Sunday, January 29, 2012


Blogging has been hit and miss for the last few months. Due that my readership is largely made of special needs moms and the random relative, I am sure that YOU understand...I am just not sure that I do!

I have been in a random state of flux for the last few weeks. For example, incredible joy at the good run we had with beating the tonic-clonic monster into submission and then flowing towards the depression of the harsh realization/reminder that Dravet is never going away. You really would think I would be used to this by now.

Even my attempt at humor with the OCD organization of my purse fell flat. I just can't seem to be witty lately.

The funk can't really be pinned onto a single event. It is just there. Bleh.

My drifting has led to sudden spurts of creativity, but nothing seems finished. I have a few posts in my blog attic (drafts) that are no where near publishing and that birthday present I was going to make for my sister just didn't even have the legs to get off of the ground.

However, it has also led to random bouts of cleaning out closets and cupboards, which is awesome, but at the most inopportune times. Like deciding to organize the pantry and my spice cupboard right before a birthday party. Who does that? No one is going to look inside and see if my jar of oregano is expired! I have thrown away bags and bags of broken toys, expired canned food and stained clothing. I can't really say that I am nesting, or spring cleaning. It just happens. My sanity is clearly questionable. Good thing I hang around a dog and a toddler :)

Speaking of birthday parties...Someday, maybe I will be cool enough to try and keep up with my friend, E. Right now, it is futile. Check out her daughter's mermaid party! I used to be the queen of theme parties, hosting and inviting over different friends and having a blast doing it. I admit, I am jealous of her creativity. That spark of mine is gone in this haze of cotton-filled numbness. Replaced with survival tactics.

Even the thought of undertaking a party is exhausting right now, especially when Cole could care less about them. SO-the party to celebrate Cole's four years on earth was extremely simple. The weekend before, we invited two families in the area who were in our class at 4 Paws For Ability and have siblings of Slugger's. We had a great time, even if it was nothing to photograph or blog/brag about. I will say this though, three golden retrievers in my living room, in a wrestling match, is quite a sight. We should have charged admission!

Any event has changed with our new perspective. Holidays are celebrated in minimal ways and there is way less pomp and circumstance than I am used to. On Cole's birthday I took the popcorn machine to his class and was the "cool mom" for five minutes while a group of eager pre-schoolers watched the miracle that is popping corn. That's it. Brian was out of town. Cole can't have cake. He did not even get the concept that the day was (supposed to be) about him. It can sometimes be depressing to the woman who thought she was going to have the coolest birthday parties ever for her kids. That Pintrest file, just sits there full of ideas that I am never really going to put to use in the near future.

However, someday I am going to have the fun parties again. Someday I will have the creative spark to write things that move other parents and make them smile. Someday I am going to deep clean my house on a schedule and not just when I feel like it is getting to the point of contamination possibilities. I still do the necessary stuff every Saturday, but things like washing walls-let's be honest, it just doesn't happen around here. Someday we will have friends. Maybe someday we can go on dinner dates and will read books that have nothing to do with genetics. We just keep telling ourselves that it won't be like this forever.

The other day, I had a "DONE DAY". You know, the one's where you are just done. Done with dealing with the nursing issues, done with insurance, done with trying to make ends meet and coming up far short even after trying to tighten every realm, and on and on. I was done with trying to figure out our next move with medication. Done with trying to be a detective and figure out if Cole was sick or just reaching his seizure threshold. I was done with money-we went without presents for Christmas, birthdays and our anniversary to help pay for Slugger. I was done with fighting for therapies. I have kept being turned down time and time again for Aquatic Physical Therapy, and when I finally got him a spot recently-I realized that I don't have the money to pay for it, even after all of the trying to make things minimal. I think that every mom has days where she is just "done". Whether they have a special needs child or not. Anyone can be "over" something or "done" with it.

I am done with a lot of stuff, but I am not done being a mom. I am not done fighting, I just want to take a hiatus. I'll snap back, just like I always do. I really don't have much choice there :) Am I the only one that has ever wished to vacate their life for just a few days? Probably not. A big portion is my attitude. Nothing is going to be simple, ever. I can not change that. I can change the way I think about it though and have some great examples to look to. I am not done being the primary caregiver for my child. I am lucky that I get to keep him at home. Some people do not have that option. I am not done with a lot of things. I can look at Cole and find strength when I did not think I had any left. He had an hour non-convulsive status seizure on Friday and stayed post-ictal for over 3 hours, continuing to have myoclonics and dropping O2 sats. Really, I had planned on taking an easy day since Brian had been out of town all week and I had been up all night for multiple nights, listening for any signs of seizure. Cole had to do his thing and make it interesting, thus ruining my plans for a relaxed couple of hours while he was at school. He is worth it though. I made it, and he made it too. Apparently, he is not done letting me know that he is the one who rules my life...and that is okay, because I am certain that I will never be "done" with him.

