It’s been so long…

This slideshow requires JavaScript.

I don’t even know where to begin! We are in a happy place, with less seizures, more smiles and lots of laughter! The Aptiom has been amazing for Brett, in addition to drastically changing his VNS settings. He has gone down to minimal seizures, with having only a few a week. Recently, he went the longest ever without a seizure for 11 days! He has done a year of PT and OT, worked really hard in both and made exceptional progress. He hasn’t used his wheelchair except for a handful of times, in almost 2 years. Initially Brett had fine motor control of a 2-4 year old. He is in range with his IQ now at 6-8 age level. He will start up OT and PT again soon and we look forward to seeing more progress. We also hope to get him into vision therapy, as he has a visual disorder that they haven’t figured out just yet. We will finally get Brett’s Service Dog in a few weeks. It has been a LONG and painful journey to get here… but it’s time. He has been through a lot and healed so much since then. I am forever grateful for the anonymous donor that donated through the Chelsea Hutchison Foundation as well as DomestiPups for this amazing miracle for Brett! 

I still can’t believe my Epilepsy Warrior Boys are 18 and 13 already!! 

24909877_10214496209856270_659568372617918225_nbrynn18

Brynnon is a handsome man now, at 18 he is still funny as ever. He still has a few seizures a week, which causes some aggression and irritability, but other than that he does relatively well. He has done well adapting to the world with his moderate intellectual disability and still loves to fix things, especially taking apart things to see how they work! 

With the time available and money needed I figured out that for me, sewing is therapy! I started the adventure wanting a quilt for Brett. When I saw the prices, I decided to make one for him. Well, that led to me making ones for all my children. I started making VNS Magnet Bracelets along the way too. Oh how I do so greatly enjoy making special needs items that will help a child feel special. I started doing vinyl decals for EMS alert, since we use them I knew other parents had a need for them as well. I got busy enough that I opened my own Shop on Etsy! Check it out! 
http://etsy.com/shop/EWB
Here are some of the items I have made for our family and other special needs families! 

Say Bye Bye to those black  plain medical bracelets that come with your VNS magnets and HELLO to having your favorite colors and your name embroidered on yours. Wear them
confidently because they are stylish, adjustable and comfortable. What are your favorite colors?
Let me make yours today!

Advertisements

Before choosing a Service Dog Trainer

Our Service Dog Blue just celebrated her first Birthday! She has been off duty healing from having her spay surgery. We decided that spaying may help with the problem she has developed….
Fear Aggression, yikes! In response to the heartache of having this problem and all the emotions of having a service dog that needs serious training to correct this negative and unacceptable behavior. In any situation barking/growling at men and even in public, is never acceptable in a Service Dog. I have decided to share the survey responses from a survey I created to get the common answers of others who have a service dog to better understand what is normal and what is not when service dogs are delivered. She is clearly not ready for Service Dog work and cannot go back in public until this behavior is corrected. We have chosen a new trainer and will keep you updated as to her progress.
Brett says:

 “There can only ever be one BLUE.” 


It is after all what Faith and Dreams are made of, 


believing even when you have no evidence.

*How old was your service dog when delivered or you went to get it.

  • Answered: 46 
  • Skipped: 0

  • Under 1 Year
    23.91%
    11

    12-18 months
    39.13%
    18

    Over 18 months
    36.96%
    17
    Total 46
  • *Did your Service Dog have pee/poop accidents in your home in the first month?

    • Answered: 45 
    • Skipped: 1

    • Never
      80.00%
      36

      Every Day for a few days
      13.33%
      6

      Every Day for 10 or more days
      6.67%
      3
      Total 45
      • *How much did you pay the trainer for training your Service Dog? (Training only, not any other cost)

        • Answered: 40 
        • Skipped: 6

        • $1,000 – $7,000
          42.50%
          17

          $8,000 – 15,000
          45.00%
          18

          More than $15,000
          12.50%
          5
          Total 40
        • *Does the Service Dog meet your families expectations from the information your trainer gave you?

          • Answered: 45 
          • Skipped: 1

          • Somewhat, we have more problems than I expected
            17.78%
            8

            Not at all what I expected
            6.67%
            3

            100% Perfect both at home and in public
            75.56%
            34
            Total 45
          • *How much time do you spend training with your Service Dog, not walking or play actually training for task?

