Wednesday, June 29, 2011

Good News Of The Day

After a year of being thoroughly used and abused by a toddler, our beloved iPad was showing some wear and tear.

The screen was scratched, but then a crack appeared. Then a chunk of the screen came out. Uh oh, we can't survive without the iPad!

Enter that lovely warranty that we got, taking Cole into consideration, and a gracious employee at the Apple Store...and we came home with a shiny new one. Hopefully we can keep it in one piece.

Now who has ideas about what case is the most child-proof?

Here is my favorite iPad accessory. Cheap, and makes the car so much more manageable! Love it.

Something else I love? THIS. Seriously people, go and buy this cover now. Not only is it really cute for boys or girls, it is benefiting one of our dear friends, Cole K! Help him get brain surgery! He deserves the best.

Tuesday, June 28, 2011

Do I Sound Like A Broken Record?

Imagine this with O Fortuna cranked up with crackly, static in the background.

Cole is not doing so great. Repeat.

We think it is time to switch meds. Repeat.

Cole is creating un-human amounts of urine, therefore creating un-human amounts of laundry. Repeat. Repeat.

We think we're going to try Clobazam. Repeat.

Cole is doing a little better! Not repeated so much.

Oh, just kidding, we're not trying Clobazam. Repeat.

Is Cole allergic to milk? This could be the end of his eating by mouth. Repeat.

Niki thinks she's having a mental breakdown. Niki commences pulling out hair. Repeat.

Cole is having too many seizures to count. Repeat.

Cole is totally wired in the middle of the night. Hardly sleeping, therefore his parents are hardly sleeping. Repeat. Repeat.

When is the nurse finally starting? Repeat.

Cole needs so many rescue meds during the week, that they have transitioned to regular meds. Repeat.

That new medication sure acts a lot like the rescue meds. What will we do if his body gets used to benzo' s and he needs help? Repeat. Repeat.

Niki wishes there was a way to make her legs look something beyond a whiter shade of pale. Repeat.

Should we stop giving Cole Valium, maybe he is becoming addicted? Repeat.

Maybe we shouldn't even start something new. Repeat.

Niki is going out of town for a few days, starting something new would be ridiculous. Repeat.

Might as well start now, he surely isn't getting any better. Repeat.

Cole's stomach starts rebelling. Repeat.

Cole is super cute and says something funny like, "Oh my goodness, I love you!". Repeat. Repeat.

Niki searches for a way to unplug the record player, take out the batteries and remove the chanting voices in the background. No such luck. The record starts again.

Is it just me, or is it like Groundhog Day around here?

Sunday, June 26, 2011


I am sitting here next to Cole, who is twitching like the worms from Mexican jumping beans have been implanted in his body.

I am trying to be excited, but not too excited for my upcoming trip, which is going to somewhat resemble a dine and dash. One minute I am SO excited to take a break from our reality. The next minute, the thought of it just really brings our reality home. Part of me wants to pack my suitcase, days early, and just hightail it out of here for a little while. The other part wants to just stay home with my boys, because if they can't come then I don't want to go; it's just not fair. Cole is so unstable right now, it's just not realistic to travel with him. No one ever said life was fair.

I am trying to get to a place emotionally where I can just be okay with everything. I may not like a situation, but I can't mourn what I can not control. So, I have to leave my boys behind for a significant family event. I'm not going to pretend that it's not hard, but I have to focus on the good things. First, I get to witness my baby sister marry her high school sweetheart. If you haven't checked out her beautiful dress and dazzling smile, take a peek here. Yep, that's my sister...just one of them. They are all pretty much hot stuff. I get to see my extended family all at once and also be there for my grandpa's 80th birthday. I have a huge family. There are 32 cousins on one side and 19 on the other...first cousins. I got to grow up with the majority of them, in the same place. However, with such large numbers the only time I ever get to see all of them is at a celebration like this. I get to re-connect with my hometown and just revel in its small town-ness (is that a word?). I get to hold babies, eat good food and be awed over and over again with my grandparents yard (it's like temple square). :)

I am so excited that I get to hug Erin and Cristina! Two people that ground me, for completely different reasons. Sometimes there are people in your life who you feel instantly connected to their spirit. Other times, best friends come out of the most unlikely combinations. I love these two and miss them every single day. I'm so sad that I'll probably have an hour with each of them, but I most likely won't be able to see them for at least another I'm going to enjoy every second.

There is a lot of good that is going to happen in a few short days. It is going to involve a lot of driving, flying and possibly sleeping on the floor. Events in two states, parties large and small. A whirlwind of go here, go there, drive here, party there. I'm just going to put a picture of my little man and my big man in my pocket and possibly pretend that they are right there with me. I guess the biggest obstacle will be to stop wishing that I could be in two places at once. Is this the wrong time to try self tanner?

Wednesday, June 22, 2011

Quite Possibly The Coolest Outfit Ever

And he put it together all by himself.

