Reason For The Season

Things are starting to wind down around here. We are going back to our "nice and boring, sequestered life" as someone put it ;)

We have had a few nice surprises in the last month. The g tube is now 4 weeks old, and has been more beneficial than tedious. The childrens group from our church wrote Cole Get Well cards the week he had his surgery. It was a thoughtful gesture, as he has not been able to attend Primary for the majority of this year.One of our readers took a lot of time and care and sent Cole a package. She was introduced to our blog through a mutual friend when we were fundraising for Cole's service dog. Inside was a beautiful pieced quilt, portraying some of the things that my little man loves best. Bubbles, CARS, football, basketball, dogs (of course) and purple and orange to represent Dravet. The time that she spent thinking about this project and then actually doing it, brought tears to my eyes. Thanks Y, all the way from Texas!Cole really wasn't interested Christmas morning, like I thought he would be. He finally understands the concept of presents so I thought he would be elated to see a room full of them. Nope. Too many people; too much noise. He ran away and wanted nothing to do with the festivities. Brian had to stay with him as all of the excitement produced a small cluster and I ended up unwrapping his gifts. Once he was presented with the new toys, unwrapped...he was okay with it ;) Favorite toy=the blender.We took cues from his therapists and got things that served multiple purposes. It's quite an adventure to purchase a toy and think, "Is this going to help with fine motor skills AND critical thinking skills?" and debate within yourself if it is going to be useful. The blender was not so useful, but he is obsessed with mine. Thanks grandma!

We were so grateful that we were able to stay with our family for 5 whole days and part of another! It was a miracle in my eyes. Our car was packed to overflowing with all of the medical supplies, IV pole, scales, etc. but we did it! He only needed rescue meds twice while we were gone, which was pretty good withstanding all of the stimulation he was going through. We even went to the park and lasted for 30 minutes before he started seizing. It was great! Being together was what mattered most and it happened.

Giving is much more fun than receiving. Brian also had a birthday during all of this madness! He got a bunch of grey socks (his only request) and a couple of other things. He wanted an ice cream cake, so I was glad to give it to him ;)Wow, we're getting old.May we all remember the main reason for this time of year.

Living On The Edge

We have had an epic week around here. Lots going on, good and not so good. However, things have started to feel a little bit like Christmas. We took Cole to the mall on Friday. He did great! We decided to risk it and take him to our church Christmas breakfast on Saturday morning. Once again, he did great! There have been lots of small seizures, but nothing big since Wednesday. Apparently, PCMC is just stressful. I even baked yesterday. Pumpkin spice whoopie pies, brownies with Christmas sprinkles and peppermint meltaways...all in miniature. Yum! Then, I gave it all away ;)

SO, we pushed our luck and went to church as a family today. This is the first time in at least 9 months that we have all been there at the same time. The last time I took Cole was in June, when Brian was out of town, and we ended up in the hospital with something he picked up two days later. It was a musical program and we sat with friends so we could play "pass the baby". He started having a small cluster at the beginning, but then pulled out of it so we stayed. He did really well for the first hour, and then was just done and missed the last speaker. Meetings just shouldn't go over I guess ;) I went to teach my Sunday School class and thought that the boys had gone home. I was surprised to come out into the hall afterwards, to see them just passing by with a quick wave, off to talk to someone else. They spent the entire time socializing! I then forced them to start heading for the car since I felt like I was breaking my own rules. I woke up this morning with just a shadow of a voice and it was too late for a substitute. I am such an advocate of "If you are sick, stay home!", that I felt as if I should have a sign around my neck saying, "Don't come near me! GERMS!" The chorus of coughing in sacrament meeting did nothing for my anxiety.

Hopefully this cold doesn't stick around for 2 1/2 weeks like it did last time. I would really appreciate an illness-free holiday. Here's to hoping that we can have more adventures in normalcy this week!

Our Christmas Wish

We were brave and took Cole to the mall to see Santa. The same mall we had this experience in. I was more than a little nervous. Living life to its fullest. ;)

This is the first time in Cole's life that he has had a picture with Santa. He'll be three in a few weeks. Something that seems such a normal part of childhood had not happened for him yet. We all have scrapbooks full of pictures of us as children either screaming our heads off or gazing with wonder at the man with the beard. I didn't get the initial running towards the jolly guy in red on video. Cole was so excited, he had a hard time waiting his turn.
We did however, capture our wish to Santa and some of moms tears. It was a big day. I like Santa's reply.

Santa, I want a cure from Niki Hyer on Vimeo.

We wish for a cure. For Cole, and for all of our friends.As we left, Cole waved and said, "Bye Santa! I love you!"

The Beast

The Beast decided to come out of hiding yesterday. At PCMC of all places. You would think that in a place surrounded by doctors, we would have a little help. The last two times we have been there in the last two weeks, Cole has needed rescue meds. Weird.

We went for Cole's 2 week g tube follow up. He started seizing in the playroom, on his hunt for a cozy car. The jerking continued, so Brian brought him back to me in the waiting room, to give him meds. It was our turn to go back to get height and weight. We explained what was happening and they put us in a room. Our surgeon came in, saw what was going on and said, "I'll give you a minute and come back" and walked right back out. I guess we looked like we had things under control? He asked if he could do anything to help as he was backing out of the room and I mentioned that Cole's sats were dropping and we could use the oxygen in the wall. Guess he didn't hear me? :) I doubt he has patients seize in his office very often. I had to send Brian to get someone else to find the tubing. The surgeon didn't come back for 15 minutes.

It turned out to be a big one. 15 minute Generalized Tonic Clonic with hard convulsions. He needed two different rescue medications and we had the staff searching everywhere for an oxygen mask. The O2 is right in the wall, but rarely do people use it in clinic...just us ;) He had post ictal blindness again. That has not happened for a few months, and it is only the fourth time ever. For something so rare, it is happening a lot. Chalk it up to Cole being complicated I guess. It did help when we were giving him O2. He couldn't see the mask we were holding by his head, so he did not fight it like he usually does. Gotta find something good about it, right?

