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Monday, March 23, 2015

It's been a while UPDATE!


Happiest News First! BLUE and BLUE'S DELIVERY IS PAID IN FULL! Yay! Delivery is set for April 9th! We are so excited! We can't wait to have her here and to train with the trainer on how to take her everywhere and keep up with her training as well. Brett is super excited! 17 days and counting down! With the trainer and Blue here we will visit stores, restaurants, bowling alley and theatre to be sure we do not have any access issues. This will help Brynn and Brett learn to handle Blue as well. We have gotten a few homecoming gifts from Blue's wishlist. I will post the link at the bottom. Brett had a 4th medication added, Depakote. This medication has helped a great deal with controlling the myoclonic and atonic seizures that were making him fall. He is having less Complex Partials with this new medication added on and has only needed Diastat once for rescue. We also got the advice to give Ativan for the "seizurish" activity that often happens before a bigger seizure. It was confirmed that the "seizurish" activity is actually seizure activity. This has helped him to not go into as much clustering having this clarification. Brynn is still doing fabulous on his medication combo.
The Geneticist got the results back for the Microarray and the Fragile X, both test were negative for both boys. He believes what we are dealing with is "Metabolic." Ha, after hours of researching I concluded that can mean hundreds of things. They submitted more blood and urine for more test on the 19th, awaiting those results. 

 

We worked really hard at fundraising to bring Blue home. As a special Thank You gift for two of the highest donors, we had these made by L&E Creations (they can be found on facebook). We love these mini Brynn and Brett's! We mailed out some other gifts (Bracelets, Shoestrings
and necklaces) to anyone who donated $250 or more. We learned a lot through this fundraising adventure and hope to help others reach their goals as well! We are so very grateful for the families that helped! We know Blue will be so full of love through everyone's gifts and prayers! Brett's new glasses seem to be helping him to see better. He still cannot wear them when
he is feeling seizurish, but when his seizure activity is down he doesn't mind wearing them. He will return next month to have his eyes checked again. We are in the process of house hunting for a house in the country. We know it will do both Brynn and Brett good to get the fresh air and freedom that this city life cannot provide them! Things have been pretty busy with my volunteering for National Seizure Disorders Foundation, Wrapping up everything
to get ready for Blue and seizures mixed here and there. Expect that April will be an even busier month! Really hope by June we can breath some Country Air! :) 
Brynn and Brett were recently blessed to participate in the Warrior Beads Program through  http://www.1boy4change.org/
Chris and his Mom are a tremendous blessing and this is a great cause to donate to. They are a 501(c)(3) Charity too! 

I was in tears when I realized the seizure count estimates. Anyone who knows me, knows that we don't count small seizures. If it's not a few minutes long I don't journal them, except noting seizurish, cognitively slow or Aura. Brynn was not diagnosed until his 11th Birthday October 2010. Brynn's estimated seizure total since diagnosis? 744. Brett was not diagnosed until he was 8, in
August 2013. Brett's Seizure Total since they have been journaled? 434. I knew Brett had already surpassed Brynn in status events, and I also knew that his Epilepsy seemed much worse than Brynn's was. I had no idea that either of their numbers would be this high. Our Favorite prior neuro had me give seizure counts at each visit to keep track, especially when we changed medications or doses. The
estimates are the total of 2014 seizures multiplied by the number of years since diagnosis. We will keep adding beads to journal the Dr. visits, Ambulance rides, blood test, EEG's, Hospital Stays, surgeries and everything else that they go through. I bought some very special
beads. They are white but change into a color only in the sunlight. We will use these for SEIZURE FREE DAYS! This is a really neat way to keep up with any medical journey. What a blessing 1 Boy 4 Change is to have gifted our Epilepsy Warrior Boys with this! That catches you up! Will try to post again soon!   

WoooWhooo Just 17 days till Blue comes Home!! Here is the

Amazon 
Home Coming Wishlist for Blue! We are so excited for

our Beautiful Blue to come home!!