What? You don't think that a snorkel mask and fins, no pants, a dump truck pajama shirt and a santa hat can't be couture? I'm thinking about hiring him out as a part-time model.

Because who wouldn't love this face?
Best money ever spent on a Halloween costume. Continues to make me laugh on at least a weekly basis.

Tuesday, June 21, 2011

I Almost *Shanked A Pharmacy Tech...

So, I wouldn't be that great in prison. I've been in contact with my share of ex-cons and juvenile delinquents though (for my work).

Regardless, working with others that had a totally different vernacular and life story, also taught me that I could make a weapon out of anything. So I can speak gansta and be creative! It also encouraged me to learn a little Brazilian martial arts. Totally going off of the story, but ask me to show you Mata Leao some day.

Coming back around to me looking in my purse for something to harm the unassuming Walgreens tech with...stay with me.

Cole has been in a bit of a funk lately and we are plowing through rescue meds like it's our job. Usually Daddy is the pharmacy runner, but has been out of town. I kept getting the mommy-instinct prompting to go and get a bunch of refills, as we are completely out of two rescue meds as of yesterday.

Now, I realize that when you show up with 6 scripts, three of which the pharmacy doesn't even carry, you can become one of those customers. Once again I found myself wishing for PCMC. The pharmacy there was awesome, even if they screwed things up from time to time...most pharmacies do. At least they could get my stuff to me the same day usually, because they had it in stock or knew how to make it. Not the case out here in the big city. Hmmm...

I had to take Cole in with me, which was awesome (insert sarcastic tone and eye roll here) and he was totally overstimulated and commenced having small seizures. The tech told me that she would call on two of the scripts to see if she could get another one of their stores to mail it to me, she had never heard of one application, another one was not up yet for refill, and then said that she would work on my other three. Give her 10 minutes. Oh, and that they do not stock catheter tip syringes (which I totally told my DME company..another battle for another day).

I ran around following my very strong three year old and managed to collect some mascara and a spare portable pill crusher on the way. At this point he was having significant seizure activity, so I guided him over to the chairs by the pharmacy. He started to generalize. We had been there for 15 minutes, past her 10 minute mark and had seen three other people get their meds. I almost ran up to the counter and demanded that she throw me the Diastat and I would just pay for it later. I needed it NOW. Lucky for her, I didn't have to get all up in her grill since I had Valium tablets with me. I commenced the crushing, adding water and what not (which is totally not fun when your child's seizure has generalized) and tried to calm the screams of "Ow! Ouchie! Ow! Owie!" I was not even touching him. Lovely. Finally got the tube extension attached, meds flushed and started to just hold him and wait it out. I then fling the diazepam tablets to her to add to the order for good measure. Cole kept slinging his arms about and knocking off the pulse ox. Thank goodness his sats didn't drop too far. I don't think I would have had any help from the desk if I had needed them to go and get the oxygen out of the car.

So, I am sitting there in a corner of Walgreens, obviously having a problem. No one around us said anything. I had it under control, or I would have been recruiting strangers, but come on! By this point, Cole is blind and jerking away in my lap. When his seizure finally slows and his sight comes back, I go right up to the counter. We've been there almost 30 minutes (remember the initial 10 min waiting period?) The tech takes her sweet time and then tells me that she can only give me two vials of Diastat one in each strength, no midalzolam (2 different applications), no carnitor and the diazepam tablets. Good, whatever. I need to leave now. I mentioned that Cole had just had a 10 minute seizure and she looked at me like I was the definition of crazy.

My son does not have a normal post ictal period where he will fall asleep or be calm as his brain tries to re-adjust after the least the majority of the time he doesn't. The animal inside comes out when he's on drugs. 10 mg of diazepam wakes the inner warrior, so as I am trying to pay and get out of there my toddler is literally scratching at my eyes and screaming at the top of his lungs, "No, Mommy! I go back! It's all done! I go to fridge!" and other random nonsense while thrashing about in my arms. I just looked like I was a bad parent and had an out of control child. Awesome.

We're back home and Cole is slurring his words, climbing all over the couch, randomly bursting into applause and watching Shrek. Just another day in our life. Well, except for the contemplation of creating a shank out of a Diastat acudial. She probably has no idea. Still, don't mess with the little white chick. Quorum.

In other news, I saw fireflies tonight...which was really great!

*Post Edit: Now, now...I do not condone violence in any way. Remember, I would not do well in prison? This was meant to be humorous. I am 100% sure that this tech did not fear for her life while I was there. She probably had no idea the things that I was even going through, since she was in the back the majority of the time trying to fill my order. I am also 100% sure that I would not have had time to whittle an acudial to a point, while taking care of a seizing child. Sarcasm, it is a weakness. I am not really going to murder or harm anyone. Today or any time in the future. Mmkay? Okay! :)

Sunday, June 19, 2011

The Short Bus

When a woman finds out that she is pregnant, there is almost a primal instinct where they will take themselves on the journey of this unborn child's life in a few minutes.

