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! :)

Brett's Surgery complete and other ramblings!

Brett finally had his VNS implant surgery on 5/12. The original surgery was postponed due to both Brynn and Brett being infected with Mycoplasma (Walking Pneumonia), which aggravated his asthma. So 6 weeks was needed before he could be put to sleep for his

lungs to heal. Surgery went well, other than his heart rate dropping when it was tested, no problems. It was tested twice after the wire was moved and assumed it was the wire position so it got to stay! His VNS, like Brynn's was left on at lowest setting when they closed and he will return to get checked by neurosurgeon next week,

as well as both boys get to visit with their most favorite Neuro Dr. D. Today is Day 8 and his incisions look great! He did have some possible pus at the chest incision, as well as an ear infection last week, so he has been on antibiotics since Thursday. We are anxious, of course, to see how this will help his seizures.

 At present, Brett is having clusters a few times a

week, with days in between with some night time seizures now and again or none at all. This is an improvement from the everyday seizures we saw over the past few months. We are learning to be thankful for every little thing!

“Prayer is not overcoming God’s reluctance, but laying hold of His willingness.” ~Martin Luther

 Brynn, however, is holding strong with the greatest seizure freedom he has ever had. Only having small seizures most nights and daytime he is having only really small "lost moments" not obvious bigger complex partials like before. VNS? Onfi? Med combo?  All of the above?
Who knows,

but we are very happy with his current condition!  He is having improvements in his general cognition, and we will likely talk about weaning one of his medications this neuro visit. Pretty exciting stuff! 

  We have a lot of changes
coming over the next few
weeks, many new experiences... The possibilities are endless! We are all excited!! :) More on that later! ~Denise

"So we are always of good courage. We know that while we are at home in the body we are away from the Lord, for we walk by faith, not by sight." ~2 Corinthians 5:6-7

My thoughts on Suffering... and an update!

Suffering is to one what normal is to another is to what devastation is to yet another. Suffering is part of our human existence. There is no way to avoid it and not one of us will escape it. We have all done it and we will do it again. The only difference in us humans is how we suffer, and what we do when we feel the effects of suffering.
"Although the world is full of suffering, it is full also of the overcoming of it." ~Helen Keller

We are a spoiled generation

of humanity that carries expensive cell phones, has our nails done, goes to the movies but somehow fall short and cannot afford the electric bill. We are spoiled to the point that we feel the least bit of doing without is suffering. We expect to be able to do what we want, when we want it and expect to be rescued from "suffering" when that suffering is just consequences for our actions. No, I am talking about true suffering...

The loss of a Loved One, Persecution for beliefs, Being Bullied, Not having food in your home or basic shelter, Painful Disease... The list goes on... Have you ever read the story of Job? That is "Suffering."
There are benefits of suffering too. Paul's thorn in the flesh (2 Cor. 12:7) kept him from becoming proud. Knowing that he had a thorn in the flesh and still kept his faith even though it is not believed that it was ever healed sure makes a great example for me. So we who suffer and continue to fight the good fight and walk in faith can be an example to others. Not only an example but because we have suffered we too can join the ranks of all those suffering and comfort those who suffer. 2 Corinthians 1:3 Blessed be God, even the Father of our

Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4 Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.5 For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ.
There are many examples in scripture of suffering that was brought on by transgression. Much easier to not think about, but often we are suffering because we have sinned against our Father and we are simply experiencing the consequences. Like David, we too must face consequences for our actions. For not one is without sin and we all shall reap what we sow. I am not talking about that kind of suffering here either.

So I encourage you, if you are suffering pain, trial and tribulation today, remember...

