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.