Wednesday, January 18, 2012

It's In The Bag.

All of those Instagram posts last week of the stuff inside people's bags made me think....I should record for all posterity the incredible amount of stuff *most of it unusual* that I carry around every day. Do you remember that baby shower game where whoever has the weirdest thing in their purse wins a prize? That would be me.

So, I bag, and it's glorious contents.I labeled things to make it easier. Not all of this stuff can be found at your local Wal-Mart.

1. This bag contains an entire change of clothes. Including socks, pants, shirt and underwear. Needed at all times in case Cole loses bladder or bowel control when he has a seizure...or just gets messy like a normal 3 year old. There is also another clean Ziploc in there to put soiled clothes in.
2. Kleenex-That's normal.
3. Versed-Both Intranasal (including nasal atomizers) and Buccal.
4. Pulse oximeter, alcohol wipes and Bob the Builder stickers...very important, those stickers.
5. Diastat-in two different doses
6. Dog treats
7. Flat collar in case we have to track unexpectedly or Slugger's breaks.
8. Prescription FL-41 lenses for light sensitivity. Cole always needs to wear these outside.
9. Syringes-large and small, lubricating jelly, medicine cups
10. g-tube extension
11. Diazepam tablets, pill crusher..all goes in the bag with the syringes and extension.
12. water to mix meds and flush g-tube, also can be used for Slugger
13. This is MY bag-includes things like feminine necessities, lip gloss, my personal pharmacy, hand sanitizer, chapstick, that kind of stuff.
14. Wallet-also includes a copy of Cole's emergency plan
15. Headphones
16. Normal kid stuff like snacks and toys (Mater and a plastic bug)
17. Wipes-flushable and regular
18. "Juice" aka Fruit 2O
The stuff that wouldn't fit in the first picture includes: Gentle Leader, iPad to record seizures and provide therapy, phone (to do the same thing as iPad...and let me play Words With Friends), collapsible water bowl for Slugger, doggie bagsand it all fits! This particular bag is smaller than my last one. Plus, I used to have diapers and a changing pad in there! No wonder my shoulders hurt. I can not be caught without any of these things. They are the essentials. Believe me, I have wondered myself why I carry so much stuff everywhere (and this doesn't even include the oxygen tank!) but I need all of it...all of the time. I've been caught once or twice without something and I have really regretted it. SO, every morning I usually go through the bag and restock it.

They say that you can tell a lot about a woman by the contents of her purse. What do you think the stuff in my bag says about me?

Friday, January 13, 2012

Back to Life, Back to Reality

The Soundtrack for Life started playing the opening of this song as I was stuck in traffic, trying to get to my little boy. You really want to take up residence in my head, don't you? :)

Regardless of having random songs from 1989 being piped into the corners of my mind, yesterday ended a wild streak unlike anything else we have experienced.

My mother-in-law is in town and the weather was perfect yesterday. 60 degrees, in January, and no wind. Cole has been doing extremely well and had made it 5 whole weeks without needing rescue meds to stop a seizure. Let me clarify this...we still have given him meds. With all of the traveling we did in the month of December, we pre-medicated him before flying and going to Disneyland. There was about 5 times that we gave him a small dose of diazepam through his g-tube while we were gone, so he was not totally "rescue med free". Also, he has been far from seizure free. He's even had partial complex and myoclonic clusters that possibly could have used medication, but thankfully resolved on their own. The absence and myoclonics have still stuck around through this good streak, but hey...we will take them over a tonic-clonic (grand mal) any day! SO-Cole has not been seizure free, nor med free. Just that he has not needed medication to stop a seizure and has not had a tonic-clonic (the worst kind of seizure *for Cole) for a long time. Do you feel enlightened? :)