For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. Romans 8:18

On a more personal note....



as I know many follow Brynnon's story here... He is stable at the moment, staying for the most part at his baseline. Since we went on July 15th to have it increased,  he has developed a side effect of nausea and pain in the upper stomach area from the VNS and he may have to go back to have the settings changed to see if it will alleviate this side effect. We are waiting on insurance approval to try a stimulant to see if it will possibly help his cognitive disorder. We will try it at home and see if we notice improvement and at his next visit he will be dosed up so that when he has a Cognitive Evaluation they will record any changes from the last one in July. 
I wasn't really excited about the stimulant at first, but was willing to try when his Neurologist sugested that it may help him retain information in his learning  journey and perhaps even help his slow processing. After researching it and seeing that it is used in lower IQ children and can possibly have a good effect on him. I feel that since he has stayed around his baseline (his normal 4-6 seizures a week) for the most part for several weeks now, and since he is 13, still only Reading at a 1st grade level and overall cognitively functioning at a 6-9 year old level... it is certainly worth a try. I have to admit I have since gotten a little excited at the possibilities and figure anything is worth a try. All in all, we are having a very nice relaxed Home Schooling Summer.... 
Sorry I haven't updated lately...
    We have had a lot going on...
    Will update more soon...
    or perhaps a bit later!

   ~Denise 
"I do not ask You to take away my suffering;
I do not even want to know why I suffer;
but only this, my God....
Do I suffer for Your sake?"
~Levi Yitzhok of Berditchev

Children's New Orleans Update

  It was a great trip to New Orleans for the Children's Hospital appointment last week. Spent some time Thursday with Family and Brian's first boss and our Church of the Nazarene friend Leo, on Friday after the appointment. One of these trips we need to save up and actually visit the Zoo or the Aquarium! Abigail did great until she realized we were sleeping in the Hotel. She said she wanted to go home! It was nice to get away and spend time together the day before and nice after to visit too. Brynnon's appointment went well. Doctor has upped the Zonegran dose to 300 Mgs. and requested the Name Brand as being Medically Necessary. Of course the insurance wants us to finish the Generic off first. Once he is on the increased dose and the Doctor has lab results back the plan is to move up on the Depakene next, he is already taking 1250 Mgs. a day. I am a bit nervous about that decision, as his blood levels a few months back were 96 for the Depakene... but it does seem to be the best to keep the extended Tonic Clonics at bay. The Tonic Clonic's he is having are quick at the moment, and we don't want that to change, but he is still averaging 4-6 clear obvious seizures a week... Not to mention the questionable Seizures or the ones I do not exactly know how to classify. I was not surprised when I read his EEG report and saw that there were 2 events each night that looked like clear seizures to the Epileptologist that did not read as seizures on the EEG. EEG did confirm he does have Seizures with no clinical signs, as the Neuropsychologist questioned also. I took home a copy of the report, wish I knew what it all meant.   

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." (Isaiah 41:10)

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Abnormal Electroencephalogram due to the presence of:
1. Persistent focal slowing over left occiput.
2. Intermittent to focal slowing over the left centroparietal head region.
3. Intermittent bursty slowing over the left anterior quadrant in sleep.
4. Frequent epileptiform discharges over the right centrotemporal head region.
5. Infrequent epileptiform discharges embedded in the left centrparietal slowing.
6. Infrequent epileptiform spikes over the left occiput.
7. Three electroclinical seizures that apparently arise from the left anterior quadrant.

Clinical Correlation: These findings are consistent with multifocal  areas of potentially epileptogenic cerebral dysfunction including an area of persistent slowing raising the question of underlying structural abnormalities in the occipital head region.... 

 At the visit the Neurologist mentioned the term "Epileptic Encephalopathy." He did say it's not Dravet when I asked about Genetic Testing, which I knew from my research. He said we will increase the Depakene and Zonegran one at a time as they are helping, keeping the Trazadone and Klonopin where they are. He wants to bring him in when he gets to a new baseline in seizure control or lack of and do a better MRI with finer cuts to look at the area in the left back that seems to be a hot spot. 