Where will they go to school?
What will they be when they grow up?
Will they be happy?
and so on.
Hopes and dreams for this child abound,
including having lots of friends
daydreams of the first time you get to introduce them to Mickey Mouse
what kind of clothes that you can dress them up in
watching their expression the first time they feel grass or sand on their feet
thoughts about Christmas, Halloween, and other holidays.

They will take themselves mentally through a progression of infancy, through childhood, high school graduation, college, marriage, grandchildren and success. We all hope and dream for success for our children. Dreaming about picnics and birthdays and family vacations are totally normal. Every parent has aspirations for their child.

When a mother finds out that her child is not going to necessarily fulfill all of the dreams that she has for them, she must come up with new dreams. New hopes, new wishes.

In between insurance, oxygen fiasco's, supply company errors, Medicaid messing up our new number, bills, mountains of laundry (Cole is back in diabetes insipidous mode...he has literally 'marked' every surface in the house, including my king size down comforter, twice), seizures and other stuff...we got incredible news this week.

I am not your average epileptic. Honor student, multiple college degrees, had friends, have held multiple prestigious jobs, I've been the exception to the rule. I have never needed any type of special assistance, especially when it comes to education. I never thought that the day would come where I wanted, hoped and dreamed for the short bus to come to my house.

Most of you know a little about the struggles that we had with our former school district. See here for a brief refresher. They said that Cole did not have a disability, having Dravet Syndrome would not affect his education and that he did not need an Individualized Education Plan. The true Readers Digest version...there is so much more to it. I even have a post in my archives that I never published going on and on about how the decision of one person can affect a child's entire life. Well, Wednesday things came full circle.

Cole had a rough night, which he has every night this last week since the med change and the addition of the barometric pressure issue from the thunderstorms. I knew that we had his eligibility meeting at 11:20. He did not go to sleep until after 1 am, so I just let him continue sleeping and got myself ready. If you wake Cole up, he has more seizures. His brain responds much better to a natural process of waking up. He's been finally waking around 10, but here we were at 10:30 and still no movement. I lightly touched him, etc...nada. Well, long story short, we were late. I ran in there probably looking like death warmed over and the committee assured me that we could have done this on the phone. No way...I want to hear it for myself, in person.

All five committee members (two of which have PhD's the other three Masters) solidly agreed that Cole needs services and a structured IEP. They thoroughly explained that he had a regressive disorder and mentioned all of the things that I was concerned about. No one even took in to consideration how I felt in the old district. He begins school in September! What a moment for me. They were just doing their job, but I sat there doing a victory lap in my head with Chariots of Fire in the background.

We still have to create the IEP, work out nursing, talk about the dog, etc. but what a feat for us as his parents. We want him to have special education. We dream about an IEP. These are the things that we hope for now, in regards to our son. We know that on average, kids with Dravet plateau at about age 5. Cole is not so average, but we're going to give him every chance we can to help him. I can't wait until that first day that I get to put him on the bus...I will be crying, but not the usual "My baby's going to school" tears; they will be tears of joy.

Friday, June 17, 2011


I'm past burned out...I think that the fire has been hosed down and there are just smoldering ashes left.

I know that the details of all the ups and downs are getting a little boring around here.

Promising to have a happy themed post soon. A HUGE battle was won this week.

I'll get around to celebrating it, as soon as I can surface from the beating that I have taken this week while fighting three others simultaneously.

Peace, Love and Chocolate!

Tuesday, June 14, 2011

The Depakote DL

Cole's level came back...after 4 phone calls and a few e-mails :)

It was 95, a trough, first thing in the morning before his dose. The spectrum for therapeutic is typically 50-100, except that each kid is different, and some need to be above this range in order to have the maximum effect. All in all, it was on the high end of this range for a relatively small dose.

Our plan of action is to decrease the depakote from 500 mg a day (250 morning and night) to just a small dose of 125mg daily to see how the myoclonics react. We decided to try this first before going straight to adding another med. One that is not FDA approved and therefore costs more probably had something to do with it too!

Today was the first dose on the new regimen, after skipping his usual 250 last night. Let's just say...I'm glad we went down instead of up! Cole has had the best day seizure-wise that he has had in weeks. The morning was rough and there was still plenty of activity, but nothing compared to the last few days of constant jerking and twitching.

Fingers crossed.

Sunday, June 12, 2011

Pillow Talk

So we skipped out on the birthday party. All 3 of us had stomach issues within a 24 hour period (which have resolved thank goodness, must have been that gluten-free pizza) and we were not going to chance getting our friends sick. That's a major rule in our little community...if you're sick, stay away! Instead, we just kicked it here and had more seizure activity.

I'm wondering if his body is loving the daily doses of Valium tablets and Diastat? Could be addicting. We'll see, I guess.