Back to the mother-in-law story....
Cole broke his med streak on Wednesday. His nurse decided that he needed a small dose of diazepam to break a cluster of myoclonics while they were at school. Still, we were thrilled! He had not gone 5 weeks (to the day, actually) since 2009. A huge feat for us. Although we were kind of sad that this magic that Slugger brought seems to be wearing off (as we knew it would), Cole seemed his totally normal self on Thursday morning and we sent him to school as usual. SO, having company in town is very rare and we try to be good hosts (emphasis on try, doesn't always work out that way). I asked our guest if she wanted to go to Mount Vernon, since the weather was good and Cole was in school. In a very strange twist, my husband was working in an office close to home and was able to go and pick up the boy I nanny after school. *Weird, calling myself a nanny...then again, baby-sitter makes me sound like I am 14. So, my ducks were in a row. I don't have to remind you that I never really go anywhere, especially if it is during school when something could happen. However, Cole was doing awesome, Brian was nearby and we had company.Mount Vernon was lovely as usual and there were hardly any people there. I learn something new every time I go and always leave with a deep appreciation for George Washington and the men who helped to found our country. Just as we were deciding whether to go home or extend our stay to include a meal at the Mount Vernon Inn, I got a phone call from Cole's nurse. She let me know that Cole was having a seizure, she gave him medication and that his oxygen sats were good. I told her that Brian was actually already on his way to the school and would be there soon. Our decision was made, we hopped in the car and headed for home.

I called Bri and alerted him to the situation. He has actually never been inside of Cole's school, so I walked him through everything until he got to the classroom. Then I didn't hear from anyone for a long time.

This is the part where my little brain goes into overtime and thinks in its far recesses, "Could this be THE ONE?" The one that finally takes him from us. It is a question that is always there, hanging out in the back like an awkward teenager at their first dance. It has actually moved forward a little in the past few weeks. It is always a sad day when one of our little group loses a child. However, recently a 14 year old boy from England died unexpectedly on New Years day. It rocked our small Dravet family, because this young man was actually doing EXTREMELY well. He was on Stiripentol, practically seizure free and learning new skills all of the time. All of this was rushing through my mind as I was trying to fight traffic, listen to the GPS and look at the pink line, telling me where to go, on the screen that had an awful glare. Finally, I just called Brian, thinking that he had forgotten to call and update me because he was busy meeting the teacher, comforting Cole, etc. He answered and informed me that Cole was still seizing after 4 different doses of medication and that he had called 911. Great. As I am crawling through practical gridlock, I switch our destination to the hospital. All the while, I have the beginnings of a migraine and have not really eaten. So, I am digging through my purse for food, talking on the phone, driving, worrying and all the while trying to play it cool. I'm really glad that I did not get in a wreck!

It threw the entire school off of schedule when the ambulance came. It parked in the front of the school and the buses could not get out. So, the principal had to send out an e-mail and a voicemail to all of the parents that the buses were delayed by a medical emergency. Yep, that's us...the people that made all of your kids late! :)

In the next two hours, there are multiple phone calls trying to figure out how to get the boy I watch taken care of. They would not let him ride in the ambulance to the hospital (which he probably would have thought was really cool), so he was stuck at the school. There are a lot of rules regarding letting people pick up children at school here. Nothing like the standards of my youth. Anyone could show up, say "I'm here to pick you up" and off we went! Not so much in this modern day. There are lists of approved people, you have to be buzzed in, etc. SO-I then switched our destination back towards home. All of this was taking me on different routes and I was getting stuck in the lovely traffic here that could make even the most patient person begin to lose their mind. In the end, we figured everything out and I ended up at the hospital after we stopped by the house to pick up Elmo and The B.

Cole stopped seizing in the ambulance, the entire thing lasted over 35 minutes. When I finally got to the hospital, I heard the whole story. Cole was out on the playground (remember perfect weather?) and was on the slide. Slugger ran up to him as soon as he came down the slide and was nudging and licking him consistently! Hooray! The nurse was aware that something was different and Slugger was alerting. Cole's speech slowed, his eyes glazed but he was still walking and talking. Nonetheless, with Slugger's warning the nurse picked him up and took him in to the school where she gave him a small dose of meds. He was still coherent, but eventually started having convulsions and then things went down hill from there.
My three boys

So, hooray for Slugger! Much easier to take care of things inside and we were beginning to wonder about his capability to alert. Now we just need to keep working on barking.

Our hospital was great again and just let us do whatever we wanted, including no IV. Everyone loved Slugger as usual. Cole went through the normal routine. Waking up, screaming bloody murder for a half hour or so, falling asleep and then sitting up and saying, "I'm back!"He also puked all over me right before he left. Always a treat.

