adogfordaniel

Welcome Fall!

2011-09-23T13:34:00.000-05:00

Hi Everyone,

I would like to say that this year has been full of amazing things. Daniel's Make A Wish trip to Vermont, Dove alerting Daniel's seizures an hour in advance, Daniel growing so fast! My daughter Alena is now a junior in High School! Daniel is still having some tough days,but we do the best we can to make the good days really fun and enjoyable for him. Tonight he has his first baseball game of the season. He plays with the Miracle League of Pensacola! He just loves to go out there and hit that ball! It is such a fun time for all.
He started school this year at Escambia Westgate. So far so good on his new location. We are hoping he will continue to grow and keep learning new things each day. My hope is that he will be able to retain more and that his social skills will continue to improve.
Daniel's seizures still come every day, but we continue to plug along. He has an appointment with his Dr. in Miami in a few weeks. We will see if there are any medication changes that he wants to try.
I am very excited about the 50 iPads for 50 children campaign! The announcement of the recipients will be next weekend on Apps for Children With Special Needs(A4cwsn on Facebook). Please check it out! Here is a link to the campaign: http://a4cwsn.com/ipads-in-50-states/ Gary James is going to hand deliver 50 iPads to 50 children all across the US. Please check it out! I hope this is a great success, and I believe that the iPads will change a lot of childrens lives!
I have just planted my Fall garden and hope it grows well. I put in beets, carrots, cabbage, radish, and lettuce and plan to add some broccoli and cauliflower too. I am very excited at the prospect of more fresh vegetables this winter. I hope everyone has a wonderful Fall and holiday season!
Kim

UP IN THE SKY!

2011-07-25T09:35:00.000-05:00

A few weeks ago Daniel was blessed to get an airplane ride! He and his dad went out to Pensacola Aviation and met Skip the pilot who would be taking them up. They asked if I wanted to go, but I felt it better to stay on the ground! Especially after seeing the size of the airplane, no way!! It was a tiny Cessna single prop plane. Daniel was very excited, and checked out the whole plane! He's a good pilot! Dove and I stood by and watched them take off. It was very exciting for them. Dad video taped parts of the flight showing Daniel holding the controls, headphones on, looking cool. Skip is a great pilot. He took them over Pensacola Beach and swung around back to the airport. I think Daniel was so happy he couldn't even talk much during the flight. He was busy taking it all in. He even got to turn the plane(with a little help from Skip) to the right nice and gentle. He was so proud of himself. When they got back to the ground he came and found me. He told me all about the trip. He really likes to go up high!
A special thanks goes out to Bruce at Pensacola Aviation and Skip for this terrific adventure and opportunity. We will never forget this day. This was an opportunity that may never come again and I am so glad Daniel was able to go that day. He was very happy and that makes me happy to see! Click on the link below to see part of his flight!
http://youtu.be/kdiBqPViOFk , this one is after the ride! give it a moment he gets talking after the first little bit. http://youtu.be/U5IkjueMQfI

Now, once again I need to tell you about a cool website. If you have children with special needs, and have an Ipad OR would like to get an Ipad for your child, you need to visit this site Apps For Children With Special Needs. Gary James is doing an incredible job on this site. You can watch hundreds of videos of apps that can be purchased for your iphone, ipads,etc..Also he is just a regular dad(with 6 kids!) and I believe that two are autistic. He just wants parents, caregivers, therapists to be able to view the app and see how it works so you can make an educated choice on what to buy. Sometimes you buy something and it doesn't really fit your child's abilities. There is also a campaign going on right now to get 50 Ipads, into the hands of 50 special needs kids, in 50 states! He just delivered some in Canada this weekend to 4 kids. He is a very nice guy, has a wonderful family. He is trying to make a difference in children's lives by getting the technology that is available to them! You can also go to his Facebook page A4CWSN and "like" it. There is a large community of parents, caregivers, therapists, and app developers here that are a wealth of information. You should really check it out. I have been helped in many ways. I have to give a shout out to a special developer called ThumbArcade! They are developers of an app called "My Underwear". It is so much fun to play. This was one of the first apps I got for Daniel to try and he loves it! You can create your own underwear, play matching games, and other fun stuff! They were so generous to give out some prizes a few weeks ago to the winners of the World Underwear Day! Daniel's underwear creation was submitted and he actually got randomly selected as the first place winner. Needless to say we were shocked and surprised. Then Gary at A4CWSN had come into the competition and added an Ipod to go the winner. Check out this story and see what happens to the Ipod in this Touching Story
Anyway, long story but I hope you will go to the A4CWSN site and check it out.

Daniel has made it to summer school today, so I am busily typing away! I hope to take Alena to find shoes to go with her formal dress for the cruise she and I are going on soon. She has the opportunity to audition for several modeling venues. There will be a boat full of hopeful models and I'm sure she will do well. She has been practicing her walk, her commercial, facial expressions, poses. So many things to do. Luckily I get to go with her so please pray for us to have a safe trip in August. I am excited for her and nervous about leaving Daniel. I know Erick will take good care of him, but I still worry something might happen while we are gone and I won't be able to get back quickly enough. Always something to worry about you know.

I hope you all have a great week. This is Daniel's last week of summer school so I am glad of that.

Blessings to you all,
Kim

Summer 2011

2011-07-16T23:22:00.000-05:00

Hi everyone,
We are half way through the summer and it feels like it is going by so quickly. Daniel and Dove started Summer school and they are both liking it. They are going to a new school this Fall and this gives them an opportunity to get acquainted with some of the teachers and students now. They are going to Escambia Westgate School. It is going to be a bit different, but I think he will do well. Dove seems to fit right in and is making herself right at home. Daniel has missed a few days already due to seizures that are happening so late in the morning that he is unable to get to school. I am hoping that this trend will pass. He is still having about 2-3 tonic/clonics(gran mals) a week, with myoclonic clusters on other nights. He also has started having partial seizures again during the day. Not very often, but still seems weird to see them again after not having them for a few years. Things are always changing. On a brighter note however, his seizures are not lasting as long as they used to. He FINALLY got Oxygen approved for use at night, and when he has a seizure we put it right on. It immediately started making a difference the first time. We have noticed that his seizures go from 3 minutes to around 8min. now, instead of 8-15 min. I know that still sounds bad, but actually it's quite an improvement!
He is also being fitted for a Bi-pap machine. We are just waiting for the doctor to see his results and find out if he will need to try using it soon. His original sleep study found 5-6 Apnea episodes and 69 Hypopnea episodes during one night. No wonder he's tired all the time! Poor thing. I hope he will wear it and will keep you updated on that!

