Friday, September 30, 2011


I will mention that even though it occasionally feels like I am being kicked while I am down, I am in fact grateful in a sick and twisted way that I have had problems with nursing and school. It means that Cole is actually getting the opportunity to have both. I just wish that someone had come before me to give me the 411 on everything. I guess that I am paving the way. I am still whole heartedly pushing for a Dravet community here :) I'm not regretting the move, not at all. Just think, anyone else who comes, I will know EXACTLY what to do to get what we want! :)

Moving on....

Update on the med situation.

Oh, did I mention that we are changing medication? 6 weeks of torture...coming up! We have already been at this for 5 weeks (not including when I took Cole off of the NanoVM and Carnitor), there are 6 MORE weeks to go! It is hard to just add or get rid of medications. If you just switch things around and up and down, it gets confusing as to what drug is doing what. So, we decided to take it slow...and I mean slow.

We started with a SLOW wean of Depakote and Topamax. We will be adding Clobazam (the med from Canada), but only after the Keppra wean. We are to the stage where we have eliminated the Depakote and Topamax. I was not half as scared about them as I am about touching the Keppra. 72 hours off of Topamax, Wednesday, it kicked in. The Rage is back. You may recall just how awful Keppra rage is. Let me remind you here or here, if you have not read about how each time we touch this drug bad things happen.This cutie? He has disappeared.
This smiling, mostly sweet boy? He has been replaced by a hitting, tantrum throwing, kicking, screaming version of himself. Seriously, the devil inside has been awakened. We have not even touched the Keppra yet. It is just being metabolized differently now that the other two (well, actually 4) drugs are gone and the strength is intensified. We have to go slow, since we will not be completely taking him off of this one, just lowering the dose.

I'm not sure I'm going to have any hair left by the end of this. There is a promising little box from Canada sitting on my counter and I just have to be patient. I can't touch it yet. Especially since there is now a shortage, you have to import it, and people are running out! Mercy.

I can't wait until HE comes back.

Thursday, September 29, 2011

The Force

The time has come to officially start "begging".
All of the people in Cole's class at 4 Paws for Ability have the opportunity to carry on tradition and beg for their matches until they release the names and pictures of the dogs we will be partnered with. We are encouraged to create songs, poems, pictures, videos...anything to get the Pink Girlz (a secret group of spy dogs) to steal the list of matches. Some people get extremely creative, and it seems that we have a few of those in our class! Here is one of the best-and we are only a few days into this! Yoda (one of the dogs that lives at 4 Paws) is a special member of Pink Girlz, even if he is a boy. This video is directed to him (obviously). If anyone has any great ideas, let me know. We will do anything to get our match early!

Wednesday, September 28, 2011

Proceed With Caution

I have been known to spontaneously burst into tears in the last couple of days. For those of you who know me personally, you understand that I am not a crier. Same old stuff, just compounded.

I eluded to having nursing struggles in the Labor Day post, but that is just the tip of the iceberg. I try to usually be light and humorous around here and still be honest. I'm not sure if sarcasm can cover up the pain right now. I think I have written this post three times, just different ways and it still just sounds depressing. I do know that I will cowboy up, pick myself up off the ground, dust myself off and start over. It's just my nature. Still, this post is a downer. I also go frequently in and out of past and present tense and first and third person...I really shouldn't be let out into public, let alone blog :) Forgive my grammatical errors. I done did grow up in the country.

Reader's Digest version-School said, "you can't bring a nurse here that doesn't have a contract with the county". They can not even be on school property. So, I have been attending school, 5 days a week. Cole can't ride the bus anymore (remember it is his favorite part). Also, as a random insert, I have a 4 year old that has a major crush on me. He is my little shadow. He saw me the other day and couldn't wait to introduce me to his mom, who informed me that he talks non-stop about "Cole's Mother". Kinda cute, kinda creepy. Back to business. After many, many instances where things just weren't "right", I made the decision to switch agencies. It was a long and complicated road to get to this decision, but I felt like it was time for a change. We decided to terminate another couple of nurses, and things were not getting better, so we ended our relationship with the first agency.

So, I went agency shopping. I threw out an S.O.S. to a local and asked for insider information. My connection suggested an agency that they had been with for an extended period of time. It seemed like the perfect fit. We signed up. This is clear back at the beginning of the month. They start putting a schedule together, we do paperwork, etc. I like them! In the meantime, I am still attending school with Cole. The medical review board has not reconvened. I think that it will all be smoothed out, as I had been reassured in a meeting in APRIL that they have done outside contracts with plenty of other students, you just have to do a little more paperwork and prove that the child needs continuity of care. Paperwork doesn't scare me if it will get me what I want. So I proceed with the new agency, even though they do not have a contract with the school district.