We are just glad that he is okay and will start our countdown again. This last stretch has made us think that there could actually be a day or two that could be considered "seizure free" in the future. I just hate that Dravet has to remind us that it is never going away. The beast reared its ugly head again, but hopefully we can scare it back into hiding.

Monday, January 9, 2012

How To Take Your Service Dog To Disney

Taking Slugger with us to Disney proved to be a challenge but a real blessing. We are so grateful that he came to us at this time to help us have a magical Christmas. Here are some tips if you are thinking about taking your service dog to Disney.*Here is a list of the rides that your service dog can go on, surprisingly they can ride almost all of the attractions. Also included on the list, are areas that are designated for potty breaks (they even have signs). However, you can use any grass area (all are fenced off), you just have to find the gate to open. I printed off this list and it helped me when I could not find the signs. There were a couple of times that we had to be creative, but most of the time we were able to find a place for Slugger.
On King Triton's Carousel

*The "cast members" will know how to accommodate your dog. They have to ride laying down at your feet for most rides. If you are planning on going on a ride that is on the list, which your dog can not go on, you will need to have someone with you that is able to hold your dog while you are on the ride. The Disney staff can not watch your dog for you. We did this on Soarin' Over California, which Cole really loved and went on 3 times.*Know that you are going to get a lot of attention directed towards you with your dog. Slugger is going to show up in a lot of peoples pictures. It was like the paparazzi when they recognized that he was actually riding the rides. People will ask to pet your dog, some won't even ask. It REALLY helped us to have this vest. We have "Seizure Alert Service Dog" and "Working Dog Do Not Pet" patches on both sides. Many parents would see them and tell their children that the dog was working so they could not touch it. Also, it saved a lot of questions of "Why do you have a dog in Disneyland?" This vest is lightweight and it was easy for Slugger to wear all day long. You are still going to have the random comments and the assumption that your child is blind. That happens in a regular public situation anyway. You can print out cards to hand out to people that have more detailed questions, explaining about service dogs and your child's condition. It helps to not get stuck in a 20 minute conversation when you are trying to focus on your child.

*For the record, Slugger's favorite ride was It's A Small World. He was really interested in all of the little people :) He struggled with what to do on the first few rides and I actually had to lift him in to the first one, but by the end he was working like a pro. He immediately knew what to do. Hop in, lay down, stay still. I was so proud of him-especially one night when it was shoulder to shoulder on Main street trying to get out of the park and I was certain that he was going to get trampled because he was so low to the ground and it was dark. He weaved in and out like a champ and I kept praising him the entire time! I am so glad that we practiced in crowded public places before we left.

*Disney has a kennel where you can leave your dog if you feel like they are slowing you down, or they are getting tired. You just need to bring their shot records. It costs to leave them there, but if you are going for more than a couple of days it might be nice to give them a break. I know that Slugger was exhausted by the end of the day. He had probably never walked that much in his life, even with all of our breaks.*You WILL find that parents will come up to you and want to know how they can get a service dog for their child. We gave out 4 Paws for Ability information 5 separate times to parents who had desperate looks in their eyes and a glimmer of hope that maybe someday their child could come to Disneyland with their dog. It was very satisfying to have those kinds of conversations and spread awareness. We never even dreamed it was possible for us before Slugger. We were grateful to be proving ourselves wrong. There were times when I could tell that Cole was getting overstimulated and he would just crawl under the table and lay on Slugger. It made me so grateful that we brought him with us the entire time.

*You will get random people who bring their kids up to play with your dog, or others who make snide remarks. Just remember that you are always an ambassador for other people who have service animals. I think that my favorite comment was, "I think that is the saddest thing I have ever seen! I feel so bad for that dog!" Uh, did you notice that he is at Disneyland? Plus, this dog LOVES his job. His life is not one of sadness! It made me chuckle. We actually saw another dog there who was barking and jumping up on their owner, while they were frantically trying to keep it quiet and tell it to get down. Slugger behaved like a professional the entire time.

*Make sure that you have bottled water, enough treats and everything else you need when your dog is in public. We also carried a serving of food in our backpack since we did not know when we were going to be leaving the park. We just fed him when we started eating and then he rested while we were having our meal.

We are really glad that Slugger was able to come with us and think that with his help, we might even try something like this again!

