Spinning Wheels

IMG_6778We have been in AL for almost two years now. Frightening thought, considering that I had anticipated better care for the boys here and ended up with less than they had before. To date, they have seen 4 Pediatric Neurologist, 1 Geneticist and still just spinning our wheels as far as the “why.” Currently, we are traveling longer than we were from MS to New Orleans just to see a Pediatric Neurologist who at least seems to  have the ability to think outside the box. I still would never leave MS given the chance to do that over!
I don’t think anything could have prepared me for this journey with Brett, even Brynn’s journey was so different, looking back seems less stressful and complicated in comparison. IMG_6885
Tonight, Brett had a mild seizure as he walked down the hall towards his room for bed. I stood there talking to him and when he was ready we proceeded to his room. I read their Warrior Devotional, said our prayers, kissed both my warrior boys on the cheek and headed out the room. Brett’s headphones are broken, so he wanted to listen to his music on his iPod dock. Simple, but unacceptable to Brynn who had to take an Ativan minutes before because he was slurring speech, racing thoughts just spouting out and his left arm was jerking in those familiar myoclonic twitches, all signs it was not going to be a good night. So argue they did and Brynn took the iPod from Brett and slung it to the bottom of the bed. Abigail calls out “Brett’s having a seizure.” Indeed, he is, so I get the magnet and swipe.
He IMG_6721seems to come around and I assume that’s all. I explain to Brynn that his headphones are broken and it would be nice if he could listen to K-Love to go to sleep. I find K-Love, wait for the play button and for it to load and ahhh, a lovely song is playing. All this time Brett has been tummy down on his bed with his chin on his arm on top the wood low headboard. I say “Brett, scoot down and lay right.” To which he answers, “Who’s Brett?” I ask him if he is okay and he looks at me, and I know by the look he has no clue who I am. So I find myself standing there thinking, how wrong it is that this is “normal” in my world. Nothing could have prepared me for the heart-shattering pain and fear I felt the first time I heard those words, yet here I am staring at my precious blue-eyed baby boy who just said them and I didn’t feel panic. As with any other part of our IMG_6648Epilepsy journey, and many others like us, I was not informed or prepared to ever hear those words. So many things that have happened have been exactly the same. I can’t tell you how many times I have stayed up and researched all  night something that happened just trying to make sense of it. I never heard about SUDEP until I read about Danny on Dannydid.com.  Ms. Willa who did Brynn’s first EEG told me, “It’s okay Momma, people don’t die from seizures.” The very first Pediatric Neurologist Brynn saw after his first known Tonic Clonic while sleeping said, “People don’t have seizures while sleeping, he won’t have another at night it will be during the day, if he has another, everyone is allowed one.” The second Pediatric Neurologist said, “His Cognitive challenges and seizures are not related.” I never heard nocturnal seizures, even though Brynn had his first Tonic Clonic seizure while sleeping until I researched it. Thankfully, we went for a second opinion and stayed there for a few years, long enough to be educated, eventually get Brett diagnosed as well. I have been known to say that no one gave me a book, a pamphlet or even some printouts that could explain most of what we have had to get blindsided with. I imagine it would be frightening to tell a parent, one day your child may not know their own name, how old they are and they may become afraid of you because they do not know who you are. I still feel as though if I had the proper knowledge it may have been less scary and could have saved me hours researching the medical literature available online! Hopefully, we will make some progress soon. I feel it’s important to get those answers, the why my two boys have this obviously genetic seizure disorder and where do we go from here would be nice too!
So here’s to you dear parent with a newly diagnosed with epilepsy child. 
1. There are at least a thousand things that could happen and very few are positive things. The most important advice I can give is to take it one day at a time and keep a really good seizure journal describing every detail until you figure out what type they are.
2. Epilepsy can damage the brain, but most seizures do not. If you feel that your child is showing signs of regression find a psychologist or neuropsychologist and get testing done. This will not only  give you a reference point should true regression occur, but it will likely also help you understand and strengths and weaknesses your child has.
3. Changes are going to happen. It’s rare to come across a parent who says that their child always has the same exact seizures at the same exact times. For most parents this can be the most frustrating part. You can never know when it will happen and this can cause a lot of stress and anxiety for a parent if the seizures become or remain intractable. This is also known to cause stress on marriage and friendships. It is imperative that you have a support system in place. Know the symptoms of Caregiver burnout, especially if you have other stressors in your family dynamics:
http://www.helpguide.org/articles/stress/caregiving-stress-and-burnout.htm
4. Please, I cannot stress enough how important it is to learn the basics of seizure types and their symptoms.  I posted about this not long ago:
https://epilepsywarriorboys.com/2016/04/04/what-does-epilepsy-look-like-anyway/
5. Find other parents! There are several groups on facebook, you can find them by searching on facebook for “Child Epilepsy,” or similar terms and you may even have a local support group. Contact your local or State Epilepsy Foundation.
6. Know when to seek a Level 3/4 Epilepsy Center. The guidelines are here:
http://www.naec-epilepsy.org/spec_care/guidelines.htm
and to locate one use this link:
http://www.naec-epilepsy.org/find.htm