Poor kid. His post ictal phase was rough. He couldn't see, couldn't walk and was very limp for a long time. Plus, the lovely angry elf came out with the Versed. Needless to say, it was an interesting visit. However, Cole's g tube looks great! We do love the surgeon even though he was not the greatest first responder to our predicament. We can stop taping it and can treat it like normal skin. He can get back into the the bathtub and even swim (if that was a possibility). We came home and just gave him a full tube feed since he was still in his post ictal phase. I am loving this thing more and more each day. There is no way that I could have convinced him to eat lunch while he was riled up with Versed and still kind of limp from an intense seizure. He doesn't have his post ictal naps any more. It would probably be easier on him, and us, but something has changed and he does not fall asleep any more, hasn't for a while.

I am hoping that we can put the beast in hiding again. 24 days without a GTC! Our previous record was 22 days. This is something to celebrate, but it always hurts when he has gone for so long without a Generalized Tonic Clonic.

You can never get comfortable. Things will change. They always do.

Happy Holidays

To all of our friends, family and lurkers. Merry Christmas! Since Cole is light sensitive and can only go outside with his FL-41 lenses, we took a different approach to our card this year. We decided to have a bit of fun. Our friend did a great job designing this card for us. You can visit her shop here (she has a child with Dravet too)! We hope your season is great.
Brian, Niki and Cole

Mr Incredible

Cole has some Obsessive Compulsive tendencies. Things like turning off all of the lights in the house before he goes to bed, drinking his cream only from the blue cup with the green lid and his movie preferences. Lately, it's been The Incredibles.

I am not even sure how many times a day he will watch this movie. With the glorious iPad, he can navigate to certain scenes with a few touches and he will watch them over and over and over and over again. At least during the Woody phase we could rotate movies. There is only one Incredibles. Every time the nurse came in, he was watching it.

We have had a busy week, but my little guy is a superhero. Just ask him ;)

Momma, I a superhero!

He has been doing great this week. Having increased complex-partial seizures, but today *knock on wood* is 3 whole weeks without a GTC! That is the longest he has gone in months and months! It seems that the new diet ratio is really making a difference. I am sure that having all of his meals now that we have the tube is making a difference too. Loratab during the beginning of the week took care of the pain. We are now just using Tylenol suppositories when it seems like he needs it.

The tube has been great so far! It has been really tender, which is expected. We got it checked out yesterday for some oozing and a hard spot, but things seem to be fine. We follow up with the surgeon on Wed. I think it was Thurs that we had our first ever episode of no crying or screaming or spitting involved "med pass". He just sat and watched TV while I pushed most of the meds through the tube and he took his Keppra by mouth like a breeze. It was a big moment for me. For both of us.He did not want to eat on Thurs evening, so I just hooked him up to the pump and he watched The Incredibles (of course) while the pump did the eating for him. No pain, no fuss. It was awesome!

He truly is incredible.
Here he is with his incredible friend, Bertrand. B turned 3 years old this week, proving multiple doctors wrong. Talk about incredible. We love you B! Thanks for letting us come to your party!

Utah Dravet Family

We hosted a little holiday party for the Utah Dravet families. Turned out to be not so little! ;) This is our second family. It was so nice to get together and not have to worry about seizures interrupting the fun.There were 30 people here, and we were still missing two families. Cole had to take a break and go downstairs for an hour or so. Yet, no big seizure! He went to Bertrand's birthday party in the morning and had his comfort zone flooded with people in the evening. Two months ago, this would never have been possible. Remember when we went to our last birthday party in July? Did not even make it ten minutes until he started having a GTC. The new diet ratio really seems to be working!

The parents
The cute kids. Jessie, Amelia (who did not want her picture taken), Isaac, Kimmie, Stockton and Cole
The kids just played and had a great time while the adults got to chat. It was wonderful! We're going to have to make this a priority in our schedules. Wiggles in the background is totally acceptable. :)Cole took the last two pictures!

Castle of Chaos

I have kind of been missing from the blogosphere because things have been more than a little crazy around here. In the last few weeks we have had a lot going on.

Getting ready for Christmas.
Lots of snow, which necessitated giving the girls a bath so they could sleep insideGoing to school. Both of us.We had an epic fail IEP meeting yesterday that I will get into later. Right now it is a little fresh.

G Tube surgery. Doctor appointments. Therapy.

We hosted guests from Florida and one all the way from Tooele ;) Daddy had to go to Vegas to speak at a conference. Who knew he was an expert on social media? Apparently he is.

We also hosted a party for all of the Utah Dravet families. We'll make sure to post separate on that ;)

In between all of the big stuff, we have been trying to keep up on the little stuff - like the mountain of laundry and cleaning the toilets. Not a lot of time for blogging. We've been busy watching Incredibles, with a little Imagination Movers sprinkled in here and there.

Morphine

Most people would go to sleep. For Cole, it just took the edge off of the pain, so that he could be himself. Trying to break into other patients rooms, talking to nurses, pushing buttons and cruising around in the cars. Gotta love it!

Untitled from Niki Hyer on Vimeo.

Adventures at PCMC

Last night was eventful for Mr Social. I think he visited every nurses station on this floor and probably would have went to the others if we had let him.He spent the evening pushing the elevator buttons, cruising around in the car and chatting it up with the ladies.He slept well, except when the nurses came in for vitals or meds, then he would say in his sleepy voice, "Get out!".The poor nutrition and skin thing has really hit home today. With Cole walking around last night, the port hanging off of his IV rubbed his foot with the movement. This has created a monster blister. Not enough good stuff in his body to prevent skin breakdown. He kept crying this morning telling us that his foot hurt, but everything was covered in Keflex, so we couldn't see what he meant. By the way, the IV wasn't patent anymore either. Not surprising with him, but less than a day? Come on! So, once again validation that we are doing the right thing.

We pulled the IV, got tegraderm on the blister and he's back to hitting the halls.Except he is making Daddy carry him since he doesn't want to walk. YET, he is also making him push the cozy car around with them. Wouldn't want to leave it out of his sight (this one has a walkie-talkie and lights on the top) you never know who is going to come looking for one around here ;) Cole has been stealing all of the nurses equipment and even trying to be a part of shift change.We have given our first feeding after a couple of hours of trying to figure out what the heck was going on. *Sending vibes towards the dietitian* He's holding it down well and we're going to try a longer feeding with a pump in an hour or so.Cole is complicated. The diet, Dravet and everything else about him makes him a "hard patient". However, he touches most of the people who work with him and they realize that he is special.

The Button

Cole got an AMT Mini button today. Right now it looks pretty gross, being held in by two stitches and has dried blood around it. Doesn't quite look like the beach ball plug I've described before, yet. I'll spare the close up shot tonight.