"Delight yourself also in the Lord, and He shall give you the desires of your heart." Psalm 37:4 

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 We came back home Friday night and have had friends from North Carolina here since Sunday. We have had a wonderful week. The boys got to go fishing on Eric's boat, they had a blast! Caught some Catfish, kept some to give to the non-Kosher eating neighbors! Brandon and Eric got to go to the Bay and into the Gulf of Mexico today. Fishing is planned for all the men and boys tomorrow afternoon also. Abigail, Debbie and I will be going to have Dinner and perhaps we can find something else to get into too! Eric announced this evening that he is giving us his boat and trailer. What a blessing! I suppose if you are stuck in Cajun Land surrounded by water you really do need a boat! I see fishing in the future... Going to be focusing on making fun memories, especially now. It's all any of us can do really... Make the best out of what you have, remembering that each day is a beautiful gift given from our Creator to do with it the best you can. There are certainly more smiles around since we got Brynnon his 4-wheeler. I know the boat will bring even more. Such a blessing!! So that's where we are... have no idea where we are going... but I do know one thing for certain... Our Father is with us...

This I recall to my mind, therefore have I hope. It is of the LORD's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness.  The LORD is my portion, saith my soul; therefore will I hope in him. The LORD is good unto them that wait for him, to the soul that seeketh him. (Lamentations 3:21-25)

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A Smile as Big as the Moon...

Finally got to discuss the movie with Brynn, "A Smile as Big as the Moon." I watched it first to make sure it was something I thought Brynn should watch.  Brynn, Brett and their friend that stayed last weekend watched it Saturday night. Brynn has not been to public school yet, so I found the movie to be a good way to show him both sides of what he could possibly face. He has known for some time it's harder for him to learn. He has heard the Doctors say cognitive disorder, intellectual disability, regression, slow, special needs... but in general he has been blessed and never really been made fun of. He has been embarrassed but not made fun of by other children. Due to the extended seizures we have had to reteach much of what was taught and I realize that he really needs therapies that I just cannot provide him. It is very frustrating to teach him and watch that spark when he "gets" it and watch that spark fade away with a cluster of seizures or worse an extended one. So with this in mind I watched the movie and let them watch. I observed the reactions to the different aspects of it. Sunday evening after the company left, I asked Brynn what he thought about the movie. He responded by saying "I don't want to be special." Of course I asked him why? He said "Because special kids get made fun of and I don't want to be made fun of." Fair enough... I asked Brynn which child in the movie he thought was more like him... He identified himself with the Down Syndrome child because he was funny and liked to hug. He also identified himself with the Autistic child because he was "big." I explained that when he goes to the public school he will not stay the whole day, but will go for therapies like speech and language. So yesterday I got my brain all prepared and made the call. I had already spoken with a Lawyer and verified that Brynnon does qualify for services in LA a few weeks ago. So, I spoke to a school counselor, the Special Education Department and the woman that does the Home Bound services... The conclusion... They have never, nor do they intend to service a "Home Schooled" child. Well... Thank you for the reminder why we should all avoid the Public School like the plague... Still considering calling a Civil Rights or Disability Attorney, as under the law he does qualify as we registered under the Private School option in the State... However, at this point I think the risk to his self confidence outweigh the benefits he would receive from getting services through the Public School.

  I didn't say it because I was scared to... but Brynnon went 8 days recently seizure free! Yeah, silly I know but it seemed like every time I would proclaim 3 days no seizures another would come that night or the next. So 8 days is his new record, since his last extended tonic clonic! The month of January brought 19 seizures that I logged. I logged the ones we saw, except for the really tiny ones that are so quick they are easily missed anyway. I would definitely say he has reached a new improved "normal" concerning his seizures. He is making progress again in his AVKO Sequential Spelling as well as his Time4Learning.com work. The iPad has helped him to have fun and learn at the same time. Hard as I try to get him to have fun with other learning programs, he will spend hours working the puzzles on his iPad. Didn't take long to figure out that he needed some modifications made to his iPad. You tube was disabled, I disabled the browser and added Mobicip for safe internet browsing. Added parental controls and a password too. No sense handing the world wide web to a 12 year old disabled or not! :) 

 Brett is still having those "events" and the plan is still to ask Brynnon's Neurologist what he would recommend I do next. I think most people would get that you cannot diagnose seizures that happen while sleeping, until you do an EEG while sleeping. Makes perfect sense to me, but the Pediatrician... Not so much! Oh well, we needed to see more Pediatricians anyway... There are so many more left near this town.