Dove is still really good at alerting. She is alerting about 45 min. to an hour before his seizures at night. We just have to make sure we are paying attention. She is still very attentive to him when he is seizing, and will lay with him afterwards.

I would like to switch gears and talk about the Ipad! Daniel was blessed to receive an Ipad from an organization in Miami. When it came I started looking for apps to put on it. This was my first time with one, so I had no idea where to start. I posted on FB to other parents for suggestions and got several. One suggestion in particular was very helpful! there is a website called Apps For Children With Special Needs(A4CWSN on FB). This is a great site. Gary James is the founder and he had hundreds of videos of apps for children with special needs. You can watch him go step by step on an app and see if it will be right for your child. I love it. He was so helpful in getting me started in the right places! There are some very cool apps out there! Fun and educational together! Check out his site! There is an campaign going on right now to raise money to put 50 Ipads in the hands of 50 children, one in each state in the US. The link ishttp://a4cwsn.com/ipads-in-50-states/ . I hope you will check it out and help out. Daniel has made some great improvements in the self care area with some really fun apps! He loves it. I hope to keep adding more as time goes on. The other great thing about the FB page for A4CWSN is that there are great deals and programs and giveaways all the time! I would highly recommend becoming a friend of A4CWSN and participating in the site. You will get a lot of ideas from the developers, parents, teachers, etc. It is a great place to connect with people who have children with special needs. It is a wonderful community that is doing a lot of good!
Thanks for stopping by and I hope to keep you updated on Daniel and Dove, and Daniel's progress with the new changes.
Take care,
Kim

Daniel's Make A Wish trip to Smuggler's Notch Vermont, March 2011

2011-03-03T13:31:00.000-06:00

Hi everyone,
It's been a while since I've been on. Today is actually the 4th day of Daniel's MAW trip! He has been having so much fun and doing things we didn't think were possible! The resort here is so lovely and the people and staff are so friendly! They have made Daniel and our whole family feel very special and they have ensured that we all have a good time, but especially Daniel. He has been working with Shawna and Sean this week on his ski's. They are with the adaptive ski program here. Alisa has also been overseeing his activities and has helped Erick and I achieve success on the slopes! Sean and Shawna have a piece of equiptment called a "slider" that they use to help the person stand up and ski down the mountain. They had Daniel on this at first and then he got to ski on his own with just the instructors tethered to his skis. It is pretty amazing! Please watch the videos of Daniel coming down the slopes! He is standing so tall and straight! What good form he has. When he was too tired though, they put the slider back in front of him and then he was able to keep going!
I have to say that going down the mountain was quite a thrill for me too. I am terribly afraid of heights and going off the sides, but the way Alisa took us, I did really good. She is a great teacher! The scenery is georgeous and the fresh snow was terrific. Erick even took the lift and came down the other section of slopes. I believe he got "sprayed" today though! Which I wish I had been there to see. that's what happens when you fall down and another skier comes in behind you and stops and sprays you with a bunch of snow! Thanks Sean!
This trip has truly been a blessing. We met the owner of the resort today. He came to meet Daniel and the family and to wish us well. This resort is really nice and we can't get over how nice everyone here is. I will definitely recommend this place to others! I think the adaptive program here is fantastic and they really work well with the children and disable persons. I think that skiing is great for Daniel's balance and strenthening of his legs and upper body. I hope he may have an opportunity to do this again one day. I would recommend it to people who live in colder climates to try the adaptive programs in their areas for their children. I think it could be very beneficial to them and lots of fun!
I'll post more photos and video later on, but for now I've got two videos to put on here now.

Dove is going to school!

2010-11-09T21:49:00.000-06:00

Hi everyone!
I know it has been a while since I have checked in. It has been about 6 weeks since we have been home from our initial training at 4 Paws For Ability with Dove. She has become a very important part of our family. We continue to practice basic commands with her each day and she is doing well. At first Dove and Daniel were not seeming to bond very well. The last two weeks however that seems to have changed! Daniel plays with her a lot and she looks to him to play ball and chase and loves to lick him in the morning. Daniel is not so crazy about the licking first thing in the morning, but who would be? We work with Daniel and have lots of time to pet and love on Dove together with him so she will connect more to him each day.

She has alerted to Daniel's seizures on a few occasions, but is a sound sleeper at night.So far she has alerted to his seizure anywhere from 10-30 minutes prior. Most of Daniel's seizures are at night so this will be the hardest part to do it every time! We are trying to condition her to keep her "nose" on alert when she is sleeping! Hopefully this will help. Even so, when Daniel has a big seizure she has begun to be right there beside him on the bed. She recognizes the sounds that he makes and she acts so concerned for him. The last couple of tonic/clonic seizures she has licked his feet, hands, ears and right smack on the mouth! She does this very vigorously and enthusiastically. This is great because it means the bond is forming between them and she is really caring for him! It sort of grosses me out with the mouth licking, but I know it is a good thing in the end. She stays with him till it's over and lays beside him. It really is very sweet.

We have started training Dove to bark on command so we can incorporate that into the seizure alert and/or response. She has a really deep, loud bark and I think I would hear that better than just the whimpering and whining she usually does. She does not like to bark. It has taken several days to get her to do this on command, but I think she is getting the idea. The trainer at 4 Paws has given us several things to work on to help with her alerting at night and her barking.

So now this Friday Dove will ride to school with Daniel on the bus and stay for at least half a day. I will be taking her home early to give her a few days to get used to the new routines. I anticipate to go to school with them for about two weeks, or whenever the aides and teacher are comfortable with her there without me. She is so good, that her trial run on the bus Monday went very well. Everyone was so impressed with her behavior! Thank you to 4 Paws For Ability for training such a wonderful dog for Daniel! I will let you know how it goes after we have been to school a few days. I don't anticipate any problems, just working out the kinks of the day to day stuff.

Daniel is so glad to have his own dog. He really likes her new trick to bark! Thanks again to all who helped us get to this point!
We just found out last week that Make A Wish is granting Daniel a wish to see snow! He is so excited. It will probably be a while before we know any details about the trip, but I know it will be one to remember forever. Daniel and Alena have never seen real snow. Hard to believe with us living down here in sunny Florida! It should be quite an adventure for all of us, and especially Dove!