In between all of this, there has been some miscommunication about whether or not we can actually have a contract formed with the school to have an outside agency nurse attend with Cole. Some say it's possible, others say no way. Switching was a bad move. I attended the Medical Review Board meeting, that had been re-scheduled twice, and found that under NO circumstances, was I going to be able to have a nurse, that did not have a contract with the school district already, allowed to go to school with Cole. Okay, this is news to me! We are stuck between a rock and a hard, hard place. They want me to fire my new agency and go with the one they have chosen for me. Which would you do? Pick a name of a doctor off of a list, because it sounds nice...or go with the recommendation of a friend that has been seeing the doctor for years. Yeah, I thought so. I did not want to "compromise". I was being pigeon holed by bureaucracy.

I came home from that meeting feeling so defeated. If someone would have told me 4 months ago when we started talking about this that there was no other way, I could have made the change myself and spared a lot of this. We were back to my original fear-Cole was going to have one nurse for 2 hours when he woke up, another for 3 hours at school and another when he got home. Plus, who knew going to pre-school would be so exhausting? Cole comes home, has lots of clusters, and crashes from exhaustion. I want to do the same, but my brain is clicking in overdrive. He has even had two long seizures at school that his teachers have witnessed. A whole bunch of new people every day would add to this.

I knew that it was not going to be easy when we embarked on this new adventure, and it has not been. I actually had more stress with nurses around than without, just a different kind of stress. Hopefully, we can get to the point where they ease a burden and don't create one. I have not had a nurse since the 7th. It's funny how fast I came to rely on another person to be the eyes and ears. Our new insurance is great, but I spend over 20 hours a week on the phone just trying to work stuff out. I never had to do that with our previous provider. I also am spending a lot more time on stuff like school, applying for grants and meetings, which were not a part of our life in Utah. Oh, add fundraising to that. I could do it all before, even if I was burned out. Now, it's just barely hanging on by the skin of my teeth. If I don't have someone else around, I have no choice but to be with Cole. Everything else gets put in a pile and I don't get to it in a timely manner. Niki cues her OCD recessive gene and goes ca-razay! As much as I don't want to baby-sit another nurse and go through all of the training, again, I need to. I really need the help.

Long story short (seriously, this is still the Reader's Digest version), we had to switch agencies again. After many phone calls, many sleepless nights and many, many moments where I just wanted to break down crying. This is the agency that I was forced to choose through the school district and they can also provide nursing for respite and skilled. One agency, the whole thing. Getting there was just exhausting. I think they are going to work out. They start bringing nurses in tomorrow -cue soundtrack for life, Hallelujah Chorus. However, just because the agency seems great, doesn't mean that we will hit it out of the park on the first try. There is still going to be growing pains.

Also, during all of this, I was solo with Cole for a good chunk of time. Brian was out of town for a week and then was hosting a very important conference the week after he got home, making it almost like he was still out of town. I had someone close to me who passed away and that was hard to not be with my family. Cole got sick and missed a week of school, we had company, we've been doing some major medication changes (more on that later). Then I got sick. It is only by divine intervention that I did not have a seizure or a psychotic breakdown. Remember stress, no sleep, poor eating and illness = not so good for Niki? I pulled through. Angels, seriously. It has been 1 step forward, 3 steps back all month and I am not hospitalized. Total miracle. Although a padded room sounds lovely right about now :)

This was EXACTLY what I needed to hear in the midst of all of this chaos. I am not forgotten. Sorry to get spiritual on here, but this is a message directed specifically to women in our church. Listen to it. It gave me comfort, hope and reassurance that even though I am not perfect...I can find joy. I don't need a golden ticket. I can find triumph in the little things. I need to be patient with myself and not take myself so seriously. As long as I am giving a good effort, it is enough. I also need to remember that the sacrifices I am making are good ones. I can find wonder and delight in even the tiniest journey or success. My time and energy has to go to this right now. Cole is worth it. He really is. I am thankful that I have my beliefs to help me through dark and trying times.

