Vacation?

va·ca·tion/vāˈkāSHən/
noun
1. A period of time devoted to pleasure, rest, or relaxation, especially one with pay granted to an employee.
2. a. A holiday.
b. A fixed period of holidays, especially one during which a school, court, or business suspends activities.
3. Archaic The act or an instance of vacating.
intr.verb. va·ca·tioned, va·ca·tion·ing, va·ca·tions
To take or spend a vacation.

People have been saying that they hope I am having a good time on my vacation.

Thing is, this is anything but. I may have gone overboard comparing this place to Disney. I am more than ever, being reminded of my life's circumstances. There has been no rest, relaxation or pleasure. The only one who is having any fun per se, is Cole. That is, in between the torture. Today on his activities list were things like a nephrology consult, someone scrubbing his scalp violently with acetone to remove 5 day old superglue, a fasting blood draw, adjusting to a new medication, a kidney ultrasound, the usual daily poking and prodding, a very long process of washing his scalp and laboriously combing out the remnants of the glue...5 times. Not exactly what I would call fun.I don't know of any retreat that requires bringing three binders full of medical records as part of your luggage. Brian does not have paid time off built up yet, so technically, this is not even a vacation in his employer's eyes. We are going without pay to be here. We get the unique pleasure of sitting in a small room, in uncomfortable chairs all day and speaking to doctors. There has been very little rest on my part. It's not easy to sleep in a hospital bed, with a restless toddler whose knees are in your back, arms flying everywhere. To top it off, you have to hold a button in your hand and be poised, ready to hit the trigger at the slightest movement throughout the entire night. The only one who gets room service, is Cole. The rest of us are left to fend for ourselves, cafeteria style. The anxiety of the entire thing has done a number on my stomach and it will probably take a couple of weeks to get back to normal. I wish that I was actually in Miami to lay on the beach with a pina colada (virgin) in my hand. Really, we could be in North Dakota for all that we have seen of this town. We're not even close to South Beach and the only sights we have seen are the 3 floors of MCH.The truth is, we are here because things have been getting worse...not better. Just because we have had access to great doctors and nurses here, does not mean that Cole is going to be cured or that he won't still have to struggle every day for the rest of his life. We are just hoping to give him the best chance possible at having some freedom from seizures. To actually want your child to have seizures, is one of the strangest phenomenons I can think of. Especially when you have been praying for almost his entire life that he won't have them. To wish him struggle and pain, just makes me sad.

Believe me, I wish we were in Florida to take our 3 year old to a theme park. Truth is, the money (which we don't have a lot of) spent and lost from time off, on this trip could have taken us all on a Disney Cruise...and then some. Honestly, I am worried about paying our rent. However, this is the right place for Cole. I have felt it every day, multiple times a day since we set foot on campus. It helps when every one who comes in the room tells me how adorable he is and how they wish all patients were as cute as him. Even some random older woman, who brought a couple of toys to give to children, was paraded directly to our room with a staff member to present Cole with a Handy Manny flashlight. The staff knew that he would give the perfect reaction and a gracious "thank you!".

One of my friends sent me an e-mail the other day exclaiming that reading the blog has made her "homesick for Miami". She brought her son here a few months ago. Now, I don't know anyone that wants to pack their bags and go to a hospital. I think I know exactly what she means though. She misses the support. She misses having everyone already understand, to an extent, what her little boy is going through. She misses not having to explain herself over and over. She misses the peace of mind knowing that while she is within these walls, everything humanly possible is being done for her child. So even though Brian got to go water skiing and we spent an hour and a half at the beach, this has still been a hospitalization. A tough one. Yet, the opportunity to meet other families, swap war stories and get state-of-the-art treatment for our son has made it bearable. I would do anything for Cole. Anything. And this hospital is going to help me do that.Dr. Ian Miller, physician extraordinaire