            • Answered: 45 
            • Skipped: 1
            • Up to an Hour
              48.89%
              22

              1 – 2 Hours
              24.44%
              11

              2 Hours or More
              26.67%
              12
              Total 45

              *How much do you think you spend in a typical  month for your Service Dogs Needs? (Food, Toys, Equipment, and anything needed monthly)

              • Answered: 45 
              • Skipped: 1
                • $50 or less
                  15.56%
                  7

                  $100 or Less
                  62.22%
                  28

                  More than $100
                  22.22%
                  10
                  Total 45
                  • *How long did it take for Your Service Dog to Adjust to your family?

                    • Answered: 44 
                    • Skipped: 2
                      • Immediately
                        56.82%
                        25

                        A week
                        27.27%
                        12

                        Longer than a week
                        15.91%
                        7
                        Total 44
                        • *How many specific Service Dog Commands did your Service Dog come home with?

                          • Answered: 42 
                          • Skipped: 4
                            • Under 10
                              28.57%
                              12

                              Under 20
                              38.10%
                              16

                              More than 20
                              33.33%
                              14
                              Total 42
                              • *What has been your overall Service Dog Experience? (Health, Obedience, Task Ability, Help to you/your family)

                                • Answered: 43 
                                • Skipped: 3
                                  • My Service Dog was delivered/picked up and met my needs on Day One
                                    58.14%
                                    25

                                    Helpful but not Perfect, a Work in Progress
                                    34.88%
                                    15

                                    My Service Dog does not meet my needs yet.
                                    6.98%
                                    3
                                    Total 43
                                  • Clearly we can see that there are averages here, and the averages do correlate with the success rate of the placed Service Dog. According to this survey answered by owners of Service Dogs we can summarize:  
                                    1. A Service Dog can be successfully placed at a cost of up to $15,000.
                                    2. 12 months and older is a more common age to place a service dog. (From feedback it was discovered that many puppies go to the home for bonding until they reach a year, go back to trainer for service dog training before placement into the home as a working service dog. Therefore, my data is incomplete) 
                                    3. Peeing/Pooping in the house is consistent with incomplete training. Only 3 of my responders said their service dog did this for ten10 days or longer.
                                    4. A full 75% said their Service Dog met their expectations. Encouraging!
                                    5. All successful placements said their Service Dog immediately adjusted or adjusted within a week of placement to their new home. 
                                    6. Only 3 of my responders said their service dog has not met their needs yet.

                                    Where are the answers for the last question:

                                    *What is the greatest Advice you can give someone looking for a Trainer? (No Trainer Names please)