There are a lot of reasons that we did this. We (Cole included) are tired of the daily fight with medication. It is a wrestling match each time and rarely do I get it all in. Something usually ends up coming out on me, the furniture, clothes, etc. I don't know how many shirts I have had to throw away that have been a casualty of fish oil. Man, that stuff stinks! Even if you pre-treat and wash in hot water immediately. I can still smell it after three or four washes and the oil just seeps in and stains. Both of us being naked for meds in an effort to save clothes, really doesn't work ;) We know that Cole is going to have to take medication for the rest of his life. Now, thanks to this nifty tube, I won't have to sacrifice cute clothes, or do a headlock for regular meds ever again! (fingers crossed) I think Versed will still cause me to have to pull out the wrestling skills.

Cole has been gaining too much weight. "What? I thought kids who are losing weight get tubes?" If that is what you are thinking, you're right...unless the kid is on the ketogenic diet. Cole is not eating enough of his meals, to properly use the diet for it's full effect. Instead of all of that fat bonding to the carb+protein and then burning the fat to produce ketosis, his body is storing the fat. Pants that I had completely tightened the waist on two months ago, don't fit right now. So, Mr. Chunky will finally start to lose a little and hopefully take full advantage of high ketones. Hey, McDonalds three times a day everyday will make anyone get a muffin top! (Except maybe Brian) Cole has never been really interested in eating. So, now he can eat the good stuff and the yucky stuff can go in the tube. Next time he brings on one of his famous hunger strikes, we can just mix up KetoCal formula and push it straight through. It will be great for traveling and also to make sure he gets enough fluids. He forgets to do things, like drink, when he is distracted. Hopefully with better diet control, it will equal better seizure control. We don't want him to end up like a few other kids on this diet and turn completely anorexic. He needs to enjoy food. Right now it's just traumatic. The diet is important enough for controlling the drop seizures alone that we need to stay on it.

His nutrition will drastically improve. Right now, with the med fight, he is only taking 2 of 9 meds on a regular basis. There are not a lot of vitamins and minerals in heavy cream and he is not being supplemented with other foods. Watermelon isn't really known for it's nutritional value. If Cole gets bruised, which he has been a lot lately, it stays for 2 1/2 weeks. One of his IV sites from his previous eye examination, did not heal for well over a month. There just isn't enough good stuff in his system to promote healing. We are hoping to get him back on track soon so that he doesn't end up with a cold that turns into pneumonia, or something worse.

These are just a couple of the reasons that he had this surgery today. It's something that took a lot of hard thought, but I am loving it already! When we just slipped that Keppra in right after the O2 crisis, it was like a small piece of burden was being lifted from my shoulders. I really think that it will help our relationship too. I don't think that I am getting out of the "mean mommy" role in his eyes anytime soon. Yet, if he gets to the point where I really need to give him something; I won't have to blow in his face, plug his nose, try to measure what went in and what went out by a small puddle on the floor, coerce him to swallow, or a myriad of other things I have tried. I have a friend who wishes that all kids were born with g-tubes ;)

I'll post more of an update on our social butterfly tomorrow. What? You didn't think that he would refrain from flirting with the nurses, hitting the halls after surgery and being in pain, did you? This is Cole we're talking about here! Mini Hulk has super strength and super lady killer skills.

Performance

Cole got my memo on performing...a day late.

We woke up ever so early to be here by 6:30 am. However, before we were even checked in, Cole had around 10 complex-partial seizures in the admit area. The waiting room was so packed, there were people down the hall. Craziness. SO, we had to give him Klonopin before we even started the process. Why couldn't he have done this yesterday at school? *sigh* This kid ;)

The surgery went well. After explaining to anyone that would listen about the diet and "no Dextrose", we were confident. We like the surgeon and the anesthesiologist has actually worked with Mini Hulk before!

Cole went through his usual Angry Elf phase (name that movie) when he woke up, but it was a little toned down thanks to the prep talk we gave the team. Nice! We are on the third floor now, which I might say out of all of the floors of this hospital (we've used them all), is my favorite. Private bathroom, no sloping floor, and a full size bed for the parents, not just the pull out chair. Once again, nice!

Not so nice is that Cole's oxygen dropped to where his sats were at 10% (that's low) when I was trying to give him his Keppra. Champion breath holder. I warned the nurse, told her everything IV today would make every one's life easier. The doctor wouldn't order the IV Keppra, so our lovely nurse and a student got a scare and watched our baby turn blue. Mom knows best! We got to use the tube for the first time and just pushed the rest of that med through ;)This is the only pic we have so far as Mini Hulk has been sleeping off his incredibly high doses of meds with a nice, long winters nap. Mom on one side; Dad on the other.

We'll update later and show everyone the new tube! So far, a good hospication.

Hospication

This has given me a laugh more than once. I knew that I needed to post it the next time we checked in to "the hotel".

Top ten reasons why hospication rox my sox:
(10) We get all the lights and sounds of a casino without the smoke.
(9) We never have to worry about bad weather ruining our hospication.
(8) In case of an emergency, qualified personnel is always an earshot away.
(7) Friends and family get to participate and bring treats.
(6) Wi-fi is always available.
(5) A restaurant is always within walking distance. Nay, even within our living quarters.
(4) Every two hours, day or night, someone checks in to see if everything is okay.
(3) Room service comes standard for at least one of us.
(2) Upon return from hospication, I can flash my wristband and brag about being a VIP of my favorite band.
(1) We’re guaranteed to have a better time than at least one other hospicationer.

Back To School (or Normal Part II)

So, I wrote the majority of the last post weeks ago. Had no idea how things would be once we started "the test".

Funny thing, here I am, sitting in a small, empty room at the school. I thought that only Cole was the one going back to school? The lovely laws that state teachers and aides can not give rescue meds are good...for them. Okay, I get protecting the employees; who's protecting the kids? They informed me that if Cole has a seizure, all they can do is call 911. That means 10 min with no rescue meds. Cole will go into status (seizure that you can't stop) for sure if he seizes for 10 min without intervention. His major seizures are still over 10 minutes when we give the meds immediately! We have learned through a lot of practice, that the longer we wait for intervention, the longer the seizure. SO, after hearing how sensitive to stimulation he is, they suggested I stay on campus while he is here. So here I sit, in another room, for 3 hours a day. If Cole is going to get meds on time, it has to be from me. Didn't expect this one! We've only been doing this for three days and already I am going crazy ;)

Here's the kicker. Cole is behaving. He is polite. He is proving just how "normal" he can be. He is adorable. Heard that one before! ;) Basically, he is making me look like an overprotective idiot. This child has had more stimulation in the last week than he has in months. Still, no major seizure. What is going on? I mean, I'm happy...but confused.