In other news, there has been some severe thunderstorms around these here parts and it has thrown Mr. C for a loop, as is to be expected. Bedtime has not been happening until, oh 11:00 pm or so for the last three days...and even then he doesn't stay asleep. Time to pop in a Doris Day movie (in my room) and just hope and pray that he settles down (in the next). It's midnight and my body is wired for extreme seizure awareness. When is that nurse coming again? :)

Saturday, June 11, 2011

Shout Out

Thanks to all of you who called, texted and responded on facebook. This is something that I truly treasure about our community. The doctor will give me one option, for now, but I want to have multiple plans. As well all know, Dravet means constant change.

After polling the masses and see what is working for everyone else-I got the same answer over and over again and I feel like I can make an educated decision!

We will let everyone know what Cole's depakote trough was as soon as I can (probably Mon). After 5 blood draws, you think I would know by now :)

It seems like the answer to decreasing the myoclonics is to add Clobazam. Hopefully, I can get that pretty little Medicaid number in the mail in the next week. I know we're approved-I just need the card! Clobazam is covered by VA Medicaid...hooray! Patience, Niki, patience.

Thanks again. A huge pat on the back for everyone who responded. We'll keep you posted.

Dazed And Confused

This week.

Things have just been getting worse it seems. We're still gung ho on trying to get out and live a little. We even went on an adventure to IKEA and had gluten-free pizza at a restaurant! Hooray! I'm tenatively planning on taking Cole to a birthday party this weekend...I know, could be a total disaster, (good thing the birthday boy's brother has DS). It looks like we are doing fabulous on the outside and I'm not going to lie, being able to spend time together outside of our home has been incredible. Seizure-wise though, things have been rough.

Brian and I have noticed some big improvements since the start of depakote a few weeks ago. Cole's speech has been more clear, he has enhanced motor skills and his overall tolerance for being overstimulated has been increased. The latter has been the biggest pay-off. We've been out and about again, within reason! It feels like going back to being housebound would be equivalent to someone handing us a pair of prison issue striped coveralls and saying with a pitiful look, 'Good luck in there". Cole has been, on average, happier and we have too for the most part.

The thing that really sucks (pardon my French) is that his seizure activity has been through the roof! There has been such an increase in myoclonics especially. It seems like each time I look at him, he is jerking. I'm shocked that he isn't more worn out, because when he is sleeping it is like being next to a machine that is programmed to twitch. I have not even attained a good shirt for the dog this week because he has constantly smelled like a seizure and would have nothing "normal" to compare it to. Well, normal in Cole's world. The whole process of scent work depends on comparing the smell of "seizure Cole" and "normal Cole" so that the dog can tell the difference and know when to alert. I have a feeling that if we had our four legged friend this week, they would be working hard. Something like our friend Hobo did with his girl yesterday. He wouldn't even go outside for a potty break. Sweet Hobo...we love him! I have given Cole Valium or Diastat every day this week for clusters of partial-complex and myoclonics. Every day. It almost transcends from rescue med to daily meds, just at random times. It's not when he wakes up, or even when he is getting close to needing another dose. There is no peak that I think changing to giving the Depakote three times a day would fix. It is an all-day, every day occurrence.

So the question is, once again, what do we do? He IS having more seizures on this med. Strange as it may seem. Yet, there have been improvements related to controlling the sub clinical seizures, as evidenced by his speech and motor skills. Do we stay on Depakote for a little longer, upping the dose and trying to get therapeutic? Do we just back off now before it gets worse? Do we try something else? Do we go back to just Keppra and see its efficacy without the diet? We can't jump back on the diet train right now since Cole has obviously shown that he is not going to stay within its boundaries and still eat by mouth. Am I ready to have a child that is tube fed daily? I think that I know the answer on that one...nope, at least not right now when he can still take things orally. We also know that we are not ready for Stiripentol yet. The price is one thing, but learning from other parents we also have found that it can lose its efficacy over time, just like all of the other drugs. Cole is only 3, I don't want to use my Ace in the Hole yet.

So many questions, and no clear answer. I would love to hear what you think. Now I know that over 200 of you check this page out daily, sometimes more. Then again, maybe Google Analytics is lying to me and there is just some bot set up in Indonesia that visits my page every half hour or so :) Please, come out of the woodwork! I think that you have all fallen in love with Cole too and know that a lot of you have been in similar situations. I'm just at the end of my rope right now when it comes to meds. My brain has slipped back into the confused haze and it is fighting back most at night. I'm lucky if I stay asleep for more than 20 minutes before I wake up again with a racing heart. I really just want what is best for him, but there is no clear answer in sight.

Friday, June 10, 2011

But Not A Real Green Dress...That's Cruel.

I have a Soundtrack For Life running through my head at almost all times. For a lover of music, it seems like a normal thing. I get lyrics stuck in my noggin first thing in the morning, or can't get them to turn off when I want to go to sleep. I can think of a song for almost any situation.

