The List

In the last few weeks Cole has had a downward spiral.  For those who have been asking and have Dravet kiddos of their own, here is the list of things that we have tried and the rundown on what has been happening.  This isn’t even the half of it, but for record keeping purposes I will hit the highlights.

October-Cole starts seizing more often.  At this point we have practically stopped using benzos and rescue meds in general.  He has once again become immune to them and we fear withdrawal symptoms.  Also, in prep for starting Onfi.  Only used rescue meds 3 times all month.  We go to Camp For Courageous Kids.  I still need to write about that.  It was wonderful!  Had our first 3 Tonic Clonics in one day.  We stopped Potassium Bromide in late August and the month of getting it out of his system has ended.  Start Onfi.  Largest break in between major seizures was 4 days.  Every seizure looks different.  Different types, different times, different lengths.  There is no regularity or ability to predict what is coming next.  This has kind of been the theme of Dravet, but this year has just been mind blowing.  It makes Sluggers job extremely hard and training new nurses difficult. 17 major seizures recorded.

We prepare for Superstorm Sandy.  End up evacuating anyway.  We were gone for 5 days.  Drive 14 hours home.  The next day, Daddy leaves for NYC to help with the aftermath.  He is gone for 2 weeks. 

November-Get a small break when we increase Onfi.  Have 7 days with no major seizures.  Then things get hairy.  Daddy is still gone.  Have a nurse quit and so only have coverage 3 days a week.  Start Anat Baniel Method Therapy.  It is a very slow process with Cole and his sensory issues.  He doesn't like strangers to touch him.

Cole starts having at least 2 tonic clonics every day.  Nothing is stopping them.  Onfi, double Keppra, and rescue meds are hardly working when we use them.  Still using all rescue meds and double Keppra sparingly.  Cole starts having major regressions.  Reverts back to oral phase, acts a lot like an infant and starts sticking every thing in his mouth.  Has some potty accidents.  Loses some of the songs he knew before.

Brian comes home and the next day we leave for Miami.  Read about our Florida adventure HERE.   24 major seizures recorded, not counting nocturnal.

December-We drop the rest of the Onfi.  Cole finishes his amoxicillin on the 1^st.  We get ready to start Verapamil.  Want to go back to school and get settled into routine before we start something new after all of the travel.  Silly us.  The 2^nd reintroduces daytime TCs.  It is so weird how he has a honeymoon every time he is on high dose antibiotics.  We start a love/hate relationship with 911.  We call them at least once a week all month.  If you know us at all, you know that it is totally abnormal for us to get to our breaking point so often.  Cole continues to live his legacy and stops seizing once we call, or once the paramedics show up.  Whether we wait for 29 minutes or 8 minutes, the story is the same.  It does not work if we pretend.  He knows J We have to be serious and dial for real.  We start the Verapamil.  Cole catches a cold the first day he goes back to school and shares the love with Mom and his main nurse.  We stop the Verapamil, after one whole day!  Still not sure if it works for him, but we couldn’t know while he was sick.  Also didn’t want to take the chance of a major drop in blood pressure when he was ill.  We take him to the doc, strep negative, flu negative and throat culture is negative. He loses his voice and looks horrible, but still has some stamina.  The entire month the longest break he has from tonic clonics is 2 days, and that only happened once.  The myo’s abound.  The TCs ramp up from 2 a day to 3 a day.  Every single day.  Cole regresses further and does strange infant-like behavior like chewing on his feet and licking the floor.  We try double doses of Keppra, since that helped on the airplane in Florida, kind of.  It helps maybe 1 out of three tries.  Mom gets super sick and wants to curl up in a ball and hide.  We don’t have nurses, so this makes things interesting.  Cole, per his M.O. continues to be sick, for a long time.  At this point, Cole has been de-sating to the 30s and 40s during major seizures and will hover for minutes even with 5 Liters of oxygen.  He is congested and occasionally coughs, but it is just a virus, right?  We throw around the idea of possible pneumonia.  I am talking to the pediatrician daily. 

