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! 🙂

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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…