Medical Disneyland

Cole has been having the time of his life. This hospitalization has been more like a Christmas party, than the usual prison. There has been presents, games, toys, movies and magic.We are so impressed with the staff at Miami Childrens. From the volunteers to the doctors. This campus is so clean and beautiful. I don't have a lot of pictures of it yet, because I keep forgetting to take my camera when I run down to get food. It is set right in the middle of a neighborhood, so it is quiet. Amenities are not far away though, the airport is probably 10 minutes from here and there are grocery stores, restaurants and other accommodations nearby. The hospital has even purchased an apartment complex nearby where families who are staying here for a long stretch can rent an apartment for a minimal fee. It sure helps our travel costs and has been nice to have a home base to shower, store all of our suitcases and be banished for a decent nights sleep every so often.

All of the entrances are shaded, even from the parking deck, so the children who are light sensitive are not exposed to sunlight. Obviously there are palm trees everywhere. A bonus for us! Both Brian and I really miss living in tropical climates. Everywhere you look, there are beautiful murals on the walls. Some even have mirrors incorporated for the children who like looking at their reflection. The pathways are easily marked by a color and coordinating animal, so if you do not speak English, you can get to where you need to by following the green line with the turtle, etc. The family center downstairs has a movie theatre, library, computers, and even offers laundry service. Seriously, we took our laundry down, they did it and brought it back up to us for free! They also have a dry cleaners on campus, but you have to pay for it. On Wed, the parents can schedule 20 minute massages-for free!

The hospital has a live radio show with games and prizes. The Radio Lollipop staff even coms to visit the patients every day. We have had more volunteers come here to visit Cole in three days, than we have in three years of hospitalizations. They enter armed with carts full of toys, board games and art projects. Plus, they actually stick around and play with him...for hours! He loves his latin ladies :) Last night, Cole was having a hard time waking up from a three hour nap and was burrowed into Brian's lap. He wouldn't talk to me, wouldn't talk to Brian, wouldn't Skype with grandma...he was just not into it. Two beautiful latin nurses came in and he popped right up and said, "HI"! He started just chatting like he had been awake for hours. Naughty boy! We were a little offended, grandma was too, but the staff really are gracious.The child life specialists are awesome and come in every day to make sure Cole is adjusting well. Obviously he has been in the hospital a time or two, but for kids, this can be a scary place. They have someone place a book in front of his face for blood draws so he doesn't have to look at the needle, and then he gets real, full size toys as a prize for being so brave. We are going home with a full size Buzz Lightyear action figure (that I considered getting for Christmas but it was too expensive), a Mickey Mouse bowling set and a V Tech computer, complete with a mouse.He also got a mini pillow pet, a fleece blanket and bubbles. Don't know where I am going to find the room for all of this in our luggage, but he has been having a great time. He is relaxed and happy. Usually when he is participating in an EEG he is grumpy and restless because he can not leave the room.
He has had visits from three therapy dogs. We have gotten the opportunity to talk a lot about Cole's service dog. It has just made us more and more excited for the day when Cole gets to finally meet his puppy.The "Bedside Buddies" come at least twice a day with their carts of fun. He's been playing Candy Land and making pictures with glitter. Everything here is decorated to be geared towards children. Even the floor cleaning machine (which comes by every day I might add) has little wisps of steam and gears painted on it. The nurses carts look like race cars and everyone has a smile.We have seen the specialists in our room multiple times. They spend a lot of time consulting with us instead of the usual come in, get the history, go out manner that we are used to. We have seen genetics, endocrinology, neurology, epileptology, dietitian, nurse practitioners, neuropsychology, and probably some others that I can't remember. I think I've done enough gushing for now, but this is the fourth hospital Cole has been in and I have been in several others myself. This is, by far, my favorite.