There has been good stuff this month like a Brazilian blow out keratin treatment (life changing!), spending some time with my parents, taking Cole to the zoo again and other stuff. I am not a total Negative Nelly. Oh, and the school just told me in another meeting today that they are not allowing the dog. Bet you can't wait for the next installment, can't ya ;) Welcome to my world, people. Where brutal honesty is the flavor of the day. I'll go give myself an attitude adjustment in the form of chocolate cake and promise to be not so dark and deep the next time.

Sunday, September 25, 2011

Bake Sale

Our Cookies For Cole bake sale was a great success! Despite having foul weather, it went really well. We just substituted hot chocolate for lemonade.
Thank you to everyone that participated. We still have a lot more money to raise, but are so thankful for everyone that has contributed so far. It warms our hearts to hear stories of people coming together to support our little boy.We split up and held one bake sale at our home and another at a more public location. Cole was, of course, the main attraction at the home sale :)
We look forward to gathering all of the donations and coming up with a total. I think that we can safely say that we have the hotel and gas covered for our trip in 4 WEEKS! Now just to get our food and dog supplies covered and I can rest easier. There were so many delicious treats, I wanted to try them all! Many thanks goes out again to our friends and neighbors for making this so successful.

Saturday, September 24, 2011

Steps Toward A Cure

Hey, sorry we have been lacking in the posting department. I promise to get you updated on the chaos soon :)

Until then, here is an incredible video about our good buddy Braxton (grab a tissue) that was made for their annual walk for The Dravet Syndrome Foundation. He and Cole are only 3 days apart. We genuinely wish that we could have been at his walk today and hope to make it next year. We really love his family and are actually actively recruiting for them to come and live in our Dravet compound! *double wink*

I really relate to his mom when she says, "There is so much hidden underneath his smile".

Cole is still smiling, even though the last little while has been hard and confusing and more than a little frustrating. Each day I have hope for more information, more research and a better tomorrow for sweet angels just like Braxton and Cole.

Thursday, September 15, 2011

What Did You Say Again?

We've been completely without nursing for a while now. In some ways it has lifted a burden, in others, it has just reminded me how important it is to have an extra pair of eyes, ears, and arms around.

The story is long and complicated.

I will probably fill you in soon.

If this post seems extremely disjointed, forgive me. This is just how it has been for a while. I have been having a hard time forming sentences and have to ask people to repeat themselves often.

Tuesday, September 13, 2011

Practice Makes Perfect

Mom was right. Practice does make perfect in a lot of areas, not just music.

I have been practicing my baking. Now that I live at a totally different elevation (and have a temperamental oven), it is like learning all over again.

I made Pumpkin Cinnamon Rolls and topped them off with Salted Caramel Cream Cheese Frosting. I think that I ate 6 in 24 hours. There is only one left.

and I think that I am going to finish it right now...just preparation for this weekend!

If you like treats as much as me, check to see if someone close to your area is holding a Cookies For Cole bake sale.
Saturday, from 11-2, I'll be selling delicious goodies and bottled water. It's supposed to be a beautiful day!

If you can't make it to a bake sale, you can always donate through our blog. Click on the "Donate" button to the right and all proceeds go to Cole's Cause. You do not need to have a PayPal account.

Friday, September 9, 2011

Fun In Between The Fight

We managed to have some good times in between all of the headaches and some tears this week. The perfect storm was brewing and there are going to be some major changes in a lot of areas. Starting from scratch. More on that when I have the energy.

On Labor Day, my nurse had a sudden "family emergency" a few hours before her shift. Funny thing, she also tried to call me at 9:30 the night sure was spur-of-the-moment. Hmmm. I decided that it was not going to bring me down and we recruited our friends to go on a drive with us. There is a cute apple orchard a little over an hour away and we were not getting anything accomplished sitting at home. I heard they sold awesome homemade donuts and I wanted one. So we got in the car and left!Say, "Tacos!"
We had to make a mandatory stop at our old favorite, Cafe Rio. We are so happy it has opened out here! Cole did awesome with all of the noise and even stood in line pretty good. He only laid on the floor twice :) It's the little things!Even though it was raining, the drive was beautiful and the orchard was quaint. We got some of the most delicious apples and peaches!I was forced to buy a dozen of the apple cider donuts. They had just sold the last single donut 20 minutes before. Oh well, I shared!They had a great playground and some cute cut outs to take pictures. We will definitely be going back again, without the rain to see the orchard in its full glory.Cole really liked playing with the large checkers set. Remember the apple pie tree from McDonalds back in the 80s? They had one! Cole had a 10 minute tonic-clonic as we were leaving. I guess that the drive, a restaurant and an orchard were too much. At least we tried! The donuts were worth it :)

Another awesome thing. We had our good friends Zach and Leslie come to see us, all the way from Texas!Zach brought Cole an awesome fire truck puzzle. It's 4 feet long!
We were so excited that they stopped by. We have not seen them since the IDEA League conference last year. Zach is one of the oldest people that we know personally with Dravet Syndrome (he is 21). We love him and he truly is the "happiest kid in the world". We love his mom too :)

So in the midst of chaos, we had some bright spots. Friends are so important. We are grateful that we have such wonderful people that we call friends!