                                    It’s best to wait for a large nonprofit to help you that only provides service dogs.
                                    ——————————————————————————————————
                                    Research & read reviews!
                                    Research, research
                                    Attention to detail re: training specifics. Give the recipients a “books to read” before they come train with the dog. During training have written quizzes for recipient/handler for recipient. REVIEW the answers together. Give more explanation if necessary. Have written/typed instructions for what to do (EXACTLY) when you get your dog home. 
                                    Make sure you do your homework
                                    Research!! There are many scams out there. Get references and follow up on them.
                                    Look for a program that is a nonprofit. Some “trainers” are in it for the money. Also look for one that specializes in a couple things not everything. 
                                    Research the good and the bad on everything.
                                    Ask lots of ?’s
                                    My short answer is DO YOUR RESEARCH / HOMEWORK. BE INFORMED! 
                                    A trainer that treats the dogs as he/she would their own children. Also, in my experience, a well trained trainer teaches the dog and passes that knowledge to the human. The dog knows what is it expected if trained well, the humans are more often the problem with “problematic” dogs.
                                    Always stay on them and try and get them to train with the persoN with disability
                                    If you have the time to commit, I truly believe getting the dog as a puppy and work with the trainers while training. This way the dog and the person it is getting trained for can start the binding process and get to know each other sooner..
                                    By using a professional organization, you not only get more than one great trainer, but you have an instant family of other people in the same situation who come to training with you. I can only say you’re missing out if you don’t go this route. It’s worth the extra funding.
                                    Get references and talk to them
                                    Make sure the trainer is 1.knowledgeable 2. respectful of your family needs 3. the right personality match with YOU!.
                                    Ask lots of questions and communicate what your needs are in the beginning
                                    Research the company and talk to people that have gotten a dog through the company. Speak to the owner of the company if possible to see what they have accomplished with their dogs.
                                    Check references and remember the SD is still a DOG! They are not robots! They require constant attention and work to keep up their training. But are so worth it!
                                    Choose someone who you like and who is close enough to help with ongoing training.
                                    Someone that is looking (to) help children and not all about the money.
                                    Someone that truly understands the needs of your child, or person needing the service animal. Someone who is able to meet your needs, but also exceed them. Someone caring, understanding, and knowledgable.
                                    Make they listen and you all understand what your looking for in a service dog.
                                    Just the name or title Service Dog brings the price up for dogs and training up like 300%. Don’t fall for this. Get your dog to a Certified Obedience Trainer and have them work specifically with your needs. You will save thousands of dollars. My complete training cost me around 750 and my dog does exactly what I need her to do.
                                    Look for an organization that provides the dog and training.
                                    Do your research and read reviews. We chose a fantastic organization that provides LIFETIME support regarding training and/or any health issues that arise as well as a network/support group of other families that have received service dogs from their organization.
                                    Make sure your approach to animals and training match your trainers–use your instincts. Like choosing a church or neighborhood, If it doesn’t feel right, it probably isn’t. there are many good trainers who see the world differently than you, and have strong biases. Make sure your biases match theirs. Also, start by getting to know your local dog community. We ultimately chose a trainer that was 500 miles away, but we would never have found her without the dog training school that is 5 miles away. It was the community at the local dog school that helped me–one person knew another who knew another. Also, don’t be disappointed if the first trainer/organization doesn’t work. We spent 3 years looking, and ultimately tried 4 places before we found the trainer and dog that worked for us. It is not a cut and dried field–service dogs–we thought we’d go with a a large well know organization, but that did not work for us. We ended up with a very small time trainer, one person operation, and it was perfect for us. that said, there is still an incredible adjustment period with the dog in our home. She is trained, but we are not. She also needs to be retaught what we expect of her in our home. She is willing and well-prepared to learn her place, but we have to be the ones to guide her and fine tune her training. Finally, there are no real guidelines or national regulations for service dog training. You really have to research what you what, and trust the person you pick to know the best approach without national regulations. Our dog serves our 11 year old daughter with daily seizures and developmental delay. We as parents are trainers and handlers. Good luck.
                                    Track record, referrals, persistence, under promise over deliver.
                                    Get references, ask a lot of questions, and ask them in different ways see if same answer! Be specific on questions!
                                    Research, research, research. When you find a trainer/organization you think looks good, dig into them. Do Better Business Bureau searches on each one. Check out their web sites, and ask questions about their financials. Know where the money goes, and who benefits from it.
                                    Go through a large organization, 75% of the trainers are frauds.
                                    Look for someone that will continue to support you even after the dog has left their facility, is communicative, and will answer questions. Even before the dog came home, the trainer sent regular updates (photos and video), gave us reading/video material to reference and watch in order to learn how to properly handle the dog, and happily answered even the most silly of questions. The trainer helped us to become part of a whole support network of handlers and SDs and was clearly invested in what was best for each tea.
                                    Make sure they are compatible
                                    You really do get what you pay for.
                                    Research and ask for references.

                                    Here are some links to help in your journey!

                                    RED FLAGS (programs to avoid)

                                    A red flag is something so significantly wrong it would cause any legitimate program or trainer to cringe at the thought. Ethical programs do not operate this way.

                                    http://servicedogcentral.org/conten


                                    How to choose your service or assistance dog program

                                    There are many factors to consider when choosing an Assistance Dog program. First, you must identify your individual needs and decide if a working dog is right for you. Every person needs to weigh the benefits of partnering with an Assistance Dog against the drawbacks. Once you have decided a working dog is right for you, finding a program that suits your needs is the next step.

                                    http://servicedogcentral.org/content/node/517

We are making progress, progress is good!