Well, we will be gearing up for school on Friday the 12th, and then getting ready for Thanksgiving. Hard to believe that Christmas is almost here. We will have the best Christmas! Dove is the best present we could have ever gotten.
Take care,
Kim

WEAR ABC 3 :: Top Stories - Family Welcomes New Seizure Alert Dog

2010-10-08T17:29:00.000-05:00

WEAR ABC 3 :: Top Stories - Family Welcomes New Seizure Alert Dog

Training Day 10

2010-09-23T21:23:00.000-05:00

Evening everyone! Today was filled with lots of information. Too much to tell you all about it. The one fun thing we learned to day was that Dove can play dead. We need to practice a good bit more but she seemed to follow Alena's command pretty well. We have instructions from the trainer on how to help facilitate Dove's response to Daniel's seizures. We hope she will truly alert one day very soon. We have had a couple of times of uncertainty, so we will keep trying to get her in the groove! We have finished our training today and will take our public access test tomorrow. We have learned so much in these 11 days and will continue to train after we get home. We want Dove and Daniel to be best buddies. They are asleep in their bed right now even. Wish us luck on our test tomorrow. We can't wait to get home Saturday!Check out this link to see some new photos!http://www.facebook.com/album.php?aid=2068129&id=1238835167&l=593433ff6d

Wishing all the other families the best tomorrow!

Kim

Day 9 training

2010-09-22T15:47:00.000-05:00

Hi everyone! Daniel had a good day today. We did a long tracking this morning, across a dry creekbed and over a field. Dove found him without any trouble! Go Dove! Then Daniel went with his friend Talon and Dove found him that time too. He was hiding behind a small building. We went back to 4 Paws to go over some basics and learn how to command "kisses". Let's just say that these dogs love peanut butter!
We broke for lunch and met again at the local mall for tracking practice in a store setting. It's more subdued, but try telling that to Dove. She had me squeezing through this small spot around a corner! I had to hold her back just to get through! We practiced some heeling with the stroller and took Daniel to ride on a couple of kiddie rides. Dove is sound asleep on the floor right now. Wish I was with her! I think I hear her snoring!
Just a one more day of training and then we take our public access test on Friday. Then we get to come home on Saturday! Yippee! I can't wait to get back to my own BIG bed. This double bed with me, Daniel and Dove is a bit crowded.
It is helping the two of them bond though. She snuggles up to him all night. She has on two occasions pawed at me during the night. This is her way of alerting for a seizure. I think once we get home, and everyone, including Dove, gets some rest, then more alerts will come. She is so tired too. We all need to get back on a regular schedule. She is such a good dog. We are very thankful to have her now.
I hope we are able to keep in touch with a lot of the people here. We have met some very nice families and it would be nice to see how their dogs have done after getting them home.
Bye for now, I hope you enjoy the pictures.
Kim

Talon and Daniel

Day 8 training

2010-09-21T20:47:00.001-05:00

Hi everyone!
Today was a long but very informative day! We practiced one tracking this morning and then I took Daniel and Erick back to the hotel so Daniel could rest today. Alena and I went back to the center to practice more obedience commands. We learned how to command over(where Dove lays over Daniel's legs), and lap(where she puts her head on him), and roll over, and then went over the basic commands again.
Then we got a talk from the Veterinarian on staff and learned about first aid and dog care. There a lot of things to watch out for! I had only recently learned that dogs can't eat grapes (not even a couple) or raisins. They can cause complete kidney failure! Just be careful what the kids leave laying around.
Dove did really well again. She is really bonding with the whole family. I am glad we are all here,and we are learning so much, but we will all be ready to get home on Saturday!

Last night we went to a place called Young's Jersey Dairy! It is not far from the hotel. They have a real corn field maze, a mini golf game, great restaurant, and wonderful homemade ice cream! We went with another family here and had a great time. We were all tired but needed a mini break! It is a neat place and I could hardly get Daniel off the big orange tractor!

http://www.youtube.com/watch?v=eDArn2rsiMs

More training tomorrow! I am sure it will be another full day.
Kim

Day 7 Training

2010-09-20T16:39:00.001-05:00

Day 7 training went really well. We learned some behavior modification techniques. Most were for the children with Autism, but I could see using a couple for Daniel at various times. We learned how to track Daniel in a department store or confined indoor area. Daniel was able to stay at the hotel for a good bit this morning after our morning tracking practice. He and Erick stayed in watching movies!
Here is a video of Alena doing the track with Dove: http://www.youtube.com/watch?v=xCVU2hs5Nds
This one is Dove tracking in the store! http://www.youtube.com/watch?v=-LJ08Ealr_8
There are a whole lot of geese around this place! Pretty nice when you don't see them at home much!

This afternoon we are going to try to go the the Young's Jersey Dairy. Supposed to be fun, food, and homemade ice cream! YUMMY! Looking forward to an evening of fun! I'll let you know how it goes! Dove likes riding in the car with Daniel.

Day 6 Training

2010-09-19T19:23:00.000-05:00

Day 6 of training was very good. Tracking again this morning and lots of talk back at the training facility about appropriate toys, baths, teeth health etc..

I am going to have to start running on a treadmill or something, cause I could barely keep up with her once she picked up Daniel's scent during our tracking practice! Boy is she fast!

Daniel spent more time with Dove today and gave her lots of treats so they can continue to bond. She is minding so well. We practiced a lot of commands back at the hotel this evening. Daniel and Alena got to play with some of the other kids here. Alena took a beautiful picture of the evening sky on the way to the hotel.

I didn't get a good video from today but I got some nice photos.