Brynn and Brett 
LOVE getting the packages addressed to The

Epilepsy Warrior 
Boys for Blue, when you order through the 

wish list they come straight to our door!! Take a Look at this 

link: 

 
http://amzn.com/w/R135IOYHJRDO
Oh... DON'T FORGET!! Thursday March 26th is Epilepsy Awareness Day!! :)
     

Wednesday, January 28, 2015

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/












   


Monday, December 15, 2014

Decembers Caregivers Corner NSDF

 This is a special place Found in our NSDF website for Caregivers only. Find comfort, support, and helpful resources here from caregivers just like YOU!
 
http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner-2/?utm_medium=facebook&utm_source=NSDF+Blog&utm_campaign=Blog

This month, Caregiver Denise shares her thoughts and experiences on  stress  and a few resources she finds helpful while helping her boys live with Epilepsy.
Let’s talk about stress. It’s important to understand what stress is and how it affects your body, to fully understand how important is it to find effective measures to reduce it. Stress is a natural part of life, and believe it or not stress is a necessary part of creativity, learning and survival. Too much stress however, can have a negative effect of your daily life and outcome of our survival if not dealt with effectively. When you are feeling overwhelmed by stress, what your feeling is your body’s natural fight or flight response which releases adrenaline and cortisol. A little bit of stress, often referred to as acute stress can be exciting, and it keeps us alert. Long-term, or what is referred to as chronic stress can have long term effects on our well being.   I recently went to the Dr. because I honestly felt like I was having a heart problem. The Physician explained to me that the amount of stress I was under, compiled by my pre-existing anxiety had placed my body in a constant state of tension. I researched this and found that when you are feeling that fight or flight response in a crisis your body is going through a lot. The cortisol and adrenaline released in your body is speeding up your pulse rate, breathing, blood circulation, muscle tension and glandular function. When a caregiver of someone with Epilepsy has this happen over and over again, eventually the nervous system stays ready to react to a crisis all the time causing the body to stay in a constant state of tension. This state of tension creates a person that tends to react to small stressors the way you would normally to true emergencies. All those hormones that are created in the stress state must be released to bring our bodies back in balance. If we do not work towards reducing stress and releasing this built up tension, it can only lead to emotional burnout and complete exhaustion. The only way to break this cycle is to find ways that work for you to relieve stress. I encourage you to find ways to reduce stress in your lives. Doing this will help us be better caregivers, by having better health and positive long term health outcomes.
There are many forms of stress reduction techniques and I will just touch on a few of them.
~Music and Art Therapy
There are many options in this category! Sometimes just putting on your favorite upbeat CD can make a difference if you dance and sing along! My older child with Epilepsy has recently discovered that Art Therapy works for him. He will sit for hours and paint creating wonderful works of art. I also find it very relaxing to draw and paint.
~Prayer/Meditation
A quiet mind is more important than a positive mind. – Deepak Chopra
Take just 5 minutes a day to be in complete silence, focusing on your body and the effects of stress and learning to relax. This can be achieved in the bath, laying on your back in bed or even while sitting. Start at your feel and pay attention as you move upward focusing on noticing areas of tension and calming them. Once your body is calm and relaxed pray or focus on the positive things.meditate Think about all the blessings you have and the good that is in your life. Even if it’s just the pretty sky today or the beautiful flower you saw, find something to focus on that is positive and good. A Physician years ago use to tell patents to breathe in and out deeply. As you breathe in say (Peace, Jesus, Higher Power, Joy, Calm whatever you need) IN and as your release that deep breath slowly say (Stress, Anxiety, Tension, Sadness, Pain) whatever you need out OUT. So I often find myself saying Peace IN Stress out as I take deep breaths and so on. Focusing on releasing it seems to help me in a big way, even when I do not have a lot  of time. I find that CD’s that are designed with stress reduction, relaxation and meditation are a good choice for me, such as this one:
~Laugh
Laughter is a natural stress reducer that  is very effective at reducing stress. Watch funny videos, a funny movie and seriously just Laugh Out Loud!
~Exercise
Something we all may not want to do or think we have time for, but we all need exercise! Go for a walk, even if it is just up and down the driveway, get moving! Can’t go outside today? Stretch and touch those cute toes! Turn on the music and dance the stress away. Exercise will release those feel good chemicals to help combat those stress feelings.
~Practice Gratitude
When we make a point to keep track of Good, Positive and Beautiful things it helps us to not stay so focused on the Negative, Painful, Stressful things in our lives. I find that when I start to feel overwhelmed, if I start looking for simple little positives it helps combat the stress and overwhelming feelings. Such as, “Brett had a terrible seizure today, but he recovered well and his postictal is not as overwhelming as it could be.”
~ Volunteer 
What is available in your community or online to help you live your passion while helping others? Find it and ask about volunteer opportunities. Even as little as 1 hour a week can decrease your stress, help others, and increase your health. Volunteering to do that which you love decreases your stress and increases those feel good hormones instantly! I know from experience as I volunteer my time to reduce stress and feel good at National Seizure Disorders Foundation as Board Member and Treasurer. Leave a comment below to ask about our opportunities.
Life as a caregiver can be tremendously stressful  as we endure this roller coaster ride of good and bad days. Often it seems like we may never have a “normal” life again. I hope that today you will focus on ways to combat the stress that comes with this journey. I also hope that if you are feeling overwhelmed and need help you will reach out to those around you. Find other parents who are on the same ride and somehow it doesn’t feel so lonely. Just knowing that there are others experiencing the same stress helps greatly.
Denise MarshAbout the Author: Denise is a homeschooling mother of six who lives in Alabama. Denise’s two youngest sons, Brynn and Brett have refractory Epilepsy.  Denise volunteers her time and energy as National Seizure Disorders Foundation Board Member and Treasurer. Enjoy the monthly feature articles from NSDF Caregivers Corner written by Denise. 


