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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 $1,000! 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! :)



Thursday, October 2, 2014

Blessings and update on Brynn and Brett


We visited the new neurologist yesterday. My head is still swimming with all the information that we were given in just one visit. Abigail and I went to to the back pretty quickly for her EEG and Brandon, Brynn and Brett waited in the waiting room. Not long after being back there with her, a nurse came to tell me that Brett was having seizures. He apparently had a cluster of Complex Partial seizures.
 I waited for Abigail's EEG to get started good and asked if I could go check on Brett. I found him with several people, nurses and people that worked there. They were sitting next to him, standing by him and talking to him. I later learned that they didn't just sit by him and talk to him. They snapped their fingers and clapped loudly in his face to be sure that he was not conscious. This is important in partial seizure as a Simple Partial you are aware and a
Complex Partial you are not aware. Other than being in the hospital or home, no one had ever assisted us before during a seizure. I am sure it was a good learning experience for all the people that were there and saw it. By the time Abigail's EEG was completed they had put Brett in a wheel chair and brought them to meet us to get weight, measured and talk to the nutritionist. We then gathered in a large room with the Doctor, 4 Nurses, the EEG Tech, Abigail, Brandon, Brynn, Brett and I. Brett was first and it was obvious that he needed some changes since he had the cluster there. We talked about Brett's hospital admission to the EMU for 6 days. I told him that I felt that Dr. made him worse by messing with his medications. He has not been the same since he crashed the night before discharge. He slept 10 hours his last night there. Slept through discharge, including having the wires removed and had to get to the vehicle by wheelchair because he could not walk at all. He slept four hours after on the way home.

He started having a new seizure type after he got home, was having tons of little seizures that would only stop with Ativan and would return. His stomach aura was much worse and he was generally off balance and completely not with us most of the time for a few weeks. In the six weeks since he was discharged he was a lot worse than he was in the six weeks before he went. He really felt that the Lamictal could actually be causing the Topamax to not work
as effectively or that the Lamictal may not be a good drug choice for Brett. So we decided to add Depakote, since Brynn had a good response on it for so long. We talked about how Brynn and Brett respond so well to Benzo's and even how odd it is that Brynn and Brett both tend to not get sleepy after given a Benzo. He asked curiously how Brynn responded after he started Vimpat. I told him I have a video, that Brynn was so awake and alert after starting Vimpat that we were amazed! Turns out that people that respond like they do to Benzos often have the same response from Vimpat. It has to do with brain chemistry and Vimpat is likely going to be really good for Brett like it was for Brynn. 
He even talked about the extreme Keppra rage Brett experienced and said that people with their kind of brain chemistry actually are the ones to usually have that effect from Keppra, just so much hyper aware that it has a very negative impact of their functioning. So right off the bat I got an answer to a question I had pondered so many times! So of course we decided to try adding Vimpat instead of Depakote for Brett and we agreed that Onfi should be next. We talked about Brett's Left eye and how it often kicks out
and gets stuck before and after seizures. He was very educated about what could be the cause of this and he called the eyes bouncing up and down and side to side Nystagmus and said that he also has ataxia. He went in to great detail (a lot of it was over my head) after I came home I did research the words he used and figured it out, Cerebellar Ataxia. I realized after researching that the Nystagmus is actually a symptom of
 it, so is double vision. Boom, another mystery answered! Abigail was next, her EEG was normal and we decided that if I became concerned I could contact him and request a 24 hour or longer study. He felt strongly that whatever we are dealing with is a rare syndrome passed on from me to the boys. He said that the video of Abigail really could be parasomnias. 
I felt that since she was not wetting herself like the boys did and since I had not seen any real evidence of activity while awake I would just keep watching her. Brynn was next, we talked about Brynnon's history and we talked about how Brynnon has been doing so well, having an average of only 1-3 seizures a week is so great for him considering his past history. 
I stressed that I wanted to leave things exactly as they are and he agreed. As we were finishing up with Brynn Brett bounced back a bit from the seizure cluster and started to play, rolling around in the wheel chair. We both smiled and I said, see... now that his postictal phase is almost over you get to see the real Brett! He shook his head and said that is really shocking that he can function so well on that high a dose of Topamax. So all in all, that was the best visit we have had in a long time. My heart is in New Orleans with their prior Neuro, but considering where Brett is on the seizure journey and the 5 hour drive for care... my head says it is safe enough to stick with this one. So, that is what we will do! 
  So after this really neat experience, I must say that is our closest experience to "The Village" that we have ever experienced. I recently read this book by Lowel Evans. I realized as I was reading it that "The Village" is what has been missing in our lives. You know it's sad in this day and time, people rarely take time to call, write or contact people in any way. Even families have so much less contact than previous generations. Epilepsy is a stigmatized, unknown and misunderstood condition to begin with. If you take a family like mine and throw epilepsy in, well you end up feeling like you are all alone!
Since my Mother was murdered in 91', we homeschool and we moved for work so many times our children have missed out on a lot. We haven't really had the "family" like most people do for most of my children's lives. I have six children and I can count on one hand the times that my children have had birthday parties where people attended. I can also count on two fingers how many times the boys were hospitalized and someone visited them. The Village concept is one that people reach out and help each other. Not
necessarily with money but just general support when people are going through hard times or trials. The Village is the community that the character in the story lives in and when he is targeted for having Epilepsy at his job, the village all comes together and helps him not only get through the hard time in his life but they help him feel loved and wanted. You can read about the book and get a copy  here:   http://thevillageiscoming.blogspot.com/

