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

Epilepsy Awareness Day, March 26th!

It's Almost Time!!!
Epilepsy Awareness Day is March 26th!!

What will YOU do to raise awareness?


  We went to our Children's Appointment to meet with the Neurosurgeon who will do Brett's VNS implant surgery this week. We brought Purple Bags with Purple Goodies (Lavender Awareness Ribbon Butter-mints, Wings of Hope Purple Ribbon Pens, White Purple Ribbon Grip Pens, Wings of Hope Purple Ribbon Calendar Cards)  to the Office Staff, our Neuro, the first Neuro Brett saw there, the Epileptologist who does the Video EEG testing and our most favorite Nurse ever who is so great and works hard for Brynn and Brett. I had a really cute Dr. and Nurse character made for our Neuro & Epilepsy Nurse. They are wonderful and are always there for us, always respond when we are in crisis, have a question or a need. They both go above and beyond what we could ever have imagined in care for our Epilepsy Warrior Boys, Brynn and Brett. The boys signed them and I wrote a card of thanks. We will be going out asking businesses to let us put up Brynn and Brett's photos and giving out pens next week. I thought I would write about Epilepsy, as if I do not write enough about it!

Did you know that 1 in 26 people will develop Epilepsy in their lifetime?Did you know that there are many different types of seizures. Symptoms can vary from disruption of the senses lasting seconds, to short periods of unconsciousness to the full convulsions most people associate with Epilepsy.

Did you know that Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined? Historically, epilepsy research has been under-funded.  Each year NIH spends $30 billion of medical research, but only ½ of  1% is spent on epilepsy.

Did you know Sudden Unexpected Death in Epilepsy (SUDEP) accounts for 34% of all sudden deaths in children?

Did you know Only in about 30% of cases is the cause of epilepsy determined. The other 70% remain unanswered, in what is referred to as idiopathic epilepsy?Did you know about 150,000 new cases of epilepsy will be diagnosed in the United States each year?Did you know early in the 19th century, people with severe epilepsy were cared for in asylums?

Did you know estimates are that up to 50,000 deaths occur annually in the U.S. from status epilepticus, Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes?

Did you know an estimated 3 million Americans and 65 million people worldwide currently live with epilepsy?Did you know the Greek philosopher Hippocrates was the first person to think that epilepsy starts in the brain (460-377 BC)?Did you know With the right AEDs, up to 70% of people with epilepsy could have their seizures controlled, leaving 30% uncontrollable/medically refractory?

Did you know in America, Epilepsy is as common as Breast Cancer, and takes as many lives?Did you know Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors?

Did you know the mortality rate among people with Epilepsy is two to three times higher than the general population?
Risk of sudden death among those with Epilepsy is twenty-four times greater.


Did you know about 30% of those diagnosed with Epilepsy are children?

Now that you know... We hope you will wear Purple or Lavender this March 26th and tell people about Epilepsy. Not just for Brynn and Brett, but for the 65 million people worldwide living with Epilepsy.
(((((hugs))))
~Denise, Brynn and Brett

Endurance

Waiting... I never really enjoyed waiting. I admit, I use to be better at it too. I remember people use to say "Denise, you have the patience of a saint." Just words, but I must have been given a great gift of patience. I have to work harder now at Patience, because I feel I lack something, Endurance...  I get anxious now waiting. I feel like I do not have the strength to wait things out.

When you have a child with refractory epilepsy, so much waiting is required. No matter how much patience you think you have, watching your child have a seizure will make you feel like you do not have the endurance to go on...
You start this medicine with so much hope that it will make the seizures stop. It does, for a while and another is added when things get out of control...               On and on this process goes...

 Finally one day the Dr. says, this may be the best we get. We did the VNS surgery for this reason. The medications tend to help Brynn honeymoon for a time, but once again his body just gets use to it or learns how to seize despite the medication. So, we did the surgery with the hope that he would do better than the one third chance of a 50% reduction in seizures.... and we wait... and wait... Did you know that in training for endurance, you could end up with a negative impact on strength if you do not also practice resistance training. Waiting in faith is like training and without prayer we too would end up weak. The boys and I pray every night for Brynn and all the children and adults we know that have seizures to not have seizures anymore. We praise Abba Father that one of them has stopped having seizures and a few others improved! This has encouraged our faith once again and helped me to become stronger... and continue to endure! We weaned one medication and started a new medicine... and waited some more.  And.... Once again, we have a honeymoon! Yes, Brynn is back to baseline and better with the Onfi! He is not having Tonic Clonic the moment and the Tonics and Complex Partials are so much less traumatic! This honeymoon started out great, fizzed out and then came back full force it seems! We are so excited and enjoying this time! We started fund raising to get Brynn a SAMi Seizure Alert Monitor Camera System. Brynn and Brett always being find of Survival Bracelets wanted to make them. So we bought the 550 Parachute cord in fun colors and got to learning! Brynn and Brett like to try, but they haven't mastered the art of making

them... So at present I have made oh about 70 of them!  Saving and Hope to buy him a Recumbent bike soon too! After he had the seizure while riding the bicycle he has been heartbroken that the neuro said no more bike riding. He has only been able to ride his 4-wheeler once so far. The recumbent bike sits low to the ground, has three wheels and in the event he has a seizure while riding at least he will be close to the ground and not fall over... We even had a Lemonade Stand for the first time last Sunday! The boys had so much fun and raised $20 for the SAMi fund!!

So here we are again, waiting... and being patient... Knowing ever still that Abba Father is in complete control... It will be as it will be, in HIS time and only then... Not the easy fun we had hoped for, but you know... at least we are having some fun along the way!!
Ah, indeed...
The longer you wait the better it is!!

Don't Ever Doubt It,
Abba Father Knows ALL!!

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...