It doesn’t matter what we do.  If we use rescue meds, the seizure doesn’t stop.  When we used to administer medication like Diastat or Versed, at least it helped to prevent future seizures that day and would give him some sort of a break.  Cole is seizing again within a few hours, even with Diastat.  Has 26 major tonic clonics (this is not including the short nocturnal ones) in 12 days.  During all of this we call Dr Miller.  He suggests that we start Bromide again for a short-term solution.  We know that he broke out in a rash about 2 ½ weeks in to it before.  So, back to dog medication we go.  Immediately we notice that Cole’s speech declines.  By the second day, he is slurring his words.  By the third day, he is drooling even without seizures. We are just looking for a short-term solution.  Something to just break the cycle of seizures.  We know that Cole can’t handle long term Potassium Bromide.  We see our son slipping away from us.  Call Dr Miller again.  Don’t want to wade into any more old medications.  We could start increased eye fluttering, maybe even those evil drop seizures could come back?!  Things are already bad here, why would we want to possibly make it worse?  So, we get into “illogical and completely bizarre” territory.  Discuss things like IVIG or prednisone.  Heaven help us, ACTH comes up.  Also high doses of antibiotics…to control seizures.  Illogical.  Remember how Cole had a honeymoon with the Amoxicillin?   As bizarre as it seems, some kids with Dravet have decreased seizures on high doses of antibiotics.  There are side effects, but it is less risk than steroids.  So-we decided to start 3 days of 1000mg Rocephin shots, that day.  Cole gets 6 huge shots in the behind.  Fun...not really.  Dr Miller wants to keep up the Bromide for a week and we talk about steroids as the next approach.  By now, we are on the fourth day of Potassium Bromide; Cole can barely speak at all.   He is drooling like an infant and does not want to eat.  His gait is slowing.  He is grabbing his face before a seizure, going tonic and then scratching himself.  He looks like he has been in a fight with a rabid raccoon.  Perfect for those family pictures next week.  Brian and I decide to take him off Potassium Bromide.  This entire time we are vacillating between deciding to go or not to go home for Christmas (cross country flight).  The next morning, Cole wakes up shaking like I have not seen him for a long time.  The tremoring and myoclonics are so intense that his whole body is involved.  Almost into tonic clonic territory.  We wonder if it is due to this, due to that.  Always having to play detective.  We give him a double dose of Keppra and 5 mg of diazepam.  Decide to continue with the antibiotic shots.  I say, "We are not going home".  Cole improves throughout the day and regains some speech.  He still sounds like a drunken sailor and cannot say the ABCs, but hey…he is talking!  We’ll take it!!!

The entire day of the 2^nd antibiotic shot, he does not have a tonic clonic.  We are still holding our breath, but so grateful for the small break for our child.  His color starts to come back; he doesn’t look like death warmed over.  Day 3 of the antibiotic (today), at the time of publishing, he has had two big seizures.  Better than 3!  So-if you really feel like nothing is working and your child just keeps clustering no matter what you do,  go out on a bizarre limb and try high doses of antibiotics.  Or maybe not.  It is not a long-term solution, but worth a shot.  I think.    31 major seizures recorded, not counting nocturnal, and we have 11 days left.

 I still don’t know if we are going to go home for Christmas.  But really, what if this is his last Christmas?  Won’t we regret staying just because we were scared?  Our life the last few years has taught us to live to the fullest.  So we will probably put him in a drug-induced stupor, board that plane and hang on for dear life.  Who needs performance enhancing drugs, bungee jumping, marathon running and rock and roll?  Just get a child with Dravet Syndrome and you can have all of the adrenaline rushes you could ever ask for! J

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.

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.

Messy

Sorry for the utter confusion I possibly caused by the last post.