Day 5 training

2010-09-19T07:11:00.000-05:00

Day 5 of training was very good! Dove tracked Daniel really well this morning. Then we went back and practiced some more obedience stuff. Then we all took our dogs to the mall for practice in public! Dove did really well at the mall, so we took her to dinner at Olive Garden tonight. She did extremely well! No one hardly knew she was there! We had Erick's Aunt with us from KY and had a very nice visit! As we were leaving the table, a lady that was sitting at the next table caught my eye and said"thank you for doing that". I was so surprised, and not sure exactly what she meant but I know it was a good thing! The restaurant was very crowded and noisy but Dove was a perfect little dog. She went under the table and never got up. Hope this is a sign of good things for the future. Tomorrow I don't know what is in store, but I'll let you know then. Have a great weekend.
Kim

Day 4 of Training

2010-09-17T20:37:00.002-05:00

Wow, today was pretty cool. We practiced tracking with Dove to help her pick up on Daniels' scent. She was super. I will have some video of this up in a bit. We also practiced with her back at the hotel with 2 different routes and she found him with no problems. That is a terrific sign! Daniel has been very loving with her(most of the time) and giving her lots of treats to help her bond with him. He was having so many myclonic seizures today though he didn't really get to play with her as much this evening. I think he is just way overtired and over stimulated from the long days. We might have to keep him at the hotel to rest at some point so he can recoup some.
We have met several nice families and are trying so hard to remember everyone's names. It is not easy for me! Alena is doing really well handling Dove. She works really well with her. She has been such a big help for her Dad and me. We are really glad she came to learn also.
The weather is outstanding! I think we all needed jackets on this morning it was so chilly and breezy. Hard to believe.Click on the link below to view our first tracking with Dove!
http://www.youtube.com/watch?v=3ODRVJ1pV9g

We are all tired but in a good way. There is a lot to learn, but it is fun too.
On to more tracking and tethering tomorrow!
Kim

Training Day 3

2010-09-16T17:48:00.000-05:00

Third day at training for our service dog! Everything went well with the tracking practice this morning! She went wild when she found Daniel! Way to go Dove! More practice, and harnesses and heel practice. Daniel has his own leash now to hold while we hold the other one! He really likes that. Tomorrow is tethering practice and more tracking in the am.

Last night Dove went to sleep with Daniel. Alena and I just came in the room from doing laundry. A moment or two later, Dove cam out from Daniel's room and barked at us. I was sitting at the computer and she walked around me and under the table. We thought she just needed to go potty, but while Erick had her downstairs, Daniel had a tonic-clonic seizure. Dove got back to the room right after it started, so she did get to see the seizure before it ended and we praised her a whole bunch. We THINK she may have been trying to alert us (not needing to go out) . Now that we have possibly seen something of her behavior we will watch for that too. We had been told that she usually paws at the person or might sniff Daniel very aggressively. We will keep our eyes open and alert!

We ate lunch at a great little diner downtown called Linda's Restaurant! It looked like a locals place, and we really enjoyed it. Great service with a smile and great food! Will definitely go back.

All in all it has been a great start to a new part of our lives. We are excited about how Dove will be able to help Daniel and our family in the future. Stay tuned for more!

Kim

Training Day 2

2010-09-15T17:13:00.001-05:00

Today was a great day. A lot of information to absorb. We worked on sit and down commands again, adding in extra distractions to see how the dogs react to them. We learned the "heel" command and how to make turns and walk with Dove. She did really well today! We were so impressed of course with our dog! However, I must say that ALL the dogs did really great. It is amazing how well they all respond to all these new people telling them what to do.
All the dogs know a few tricks too. Dove can give a high five, shake and give five. They are pretty similar anyhow. We mainly change how we approach with our hand. Alena did some training today and was super! I was very proud of her for participating and learning so much!
CLICK HERE FOR VIDEO
This is the first night for Dove to come back to the hotel with us. So far she has been so good. She likes to ride in the car and Daniel seems to take over then! He is in charge! He gives her treats off and on during training, but is usually playing with toys and the other kids. Once we get her to ourselves though Daniel just loves and loves on her! We will see how it goes tonight. She can sleep in the bed with him if she wants to and we hope she does. He hasn't had a gran mal for a few days, which is normal, but we hope she will get the opportunity to see or alert for one. It would be surprising for her to alert this quick, but we can hope
!Dove training day 2 video

Tomorrow morning we will be practicing Tracking of Daniel! He will go out with the trainer and then Dove will track her and Daniel hoping to transfer his scent to Dove. It really is amazing how well thought out all of the training is done. I have been so impressed with everything here. The weather is great! The dog is great!
Kim

Training Day 1

2010-09-14T19:08:00.005-05:00

Today was day 1 of training at 4 Paws for Ability. Daniel got to meet his new seizure dog Dove! It was a terrific meeting and Daniel was thrilled to have her. He got lots of doggie kisses and hand shakes. She even gave him a high five! She really likes treats a lot, but I guess what dog doesn't.
Today we introduced ourselves to all the other families, and each dog came out to meet his new partner. All the children seemed excited about their new dogs. After introductions, we played with our new dog and gave her lots of treats so Daniel could get to know her. By the end of this time period we broke for lunch.
Instead of the usual lunch, Daniel had a visit to the urgent care center. He had started complaining of a headache and his ear was bothering him. The doctor said he had some fluid behind his right ear and that was causing his pain and headaches. I have to say that he was finished at the doctor's office, and got his prescription and was back at 4 Paws in about an hour. That's pretty good service. I hope he has a better day tomorrow. He was having a lot of small seizures this evening so we medicated and got him to bed early. Hopefully he will do well tonight.
After lunch we came back and started learning basic commands for the dogs. We each had the opportunity in small groups to practice sit, down, and walking around them without them getting up. We practiced correcting the wrong behavior and then getting the Dove to continue to do the right command and hold it until released.
We each had a chance to give commands and even Daniel tried a few times too. It was a lot of fun. I enjoyed meeting all the new people and the staff at 4 Paws were so nice. We are all looking forward to going back in the morning.
We didn't get to bring her to the hotel tonight because they didn't have time to teach us the heel command. So, she will get to come with us tomorrow night! We just were delayed in starting this morning due to unforeseen circumstances. We got to bring the kennel and dog food back to the hotel to get ready for tomorrow.
Here is a link to a video we took today.
Daniel gets a sneak peak at Dove!

Here is another link to a video of Daniel: Daniel meets Dove!
Thanks for stopping by and visiting our blog.
Kim

We have arrived!

2010-09-13T11:40:00.000-05:00

Oh boy, Ohio is a very nice state! We stayed the weekend with some new friends and had a wonderful time! Now we are in Xenia, Ohio near the 4 Paws for Ability office. Daniel will get to meet his new dog in the morning! He is so excited.
Oh yeah, I almost forgot, he lost another tooth the first night in Ohio. It come out on the way to our friends house from the airport. Daniel did great on the plane.

