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.

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?

Torn

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 year...so 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?

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.

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 storm...at 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! :)

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.

Crispy

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!