My back was killing me and I thought I might be having a kidney stone, a long time nemesis of mine. Shelved the pain and focused on trying to get my boy admitted. Had a terrible time sleeping on Friday night, but did not worry too much about it-we were in a hospital! During morning rounds, I was standing outside the door with the doctors, discussing Cole's case and I felt an overwhelming wave of nausea. Now, I am a pro at throwing up. I did it every day for 5 1/2 months straight while I was pregnant. I learned how to puke while driving, while in a meeting, on the phone, just about anywhere and keep going about my business. I just held up a finger and told the doctors, "Excuse me, but I am REALLY nauseous. I will be right back". I proceeded to walk into the bathroom, lose my awful hospital cafeteria dinner and then walked back out to the conference. I had watery eyes and probably looked like a zombie, but I told them to carry on. The vertigo kicked in later.

I continued to throw up throughout our stay and the rest of the day. I could not even hold down ice chips or water. Oh, dry heaving, my long lost companion-why did you come back for a visit? Needless to say, it has been awful. I have no strength and have lost over 10 pounds. Not a healthy, recommended way to lose weight, but definitely effective. I have been drenched in sweat from fever, enough that it is making my hair curly. The hot, cold, hot, cold is not particularly enjoyable. So sorry Facebook friends, I didn't update when we were released because I could barely hold my head up! I will say this though, I am so grateful for our church. It is an immediate built-in support system. With a few texts and one phone call on Friday before we headed out to CNMC, we had everything taken care of. Someone came to walk my in-laws dog, as they were out sight seeing. There have been phone calls, e-mails and text messages checking in on us. Our bishop was preparing to go to Dubai for work the next morning and was going to come into town and see us. We waved him off, but were touched that he was willing when he was obviously so busy. People have brought meals, came to visit, and offered to do anything that we needed. We found out that Cole did get sick at church, through people reporting that this particular illness had been floating through our ward. At least we know the source this time, but doubt it landed anyone else in the hospital! People even offered to come into town and pick me up, to bring me home, when they heard I was now sick and discharge was being slow. I am glad that I did not take them up on that offer, because I threw up three times on the way home. However, I know that they were sincere. One friend even offered to drive 9 hours to come and help me out. There were offers to take me to the ER since obviously Brian had to stay with Cole. This is just how we are. We are programmed to pull together and help each other out when needed. Even if it is not a medical emergency, it is just part of our culture. We have been here for a month, and these people are practically strangers, but we immediately are a part of a family; and I know that it would be exactly the same any where else in the world that I moved. For someone in a new town, new state and pioneering through a new hospital, it was a comfort to me to have something so familiar.

Cole is still sick today. Lethargic and weak. Still has delayed speech. Still has diarrhea. I really, really do not want to have to take him back to the hospital. I can finally stand up for a short period of time and have kept down my first bit of food since Friday. Miraculously Brian seems unscathed.

So, do we take a risk and continue to expose Cole to the outside world? It has smacked us in the face so many times that it just feels safer to never leave the house again. Every decision that includes passing the front door will have to be weighed, but I can't be a hermit forever. I just can't. I can't control whether people take their sick kids into public places. I can't control what the weather is going to do on a certain day, to affect Cole's seizure activity. There are a million things that I can not control. P.S. for a control freak, this has been hard to let go of .

It all boils down to the risk. Is it worth it? All for a sense of normalcy? Most of the time, yes. Other times, I am not so sure.