The other day, this was stuck in my head ALL day long. It got me thinking, what would I do if I had a million dollars? Well, a cool mill doesn't go very far in my part of the country, we're not in rural Idaho what would I do if I had 10 million dollars?

I think I would spend it on this (instead of monkeys, green dresses or pre-wrapped sausages for my tree fort's refrigerator)

* Pay off our medical bills/student loans. Dump a million in to our future medical expenses account, allowing us to get stiripentol, IVIG or any other treatment that we feel is the best for Cole.
*Adopt babies
* Hire my brother-in-law to build a house, much like the one described here. Win-win. Don't worry, I already have the plans laid out, kept in a secret box where Cole can not get to them and color all over! This is what I do in my spare time, people :) I would possibly get Sarah Richardson to come down and help me decorate. I seriously believe we could be BFF's...Tommy too!
*Hire a full-time Nurse Practitioner (with a really giving personality, maybe steal her from the Peace Corp or something) and turn her into Super Nanny. Get her up to date on all of Dravet's quirks and other special needs mumbo jumbo and then send her out to my friends (Dravet or not) in two week increments to provide respite for them.
*I guess that I'm going to have to buy an airplane and a pilot to take my Super Nanny around the world. It also means that I won't ever have to take Cole through security again and can just fly out of private airports. Think of the money I'll save on baggage fees! When we (or the NP) are not using it, I'll loan it out for people to go to Miami or France for consultations.
*A ski boat for Brian. It is the only thing that he consistently says that he wants.
*Laser hair removal...enough said
*Start a research fund in Cole's name
*Probably more than a couple of pairs of shoes!
*Get at least three service dogs for people, therefore changing their lives forever.
*Maybe a horse or two. Won't have enough cash for Lotus Ranch :(
*Start a foundation that gives away iPads, cooling vests, swings and other equipment not covered by insurance

The $10 million is gone; man, private jets are expensive! If I come in to a bunch of money, hold me to it!

Wednesday, June 8, 2011

Food For Thought

So this probably has nothing to do with epilepsy, then does.

People in my new place of residence are, on average, more edumacated :) Conversations come up regularly about school, etc. If you know me in person, you know that I LOVE school. I was the first on one side of my extended family to graduate from college, and my love for books probably made me an outcast when it came to making friends or on family vacations. I would often get lost in my books and it probably made me kind of anti-social for many years. Que sera sera. I'm making up for it now! I love words and frequent the thesaurus. I even used majestic in a third grade essay. That being said, I never finished my graduate degree. I have two bachelor's degrees, but I started a Masters in Public Health, and at one time I fiddled around with the idea of going to law school to become a Gaurdian Ad Litem. Well, Cole came along that that ended my formal education. I am now getting schooled in the class of reality with minors in Dravet and Neurology. Sometimes I think that I want to go back and finish my graduate work. Other times I think, "Life's too short". Given the chance, I would go to culinary arts school and just do something that I love. I can stop my Save The World mentality and just feed people. I'm good at that anyway :) I may not become Dr. Niki or Judge Niki or even a hospital administrator. I do know one thing though, food brings people together.

Who knows? One day I may convince Cris to come out here (since we're not leaving any time soon) and we can start Farmer's Daughters Catering and Bakeshop. Until then, I'll just keep feeding people.

The first time I had carmelitas, my sweet and multi-talented friend Karen brought them to a Dravet mom's lunch. My friend Rebecca, who also has a son with Dravet, has a sweet blog (literally) and is a talented baker. So I guess when I think of these cookies, I think of Dravet and the special friendships I have made because of it. I used Rebecca's recipe, just changed up a little, last night for a church function. So, giving credit where credit is due, I totally lifted her recipe. There are others online. I think there were over 10 requests for the recipe last night. So, thanks to Sweet Escapes (and a little Dravet mom love), I present the recipe for Carmelitas. My sister might be a professional pastry chef, but I can bake with the best of them most days.

Just FYI this recipe is for a 9x13 pan. I doubled it and made it in a cookie sheet. You will find that you always need more than just a 9x13 pan!!

2 Pkg. Werthers soft caramels (I used the regular bulk caramels from the grocery store. I made more caramel than the recipe calls for since I like it so much!)
3 Tbs. Evaporated milk
2 Cups Flour
2 Cups Quick Oats
1 1/2 Cups Brown Sugar
1 tsp. Baking Soda
1 1/2 tsp. Salt
1 Cup Melted Butter
1 Pkg. Chocolate Chips (always use good, quality chocolate)

Start by making your caramel. Unwrap all of you caramels and add the evaporated milk. *Note: this is the most laborious part of the whole recipe. If you have kids, make them pitch in with the unwrapping. Since I made more caramel, I added more evaporated milk.*
Microwave for a minute, stir and microwave for one more minute. *It took longer than two minutes for me since I doubled the recipe, live at a different elevation and have a microwave that is circa 1983.*
The caramel should be smooth and soft. Set aside.
Place all the rest of the dry ingredients but chocolate chips in a large bowl. Pour the melted butter over the top and mix until the butter is combined well and the mixture is crumbly. Spread half of the dough into a 9x13 greased pan. Bake at 350 degrees for 10 minutes. Remove from the oven and top with chocolate chips. Next pour your caramel evenly over the top of the chocolate chips. Finish by sprinkling the rest of the dough on top. Press down slightly then return to the oven for another ten minutes.*I had to bake it for an extra 8 minutes, once again, because of elevation*

Rebecca has great pictures on her website. Enjoy!