*I wrote about how to take your special needs child to Disney, here,

How To Take Your Special Needs Child to Disney

I participate in a tradition that is almost 30 years old. It involves members of my extended family meeting at the most magical place, every 4 years, at Christmas. It started when I was a wee babe and I did not make the first trip. However, I have only missed it once since then when I was 8 1/2 months pregnant. I look forward to this, just like all of my uncles, aunts, cousins, etc. However, for the last few years I was certain that we were going to miss this trip too. How was I going to take my special needs child to the nightmare of all overstimulation, across the country, outside, during the busiest time of the year? It just didn't seem possible.

It was about July that I started to consider taking Cole. I would not even think about getting airline tickets until October, wanting to even get refundable ones. Our life is so unpredictable, flying across the country was such a risk. Let alone going to an amusement park with a kid who is sensitive to light, noise and temperature. One who gets overstimulated very easily and has new triggers for seizures that just pop up out of the blue. Yet, we went and we survived! I'll even go so far to say that we had an amazing time. But it was not without a lot of work and preparation on my part. I'll share my secrets :)*If your child uses oxygen, be certain that you have an FAA approved oxygen concentrator for your flight. You can also work with your DME company to arrange for tanks once you arrive at your destination, since the concentrators are pricey.

*Have your doctor write a letter explaining the child's diagnosis and if they are on special medications, diet, etc. Always take your emergency protocol in case you have to go to a hospital where the staff is not familiar with your child. You CAN take medications and medical liquids through TSA and on the plane. You just have to have the prescription and a letter. Believe me, don't pack all of your meds in your bags. A good friend of ours had their luggage lost and then their child had to miss a dose while they were scrambling to try and get a new prescription. The only drawback is that it takes more time waiting in the screening line because they have to screen each bottle. Totally worth it though to know that you have all of the right medications. We even take Fruit2O with us, for Cole's diet. Make sure that you go to the airport at least 2 hours early (even with the medical liquids line)! You have to undress your service dog (varies by airport) and screen all of your meds, the stroller, etc. We filled up the entire conveyer belt :) Plus, rushing is never good for kids with special needs.

*Before you go, get refills on all of your medications. If your child has rescue meds, stock up. You can usually get a new prescription every 48 hours for rescue meds. It was a lot of back and forth to the pharmacy for a couple of months, but it was worth it. I think that we could have put out an entire football team at any one time with all of the medication we had on our person. It made me feel much better to know that we were prepared and would not have to wait for paramedics. Also have up to date paper prescriptions to take with you in case something gets lost and you need a refill. Doctors are not always available at night and on the weekends to call something in for you.

*Spend time on the Disney (or other park) website. They will have information there, you just have to look for it. Here is a page that has an overview and links to answer a lot of your questions.
-Use the website to help you map out what rides are in what section of the park.
- If your child is wheelchair bound, here is a list of attractions that they can stay in their chair for. Also ones that they would need to transfer for, but has adaptations. We used some of these "transfer access vehicles" and it made things go a lot smoother.

*Look up specific rides for toddlers or in your child's age group. I found this website to be helpful. There are others out there. If your child is in to trains, map out where all of the trains are. If they like rocket ships, know where the age appropriate rides are in Tomorrowland. If they love princesses, find out where they are most likely to be seen. I made a detailed list, breaking it up into "lands" and wrote down all of the rides that I thought Cole would enjoy in that section of the park. I prioritized them, thinking about which ones he would really enjoy, in case we did not get to spend much time there. I wanted him to have as much fun as possible, so I made sure that I had a "Top Ten" list ready in case we were not able to stay. With Cole, we had no idea if we were even going to make it for an hour. I wanted to be sure that we at least did something that he would want to do in that hour. (Lucky for us, he made it the entire two days, but my list sure helped me to know what he would like in each section). We only went on two "adult" rides that Cole could not go on the entire trip. Everything else was geared towards him. Make sure that you measure your child and know how tall they are. Cole was tall enough to ride almost everything, that didn't mean that I took him on roller coasters or rides with flashing lights though :)

*After you have made your list and you know which rides your child might like, go to YouTube. Or just google the ride name + video. There are so many people out there that have just videoed the entire ride and uploaded it. If your child is overstimulated easily, or has a hard time breaking out of routine, watch the videos of the rides over and over. I did this for two months. It actually gave me a better idea of what Cole would like. This way, it was not "brand new" and he was not so overstimulated. He already had some idea of what was going to happen and he could focus more.

*TALK about it. Over and over and over. If your child has special needs, they most likely do not appreciate surprises. The more you talk about it, the more they are comfortable with the idea.