http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner-2/?utm_medium=facebook&utm_source=NSDF+Blog&utm_campaign=Blog

Friday, December 12, 2014

Year end quick wrap up!

I didn't realize it had been so long since I have posted an update. October, November and December have proven to be just as much a Epilepsy Roller Coaster as the prior months... well years. We have seen Brynn do so much better and have just a few small                                                   bumps of loss in seizure control.

All in all, I would still say that he is better than he has been in years. Brett on the other hand seems to gain some control and in a matter of hours, days or weeks crashes again. Brynn and Brett will see a geneticist in January.                                        We are hoping that we will have some answers from that appointment instead of more questions, like the previous Epilepsy Panel. The Geneticist hopefully can answer some of  
the questions about the two unknown mutations that came back on Brett's previous Panel. (varients of unknown signifigance are 1.) heterozygous for late onset multiple carboxylase def w/biotinidase def p.G1n88Glu 2.) lysomsomal storage disease ds aspartylglucosaminuria p.Leu146Val)
The new Neuro does believe that they have a male dominant, female carried rare genetic female carried epilepsy syndrome similar to LGS.
   We returned to the Seizure clinic this 
month, and were referred to the seating clinic to order a bath chair. I brought Brett's wheelchair to ask for a seat belt to be ordered. What a blessing they had one and started installing it right then! Unfortunately, Brett went into a Complex Partial seizure while it was being installed. With no break in between after several minutes the Complex Partial generalized into a Tonic Clonic.
911 was called after about 5 or so minutes. The nurse estimated that the Tonic Clonic seizure lasted about 8 minutes. He went to a postictal like state for about two minutes and then his eyes popped open into another seizure he went. Second Complex Partial that also went into a Tonic Clonic. It took an hour before Brett arrived in postictal state by ambulance to the ER. ER was over filled and the hall was being used to treat immediate cases. We
stayed there until he slept it off and awakened hungry and ready to go home. I got a prescription from the ER Dr. for Nasal Versed after he asked why I didn't have his Diastat on me. I explained that I usually do not carry Diastat when I am fairly close to home, we really do not leave the house often anyway and when we do we are going to the Dr. anyway!
In the off chance we do get to take Brett to a store or restaurant he is 10, weighs close to 100 pounds and I would rather call 911 than try to get his pants down and administer Diastat in that situation in front of so many people. In hindsight, I feel terribly guilty that I did not have any emergency medication on me. I had no idea that it could take so long for Paramedics to get to us in this big huge city either. My thinking will change, once
again and I am sure my anxiety will not get any better either about leaving home with Brett and without Brett. We were only about 10 minutes from home and it was just a quick appointment, but once again I am reminded that Epilepsy does not have rules. When we left the house he looked great, no clue that a seizure was coming until it was happening.
I certainly didn't expect him to be in status in a matter of minutes like he was. I went ahead and placed the Seizure Alert Dog Medication Inside bag that will be clipped to Blue's vest in my purse with preloaded Nasal Versed and Diastat and will not be leaving home with Brett without it again. Brett will be getting the bath chair and his wheelchair now has a seat belt. We were referred to an Easter
Seals program to try to locate a better wheelchair after the physical therapist saw him actually have a seizure in the chair it became evident that he needs a chair that we can recline the back in the even of a seizure for his safety. If we can't locate a used one he will order him a new one. All the children are excited about Hanukkah coming! Hope to update soon, if not I will I will update after the Geneticist appointment. We should have some photos in January of the boys and Blue! She is coming for a practice training visit with Brynn and Brett! Of course we are all really excited about this! Blue's balance is likely sitting around the $900 mark! We are getting so close to getting her paid! God is good, even in the midst of this Epilepsy battle, God is so good and has never left our sides! 
 I have taken on new responsibility at National Seizure Disorders Foundation as the Treasurer and started writing Caregivers Corner as well.  http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner/  
It has been a blessing to be a part of NSDF and I expect really great things to come in the future.   

Thursday, October 16, 2014

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!


Brett's current common Seizure Type... 


Just because Brett is so darn cute! :)