I think we will do some swimming if the water is warm enough for Daniel. The air here is a little chilly! So nice compared to the 90 something degrees we left there in Florida. Feels like Fall! We are in a nice hotel and in a very good area, with lots of food around!
We are looking forward to tomorrow and will keep you updated on how things go. I hope to add some video of Daniel meeting Dove! Should be so sweet.
Bye now!
Kim

Daniel's dog is named Dove!

2010-09-09T10:30:00.000-05:00

Hi Everyone,
I know most of you have heard already that Daniel's dog is named Dove. She is a beautiful, Yellow Labrador Retriever. Daniel is so excited. He asks about her all day long now. He is ready to go see Dove! We have bought her a new Kennel, leash, a pretty collar, and some new toys! I have to give a special thanks to Petland pet store who has donated several items to Dove. They were so nice.
I just have a feeling that Dove will bring many good things to this family of ours. I believe that Daniel will love her and she will be his best friend! He has said she can "tickle me with her tail" and give me doggie kisses!
I will keep you posted as we go through our training, so keep checking back often.

Daniel gets a new dog!

2010-09-07T22:13:00.000-05:00

Tomorrow is the day that we will learn which special dog will be Daniel's. Needless to say we are all very excited! There are so many dogs that might be a possible match!

Well, just in the short time that I was trying to write this, Daniel had a big seizure. He has been asleep for about 2 hours and went into a generalized tonic-clonic seizure. He doesn't scare me as much with most of his seizures, but this time he scared me. He was turning from blue to grayish and I thought he might really stop breathing this time. Erick was beside him and I know he was scared. We just talked to him, gave him the medication to stop the seizure and prayed that it worked in time. It finally stopped and his color got much better. Now he is sleeping again and I hope will not have any more tonight. I know a lot of parents are going through the same thing as we do everday, but it doesn't make it any easier when it's your child laying there.

So, in essence, we really need our new seizure service dog! Maybe we would have had a few minutes to be prepared for this one when it started. I can pray that our dog will have this ability for Daniel's sake. My hope is to have even just a little amount of warning before a seizure strikes. We have all looked at the pictures of all the dogs in training at 4 Paws for Ability and tried to guess which one might be his! We truly are so excited about this new member of our family.

Stay tuned for the updates. I will be posting stories about our training so you can see what is happening. I will try to post some pictures too!
Thanks for visiting our site.
Kim

August Already?

2010-08-05T20:58:00.002-05:00

Well, It is August and that means that it is only 5 1/2 weeks until Daniel gets to meet his new service dog. He is getting so excited! We check the dogs in training page several times a week to see all the dogs that are currently in training. One of these will be Daniel's. We should find out which one will be his about the first week of Sept.. We are starting to plan for our new service dog already. There are so many things that we need to have ready before it comes home with us. We need a new crate, collars, leashes and tethers for Daniel.

Daniel is now taking Topomax for his seizures, along with the Keppra and Zarontin. So far we have seen a fair improvement in his nighttime seizures. This has come after several long years of seizures occurring every night. I hope that this is a good trend. If we continue to see better nights with less seizures the Dr. may try to wean the Keppra off. We are hopeful that he will have less seizures at night and still do as well as he has been during the daytime.

School will start for Daniel and his sister in just a little over two weeks. We have got to go shopping for new clothes and shoes for both of them. This is such a busy time of year! Daniel is so excited about going back to school. He has wanted to go back all summer. He misses his friends a whole bunch! I am happy that he wants to go. He did so well last year and will have the same teacher again. She is a wonderful lady!

Hope everyone is having a terrific summer! It is a hot one indeed, but it has been a fun one. Daniel and Alena love to swim at their Grandma's pool. We are very lucky to have it!

I will keep you posted on any new changes. I will also let you know as soon as we find out which dog will be for Daniel. He can hardly wait!

Bye!
Kim

WEAR ABC 3 :: Top Stories

2009-12-27T19:07:00.000-06:00

WEAR ABC 3 :: Top Stories

The Case for Dravet’s Syndrome

2009-12-24T20:46:00.002-06:00

The Case for Dravet's Syndrome

Lyndsay Gutierrez

Abstract

Dravet's syndrome is a rare epilepsy condition that has only recently been classified. Despite the devastating nature of this condition, relatively little formal research has been done. Symptoms, treatments and affect on family are discussed. Further research is needed in the areas of prevention, cure and reversal of damage caused by frequent seizures.

The Case for Dravet's Syndrome

Dravet's syndrome is a rare and devastating form of epilepsy affecting children from the first year of life. The rarity of this disease and relatively new distinction as its own syndrome mean that there is little formal research available. Much of the available information is from parents of Dravet's patients and from the International Dravet's syndrome Epilepsy Action League or IDEA League (IDEALeague, 2009). More formal research is needed in support of this detrimental condition. Dravet's syndrome is a genetic disorder characterized by severe symptoms and rapid progression as well as its difficulty to diagnose and treat and the dramatic effect it has on the home and family life.

Dravet's syndrome, also known as Severe Myoclonic Epilepsy of Infancy or SMEI, is a neurodevelopmental disorder caused by a genetic mutation. Children with this condition are born apparently healthy and start developing normally, but the unseen genetic mutation causes seizures to begin somewhere during their first year. These seizures start as febrile or fever related, though as the condition progresses and the child grows, the seizures become more varied and become non-febrile, or not related to a fever. The UK's National Society for Epilepsy reports that there are over 40 types of seizures (NSE, n.d.). Some of the types of seizures include absence seizures where the patient is spaced out and unaware of their surroundings, partial seizures involving only part of the brain and the associated muscle groups, or tonic clonic, also known as grand mal seizures (IDEALeague, 2009). Grand mal are the type most people associate with "seizures", and what most medical TV shows portray. Though not as dramatic, other types of seizures all have their own damaging effect on the brain.