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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! 🙂

New Year off to a good start!



I am really liking this year so far!
Brynn’s 8 week Depakene wean in COMPLETE! Only noticed an increase in small seizures and some increased daytime tiredness, which seems to be leveling off now. We are enjoying his stability seizure wise, with only 1-3 larger seizures a week. Not sure if it is the VNS or the Zonegran increase that is making it possible, I guess time will tell! Even the larger seizures he seems to bounce back from easier and have less effects afterwards. We will go back to Children‘s hospital next week for his VNS increase. I do
feel so much more relaxed with the last several weeks feeling so positive for Brynn. I worry when he sleeps 12-14 hours a day, but if he is not having a seizure increase I can see, I remind myself that he may just need that extra sleep. Will still discuss it with the Neurologist as we know he has seizures we cannot see also. Excited to get our tax refund in a few weeks to help fund fresh new materials for home school. I purchased McGuffy’s Readers for Brynn and he seems to like them so far. A change from the Merrill Readers he has used for so long. I hope that we can bring him to at least the 1.5 level in Reading with them. We have pulled Sequential Spelling from our curriculum as well. It started with his Neuro stating in the office that if he needs assistance in any way to answer the questions (additional statements or questions) it is not counted as right. He couldn‘t answer where he was (Children’s Hospital), What city he was in (New Orleans), What day it was or even what Month we were in. We had talked about going to the appointment on Tuesday, in New Orleans at Children‘s for weeks. He writes the month and day everyday in his home school. I was kind of upset at first thinking, but it’s not his fault that he needs reminders or hints. It’s just the way his brain works, he has to have something to tie things together. He knows New Orleans is where the Super Dome is and he knows Children’s is the Hospital he goes to. After the initial shock that he couldn’t answer, I was upset. I was upset because it got me thinking, well if he can only spell “should” if you give clues (Should, would, could-U should know this) then does he really know how to spell should? If you have to say anything to get the right answer, is it right? My gut ached as I realized, no it’s not. It feels better to think it is, but in the real world it’s wrong. If after 2+ years of giving those reminders in the AVKO Sequential Spelling he still cannot spell those words without me sounding them out for him and giving hints, I must conclude that he has not been successful with it. So we started an old Jones Spelling book. He will be given three words every Monday to dictate sentences for. I will write the sentences and he will copy and read them a few times a day. On Friday he will be given the sentences and be asked to  write them. It’s his sentences, that he made up, so he will be connected to them. Hopefully, this will give better results than spelling 25 words a day has. Brett (8) is Reading at a 3rd grade level, so he will begin to use Alpha Omega LifePacs this year. He is confident and able to work independently, which will allow more time for me to work one on one with Brynn. Abigail will be working in Pre-K to keep her busy! 🙂 I will be buying Brynn lots of work books focused heavily on inferencing, Context Clues, Writing, Punctuation and Thinking Skills. After discussing things with a teacher friend of mine, she helped me realize the reality that he is 13, and he just may never read above a first grade level. I knew this before, but I thought if we worked hard enough he would advance forward over time. He has stayed at this same exact level for almost two years now. So at this point we need to focus on fine tuning the skills that he has attained as we add more, hoping that he will retain them. Deep down inside I am a bit excited to see if this lower seizure baseline will stay as it certainly will help his cognitive function. I will be asking about Neuropsychological testing again at this visit. As it is important to know what if any impact the past seizures have had on his overall ability. 
 A real beautiful person, the swing lady I talked about before, is sending the boys and Abigail $100 gift cards to spend on clothing. What a blessing! She is also giving a $200 gift card for household stuff. I think I see a new set of pots in my future! 🙂