  So, The Village book got me thinking how much it is needed for the Epilepsy Community to reach the outsiders to educate them and the outsiders to reach them to support them. We started seeing some of this concept in our own lives when a friend donated to make Blue's deposit possible. Through the small donations given by a few people we kept the hope.
Through the donation from a Rowan Company of $500 we were amazed! Blue's balance dropped to $2,500 after that generous donation! KONG sending the boys a box filled with goodies for Blue, People sending messages to check on the boys, my sweet friend and her husband praying for the boys and donating, finding out that the Church you use to attend 20 years ago has taken up donations for Blue... All of this is The Village
concept in real life. I can't describe what a blessing it is to know that people want to reach out to Brynn and Brett. I just wanted to say how grateful we are to those that have helped us get closer to getting Blue home! It means so much to Brynn, Brett and our family! She will likely be ready around February, and we believe that the funds will come... that the village will come together and get Blue home!


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~Colossians 3:15-20 - And let the peace of God rule in your hearts, to the which also ye are called in one body; and be ye thankful.  
~Ephesians 1:16-18 - Cease not to give thanks for you, making mention of you in my prayers... 






Saturday, August 9, 2014

Got Patience?


What is patience? 

"The quality of being patient, as 

the bearing of provocation, 

annoyance, misfortune, or pain, 

without complaint, loss of temper, 

irritation, or the like." 

My Momma use to tell me I had the 

patience of a saint... I never really knew 


what she meant, but I sure do now....  

I have had many lessons in patience. I was born graced with more patience than most people I know. Also like most people I know, I find as I get older my patience gets a little thinner.  I have had to practice a lot of patience in my life. I have to admit though, I often feel that I have had more than my fair share of the testing of my patience. I can say for certain that I have grown and learned many lessons from practicing being patient. One of my favorite sayings is, "The longer you wait the better it is." I often use this when speaking to others about patience. I know in my life, the things I have really longed for, really prayed for and anxiously awaited for in anticipation... Those are the things that I really appreciated, really enjoyed and really cherished. These past few months I have seen a glimpse of a few of those things I had been patient for...  Blue, our Seizure Service Dog's name being chosen and at last a dream came true was put in motion. 