Sunday, June 5, 2011

Please Keep Hands And Feet Inside The Car At All Times....Thank You, And Have A Nice Ride.

Up and down, around and around...this week has been a ride. Daring, sometimes nauseating and even thrilling.

We have come so far since our move three months ago. Some things have gotten better, others worse, but over all I think our attitudes have had the biggest change. We have always tried to span the gulf between realistic and positive and slowly over time we have developed one of the strangest senses of humor out there. Thing is, I know plenty of other Dravet parents who come with the exact same brand of humor and speak the same language. Thank goodness for them!

I still can't believe that we went to the beach last week. It seems like I am telling anyone who will listen about it. Yes, it didn't turn out great...but we did it! What an adventure :) We spent part of Memorial Day with family and were sad to see Uncle Travis go home. Another part of the day was spent with friends. We actually took Cole to a barbecue. Am I insane? Maybe! He was outside, with a bunch of kids. It was a death-defying drop part of the ride. You know, the part where your stomach feels like it is going to come up through your throat and you are wondering if this was such a good idea after all? Yet, we did it. One of us was constantly following him around as he explored everywhere and really didn't want to interact with the other kids (typical). I'm sure all of these new friends of ours are getting used to me not looking them in the face when they are talking to me because I am trying to track my 3 year old. We stayed longer than I had anticipated before the heat got to him. Even with the cooling vest, hat and the FL-41s it was too much. However, we did it! I keep saying that :) We went full well knowing that he was probably going to have some major seizure activity. On to the next climb, a little valium tablet (loving these) through the g-tube, a cool down in the air conditioned house, and we were on our way again. We went home before every one else, but at least we were there in the first place!

It was another week with rescue meds almost every day. Lots of clusters and another death-defying drop that included oxygen saturation at 28%. Cole stayed really low for over a minute, even on 3 liters and we were about to call 911 for the first time in a long time. I hate it when I am chanting "Breathe! Breathe!" and watching the numbers just hover in a scary place. He finally pulled up to about 70 and we decided not to call. Every time we wonder if this is the one that will take him from us...every time.

We went to the doctor on count this three separate occasions, with four different techs to try and get blood. I still don't have the results, but Cole was such a trooper. His poor little veins have just had it and he is probably dehydrated from his lack of eating even though I have been pushing fluids. I counted over 9 pokes with a lot of digging to try and get a good draw. Two blown veins and now some wicked bruises. We also had to re-do three tests because of poor flow and clotting, so I think he ended up giving around 10 tubes of blood. After the fourth times a charm draw, I felt like he deserved a reward. We have been backing off of the diet again to just try and get him to eat something, anything. SO, I was wild and took him to Chick Fil A. It was about 3:30 in the afternoon and not very busy. I bathed him in hand sanitizer and then trooped him in there to have french fries. I admit, I had a teary episode right there in a fast food restaurant. It was one of those "Is this really happening?" moments. Something so simple as sharing a thing of waffle fries with my toddler brought me to tears. I seriously have had times where I couldn't have imagined it happening. I then got even more crazy and let him try out the play land since it was empty. I know, I'm a rebel! He started jerking as soon as we entered, because it was so new, exciting and colorful. He slowed down a little though and I decided to wait and see what was going to happen. He had SO much fun! I only let him stay for about 10 minutes, but the joy I got from seeing him do regular, little boy things was enough to bring a smile to my face multiple times this week. Finding things to be grateful for this week have been awesome. Even if he's been having lots of seizures, we are sending plenty of shirts to his dog! Even though it seems like they have drawn all of the blood out of his little body, at least he doesn't need a transfusion! It is a conscious effort every day to find little snippets of good amongst the trying times.

Cole went back to the school for some more testing this week and preformed more towards his baseline. He even threw some toys at the therapists head for good measure. It was an excellent demonstration of how he can be so different from day to day. We also learned that Cole is favoring his right side and is trembling on his left. Time for orthotics...already. The psychologist called me back and let me know that she is positive that he is going to qualify for special needs pre-school. Hallelujah! We won't start until Sept, and there are still a few more meetings to get things set, but this is something that we have been waiting to hear for a long time. I know there is a long road ahead to work out nursing, IEP, bringing the dog, etc. I already feel like he has missed so much. He should have been in continuous therapy for the last 7 months, but has missed out because of the move, the old district, and on and on. Just another part of the ride I suppose.