Making A Difference

We loved getting to see some of our friends from the IDEA League yesterday. We greeted each other with hugs even though we have only met in person once before. It really was like a reunion. One of our friends that lives here in Florida has a non-profit foundation. When wondering what to do with her foundations money this year, she did something different. Usually she makes donations to the Brain Institute here at Miami Childrens, but she decided to give out iPads instead. She only had enough money for 6, but in her words, "this will change their life". She then launched into a sweet spill about how this was all because of me. WHAT?! People are getting free iPads because of me? Maybe Apple finally got my letter about the commission they owe me for being a traveling iPad salesman! :) Let's backtrack.....

When we got Cole's iPad, it changed our life. We are so grateful for another parent who introduced it to us as a tool for kids with special needs and not just a really cool tech toy. It doubled Cole's vocabulary, was a great tool for distraction at doctors appointments, in the car, and proved itself useful again and again with making the internet available in the grocery store and everywhere else. I could wax rhapsodical on the iPad for an extended period of time..and have been known to. It's no secret I love it. When we went to the IDEA League Conference in August, I brought it with me. I made demonstrations in the hall, ballrooms, and even one by the pool. I talked to doctors, parents, administrators and everyone else who would listen. I told them that even though it was expensive, it was cheaper than a laptop, communication device, or a lot of other medical equipment out there. I probably went overboard, but I knew how much it had helped Cole, and in turn me. One of my demonstrations was to this woman and her friends. I probably accosted them in the hall at some point since their room was near ours. We talked on multiple occasions during the conference, but I can't remember my particular demo to her. This is before the New York Times article.She said that she went home, thought about it, but didn't really believe me. How could something made for hip, tech savvy people help her disabled daughter? She kept on thinking about my gushing adoration for it though. A couple of months later she bought one, and it rocked their world. So, when deciding how to use the donated funds this year, she bought six Dravet families an iPad and an iTunes gift card. She then went on to tell me that these people don't even know that their lives are going to change today, but soon they will...and it is all because of me. To say the least, I was flattered. I didn't deserve the ovation she gave, I just wanted to share something that made a difference in our lives. She pulled out a notepad and wrote down apps I had found useful while simultaneously downloading them on her daughters.She then shared ones that she liked. I guess it just goes to show that my big mouth really did something useful for once. So for all of you that have had to hear me go on and on and on about the iPad...I'm probably going to keep doing it.

Clinic

Sorry for the late post. Last night I was banished to our little apartment down the street. By now we all know no sleep+stress+hospital food on an irregular schedule...does not equal good things for Niki. I, however, forgot that the apartment did not have internet.

Here is the post I had started before I was sent to my room.

Today we had the opportunity to attend the Ion Channel Clinic at Miami Childrens Hospital Brain Institute. This is one of the main reasons that we have chosen to focus Cole's care here, far away from our home. This hospital has the only group of specialists that focus on Dravet Syndrome and sodium channel disorders in the western world. The others are in Italy and France. Lovely locations, but no insurance is going to foot the bill :) There are other doctors in the U.S. that specialize in Dravet, but this is the only complete group that we are aware of. For a population that only has 1,000 in the world, for over 50 patients to be seen here, it means that they have the knowledge, experience and resources to treat someone with such a rare illness. We met some of the staff at the IDEA League conference in August 2010, and have had a few friends who have traveled here since then. We have been waiting for 9 months to attend this clinic. After fights with our old insurance, trying convince other medical professionals, a move, new insurance and negative time off..we were ready for this day.As a medical professional in my past life, I was more than impressed. The structure they have set up is any parents (or social workers) dream. The waiting rooms are small, so you can always see the desk and they are not overcrowded. Beautiful murals decorated the walls of the hospital, but these are just white and large television screens are in each corner. However, if your child is prone to overstimulation, they have a separate room the has hardly any patterns, no tv and some some toys, set off to the side. They really have thought of everything. On clinic day, there are no other neurology appointments at the Brain Institute. Only the sodium channel kids come and it is more like a family reunion than a doctors appointment. The kids run free in the waiting room, and you don't have to worry about them disrupting anyone, because all of the staff and other parents already know their name. You are then shown to an exam room and you just stay there as the doctors come to YOU. In one room, on one day, you can see 5 doctors..and QUICKLY! That is unheard of in other hospitals I have been to. The dragging your child back and forth on different days, at different times can be life consuming. You have to rotate your entire schedule around the specific openings, because who knows when they could see you again? It is so refreshing to know that on the second Wednesday of every month, if I needed an appointment, I would be seen. You can make other appointments for emergencies, but wow-that would just make life so much more simple.After clinic and seeing your doctors, everyone goes to the conference room, where they serve lunch and have a speaker. Once again, it is like a family reunion with the chatter floating around the room containing words like tonic-clonic, stiripentol and respite, instead of conversations about Uncle Albert's latest knee replacement. After everyone is finished eating, the speaker (usually one of the doctors from the clinic or another staff member from Miami Childrens) starts a discussion about a certain topic. The specialists are all there, so they can hear the parents concerns, wish list and progress from the previous month. There were physicians holding children during lunch and interacting with everyone like it was a true family gathering. This hospital realizes that it is not just about the medication and the diagnosis. Having a sick child is about an entire lifestyle change and every aspect is affected. Brian and I just stared in wonder most of the time. This hospital is so beautiful anyway, we felt like we were being transported to some sort of medical Disneyland! All of the pictures are from the luncheon in the conference room, so obviously it is not geared towards kids. I will post pics of the beautiful grounds and rooms soon!