Things around here have been messy. There have been tastes of bitter and sweet. Things have been interesting emotionally and physically. I think the dishes have been done twice all week. I have had to let go of one nurse, interviewed a replacement...and she was our first no-show for her shift. So I told them to not send her again. Interviewed another. Decided to give her a chance, she is working out okay...however, is afraid of dogs. This could totally be an issue in the future, but she says she'll "try it out". Hopefully she can get used to the idea by Nov, I just need a qualified person at this point! Our main nurse has decided she doesn't want to work on Sunday...who does? That is the only day that I absolutely need someone, because I am gone at church. Yep, on the first week free to go to church all three hours, what do they do? Make me the Gospel Doctrine teacher! If that doesn't make you laugh, I don't know what will. Following someone who used to literally write Music and The Spoken Word. No pressure! Back to this week...then the weekend nurse quit because she doesn't want to drive an hour each way for a 5 hour shift. Can't say that I blame her...but still, I actually liked her! She can't do the day shifts because she is pregnant and will be on maternity leave right when Cole starts school. Had someone call and cancel an evening respite shift, the morning before, that I have been planning since nursing even started...scrambled and replacement #2 did some pinch hitting. SO-I am hopefully moving forward with replacement #2 for Tues, Thurs. In the middle of striking a deal with the M, W, F nurse for every other Sun, she puts in her two week notice and says that she can no longer work with Cole. AHHH! We really liked her and I seriously thought we were going to have her for years. Cole wakes up every morning asking specifically for her. So, having new Tues, Thurs take the other Sun and maybe just the whole she-bang. She has said she is available M-F. So, now just need someone to do Fri night and Sat and the other Sunday, right? Doubt it will be that easy. THEN, the agency now says that they can't have the nurse take the dog to school. Say what? I told them in the very beginning that this is what was going to happen. It's three hours, with a highly trained, very obedient, very useful dog! I promise that it will make their job even easier, not harder. We'll see what happens. I am grateful that I have this problem. It has just all hit at once. It's making me wonder if it is worth it...someone remind me that it is!

On a high note, we had our first double date in a year and a half last weekend. It included lovely company, good food and some spontaneous bowling (in dresses)! Saw Julia Child's kitchen, what a special moment for me, and the original Star Spangled Banner. Went to Relief Society and got to eat free food, always a pleasure. Took Cole on an outside play date and he survived! Met another 4 Paws family that lives in our area and is also going to be in our class in October! I also got to turn in my 30th birthday present that Brian bought before we actually moved here and we realized that cost of living is not just double, but triple what we're used to. Que sera sera. We still went, saw Mr Groban and it was awesome. Also got to indulge in my new favorite right before, Chop't. Seriously, I have thought about it every day. It's probably a good thing that the closest one is 40 minutes away. I am already addicted. The Cobb and Steakhouse salads are practically life changing...and don't get me started on the local cream soda! I'm hungry...next stop, Cafe Rio! They have a brand-spanking new one within comfortable driving distance! It is a scientific wonder that I weigh what I do right now. I am prone to eating the most fat-filled delicious foods, just small portions before the nausea kicks in. Where is the girl that could polish off an entire burrito enchilada-style by herself? I cleansed last week, but still not up to full eating capacity. I don't care that I have not weighed this much since I was 18...I just want to eat and have my clothes fit! Neither are really happening on a regular basis right now. Thanks gallbladder...you are awesome, not really.

I'm seriously contemplating returning to work part time. This is a whole 'nother ball of wax that I just can't ramble about yet, because it would likely be incoherent. Just take my word for it when I say it has been a struggle. A lot of back and forth with the Public Health nurse and the doctor trying to prepare for the Medical Review Board. Knock on wood, cross your fingers and every thing else that it turns out okay.

Same stuff just different packaging. Complicated and messy as ever. We are never vanilla. More like those crazy ice creams that have 8 different flavors in one. Rhubarb and Lime Cardamom frozen yogurt sounds insane, right? Sometimes though, it is the unique combination of flavors that makes something surprisingly sweet. Sticky, messy...but sweet. Just like our life and our little boy.

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.