The brain traumas suffered by these children so many times a day not only cause developmental delays, but even regression of memory and learned skills. Speech problems are almost universal, though it is thought that they probably understand more than they are able to communicate back (Wolff, M., Cassé-Perrot, C. & Dravet, C., 2006). This can prove to be a source of frustration for parent and child alike. Children may be unable to communicate what they would like and tend to use particular phrases for any situation even if it does not convey the message they intend. These children also develop ataxia, which is a loss of coordination in voluntary muscle groups, similar to what stroke patients experience. These brain traumas are also the cause of mild to moderate retardation. A ten year old with the developmental level of a three year old is not uncommon. Secondary symptoms, those caused by the seizures, are some of the most challenging of the condition. There appears to be a link between epilepsy and other disabilities including autism (EFNJ, 2005). Autistic tendencies are common. Because the original trigger is often a fever, many have trouble maintaining proper body temperature and need constant monitoring, especially early on. They are also prone to infections and orthopedic disorders and tend to be underweight and small for their age. Most have severe sleep disturbances due partly to increased seizure activity, but also for unknown reasons (IDEALeague, 2009).

This condition is complicated not only because of the symptoms, but also the fact that treatment is considerably more difficult than with other forms of epilepsy. Most drugs that help epilepsy patients are not effective or even aggravate symptoms for Dravet's patients (Kassaï, B., Chiron, C., Augier, S., Cucherat, M., Rey, E., Gueyffier, F., et al. 2008). Stiripentol is the only drug specifically indicated for use in treating Dravet's, however it is very expensive- around $8,000 a year- and hard to get in the US. Other treatment options include a specialized diet known as the Ketogenic diet that restricts carbohydrates and is high in fats. Therapies such as Intravenous immunoglobulin (IVIg) and vagus nerve stimulation (VNS) are being studied, but as with all treatment options for Dravet's, the effectiveness of each is highly dependent on each patient. IVIg is a blood treatment typically used for inflammatory and autoimmune diseases. VNS involves stimulation sent to the brain from an implanted device similar to a pacemaker (IDEALeague, 2009). According to the IDEALeague website, "Early implementation of global therapies is essential to support optimal development. Patients with Dravet syndrome should receive physical, occupational, speech, and social/play therapies and an enriched environment is encouraged."

Because of the rarity of this disease, even getting it diagnosed is rare. Few doctors, even epilepsy specialists, know much if anything about this condition. These families may be seeing pediatric epileptologists and still it can take ten or more years in some cases to find someone who will even consider, let alone test for it. This is problematic because treatment attempts without this diagnosis are stressful and even dangerous. Once diagnosed, there is an excellent support group online through IDEA League that provides information, suggestions for doctors and treatments, even information on insurance companies that cover certain drugs and how to get them to approve it. That makes this support group critical to parents, especially those with a new diagnosis.

All of this means providing a lifetime of care which has a dramatic effect on the families of these children unless they can pay for someone to provide care. Seizures are typically worse during the night, so parents never get a full night's sleep for fear of the next seizure. Anti-seizure medications must be given on a daily basis to reduce the number of seizures and at the first sign of seizures to stop them. These medications must also be closely monitored for effectiveness and unwanted side effects as treatment is a continual trial process. Dravet's children also have no sense of boundaries or strangers, so they must constantly be watched to prevent walking into dangerous situations. They may wander out of the yard into the street in front of a car, or get lost in crowds. This is especially dangerous when combined with the lack of coordination caused by ataxia from their seizures. They love hugs and affection, but do not understand that walking up to someone they don't know may be dangerous and that not all people are friendly. Families must keep all doors locked while inside so that if the child does leave the house, at least they will know which direction they went. They must always be watchful of the child's behavior for signs of seizure and watchful of the environment for possible triggers. Everyday activities and sights can trigger a seizure. Watching television, looking at the sun, a window screen, or a neighbor's striped shirt can all act as a trigger. Even a bath can be enough to cause a seizure as some children are sensitive to temperature changes as well. While these children may have the mental development, curiosity and coordination of a young child, they have the height and reach of their own age. This can lead to challenges such as needing to keep them away from a hot stove. Despite being told that if they touch it, they may be burned, they may not understand what that means for them. While it would be easy to keep a small child who cannot reach from touching the stove or hot water from the sink or even a kitchen knife, these children are tall enough to reach on their own as soon as the parent is not looking (K. Dillard, personal communication, November 2, 2009). Tendencies toward repetitive behaviors and excessive stubbornness and activity have also been observed (IDEALeague, 2009). All of this still only considers childhood challenges. Into adulthood, people with Dravet's still often require continual care to some extent. Even those who manage to get their seizures under control will forever have developmental delays and must handle all that comes with essentially being a child trapped in an adult's body. Holding down a normal job and paying rent would be an immense challenge in most cases.

The constant monitoring of a child with Dravet's can take a toll on their family. From the time of the first seizure, parents have constant worries. Spending nights listening for normal breathing and dreading the next seizure as well as fear of not getting there in time become the daily norm. Not only does it often lead to exhausted parents, but if there are other siblings involved, it can get even more complicated. This constant attention on one family member can be difficult for everyone, especially other children. The typical sibling rivalries are due to jealousy and having to deal with of the attention given to the sibling with Dravet's. Healthy siblings may feel isolated and unimportant, which could lead towards acting out in order to get some of the attention they feel like they have been missing. All family members must be aware of and trained for seizures. Siblings need to be aware of signs that a seizure may be about to start and what to do if it does. Especially if parents would ever like a break, it is important to have family members or friends trained on treating seizures and being aware of triggers and warnings.

Beyond the day to day challenges, financial concerns are often a source of stress for families. At around $2,000 a month, the costs of medication alone can be enough to challenge a family's budget. Even with insurance, the co-pay adds up quickly. Add in the need to see specialists located in only certain areas of the country which requires not only the expense of the specialist themselves but also the travel required for child and parent. There are also conferences around the world that provide valuable insight and connections, but mean more travel expense. While insurance coverage is possible for these needs, it is often difficult to obtain and a recurring battle to get more covered.

This rare genetic condition has a life-altering effect on the patients and their families. While research is being done, there is still more to do to find effective treatments and possibly a way to prevent this debilitating condition from affecting more people. Epilepsy affects more people than Cerebral Palsy, Multiple Sclerosis and Parkinson's disease combined. While Dravet's Syndrome represents only a small portion of this, more are being diagnosed all the time. Still, according to Citizens United for Research in Epilepsy (CURE), research funding per Parkinson's patient averages $2,000-$2,500- more than four times the $500-$590 range per epilepsy patient. Alzheimer's disease and autism are also significantly more funded, despite being less common (CURE, 2009). More research needs to be conducted in support of Dravet's syndrome's classification, diagnosis and affect on family life in order to provide the best support possible.