A dear friend who I met on Craigslist, of all places, gave a wonderful miraculous gift of $1,000 to get Blue's deposit paid so she could start training! When I think back of how we met and how we became closer than most people I have in my life...
I just have to chuckle and just shake my head in awe of it all. It was after all during the breast cancer scare while pregnant with Abigail that we met.  We actually met for the first time in the hospital parking lot. She had responded to an ad I placed on craigslist looking to buy a baby swing. She had the very swing I wanted and also gave me lots of
burping clothes, a bouncy seat, bibs and other items as well. It was a dream come true, the very "cradle swing" I had oohhed and aahhed over! Over the next few weeks we chatted on facebook and became online friends. Eventually, we exchanged phone numbers and became the greatest "night owl" phone friends ever! I was blessed to have her family
come for a visit recently. Indeed, this was only the second time we actually "saw" each other. Over that four year period we had formed a friendship that was stronger than most of my lifelong friendships. It was as if we had known each other our whole lives... Our entire families gelled together like long lost cousins. It was amazing, to look back and know that this one of a kind friendship has to be a "God thing!" 
Just before her visit Brynn had a seizure that caused him to fall. He injured his knee so I took him to the ER. The ER referred him to an orthopedic surgeon who said he needed an MRI. After a week of trying to figure out how to do this with the VNS, it was determined that he can only have a MRI at Children's Hospital. The VNS has to be turned off for any MRI. His Daddy took him to Children's to see another Orthopedic Surgeon who took better X-Rays and determined that he does have a torn ligament and his kneecap is also out 
of place. He has it braced now and does daily excersises to try to get the kneecap back where it belongs. If it doesn't he will have to have surgery. The week Prior to her visit and the week of her visit the boys had their PET scans and MRI test done. Brett developed Petechiae a day or two after each test was done only on his forearms. I couldn't get answers from the Hospital nurses or Radiology staff and took him to two Doctors seeking answers.
We never did get a definitive answer as to why, except that it may be his med combo causing his capillaries to be weakened and make him prone to bruising. The boys will both go soon for a 5-7 day EMU stay. We hope that we will get some answers from these new test at the new hospital. Brynn has done relatively well the past several months. He has experienced a seizure decline over all, and when he does have them they are generally less dramatic. He is also somewhat stable cognitively, compared to how he has been in the past. We
hope that this will continue! Brett has had a lot less Complex Partial Seizures that spread into his Temporal Lobe causing the extreme euphoria and fear. It is much easier to deal with the seizures when they are not scary for everyone else in the house. We have seen a decrease in daytime seizures overall, but they still tend to cluster when they do appear in
multiples of 2-4 a day. His visual auras/Simple Partials are persistent and no longer seem to respond to the Topamax. We did initially try to wean the Topamax due to Heat Intolerance, but quickly discovered that it caused his vision to become so poor with flipping images/double vision he couldn't really
see at all. After increasing it back, he never fully regained control of that seizure type again for more than a few hours at a time. Just this week we finally were blessed with the amazing gift of love that we have wanted for two years now! The SAMi Monitors are here! 
They were given to the boys through the Chelsea Hutshison Foundation. I donated what we had left of the money raised with bracelet sales. I hope to be able to donate more soon. It is a wonderful foundation that is helping so many children with seizure disorders! I knew within two 
hours of the SAMi's being on that this is a miracle, when it actually alarmed to a Tonic Seizure Brynn had while taking a nap. Such a wonderful feeling of peace, knowing that the SAMi's are watching the boys too while they sleep! Now, back to that patience thing... 

Most people when talking about patience think it just means waiting. It's not really about just
waiting, it is waiting while not exhibiting complaining and showing your frustration with not having what you want NOW. I know full well what Momma was talking about at this point in my life. It is seldom easy to wait for something that you need at this moment and not
get frustrated and complain. Especially when it is something that your child needs, like answers to medical problems or just a matter of being set free from something that is hurting them. In this seizure journey, my patience has been tested almost daily. I recently was thinking about patience and Momma saying I had the patience of a saint. I think I too had fallen prey to the
overwhelming desire to complain about how unfair things are in my life. How unfair it is that the boys have Epilepsy, that medications are not making them seizure free... and that is when I realized that I had become like the children in the wilderness... bickering and complaining... It's very difficult to watch your child have seizures and practice being patient. All too easy to become frustrated with
not getting answers and the solutions to make these seizures stop. It was then that I realized, it's not just waiting... It's waiting knowing that it may never come. It's waiting, believing and hoping that it will come... and knowing that our Father is in control and at the right time, perhaps it too will come! Until then, I will keep practicing being patient and like Abigail... Just keep smiling and singing joyfully, knowing that it will come! When I feel the temptation to become inpatient, I think about the children of Israel. They were right there and bickered and complained so much they just stretched out their time waiting... I am amazed when I think about how far we have come. A year ago, I never would have thought we would have a Seizure Service Dog in training and Two SAMi Monitors! GOD IS GOOD!



Please find is at Facebook.com/EpilepsyWarriorBoys to help being Blue home to help Brynn and Brett fight this Epilepsy Battle...  We do not own or claim to own the song used. The song is Blue Does By: Blue October. It is the inspiration that gave Blue her name! Please help being Blue home!!!! Donations cane be made here:
http://youcaring.com/EpilepsyWarriorBoys

Or for tax exempt donations through our sponsor, NSDF, a  501(c)3 non-profit Here:
http://nationalseizuredisordersfoundation.org/brothers-winning-the-battle-of-seizure-disorder/
*Please be sure to note that the donation is for the "Epilepsy Warrior Boys" and let us know you donated!

Hebrews 6:11-12 And we desire each one of you to show the same earnestness to have the full assurance of hope until the end, so that you may not be sluggish, but imitators of those who through faith and patience inherit the promises.