 Time marches on and usually brings lots of changes with it. Expecting this year to bring many changes, all for the good. I am pretty excited about the prospects for a better life actually... I want us all one day to smile as big as the moon! Speaking of time, I started writing this blog Monday... it's now Friday... so I suppose I will go ahead and publish it!  

Have a Great Weekend Y'all!! Till next time here are some pics of the boys enjoying putting the new bunk bed set up...

~Denise 

 New Camera system with night vision! :) See Abigail climbing into Brett's bottom bunk? LOL

Neuropsychological Report

 Well... I finally have it. In black and white, more clues to Brynnon's strange mix if woes and problems. 15 Test later we are given a really broad diagnosis of Cognitive Disorder NOS. When you look that up it appears to be a catch all diagnosis that means something is wrong but we just do not have a name for it or we have not identified it yet. He finds significant attention impairment and executive function. The pattern of scores implicates frontal lobes. Processing Speed and attention/concentration are relative weaknesses. His ability to remain attentive over time is impaired, has trouble filtering distraction & directing attention to a specific target. The test results really do give a good picture of what I see and have seen in Brynnon for many years. He actually had the extended seizure that caused some regression just 3 days after the last day he tested for this result. It was advised to continue  where we are and meet again if there is further regression, otherwise it will not benefit Brynnon to complete further testing until around 18 months to assess where he will be at that time and what progress has been made. At least it is more information to bring on Nov. 1st to the Children's Hospital in New Orleans... Perhaps there we will finally get answers... Prayerfully so.... 
 Tomorrow will be a family BBQ, with cake and ice cream for Brynn and Brett's birthday. I look forward to a nice relaxing day! Until next time be blessed!! ~Denise

Wanted...

  A nice peaceful sleep without worry that my little boys may have a severe seizure while sleeping and not wake up... while your at it, how about some assurance that this is not some rare genetic thing that my Brett has too? Yeah, I know big request... How about a device that will sound off before any kind of seizure? Unlikely, I know... Worse part about it all is there are so many parents enduring the same trials. Some so much worse... I just don't know how to do this one yet. I have overcame so many trials... but this one seems to be taking everything out of me. Maybe it's the fibro, but I feel like I could sleep all day... I just cannot seem to sleep at night... I have done tons of research... all of which has really not helped much but sure does raise more questions! I will be ordering the pulse oximeter, perhaps this will help and give more peace of mind with Brynn while I figure out what's going on with Brett... Oct. 8th can't get here fast enough for Brynnon's neuropsychologist report... Oct. 18th can't get here fast enough for Brynn's Neurologist to explain his 24 hour EEG findings. If all else fails New Orleans on Nov. 1st may have answers... otherwise we will go out of state for answers! I have a feeling we will have to redo the neuropsych testing again, as he has certainly regressed further since his Aug. 25th major seizure...  

24 HOUR EEG

~All wired up and Awake EEG~

 Brynnon is at the Hospital doing the EEG. I stayed with him until 9PM, then Daddy came and stayed with him overnight. I really hope they will give a better diagnosis with this extended EEG. Prayerfully, we will have a diagnosis and better understanding of Brynnon's future by the years end. So here are the pictures of the screen shots I took while he was napping this evening... Next appointment is not until Oct. 6th, with the Neuropsychologist for the results of his testing before the last prolonged seizure. I am not even sure if the results count, as he has regressed further. His regression is severe enough for our neighbor to notice. Of course people that do not spend any time with Brynnon would not be able to see it. People seem to notice when they meet him for the first time if they have a conversation with him. I suppose it may be because he is so big. Speaking of big, his weight has jumped again from 118 on Aug. 25th at the emergency room to 124 yesterday at the hospital.  Brian said he did good last night, at least he had a gentle night! ~Denise