They usually have someone to watch the children in a room across the hall during the speaker, so the parents can participate in the discussion. They pre-arrange for someone to come and sit with your child if they are on the unit so both parents can attend. Cole prefers people with carts of toys to us anyway :) Everyone signs up to get and e-mail afterwards with contact information of everyone attending and leaves with well wishes from doctors and parents alike. No one cares if your child starts screaming and clapping in the middle of a presentation. Everyone also has developed the weird sense of humor that is just like yours. It was truly a great experience.For anyone who is reading this that has a child with Dravet Syndrome, I encourage you to look into Miami Childrens Brain Institute. The staff is warm and friendly and the treatments are cutting edge. They get two thumbs up from me, and that is kind of hard to achieve.

Might As Well Laugh About It

Cat's out of the bag...my chest isn't real.
and now most of the doctors with the Ion Channel Clinic know it.

It's no secret in my family that I have Victoria's Secret to thank for helping my clothes to fit. I don't know if it is mutation related or what, but I have a short neck, small shoulders, no waist and a pre-pubescent rack. So, I employ a hefty brassiere with gel inserts to help me look a little more my age. You kind of have to if your other option is a tag that says "Nearly A" instead of B, C, or DD.

This morning, Cole slept in like he usually does. I was in the hospital bed with him, my thumb on the trigger, ready to push at the slightest jerk. However, we were one of the first patients on the Dravet rounds. It helps that there are only 3 of us here right now :) The doctors all came piling in whilst we were still sleeping and I only had time to raise my head up on my elbow and grab my glasses before they launched into the plan for the day. I was hoping that I did not have old mascara smeared across my face and that my hair was not sticking on its end. I was certain that my bra was tucked underneath my pillow and I kept the covers pulled up under my armpits, while still lying down. I applaud people that can sleep with an underwire, but me...not so much.

It was not until the doctors left that I realized to my absolute horror that the aforementioned, dingy piece of equipment was laying out in the open on the rocking chair, right at eye level, next to the bed. Cole had another episode of soaking the sheets in the middle of the night and I had forgotten that I had placed it there while we changed the bed at 4:30 am.

They did not say anything during our half hour exchange, but I know they had to have noticed. Obviously, the only one it could belong to was me. Oh well, I'm sure that they chuckled to themselves later :) I'm positive they will eventually forget, but I'm going to add it to my long list of embarrassing moments.