We are definitely more at peace here in MS, the air is cleaner and our minds are too! I am learning to trust in our Abba Father and lean on Him for understanding instead of fighting through all the details myself, trying to figure it all out. Learning too, that we don’t have to understand every single thing, we just have to trust Him and His will in all things and know that it will all work out for His Glory. I have done all I can do, now I will stand and trust Him! He who began a good work in me, will be faithful to complete it!  ~Denise
 
   

Surgery & all moved in, back to MS!!


Depart from evil, and do good; seek peace, and pursue it. (Psalms 34:14)

 
Whew, what a ride!  

Look at that smile! 🙂 Day 3 after surgery.
Creek…

The children & I are settling in, back in.. the Mississippi woods!                 What an adventure it has been! Packing for weeks, Brynn’s surgery and two U-Hauls later and here we are! Was crying out for Shalom in the home for a very long time in LA, well we got it! There is even a beautiful creek along side the rental property. What a gorgeous view! Brynn has had so much fun exploring and is looking forward to many days on the creek once he is healed all up! Love the peace we are feeling… absolutely wonderful! Who doesn‘t move to another state and have a few hiccups… I am just glad that the move is complete, well almost. There are still a few things in LA that we have to get here to MS.

In Recovery…

On Oct. 25th Brynnon had the VNS Implant  Surgery. The surgery went well, no complications during surgery. After surgery, well things could have been better. He had a difficult time waking up, had a seizure upon waking and threw up until just before midnight. After that, things have gone uphill. He is healing well, feeling good... Incisions are looking good so far, and he is eating well too!

http://old.epilepsyfoundation.org/about/treatment/vns/vnssurgery.cfm#.UJH_vIUhxq4
 
The children are having fun, getting a break from major Home School work last week and this one. We will prayerfully be back on a better schedule next week, these past few weeks have been so busy and rough! Most of the unpacking is complete, pictures are up… and even staying caught up on dishes and laundry! Ah, the PEACE!   

The LORD bless thee, and keep thee:
The LORD make his face shine upon thee, and be gracious unto thee:
The LORD lift up his countenance upon thee, and give thee peace.
And they shall put my name upon the children of Israel; and I will bless them. (Numbers 6:24-27)

 

Seizures are back to the 4 a week (30 sec. or greater) baseline, mostly Complex Partial, some Tonic and a few Tonic Clonic… Praying that this VNS will help him, but fully aware that this is going to take some time, lots of time if it does help before we see it. Starting to see the little ones return causing the absence type and the little cognitive ones that cause stuttering and slurs when he is talking… The Zonegran increase really helped those, not sure if the return is due to the stress on his body from surgery or if the increase of Zonegran is wearing off. Not too worried, as long as the bigger ones stay at 4 or less a week. Least that is tolerable and so much better than the seizure monster we saw in August… 

\0/ How beautiful upon the mountains are the feet of him that bringeth good tidings, that publisheth peace; \0/ that bringeth good tidings of good, \0/ that publisheth salvation; \0/ that saith unto Zion, \0/ Thy God reigneth! \0/ Thy watchmen shall lift up the voice; \0/ with the voice together shall they sing: \0/ for they shall see eye to eye, when the LORD shall bring again Zion. \0/ Break forth into joy, sing together, ye waste places of Jerusalem: for the LORD hath comforted his people, he hath redeemed Jerusalem. \0/ The LORD hath made bare his holy arm in the eyes of all the nations; and all the ends of the earth shall see the salvation of our God. Depart ye, depart ye, go ye out from thence, touch no unclean [thing]; go ye out of the midst of her; be ye clean, that bear the vessels of the LORD. (Isaiah 52:7-11)


  Don’t Forget!!
NOVEMBER IS EPILEPSY AWARENESS MONTH…