To paraphrase one of my good friends:
I hate how in our lives (with kids who have special needs) we are always waiting for the other shoe to drop. We can never get comfortable. We can celebrate the small stuff, but are always looking around the corner, waiting for the beast to rear its ugly head again...because we know from experience that it will.

I guess that I really am the one that is getting schooled this week. Always expect the unexpected. I thought that I had learned that lesson.

Normal

Oh the joys and sorrows of having a child that looks and acts "normal" the majority of the time...

A couple of weeks ago, Cole had his evaluation for pre-school. He turns three in January and the services from Early Intervention end at that time. I brought an advocate with me since the pre-evaluation meeting had the underlying message of, "he won't qualify". This has been a long road for us, teaching him skills (including talking) and watching him progress with hard work. Apparently I worked too hard. All of the effort everyday bouncing on yoga balls, doing puzzles, reading books and other 'normal' activities have made Cole 'normal' according to the school district. Um, did you know that a few months ago, he could not sit still for a single book? 10 months ago, he couldn't talk, let alone say, 'How are you doing?" and shake your hand. Did you know that Cole could not match or even do simple puzzles until about 4 weeks ago. Because I worked with him every day! So, now, he can do them. It could change tomorrow. A regular pre-school will not take Cole because of his seizures. Remember that the window to maximize cognition for Dravet kids is small. They usually plateau around age 4 or 5. Kindergarten is too late to start school. I can't afford a private, special-needs pre-school. It's around $3,000 a month. So, this was a BIG day. I had been preparing for weeks.

Cole was his usual, charming self in a room full of new ladies. He wanted their attention, (duh) so he was more than happy to play games with them and answer questions. Even though he had a poor attention span and scored in the 20th percentile on two tests, he's just so cute and polite!! He doesn't need special education! He scored in the 4th percentile for adaptive skills. No, Cole doesn't make small purchases. No, Cole does not dress himself. Not a lot of three year olds do. BUT he also does not know not to touch a hot stove or put a fork in an electrical outlet. He doesn't know how to stay on the sidewalk or to pick up trash at the playground. He does not know his ABC's, can not count to 20 (or 3), can not tell me if he's angry or hungry, cut food, or stay with a single activity for 5 minutes without distraction. He can not use scissors, catch a ball, he can not calm himself down, etc etc etc etc etc etc. Why do you think he scored in the 4%? The administrator said that because he was in a new environment, his scores were lower than they could have been. She has every belief that he would have tested in the "normal" range if we had done these tests at home. How do you go from 4% to normal just by changing the environment? She then said that he scored so poorly on the adaptive because of the things that he was not allowed to do, so that made it hard to score. Um, do you want me to make him have seizures? He can not do some of the things the test was asking, because "allowing" it will result in a seizure. A few things were like that, such as going to the park and playing on playground equipment. She stated that special education would not change him. Cole will have continue to have seizures and pre-school won't change that. Yes, yes I understand that. I'm not looking for you to cure him, I want you to teach him!

I was getting pretty upset by this time. The nurse then started treating me like I had no idea what I was doing and asked to "tell me everything" but then really didn't want so much information. I started to tell her about the diet and she just moved on. I know how to keep my cool, and did so while I was in the room. I didn't mention that I used to attend IEP meetings at least once a month for my job. I know all about them. They had made up their minds. Cole was "too good". They said if he has a dramatic loss of skills, they would re-evaluate him. Does anyone believe in prevention? If he loses something, it's probably not coming back.

I convinced the school district to let us have a "test". Cole is going to go to pre-school for two full weeks, and we'll see if anything changes. I know they are just doing this because I had someone from the EAU there, who is a retired special educator. These people have made up their minds that Cole does not need services. In the two hours he was with them, he had just a handful of absence seizures. Not even noticeable unless you were looking him in the face. We face this issue almost every day. He walks and talks, looks normal, what's wrong with him? Do I wish that Cole was in a wheelchair, or couldn't talk....NO! I hate to say it, but it sure would make this fight easier. Epilepsy is so misunderstood. Our district is new, since they split from the larger district only a year ago. They do not have an "in between" program yet. Nothing in the middle from severe special needs to regular mainstream school. "Give us five years", they said! Two districts over, a friend of ours is getting a one-on-one aide for pre-school. Moving has never looked so good.

"He is adorable", was their parting comment.

I wish they could have seen the seizure when we got home. 2 hours outside of the house, totally expected it. We got it on video to show the dog trainers. I wonder if the school district would consider him to have "special needs" if this happened when we were at the eval. So here we are, in that awkward situation again (like EEGs) where we hope he has seizures. So strange. Kind of twisted. I hope he shows his true colors.

Off my soapbox. Whew!

Give Thanks

We made it!

This morning we decided to be brave (stupid?) and take Cole to the family party. Word on the street was that it was going to be much more low-key than usual due to less people attending the feast.

The worst that could happen was that he would have a seizure...we do that all of the time, right? OR that he can get sick, and we have to postpone his surgery next week. Hey, surgery can be postponed; we're thankful that it isn't an emergent need right now! Besides, Cole is going to go to pre-school next week for the beginning of "the test", most likely he'll end up sick after spending time with 15 other little kids! ;)

SO-we did it. We came late, left early, but we went. We had turkey and pie and had a nap. Hit the most important highlights of a Thanksgiving day. A lot of work to make this holiday not just another day, but it was worth it.

I think that we are getting more used to our new life. There are times that it is worth the risk, like Thanksgiving. Other times, not so much, like the grocery store. Now we have to gear up for Christmas!

Keto In The New York Times

Here is the article that came out today about the Ketogenic Diet. I thought that the author did a great job explaining our new lifetyle ;)

Epilepsy's Big, Fat Miracle

Attitude of Gratitude..Dos

*My mom. She turned 50 yesterday. Doesn't look a day over 35. Has been mistaken for my sister frequently. Unfortunately, not a lot of pictures of her alone are available, as she is usually behind the camera. The only one I can find is of Christmas morning...I'll spare you mom!