Thursday, September 8, 2011

First Day

Hey, sorry we dropped off there for a little bit. We have been more than a little hectic around here. To add to the list of natural disasters, there is now severe flooding and school has been canceled for the first time ever due to excessive rain. Here is Cole's first day of getting on the is his favorite part of the day.The mandatory first day of school picture. Isn't he cute?
We hope it lasts. We've had a couple of hiccups this week regarding the school, nursing, etc. For a moment or two I considered home school (which is what they wanted). I got my fight back and we'll see what happens next week!

Saturday, September 3, 2011

Dog Shopping

I have been trying to get Cole to understand that he is getting a new doggy. He doesn't have the ability to understand the concept of a service dog, or what this one will do, or that it will go every where with him.

I've just been trying to get him to realize that he is getting a new buddy, and get him excited about it. This has been going on for a long time.

I have had him look at pictures of dogs. I have tried to talk to him about our former family members "The Girls", even showing him pictures and videos of them. He can not remember them. Only recognizes himself in the pictures. Leilani and Lily are a thing of the past for him without constant re-enforcement.

When I ask if he wants a dog, he exclaims, "Yes!" Then continues by saying, "Let's get in the car. Go buy one at the store!" You get everything at the store, silly.

Funny story, as I mentioned, according to him you can get anything by going to the store with monies, even a boat. He told his dad the other day that he wanted a boat. Brian said, "Oh, I wish! I would really like to get a boat too, buddy". Cole answered, "Let's go to store and get one!", totally matter-of-fact. If it were only that easy :)

To say the least, the excitement about the timeline for going to Ohio getting smaller and smaller has been reserved for Brian and I. We are counting down the days. We have even got coordinating Halloween costumes for Cole and his buddy!

Yesterday, I tried again to show Cole the Dogs In Training page to see if it would spark interest. It is like sitting down to a Mail Order Bride website, trying to scan only pictures and a brief profile, to choose a partner for life. Even though technically it is not our choice, it is still kind of fun, and weird all at the same time! Scrolling through the pictures and imagining which dog is going to change your world. I tried this before and he just looks and says, "Doggie!" and runs away to do something else. This time, he looked at every dog. I asked, "Which dog do you like?" He went down the entire page and pointed to every single one, making a comment. He repeated over and over, "I like that one!" or "I want that one". If I scrolled too fast, he would stop me and make me go back. He asked again this morning, "See dogs?" His concentration has improved since being off of the Nano VM and Carnitor. The seizures have started to increase again, but I really think that is because of the Depakote and Topamax. He still doesn't "get" that one of these dogs could be his, but at least he is looking!

Now I have been looking at this page for months hoping and dreaming about our new partner. I have my favorites, but I know that 4 Paws will choose the perfect dog for Cole.

So, every dog on that page is good enough for me :)

After the last few days being from you-know-where, this was a pleasant reprieve.

Which one do you like?

Friday, September 2, 2011

Stories Of Hope

Cole's story (a piece of it) is now being shared on!
You can go here to see it along with some of our other friend's stories., Dravet Syndrome Foundation and ICE Alliance are great resources for parents, doctors, families and patients. There are links to all of them on the sidebar of our blog.

We are so grateful to be a part of all of these networks.

Thursday, September 1, 2011

The OTHER Cole

Right now, our good buddy Cole K is having brain surgery.

He is in great hands with Dr Bingaman at Clevland Clinic, who also performed our friend John's surgery last year.

He has been diagnosed with Infantile Spasms and they are taking out his left Temporal and Occipital lobes. This is a very complicated surgery.

Cole and his parents are in our thoughts and prayers today. We've been through some tough stuff together, but this is the most intense. They are SO brave...true warriors! We just want the best for our Cole, and theirs.

You can read the OTHER Cole's story here, or his link is on the sidebar of our blog.
Photos by Capture Me Candid