An incredible part of the week had to do with a visit from our new nursing agency. We filled out all of the paperwork and tried to put together a tentative schedule. I was thinking we were going to maybe get 8 hours a day, 5 days a week of help from a personal care attendant (CNA) from our previous conversation. Then, about 240 hours of respite from a nurse for the year. I was absolutely shocked and overwhelmed to find out that Cole qualifies for 12 hours of nursing a day, 7 days a week, plus 720 hours of respite for the year. WHAT?! You're telling me, that I am going to have a nurse here to help me every day? I about peed my pants! I can leave the house! I can go to the store, with or without Cole! We can go to all three hours of church! I feel like I've just won the Golden Ticket! Can you tell that we are kind of excited about this prospect? We can go on a DATE, maybe I can go to see a movie for the first time in over a year! The agency I chose has been great to work with and they have already gotten everything in to place. Now I just have to hurry up and wait for our Medicaid number. They have 45 days to get it to me and I guess I have a few weeks left of waiting before I can call someone to harass them. As soon as we get the number, we can start interviewing nurses. I will get a core staff of three nurses that can all cover for each other, learn everything about Cole and be here on a consistent basis. Right now, it looks like someone will be here Mon-Fri from 11:00 am to 7:00 pm. We will also have night nursing 3 nights a week. I can not even BEGIN to explain what this means to us. Brian and I have not slept in the same room on a consistent basis since Sept 2009, when we found Cole face down in his crib seizing. Tues, Fri and Sat nights I will have someone who is being paid to sit up and listen to my son breathe. Oh, the emotions are hard to describe. I can also request extra hours for respite. It's kind of a pinch me moment, I'm almost afraid to believe that it is really happening. I keep on thinking, "Some thing is going to happen. They are going to call me back and tell me that they scored him wrong, this isn't covered." I guess I'll just have to wait out this loop de loop.

So, does this mean that I am off of the hook now? I can gallivant about and become a lady who lunches? Um, no. There are 24 hours in a day and Cole requires care every single one of those hours. I even worry about him in my sleep. Just because these people are nurses, does not mean that they will have my mothers intuition. It will make me end up being a better mother over all because I will have time to clean the house, cook dinner, do laundry, and all of the other things I have been neglecting, that stress me out all of the time. I will have more time to focus on Cole and doing fun things when it is just the two of us because I can take care of the not-so-fun things while someone else is expertly watching him in the next room.

Cole has been picking up so many new things since the addition of depakote. His memory is getting better and it seems that he is more aware of his body. He pedaled a tricycle for the first time in his life this week. He has never had the coordination for it before and has always scooted it around with his feet. We thought, why not see if potty training will be different with the depakote? So, I gave it a shot and he went by himself, without prompts. He actually could understand his body enough that he could make it through the whole process! This deserved another celebration, so we took him to Red Robin. I knew they had balloons and it was a place that we used to take him before the diet and overstimulation problems. He, of course, went crazy. It was too loud, there was sun coming through the windows, we had to wait while sitting down for our food. However, it was a big moment for us as a little family and in the end Cole ate more there than he has eaten almost all week. Go figure! We even took him to the mall on another night. Horrible decision, he totally melted down, but he didn't have a big seizure! Progress.

With all of the adventures this week, I got to end on a high note. I got to spend some quality girl time with another Dravet mom who lives about 20 minutes away and go out, just the two of us. You should have seen us! We were just kind of staring at each other wondering what to do next. We don't even remember what it is like to be social :) We had a great time though with some great food. We came home early, but who cares? It was so nice to not have to have a plan, be prepared for an emergency, and just wander aimlessly around some shops. It is so wonderful to be with someone who speaks my language. I love all of my other friends, but the instant bond and connection I feel with these other women is something that I can't explain. There are some of them who I have never met in person, but would probably turn to in an emergency over someone that I have known for years. We're making it at least a once a month tradition and I can't wait to do it again! Wow, this is getting long-winded :)

I must say that one of the hardest things to adjust to during this move was leaving my support system. My friends (even though we rarely saw each other), my family, our doctors, and my neighbors. I feel little by little we are starting to get the opportunity to invite other people to step on to this wild ride of ours and come along, even if it is just for a few hours. We just have to go over the safety instructions, remind them to fasten their seat belts, hang on tight and then get ready for the thrill of a lifetime.

Wednesday, June 1, 2011

There's An App For That

For all of those wanting my list of Apps for the iPad, here is a collection of ones that I like, ones that were recommended to me and ones that are recommended by others (such as school districts, etc). Some I placed in more than one category. I would suggest to all of you virgin iPad users...if there is a cheaper version (free) of a particular app, get that one first. It is good to know if your child is actually going to use it. If there is an app that you really like, go to the creators page. You could end up discovering that they have also made others that are just as great.