*Pulling out the party stuff. It's been in hiding way too long
My first solo centerpiece

*The Utah Dravet moms. They came over for lunch today. A reason to party (and be grateful) if I've ever heard of one. Unfortunately, got a pic of the table, but totally forgot to get a pic of them. Oh well, next time!The g-tube. Won't be here until Dec 3, but I am already grateful for it!

Walk It Off

Okay peeps,
Yesterday's post was a little somber. However, I am a firm believer (or maybe it was pounded in to me at school) that you need to experience all of your emotions. They are there for a reason. Get angry, be sad, it's alright to be frustrated. Feel, recognize, and then move on. I could do a whole "I feel __________ because _________" post, but I will spare you my recognition exercises ;)

So yes, I have been a little down in the dumps. That's okay. Life hands you all sorts of problems. Special needs or not, change and problems are the only things that are constant.

Today I think I'll watch Christmas movies with Cole, turn up Pandora.com's Holiday station, make every room Scentsy-licious with fall and winter scents, and clean a little.

It's going to take more than once around the track to walk it off, when you feel like you've been cut off at the knees. Here's to starting to limp :)

A Mess

This is how the house looks when Mommy is sick.
Mommy has been sick for a week and a half. Good thing we rarely have company ;)

I've been a wreck this last week. Not only have I been sick, I've just been down. I could blame the illness, but I think it's the time of year. The holidays used to be something to look forward to. Something to anticipate. I think that I have started to fear them. Halloween turned out okay, but it is the least involved of the holidays in our family. Usually, this time of year, I start to get the itch to cook and bake up a storm and test recipes for the upcoming get-togethers. Now, cooking with Cole around is a nightmare because you have to constantly be watching him to make sure he doesn't sneak food. Plus, if you are chopping, stirring and dicing, you are not watching him for seizures. He wants to be involved, since he loves to model cooking so much, and the entire kitchen gets turned upside down. At the end, no one can really share in my creation. Brian hates all holiday flavors: eggnog, pumpkin, peppermint, nutmeg etc (we call him Scrooge); we think it's stemming from a bad childhood experience because he can't explain why. Cris has become gluten, lactose and egg intolerant; for a pastry chef it is hellish. I don't have dinner parties anymore, and we don't get invited anywhere. I can't get out to give neighbors and friends treats. An entire pumpkin roll for one person? Doesn't make a lot of sense.

We are not going anywhere for Thanksgiving. My side of the family will be in Idaho and though I long to be with my grandparents and extended family, it's just not possible. There is not an adequate hospital, it would be a long drive, and there are going to be a lot of people around. Plus, Cole could not have any of the food and we would have to try and make room for his stuff amongst the holiday feast. If there is one thing my family knows how to do, it's eat. I might send Brian to his aunt's house for dinner, but after last year, we know that Cole can't go to the celebration. Too many people. His mom will be coming the week after, so we will get to spend some time with his side later.

Christmas is supposed to be at my parents. I don't even know if we can go. I am planning on it, but things always seem to have to be left to last minute decisions. How is Cole feeling? Has anyone been sick recently? Not cool, for someone who likes to plan and organize. He is at such a fun stage where he loves snow, wants to look for Santa in the sky and would totally love being around his cousins. Why can't I give this to him?! It just makes me kind of depressed. Obviously money is tight and I love to spoil my boys. I've said it before - why does Brian have all major gift giving events in a 10 day period? Birthday, Christmas and anniversary. Spread it out a little! ;) Makes it hard to be frugal. He deserves to have a huge celebration, but most likely it will be low-key...just like him.

The Continuing Resolution is wearing on both of us. We looked up the Blue Cross Blue Shield Federal plan and all of the specialists we want to take Cole to are in-network. We got so excited, and then disappointment set in. In reality, could we really lose the job after waiting this long? Seems so. Thanks politics. So, we are starting to think of plan B, C, and D. How do we get the right insurance, now, for Cole. The school evaluation did not go well, more on that later. We also made an appointment to go and get Cole a g-tube. I feel so helpless. Lots of tears, but knowing that everything will work out.

So if you talk to me and I seem a little grouchy, I'm sorry. My inside looks kind of like the outside. A little messy.

Swing

I know that I have mentioned it before, but never had pictures.
The Airwalker Swing is something that we use every day around here. It helps with propioceptive pressure and is fun for Cole. It has a calming effect, by putting pressure on his over-firing sensory system.
Any mommy's that have kids with special needs (or those that don't) who live around us, feel free to come and use it! We love this thing!

Respite

This week has been difficult. More on that later. I am on day 10 of being sick, but there were a couple of things that I had to get done. One of them included getting Bigfoot some new shoes, as he has grown out of all but one pair, (what 2 1/2 year old wears a size 9?). He also needed a winter coat. The whole not-being-able-to-regulate-body-temperature thing requires a good, thick coat in the 'Tah. Add to the list a new hat and waterproof mittens since the obsession with the white stuff is only getting stronger. The other was getting Mr Skinny some new jeans. Apparently I am a bad wife - he looks malnourished and his pants are falling off. Have you ever tried getting jeans for someone that is 6' 3" and weighs about the same as a teenage girl? NOT easy. I told him Wranglers would totally work, but he wasn't going for it. This required both Brian and I to leave Cole. Remember the last time we took him to a store? Family pictures are next week and so I couldn't put it off any longer. The Mr needed the jeans (yes, I have to approve all jeans purchases, leave him to his own devices and he buys old man jeans three sizes too big) and the coat was becoming more and more of a necessity as the temperatures drop around here. So, sick and all - we planned to venture out. That means we had to start the process of finding someone to take Cole.

Good babysitters are hard to come by in this day and age. They are practically non-existent if you have a child with special needs.