The Beginning

We arrived in Florida last weekend and enjoyed a few days with our family. The weekend before I was in three inches of snow, freezing. This time, it was in the 80's and we went to the beach. I think I prefer the weather here :)Don't get blinded from my un-naturally white skin. Haven't seen the sun for a while. It now resembles a paint horse. Red and white splotches. I guess that's what I get for self applying my sunscreen! It was sure great to see Cole laughing and smiling. He kept saying, "I am happy!" He even turned to me and said, "I glad you happy, Mama." I think that he could just tell that I was grateful to be there with him. He had not been to a beach since Sept 2009. A long time considering his parents love of the ocean. I had a few teary moments, just realizing once again that with a lot of work, he can have a good life too. I think I am just turning into a blubbering mess. I started to cry when we were coming through the airport and saw a Give Kids the World Village staff member waiting for their wish kid. I need my grandma to tell me to, "Stop your boobing Nik!"Cole did great on the plane, thanks to Diastat :) He also did wonderful at the beach and in grandpa's pool. He only had one major seizure the entire weekend, but it was less than 3 minutes. He is sure going through a good phase with GTCs since he has gotten fat back into his system. Apparently, getting off keto is not an option for us :)As usual, he is not being totally cooperative. He is right in his window for a long seizure, all hooked up to the EEG and just having lots of small ones. He has never had a generalized tonic clonic while hooked up to an EEG. It is always weird to hope that he has a really bad seizure.We are really liking Miami Childrens. It seems like we have been waiting so long to get here. It has taken a lot of time and money, but we already feel like there is a good plan for our future. We are grateful to not have to explain ourselves to every single medical professional that comes in the room. We are also continuing to be impressed with the Dravet clinic staff. They weren't just putting on a good show in Connecticut :) They started Cole on Depakote yesterday, we had already discussed this before we came. So far, he is doing okay. Just restless as usual.

Hospitalizations are so hard on him, especially if he is "healthy". Being tied to the wall for 5 days is going to be rough! He loves to wander, but has to stay either in the bed or on the chair so the camera can capture all of the seizures. The doctors have already told us to stop pushing the button for the myoclonics and absence seizures, they have PLENTY of data! So, I don't have to ride the button to mark anything over 15 seconds. It's not even that I am trigger happy, he really is having that many seizures. I'm interested to see how many more he is having compared to the EEG last year.

Away

April wasn't the greatest month. For anyone around here. We did break through some barriers and have a little bit of fun in between all of the chaos. I am proud of the concentrated effort we made, otherwise I think someone would be talking to me through a little plexiglass window, while I was in my own, personal padded room.

I took a very brief hiatus and was able to see many people in a short period of time. Thank goodness for skymiles, eh? :) It was cheaper than therapy! lol Getting my hair done, Music and the Spoken Word, Little America Breakfast Buffet, some shopping and a good chin wag or two can cure almost any set of blues. Don't think murderous thoughts E, for me putting this up. One of these days we are going to get a decent picture of the both of us :)After a late night arrival, I got to see sweet V for the first time and squeezed in meetings with some of my closest friends and family. It was super convenient that I came for a wedding, so I got to see family members that I have not seen since the last wedding, July 2010!The weekend was a complete whirlwind full of wedding dress shopping for my little sister, hugs, and three inches of snow. Can't say that I miss blizzards at the end of April! I even had an impromptu birthday party thrown for me that included a dozen roses, a cake, candles, and the birthday song via Macbook Pro as I was running out of the door. It lasted 5 minutes, but the hostess was the sweetest person on earth. Love you C! I got to hold multiple babies that made my empty womb cry out in loneliness, but after I repeatedly told it to shut up, I snuggled to my hearts content. There is nothing better than holding a sleeping newborn.A very short, wonderful break to prepare for the next week ahead. The last few days have been full of organizing and re-requesting medical records. It is so hard to get them when you can't be up in their face about how important it really is! Laundry, lists and phone calls. Can I just say, it was so wonderful to only pack for myself last weekend?! I did the whole thing in an hour, not a week :) Miami, here we come...get ready for Mini-Hulk, I'm sure he'll touch your hearts too.