It’s been a while, here I am again catching up! We are pretty excited that the Neurology Clinic we are going to sent us to a Geneticist! He will be researching the two genes that Brett’s Epilepsy Panel came back with. He also ordered a Fragile X and CGH+SNP Microarrays. He doesn’t think they have Fragile X, but he felt that we should do it just to cover that. The Microarray test may or may not give answers, but it will answer some questions.
The geneticist also feels that whatever we are dealing with is a female carried problem, and all my male children had a 50/50 chance of having it. I suppose only time will tell and it appears that we will wait several weeks to 6 months to get the full test results. YIKES! What is the test? Well, it test for chromosomal imbalances that may be the cause of developmental delay/disability on the boys by looking for any imbalance of genetic material such as additional copies or loss of whole chromosomes or deletions and/or  duplication in segments of chromosomes. The information we gain may have no clinical value as for treatment protocol, but it is possible it could. If nothing comes back the test will act as a baseline, and we will know what it is not. It will be good to have it done even if we get no answers, so at least we can say well it’s not _____. I have taken the test with a grain of salt, as I have seen so many parents hope that it would give answers and they were disappointed. I have also seen a few that did get answers from the test, so I still have hope for answers!  It would be a great benefit to have a name for this journey other than Cryptogenic Refractory Epilepsy. Even greater a benefit if we could know for future generations how likely it is that this will be passed on. Brett is still having a hard time,  

since the hospital admission he has not had cluster or big seizure freedom for more than a few days at a time. He seems to consistently do better after it gets dark until bedtime over the last several weeks. We have the Nasal Versed, Diastat and Ativan to use when they get out of hand. Fortunately, I find that the Ativan given soon enough can help him to not need the others. He is handling it well, and I know he is working at understanding his seizure disorder.  

He knows when his body needs rest and does not have to be told to sleep, he just lays down and sleeps when the “seizurish” feeling hits him. This is a wonderful accomplishment because resting is the first defence against clusters for him it seems. We purchased an awesome Purple Wheelchair for him from a kind seller on ebay. He let me trade a CARE bracelet I had for sale for the wheelchair and I paid the shipping. It is an Invacare Solara Tilt in Space model. It’s a bit big for





Brett and we have no way at the moment of transporting it. The idea came about when Brett went into status at the physical therapy office and having the Tonic Clonic seizure in the standard chair we saw how dangerous that was. What we need is a chair that can be adjusted when seizures happen to lean him back and keep him safe. CRS referred us to Easter Seals, who is working with us for a solution. We will need a Hitch for the family vehicle, but the amazing sweet lady at Easter Seals decided that he really needs a smaller chair, with wheels that he can move himself when he is able. They possibly even have a lift available for us to use to attach to the back so that we can still access the hatchback. Blue will be home soon and we will  not have a lot of extra space in the family vehicle. We expect to have it for at least a few more years, so we have to adapt it to make it user-friendly as our needs change. We are looking forward to getting out the house and truly obtaining “Positive Seizure Management” when Blue gets HOME!  It sure will be wonderful to finally be able to do things in spite of the seizures. As a family, we need to learn to live life to the best of our ability, through the seizures! I find myself in a great amount of gratitude for those that have donated to make Blue possible. Her balance is down to $410 as of today. It is amazing that a few people, churches, and one business came together and got us this far. We all have great happy feelings knowing that people have seen the need, reached out and gave.

Here is a link to the Red Basket site set up for Brynn and Brett’s Seizure Alert K9 Blue:


https://redbasket.org/320/bring-blue-home
All donations through Red Basket are tax deductible. We would like to thank Red Basket for their help in setting up the boys page. They are really great to work with and verify all askers, so you can feel good about donating to any cause on the site. 

I have been volunteering with National Seizure Disorders Foundation and hope to spend many years helping others achieve their goals! I really enjoy being the Treasurer and writing Caregivers Corner! We have some really great folks on the Board of Directors and I am blessed to have them in our lives. We would like to thank National Seizure Disorders Foundation for helping us to believe that Blue was possible and helping me not to loose faith or focus when people were not donating! 