References

Citizens United for Research in Epilepsy (CURE) (2009) What is epilepsy? Retrieved 14 Dec 2009 from http://www.cureepilepsy.org/about/what_is_epilepsy.asp

Epilepsy Foundation New Jersey (EFNJ) (2005) Epilepsy Statistics Retrieved 14 Dec 2009 from http://www.efnj.com/content/info/statistics.html

International Dravet's syndrome Epilepsy Action League (2009) IDEALeague homepage Retrieved 22 Nov 2009 from http://www.idea-league.org/

Kassaï, B., Chiron, C., Augier, S., Cucherat, M., Rey, E., Gueyffier, F., et al. (2008). Severe myoclonic epilepsy in infancy: A systematic review and a meta-analysis of individual patient data. Epilepsia (Series 4), 49(2), 343-348.

National Society for Epilepsy (NSE) (n.d.) Epilepsy- did you know…? Retrieved 12 Nov 2009 from http://www.epilepsysociety.org.uk/AboutEpilepsy/Whatisepilepsy/Epilepsy-didyouknow

Siegler, Z., Barsi, P., Neuwirth, M., Jerney, J., Kassay, M., Janszky, J., et al. (2005). Hippocampal sclerosis in severe myoclonic epilepsy in infancy: A retrospective MRI study.
Epilepsia (Series 4), 46 (Issue 5), pp 704-708.

Wolff, M., Cassé-Perrot, C. & Dravet, C. (2006). Severe Myoclonic Epilepsy of Infants (Dravet Syndrome): Natural history and neuropsychological findings. Epilepsia (Series 4), 47 (Nov2006 Supplement 2), pp 45-48.

Special thanks to Erick and Kim Dillard for all their great insight, advice, suggestions and recommendations.

Changes with Daniel

2009-12-06T16:38:00.003-06:00

Hi everyone. Today has been a difficult day for Daniel. He seems to be having more petit mal seizures over the last 3 weeks. I am not sure why but am hoping to hear from the doctor regarding this and if he wants to make any changes in his medication dosage to try and help. He is having a lot of trouble being out in the sunlight also. This had gotten a bit better this summer. Maybe the meds just need a little tuning up! We had a very nice Thanksgiving with the family. Looking forward to the holidays this year. Most Christmas mornings have been quite hard on Daniel and we are very hopeful that this year will be better. Some years he couldn't even open his presents. We opened them for him and gave them to him later when he was able to play. This year is going to be better, I just know it! He is waking up so much better than he used to and can get up and do things much quicker.
A friend has redone Daniel's website and added some nice changes. We also added some links to stories about seizure dogs that are currently helping children in their daily lives. Please check out the site and go to the links page and click on some of the stories! www.danielsdog.com
I put a nice bulletin board up at Daniel's school, R.C. Lipscomb Elementary. (picture above)
Everyone seemed very excited about how cute it looked. Our friend Pam McAfee cut aout all the things and put it together for me so all I had to do was put it on the board! She was a huge help!
I hope you all have a happy and safe holiday!

Oh, and by the way.... Our donation total has reached$ 9,285.20! What a great community we live in! Also thanks to our family and friends near and far! We wouldn't be this far without all of your help. God has certainly blessed us this year!

New Donation Update!

2009-11-30T19:22:00.001-06:00

Hi everybody! We have a new total today of $8,785.20!! Way to go! Thank you to all who have donated or helped in some way. We wouldn't be this far without your help!
Thank you so much for helping this come to life for Daniel. He really needs this Seizure dog!
Thanks to All!
Kim

Back from Miami

2009-11-20T13:53:00.002-06:00

We just got back from seeing the new Dr. in Miami at the Sodium ion Channel Epilepsy Clinic. Dr. Miller was very nice and we saw the geneticist and Neuropsychology physicians. We are making a slight change in one of Daniels medications to see if the nighttime seizures might lessen. After a while of that we have some other new options with different medications. I fee like they really care about these children with Dravet's and similar disorders. I am glad that I took Daniel there. I also got to meet about 5 other families with children that have Dravet's. They were mostly from south Florida area. It was very good to be able to sit and talk with people that have gone through what we are going through. Some are doing better than others as would be expected. A lot of beautiful children with smiling faces. We will return to Miami in Ferbruary for the next clinic visit. They have it every three months. I feel better about our situation now, and for Daniel's prospects for the future.
A new donation update: We are now up to $6,135.00 in donations to 4 Paws for Ability! We want to thank all of you that have donated, helped spread the word and are supporting us in various ways to help us reach our goal of $15,000.
We have truly been blessed and are grateful for all the help that we have been given.
Sincerely,
Kim and Erick

donation update

2009-11-09T22:46:00.002-06:00

Hi, today we found out that the total donations have reached $5,710.60. That is so amazing! We want to thank everyone for all their help and donations. We would not be this far without the kindness and generosity of others. Our community has been great to Daniel and even those far away. If we keep this pace up we may reach our goal by the end of the year! Wouldn't that be terrific?
Daniel has been out of school today and tomorrow due to Tropical storm Ida. He was really good today, it is hard to keep him entertained on rainy days sometimes.
Thanks you to all who have helped us and donated to 4 Paws for Ability. They are a great organization and we look forward to being up there and doing our training next year.
Have a good night!

Donation Update

2009-11-02T18:37:00.003-06:00

Hi to everyone. We just got a donation update today. As of 11/2/2009 we are at $3610.60 in total donations. Thank you to everyone that has donated or is helping by passing Daniel's story on to others. We wouldn't be here without all your help. Daniel has a field trip tomorrow to the Historic Village in Pensacola. I will go along to assist. I think the teacher likes one of us to be there for these kind of outings. Can't say as I blame her. You just never know when a seizure is going to strike.
We met a young boy at Daniel's baseball game(Miracle League Team) that, believe it or not, also has Dravet's Syndrome. He was just diagnosed last year and I believe is about 12 yr old. His family is very nice and boy do we have lot in common! We will get together soon.
How nice it will be to have someone here to talk to that knows just what we are going through each day.
Daniel had a great Halloween. We made it through without any seizures. Of course he had his usual ones at night, but not on anyone's doorstep like last year. that wasn't fun at all.
We hope to have a great week.
Thanks to all who have donated to 4 Paws for Ability to help in training a dog for Daniel. We appreciate all your help.
Thank you.
Kim

Almost Halloween!