*The first thing to do when you get to the park is to go to City Hall. It is just inside the gates, to the left. You will need to stand in line and get a disability access card. You can get up to 6 people in your group to be covered by the card. This allows you to get in through the disabled line, which most rides have. You can pick up a pamphlet at City Hall that tells you if there is a separate line for a ride. It will also tell you if you just need to enter through the standard queue. Another thing you can get on this pass is a "Stroller=Wheelchair" stamp. If your child is little, or has an adaptive stroller in place of a wheelchair, this stamp allows you to take the stroller all of the way up to the ride. Otherwise, you have to park it and carry your child to the ride. This stamp saved us from Cole having to walk. The more he walks, the more tired he gets, the more his seizure threshold comes down, etc. It also let us keep the oxygen in the stroller instead of having to lug it to every ride. You can use a doctors letter to get this pass and stamp, but once they saw our service dog, no one asked me for a letter. This pass saved us a lot of time waiting in line, which was really nice because Cole really struggles with patience and standing still. He got overstimulated just waiting in the shorter lines. I know that he would not have lasted as long if we had to wait in the standard queue the entire time.

*Use the Baby Care Center. They are located here in Disneyland. They have them at Disneyworld too. It is a quiet place that you can change your child, or it even has a very small toilet for those that are potty training. It has an area where you can feed your child, away from the crowds. Great hidden gem! Cole is almost 4 and it was perfect for him to take a little break from the commotion here.

*When you are at the park, take the time to rest and take breaks in between things. This is an opportunity to sample the incredible food offered there, or just let your child wind down. Cole really liked the arcade in Tomorrowland (although I was certain it was going to cause a seizure) and would just sit and "play" the games even though we didn't pay for any of them :) The Disneyland Railroad, the Monorail or the Main Street vehicles are good ways to just take a break from walking. *Make reservations for meals. I made one for every meal. You can call and cancel with a courtesy call. Out of our 6 reservations, we only went to 2, but I knew that there was a table waiting for us and I had looked at the menus on the Disney website to see what Cole could eat there. He does not do well with "fast food" or preservatives and can not have sugar or gluten. Look at the menus and see where they offer foods to fit your child's diet. I know that there are even ketogenic families that have found options at Disney! We got fresh fruit and organic apple chips for snacks. Get reserved dining for World of Color if you are going to California Adventure. The show is a half hour long, and most people have to stand. If you get into the reserved section, they have a bench for people with disabilities. I know that Cole would not have been able to stand in a crowd for a half hour. You can also get into this section by getting fast passes. You will need to go super early though as those two benches seem to fill fast. The dining options secure you a spot on the bench.

*Really consider dining with characters. We didn't buy a single souvenir the entire trip, but a Mickey Mouse balloon. We decided that we wanted to do something that Cole might actually remember, especially since we did not know how long he would last at the park. Call Disney Dining and make reservations. Once again, the standing in line thing. You still have to wait a little, but nothing compared to others who don't have a reservation. I am so glad that we spent the extra to go to Goofy's Kitchen. When you ask Cole about the trip, THIS is what he remembers. He got one on one time with characters (which I wasn't even sure he would like) and Minnie brought him a sugar free cupcake with a candle while the staff sang Happy Birthday. He tells everyone about the candle :) I had so many "pinch me" moments, but that was a huge one that brought tears to my eyes.*Take lots of pictures. We took over 400. I just kept on handing the camera to different people in our group, wanting to get others perspectives on it. We just never know if this is going to be the only time that this can happen for Cole. It did give us confidence though that we could possibly do something like this again. If you are going on a Make A Wish Trip, the people at Give Kids The World Village will help you have an incredible time. But, if you are trying to tackle the park on your own, these are a few things that helped me. Preparation and seeing that magic smile on my little boys face.Disclaimer: This was only based on our one time experience. We didn't even know if Cole was going to be able to enjoy "the Magic". It turned out great though! Now, I have to be honest and say that I was holding my breath, waiting for the other shoe to drop the entire time we were there. I lost more than a little bit of sleep worrying about this trip. I was more than prepared to high-tail it back to the hotel or to call 911. Going anywhere with a medically fragile child is a challenge. Our lives are not simple anymore. Taking even a "normal" child on an adventure like this can be frustrating and a challenge. My advice to you-Just do your leg work and then prepare to be flexible; but enjoy every moment. Make it about your child. What do they want? What would they like? Doing this made our trip even that more magical because it was all about Cole.

*I wrote about how to take your service dog to Disney, here.
Photos by Capture Me Candid