It's difficult to find someone who will let you come over and bring a large bag full of supplies and an instruction course that goes something like:
*Here's the oxygen tank. You use it like this (proceed with lesson)
*Here are two choices for meals. They are labeled. Choice A goes with the green cup, choice B goes with the blue cup. He has not been eating lately, so that is why we gave a choice. Everything has been weighed and measured. He only gets one. That's it, nothing else.
*Here is the pulse oximeter (proceed with lesson)
*Here are two types of rescue medication. Give this one first. Then if it doesn't stop, give this one. (proceed with lesson)
*If he has a seizure, call me. Do this and then this, then call 911; but most likely I'll answer and talk you through it
*Here is the only type of liquid besides water that he can have. Keep asking him if he wants a drink
*Here are the cotton balls. Put three in his diaper when you change it, so I can check his ketones...I will not make you do this, it gets messy
*Here is The B, and Elmo. Here's the remote, your new best friend (proceed with lesson)
*Here are his medications, pre-drawn in syringes because the doses on the bottle are different than what he actually takes
*I've laid out his pajamas. You can take the SPIO off when you get him ready for bed. Make sure he sleeps on his special pillow and not on Daddy's regular one
*Here is a sheet where I have typed everything so you don't have to remember, it's a lot of information!
*Here is our insurance card and address...it's on the sheet, in case you have to call 911
*I'm sure he'll be fine. Any questions? ;)

A little intimidating to your average 15 year old. We only leave Cole with adults that we've known for a long time, who have seen him have a seizure, so there are only 4 or 5 people on our list that live close by.

Being gone from Cole for only a couple of hours requires the preparation of a major vacation. We show up with enough supplies to look like he's staying for the weekend, when really it is only for the evening. Usually, we have them come to our house, so Cole doesn't have to change his environment. Dropping him off, rarely occurs. You can see why we don't go out much. It's a lot of responsibility to look after Cole, even if it is only for a few hours. Vacation isn't really a word that we use anymore. It's just reality.

We are so grateful that we do have a few, choice people that we know we could call if we really need to go somewhere, or if date night hasn't happened for um, three or four months. Plus, they do it for free! I really worry about getting a new group of caregivers when we move. It takes a lot of time and energy to build enough trust in someone to say, "Here he is, see ya later!" I really look forward to the day when we have respite services. A skilled, professional that can be our 'baby-sitter' and allow us to have normal relationships with other people; instead of scoping them out wondering if we could add them to our arsenal. Not that we do that ;) Respite is covered under some insurances and if you have services with the state. We are not covered by either. I've thought about hiring a nursing student, or someone with medical skills, but that just gets expensive. Some people dream of diamonds...I dream of respite. Oh, who am I kidding? I dream about diamonds too! ;)

Miami

Each time I think of Miami, I think of hope. Not great Cuban food, the ocean, or South Beach...hope.

When we met the group from the Brain Institute at Miami Childrens at the IDEA League conference, both Brian and I were impressed. We were not patients, but each of the doctors and staff members there took time to speak to us about Cole and about their program. I think we talked to their geneticist four times! They get it. This group of physicians and specialists get that my son has a life threatening illness that will not go away. They have a ion channel clinic once a month where kids with Dravet can come and see all of the doctors at once. You see everyone from the dietitian to the neurologist in one afternoon. They empty their waiting room and make accommodations for our kids. Then they have a support group afterwards with all of the parents. They have produced a great short video on Dravet; starring some of our friends. We really connected with a couple of the families in this video when we were in Connecticut. They were very warm and open to us, and then they became walking, talking billboards for this program at Miami Childrens.

I am so frustrated. I want to do everything I can for Cole and I know that these people can help me. I think any parent in our situation would be. It's just so hard that we can't give it to him. We are fighting the fight, but without cooperation from insurance, this is just not possible right now. My hope is that we get there...sooner, rather than later.

Animal

I am a music geek. As a self-proclaimed lover of all genres, my playlist is vast and deep. Thank goodness for Pandora! I used to love going to concerts, headliners or small acts. If you are familiar with me outside of this here blog, you would not be surprised to learn that I (as any musical teenager) had visions of being famous and being in a band. Alas, my musical career was cut short by a myriad of things - one of them, epilepsy. However, it seems that I have given my son more than just a sodium channel disorder. He LOVES music and loves to dance. We don't get out much to run and play, so our physical therapy is a little dancing and jamming each day while Daddy is at work. DJ Powerhouse doesn't groove as much now that he has a big boy job, and is kind of stuck in the 80's, but Cole and I are bringing him along ;)

Here is a video of Cole jamming (and having a small seizure) to one of his new favorites, Animal by Neon Trees. The boy has some moves! He doesn't show them all off here, but hey - you've got to save some for later, right? I really dig this band. Not only do they have local roots, their drummer, Elaine, is incredible! Valedictorian at BYU and a rock star -oh yeah! Girl Power! Sorry for the poor quality, hope it doesn't give you a headache...Mommy just couldn't help dancing and singing along!

Animal from Niki Hyer on Vimeo.

If you have Beiber Fever (my middle sis), here is a mash-up they did of "Stand By Me" and "Baby". Super cool.

Attitude Of Gratitude

I wish that I was efficient enough to post something I am thankful for every day this month. That is not the case, so I want to sprinkle a couple of things in here and there.

Today I am grateful for:

The Airwalker swing. If you saw the ABC4 clip, you noticed the "old school" blanket swinging. We used to do that everyday, but I can not pick him up and swing him side to side by myself. With no cartilage in my rotator cuffs, it just doesn't make me a candidate for ripped arms. This thing has been a life-saver and worth every penny.

The fact that we have not been inpatient for a while. *knock on wood* It seems that so many of our Dravet friends right now are in or just recently released from the hospital. YUCK.

For good friends that can maintain a satisfying relationship via the internet. Ones who totally support you by e-mail and facebook and forgive you if you don't write them back. It's hard to have GNO's when the majority of your "friends" live in different cities and states.

A husband who does dishes.

Trying REALLY hard to find a reason to be grateful for this. Really, I am.

Artilepsy

I got out TWO days in a row this week! Friday night we went to the Artilepsy exhibit opening. Here is a clip with the Epilepsy Association of Utah's president, Kris, talking about the exhibit. Sorry the quality isn't that great. I apologize for the buzzing and have no idea why it is that shape. Can't fix it.



Here is another way to try and view it.