2009-10-29T08:35:00.002-05:00

Good morning. Today Daniel got off to school okay. He sure loves that bus and bus drivers. He has had 3 nights in a row that were hard on him. He will probably be very tired tomorrow. He has had a grand mal the last two nights and last night he had 2 different seizure episodes. He must be tired. On the other hand he is off of all the Lamictal. We are seeing just a few seizures( eye flutters) in the afternoons, but not too severe. We will be going to Miami Childrens Brain Institute to see Dr Miller in the Sodium Ion channel epilepsy clinic in November. I will let you know what he says. they may want to make some more adjustments in his medications.
tomorrow his class is going to a Halloween Trick or treat party in downtown Pensacola. it usually is lots of children ahving lots of fun! I'll try to get some pictures.
hope you all have a blessed day.
Kim

Almost off the Lamictal

2009-10-25T13:37:00.002-05:00

Today is Daniel's last day on the Lamictal. We have been weaning him off of it for the last few weeks. So far so good. We think this may have contributed to his rapid decline last year. We didn't know he had Dravet's Syndrome yet when he started this medication. As we now know this medication can definitely make children with Dravet's much worse. So with the addition of the Zarontin and the taking the Lamictal out we hope he will stay improved. He is still having about 1 tonic-clonic(grand mal) seizure a week at night, plus the other types of seizures. Overall though he is much improved over last year. Keep him in your prayers and thoughts that we will continue on this trek.

Daniel jumping on the "bouncy thing"

2009-10-24T08:02:00.001-05:00

This is Daniel as he gets off the bus from school!

Here he is jumping on the "bouncy thing" as he calls it!

After the "Bouncy thing"! He was having a really good day so we took him to the Mall to jump! He just loved it! Was pretty tired after the 5 minutes.

Yea it's Friday!

2009-10-23T21:58:00.003-05:00

Today Daniel had a particularly good day. So, we had to take advantage of it. First we went to his favorite place to eat: Waffle House! The ladies there are so nice to him. Mrs. Traci even gave him a Property Of Waffle House shirt. It was so nice of her. We ran a couple of errands, took lunch to some friends at the pharmacy. Then this evening Erick and I took him to the Mall to jump on the "bouncy Thing' as Daniel calls it. It is kinda like a bungee or harness that lets you jump real high! He just loves it. Of course being indoors is nice because it's nice and cool. I am trying to post a video of it on Youtube but haven't got it figured out yet. I'll post it as soon as I can. Just watch for the big smile on his face! He was pretty worn out after that so we got a quick dinner and headed home. He read his new book and went right to sleep.
Goodnight for now
Kim

2009-10-21T21:32:00.003-05:00

Hi Everyone, It was a beautiful day here in Pensacola! Nice and cool. Just wanted to update you all on our fund raising efforts. I was informed this morning that 4 Paws for Ability has received $1,245.50 in donations in honor of Daniel! What a blessing this is. We want to thank each and every one that has sent in a donation and /or sent the information out to your friends and family. We wouldn't be here without you! I know there are some that have been sent in that are not included in this total. What a wonderful week it has been.
Daniel had a pretty good day today. He is being weaned off of one of his medications and we are watching him closely. He seems to be having some seizure activity in the afternoons that we haven't seen for a while. We will have to see how he does for the next couple of weeks. He has one more week on the medication we are stopping.
He is very excited about trick or treating. Hopefully this year he will make it around the block. We have a new wheelchair/stroller for him now that should make it a lot easier. We usually pull him in a wagon or something, but he has gotten to big for that. He loves to dress up in costume. This year he is a stormtrooper. He doesn't really know what that is , but just liked the way the costume looked.
I will continue to update as new info comes in. Thanks to all that are making this possible for Daniel. He will really benefit from having a seizure alert dog around!
Thanks to all,
Kim,Erick,Alena,Daniel

2009-10-16T13:43:00.002-05:00

Hi everyone,
It is a beautiful day in Pensacola today! Nice and cool so maybe Daniel can play outside a bit this afternoon. We have reached $185 in donations so far! Thanks to all who have donated it is appreciated so much!
We are getting ready for a neighborhood yard sale tomorrow. Should be a busy morning we hope. If anyone knows where Lake Estelle is come on by and start shopping in the morning! 7A.M.
Hope everyone has a safe and fun filled weekend.
Kim

2009-10-13T23:57:00.000-05:00

We received our first donations today! What excitement that caused. Turns out that one of the donations came from a former coworker that I hadn't seen in years. Better yet, her daughter is married to our preachers son. It is truly a small world.
Thanks to everyone who has joined our Cause on Facebook.
Daniel had a pretty good day at school today. Was having a little trouble with some small seizures this afternoon. Hopefully that will be better tomorrow.
Thanks to those who donated today, we truly appreciate it!
Kim

A Dog For Daniel

2009-10-12T18:00:00.000-05:00

Welcome everyone!
Our application has just been approved for Daniel to get a seizure alert dog.
We are just beginning our efforts to raise $15,000 for 4Paws For Ability, a non-profit organization, in order for them to begin training a seizure alert dog for Daniel. One of the things we liked about this organization is that they have 98% success rate in placements using donated and rescued animals!
This dog will not only have the potential to alert us that Daniel is going to have a seizure, but also tracking Daniel if he gets lost, tethering to keep Daniel close by us in large crowds or unsafe situations, but also behavior disruption to calm Daniel in stressful situations. He can even sleep with Daniel and possibly alert us to seizures at night! This organization has had huge success in joining children with compatible dogs. We are very excited about what this will mean for Daniel and the entire family.
You have no idea what kind of hope this brings to us!

Donations should be made out to "4 Paws For Ability,Inc."
If you would like to make a donation they can be mailed to :
4 Paws For Ability
253 Dayton Ave.
Xenia, Ohio 45385
Your donation will be tax deductible and you will receive a letter from 4 Paws For Ability when your donation is made.

Please note that your donation is in honor of Daniel Dillard so he will get credit for it! You can also go online and contribute. www.4pawsforability.org

Please check back for current fundraising activities as well as ways that you can volunteer or support our efforts.

For more information on the organization go to 4pawsforability.org
We thank you very much for caring!
Kim, Erick,Alena and Daniel