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.