We had a great time meeting up with our friends during and afterwards and enjoyed the pieces. It is always especially nice to spend time with the other Dravet families. We don't get to see each other often. I am glad that the Neurosciences Center wanted this. It proves that people with epilepsy, even Dravet Syndrome, can still be very creative and produce beautiful art. There was photography, paintings, wood carving, quilts and more! Thanks EAU for inviting us ;)Saturday we went back for the EAU's annual conference (their link is on our sidebar). I appreciated getting to hear about the research going on at the U and did not recognize that 13 of the AEDs (anti-epileptic drug) that are on the market were researched and brought to the marketing phase, right here in Utah. I knew that it takes 15 years for a drug to go through all of the testing and get approval, but it does seem that there are some new ones on the horizon that are in a different class of medications than the ones that are available now. Hopefully they come about in time to be a benefit for our kids. The class on surgery was enlightening, even though neither Cole or I are candidates. I think Kris did an excellent job on the Caregiver Stress class and reminded us, once again because we forget, to put ourselves on our list of priorities. I know that I fall off of that top three list often. Therefore, I am laying in bed, fighting off this imminent bronchitis, strep, sinus infection or whatever it is that is brewing. You know when it hurts just to swallow? Yep. Don't have time for it. I think that one of the best parts of this weekend was getting to spend a little one on one time with C aka Bertrand's Mommy. I love her! Plus, she bought my lunch...who wouldn't love that!

If you live in the 'Tah, I suggest going up to the Clinical Neurosciences Center and just browsing the exhibit. It has over 40 pieces, but is in a concentrated area on level 1 by the auditorium. The CNC is behind the University Hospital. The exhibit runs through December, just in time for Epilepsy Awareness Month. Wear purple!

Bathroom Humor

Niki: Cole, I am going to go potty. I will be right back. Okay?
Cole: Okay. Good luck!
Niki: Um, thanks?

Definitely made me chuckle.
Where does he come up with this stuff?

Miracles

My grandma has a saying, "We don't believe in miracles, we expect them".

Our dear friend, J, had brain surgery yesterday. So far, he has not had another seizure. I consider this a miracle. I am so happy for him and his parents. At 14 months old, he is a warrior. I hope that he stays seizure free. I want him to enjoy food again and learn how to walk. I can't wait to watch him grow up. Brian and I are so proud of his warrior Mama, who will do anything for him, taking him wherever he needs to go to get the best of the best. I must be honest though and admit when I got the e-mail from her saying he was a perfect candidate, I was jealous for a moment. Jealous of brain surgery...who would have thought?

I remember when, what seemed so long ago, I went to the U to see if I was a candidate for surgery. There was so much hope. Such high expectations. In the end, after a week of evaluation, I was not eligible. I was in my early 20's and had the firm belief that, "This is it! This time, they will find something to help me". It was years later that I had my heart surgery, which ended up helping me. Timelines are different, miracles still happen, just in ways we don't expect.

Another child with Dravet Syndrome lost his fight today. Mark is the 12th child this year. He was 5 years old. We don't know who will be next. It could be Cole. All of us who have children with Dravet, are holding them a little closer today, hoping for the miracle to keep them.

I think back over this year, and see that even through the wallowing in the mire, there have been little miracles. We saw the introduction and the exit of the helmet. We finally got a diagnosis, for both of us. We figured out photosensitivity, and we got those precious FL-41 lenses. We raised enough money to get Cole a seizure alert dog. That in and of itself should be our miracle for the year! I do expect miracles. I think that I have just adjusted my attitude and expectations from what I believed was a 'miracle' when I was younger. Instead of the 'marvelous event manifesting a supernatural act of a divine agent' definition, I am more for the 'any amazing or wonderful occurrence' definition.

We know that there will probably be no magical healing for Cole. However, when I think about just a mere 10 months ago when my baby could not even talk, to now...that is magical. He talks my ear off sometimes! I dressed him up as a chicken last year for Halloween because all he could say was, "Bok Bawk!" I consider it a miracle that he says, "I love you, Mama". I have many friends who's deepest desire is to hear this phrase from their child.

It is a miracle that our little friend L has been holding on, fighting like a warrior for over 2 weeks! Some didn't even think she would make it through birth. It is a miracle that our friend B has been playing with toys this week, and using his hands meaningfully. We need to find the teeny tiny miracles in our lives everyday, as well as appreciating the big ones like brain surgery and surviving against all odds. Any wonderful occurrence can be celebrated. Even if it is Cole throwing my phone into the bath tub. At least he has the motor skills to bend over, pick it up and chuck it!!! It took me a while though to get the good out of that one.

I hope that I can crawl out of the dark for a bit each day and see the little things. Cole had a major seizure yesterday, but we celebrated that he had gone for 9 days without rescue medication and had practically no post-ictal period. Sometimes it is hard to find the good in the midst of the bad. You have to dig deep and look in the cracks, but it's there.

Happy Haunting

We almost boycotted Halloween. Cole can't go outside. He can't have candy. He doesn't understand the concept of Halloween yet. So we were just going to skip it.

I think we had images of Thanksgiving in our mind, from last year. Cole started seizing in the car on our way to the family party. We stopped in the driveway, Brian jumped out of the car and rushed an explanation about why we were backing out, and we headed home. Cole stopped seizing on our way back. This is when he could actually be outside and was not yet sensitive to light. Eventually, I took care of the post-ictal boy and sent Brian back to have a little quality time with his family and he brought me home some food. YEAH, we didn't want to have another holiday like that ever again. However, this is our life and the stress and excitement that comes with holidays inevitably brings on seizures. BUT - remember that goal to be more normal? We chose to make the best of things this year. We let Cole answer the door 5 times, and that probably was a little much, but he was having so much fun!

Our lucky neighbor got two pieces and an "I love you!" So sweet. After, we just put this sign on the door. The doorbell alone creates so much excitement in Cole.We took something we already had, the SPIO suit and just built on it. I ordered a snorkel mask and fins that he can eventually use in grandpa's pool and we had a bona-fide scuba diver! We asked some good friends if we could bring Cole over to their house and they could give him some small toys that I had purchased. They went above and beyond and purchased some of their own ;)Here is Cole saying, "Happy Halloween!", just like we had been practicing all day.So yes, our fall was not that fabulous. It did not include hay rides, pumpkin patches, corn mazes, costume contests, pumpkin carving, apple picking, cider drinking, cookie making, parties, or adorable pictures in the leaves. But last night, thanks to some special people, Cole experienced Halloween...in his own special way.

P.S. Sorry grandmas and grandpas that we couldn't post Cole actually saying "Trick Or Treat" when he got to the door. Mommy was trying to operate too many cameras at once and it is stuck in our video camera!