Here is a link to the latest edition of Caregivers Corner:
http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner-by-denise-marsh-2/


   

Emotional mess turns into Thankfulness!

I sat down to write this blog today with so much emotion. Joy, Thankfulness, Gratefulness,

Love, Happiness… with a little Pain and Raw Emotions from the past. This past week has brought some of the most wonderful awesome news… In a matter of hours I got word that Brynn will not have to have surgery for his knee! The Orthopedic surgeon said that his kneecap could and likely will pop out of place again some time in his and need surgery, but if Brynn were his child with all that he has going on, he would leave it alone and hope for the best! Wonderful news, I was really dreading the thought of Brynn who is at the moment more stable than he has been in years with his seizures having surgery! Not long after that news came National Seizures Disorders Foundations email with the balance we need to finish Blue’s training…

 Just under $1,600! Amazing that so many have donated and made the impossible possible! What a tremendous blessing to know that so many people have come together and helped make this happen! It should be fairly easy to raise the balance needed and that takes a lot of stress away from our daily

unknowns. We know that Blue will make such a difference in the quality of life for Brynn and Brett. We can’t wait to get her home and feel all the love she is filled with from all of the love, prayers and support that is making her possible. We will always see each of you as a part of Blue, she will always be an amazing beautiful testimony of how God made the impossible possible. We checked

the P.O. Box today and found a bunch of amazing Birthday wishes for Brynn and Brett. The cards show them they are thought of and loves by so many people from all over the place! They were amazed that they each got a card from Canada too! The cards will be a beautiful addition to their wall of Love, Prayers and

support! There was a key in the P.O. Box leading to another box. Which had a Big box from a loving person filled with Paint, Brushes, Paper, Pencils, Cards and even stickers for Abigail! They were so surprised to see that box and were anxious to open it too!
They will be painting for a long time with the two beautiful boxes of love they received from two “Strangers” that have become “Family.” 

Here are a few samples of Brynn and Brett’s work! They both enjoy looking at other paintings and really enjoy painting too! 



With all that amazing, happy, joyful, grateful and thankful emotion it made me see the coming Birthday of Mom and the Anniversary of her murder differently. Every year about this time before her October 19th Birthday I have this overwhelming sadness and tears flow so easy. I noticed it a few days ago… and as usual pretended to ignore it’s looming dark, negative, sad effect on my life. For years, it has become a part of me that I had no control of. I tried year after year to portray to anyone who would listen how wonderful, beautiful she was and how unfair it was that she was taken away so brutally, and so suddenly. It occurred to me today as I was watching the joy on Brynn and Brett’s faces from

their P.O. Box filled with love… that I can no more convey who Janice Estelle Ashcraft was as I could convey how much it means to Brynn and Brett that they are so loved and thought of. I can post 1,000 photos but they could never convey who she was or how she lived. I could write a million words, but I can never convey the effect her murder has had on her mother, her siblings, her children and even the next generation the effect will go on.

Cast your burden on the LORD, and he will sustain you; he will never permit the righteous to be moved.” ~Psalm 55:22
 

I can choose however, to try to stay positive. I have chosen to forgive the person that I hold responsible for her death and I will chose to focus on the positive… no matter what life brings my way.

For the people shall dwell in Zion at Jerusalem: thou shalt weep no more: he will be very gracious unto thee at the voice of thy cry; when he shall hear it, he will answer thee.” ~Isaiah 30:19   I will choose to be sure that my children have all the love that they have missed out by having a broken family, by reaching out and letting the strangers that love, support and pray for them know that they need them. “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison,  as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” ~2 Corinthians 4:16-18
 

They will never get a gift from their Grandmother… or many other relatives who are not in their lives. They are however blessed by God to have the adopted Aunt’s and Uncles, Gan Gans and all the wonderful loving people who have stepped up in her place and for that I am forever thankful.

“The LORD is a stronghold for the oppressed, a stronghold in times of trouble. And those who know your name put their trust in you, for you, O LORD, have not forsaken those who seek you.” ~Psalm 9:9
New Video for Blue!
https://youtube.googleapis.com/v/6hk0LlEFv5s&source=uds

Brett’s current common Seizure Type… 

Just because Brett is so darn cute! 🙂