*=A favorite for Cole
App Name-Creator-Price

*Bubbles-Hog Bay Software-$.99. Great for fine motor skills. Can be used by low functioning kids. All you need to do is touch the screen.
Pocket Pond-John Moffett-Free. I don't recommend buying the upgrade on this as you can be charged for buying "fish". Cole likes the sound of the water when you touch the screen.
Art of Glow-Natenai Ariyatrakooi-Free. Similar to Bubbles.
*Baby Piano HD-Dream Cortex-$1.99. A great company that makes interactive apps, we have 3 from them. Cole loves to play the piano
**Sound Touch-SoundTouch-$2.99. This also has a free version. Cole uses it every day. It has multiple categories, with pictures and sounds. Each animated icon has over 6 real life pictures and sounds to associate with it. Can be used for low functioning kids, you only have to touch the screen.

Motor skills
*Alphabet Car-Dream Cortex-$1.99. Cole likes to "drive" the bus. You hold the iPad like a steering wheel and navigate. It is also educational.
Clicky Sticky-Invocore-$.99. Teaches fine motor skills with dragging "stickers" into a picture.
*KidArt-GP Apps-$.99. Has three themes. Can "paint", drag stickers onto a background, or make your own creation and save your masterpieces for a screen saver.


*Fish School-Duck Duck Moose-$1.99.
Baby Flashcards HD-Dream Cortex-$1.99.
**Sound Touch-SoundTouch-$2.99. This also has a free version. Cole uses it every day. It has multiple categories, with pictures and sounds. Each animated icon has over 6 real life pictures and sounds to associate with it. Can be used for low functioning kids, you only have to touch the screen.
Alphabet Tracing-Oncilla Technology-Free. Teaches how to create letters and numbers. Follow a train with your finger, also has the dots like the old school worksheets.
*Alphabet Car-Dream Cortex-$1.99. Cole likes to "drive" the bus. You hold the iPad like a steering wheel and navigate. Also teaches words, etc.
*Colors For Toddlers-Hello Kensho-$.99. Not even kidding, this is what taught Cole his colors. After trying flashcards, crayons, playdough, objects, etc...this simple app taught him the difference between green and blue.

Interactive Books and Songs-All of these have interactive capabilities. When you touch the screen, it will sing to you, read to you, or create a reaction in the characters.
*Itsy Bitsy-Duck Duck Moose-$1.99. This is a great company, that makes wonderful apps for kids. They are very interactive and Cole goes to them day in and day out.
*Wheels On The Bus-Duck Duck Moose-$1.99
*Old MacDonald-Duck Duck Moose-$1.99
*Toy Story Read Along-Disney-Free
*Lightning Was Here:My Puzzle Book-Disney-$.99

Special Needs Specific
*AutismXpress-StudioEmotion-Free. We also have the upgraded version. It has been helpful for Cole to start to understand how to express certain emotions.
Tap To Talk-Assistyx Inc-Free. I chose this instead of the really expensive Proloquo2go that is recommended by a lot of speech therapists. Pro is very useful for kids that are non-verbal. I wanted Cole to at least be familiar with the concept if (heaven forbid) he ever loses his speech.

Other or Just Plain Useful
*Screen Cleaner Pro-Jamoke Innovations-$.99. Dogs licking the screen. Cole absolutely loves it. Go figure.
My Potty Chart-Red Piston-$.99. Interactive sticker chart.
Talking Roby-Outfit7-Free. Cole's speech therapist recommended this one. The robot can speak back to you, dance, etc.
FeverMeds-EllaSeven Software-$1.99. Developed by a Pediatrician (who happens to be related to me), you can stop forgetting if it is time for Motrin or Tylenol. It has a timer that will remind you what med, what dose and when to give your sick little one fever reducers. I know it's been helpful for me when I lose track of which med is next and is it 3 hours or 4?
This spreadsheet is very well put together. It is a review on apps to use for autism, built by three different bloggers coming together. I found the reviews to be really helpful and am looking into getting some of the recommended apps for Cole.

Recommended by School District in Utah
AAC Software
Proloquo2Go - $189.99
iConverse - $9.99
iCommunicate - $29.99
iPrompts - $49.99
Look2Learn - $24.99
TapSpeak Button - $0.99
TapSpeak Button for iPad - $9.99
Speakit - $1.99
DAF Assistant Legacy - $9.99

Study Skills
FlashCards Deluxe - $3.99
myHomework - free

Paper Desk LT - free
Dragon Dictation - free
Evernote - free

-and a little plug for my brother. Area 51-NSB-$.99, has nothing to do with development, but it is a really fun game. He created it..go and buy it (and watch out for those black holes)! My personal favorite is iBooks. I'm an avid reader, but rarely get to go to the bookstore or library. I love being able to download books and not have to go to the store! Plus, I don't have to find a place to put the book when I am done! I also like Netflix :)
Photos by Capture Me Candid