Cole's First Snow 2010

Cole was so obsessed with the snow today! He has constantly been unlocking the door and running out on the porch calling for Santa. "Santa, where are you? Oh, Santa?!" It is hilarious. We try to keep him out for under 5 minutes, but as you can see at the end of the video, even a short period of time can cause seizures. He sure is cute ;)


P.S. Ignore the outfit, it's Daddy Chic!

Mahalo

We would like to thank everyone that has donated in Cole's behalf. We still have some more funds to raise for our training and there are always ongoing medical expenses like taking Cole to Miami for treatment and medication not covered by insurance. However, without the help of ABC4 and KSL Channel 5, we would not have been able to make this dream of a seizure alert dog come true. We are so grateful for people, who have been reading our blog for a while, taking interest in our story and helping us share it. We know that Cole has touched many hearts. He touches ours everyday.

Here are the videos from the newscasts

Video Courtesy of KSL.com

We (YOU) Did It!

We have reached our goal for 4 Paws! All of the money on the fundraising page will go directly to their program.

If you want to contribute to our travel expenses for our two week training in Ohio, our visits to Miami Childrens Hospital, or our medical bills, you can use the PayPal donate button on our sidebar.

Many thanks!

SO Close!

Thank you SO much for the amazing support! Hopefully, we can bring Cole's dog home in 6 months or so. It needs to be trained specifically for Cole's needs. The wonderful people at 4 Paws For Ability will start the match process to see what dog is going to be the best for Cole once we reach our goal! Check the fundraising page to see our progress! If we have met our goal and you still want to donate, there is another option.

If you want to donate to help with our travel expenses, expenses of having a service dog, or to Cole's medical bills, you can click on the PayPal link on our sidebar. You don't need an account! We will put the money directly in Cole's custodial account that we set up at Wells Fargo earlier this year.

We are so grateful for the family, friends, colleagues and strangers that have helped to make this dream come true for us.

Cole says, "Thank you, much!" ;)

Walk

We just wanted to remind everyone that our walk, "Paws To Help" is this Saturday at Liberty Park in Salt Lake City at 11:00 am. We'll meet at the North East corner at the large pavilion. We have chosen to make this walk free, with no registration fee. It will be short, with a balloon release at the end. We will also have people from the Epilepsy Association of Utah there to answer any questions you might have. Come and support Cole and raise awareness for Dravet Syndrome and epilepsy. We are not sure that he can even come because the weather is predicting to be cold and he can not regulate his body temperature. Bring your sunglasses, and if you want, your dogs! If you want to donate, you can click on the link on our sidebar. It will take you to Cole's fundraising page. This money will go directly to 4 Paws For Ability and is tax deductible. We are raising this money in their behalf to support their mission to provide service dogs to those with disabilities.

The other $3,000 that we are hoping to raise separately, is to go towards travel costs for the two weeks we will need to spend in Ohio for training. We are about half-way to our goal and want to thank all of you that have donated so far! It means so much to us, and to Cole. To learn more about why we want a service dog for Cole, you can go here.

Holter Top

Cole is sporting a new style today. We went in early this morning to the cardiologist (after being up until 11 on a post-Versed high) and got hooked up to this fancy machine.Cole's heartbeat will be recorded for 24 hours. This is to rule out Long QT Syndrome, another factor for that nasty nemesis SUDEP. Another Dravet child passed away in her sleep this week. She was only one day away from turning two years old.So far, Cole thinks the Holter is cool. Hope it stays that way! ;) The recording box is kept on by this little backpack, or as we are calling it, "Holter top". You never know, we could start a fashion trend. The latest and greatest accessory!

Brave, Or Just Asking For It?

I decided to be "brave" the other day and take Cole out in public. I know, I know - what was I thinking, especially after last week? I took Cole someplace where he was around someone that had a small cough. That turned into 101 fevers for two days and 3 tonic-clonic seizures in need of oxygen and rescue medication. We have slowly started to accept that we can't keep Cole in a bubble forever, so even though it was a little bit of extra work, he had fun being around other children. We know people who take their Dravet children on flights across the ocean, hiking, swimming, etc. They have just learned to accept that seizures are a part of daily life and choose to "live" it. We are inspired by them. So I made a goal to be more "normal" this week.

I got an e-mail announcing a one-day sale where everything in the store was 40% off, that day only. Cole needed jeans and I wanted to test the SPIO in public, so I decided to take a risk. I waited until the late afternoon and asked Brian if he would meet us there when he got off of work. I can not even remember the last time I had Cole in the mall, and I was ready for anything - so I thought. I set off armed with the iPad, sippy and stroller. Cole did really well! For about 20 minutes. The place was a madhouse. There were people and strollers everywhere! Brian came and I started to stand in line. Cole soaked himself, as he has been doing on almost a daily basis lately (blood sugar issues?). Brian changed him in the dressing room and kept his wet jeans off. I am still standing in line when I see a little boy in a flannel shirt and black spandex pants (the bottom of the SPIO) and no shoes, running around the store carrying part of a display! I'm sure people were thinking, "Where's his mother?" HI! It's me...over here, in line! The one who doesn't have her act together! At least he wasn't screaming ;)

I told Brian to just wait for me to finish so we could put some of the dry pants I was going to purchase, on Cole. I was in line for 45 minutes! At this point, any toddler is having problems being stuck in a store. Especially one with sensory issues. I finally get up to the counter and pay. I catch Brian in the corner of my eye, he has Cole in his arms and says, "Let's go. NOW!" I grab the bags, find the stroller in the midst of the chaos, and we start to run. No one really notices that Cole is seizing, because he is still conscious at this point and only jerking every 15 seconds. We book it out to the car and I prep the Versed on the hood.

After a few minutes taking care of things in the back seat, Cole started to come out of his post-ictal state and was drugged up. We decided to switch cars and have Daddy drive the boy since his long arms can reach back to the car seat. They headed towards home. As I was pulling out of the mall, someone rear-ended my car! It could have been a lot worse. There was minimal damage to the car and no one was hurt. We could have been a lot farther from home. I could have been alone. I just think that I am going to need some more time before I try to be "normal" again. What a slap in the face, to remind me that just going to one store for a sale, is a crazy idea. Having a controlled environment is so much easier for me and Cole. However, easier is not always better. I don't think we're ready to go anywhere intense soon, but we'll try again in a week or so. Maybe the grocery store?