We are making progress, progress is good!

It's been a while, here I am again catching up! We are pretty excited that the Neurology Clinic we are going to sent us to a Geneticist! He will be researching the two genes that Brett's Epilepsy Panel came back with. He also ordered a Fragile X and CGH+SNP Microarrays. He doesn't think they have Fragile X, but he felt that we should do it just to cover that. The Microarray test may or may not give answers, but it will answer some questions.
The geneticist also feels that whatever we are dealing with is a female carried problem, and all my male children had a 50/50 chance of having it. I suppose only time will tell and it appears that we will wait several weeks to 6 months to get the full test results. YIKES! What is the test? Well, it test for chromosomal imbalances that may be the cause of developmental delay/disability on the boys by looking for any imbalance of genetic material such as additional copies or loss of whole chromosomes or deletions and/or  duplication in segments of chromosomes. The information we gain may have no clinical value as for treatment protocol, but it is possible it could. If nothing comes back the test will act as a baseline, and we will know what it is not. It will be good to have it done even if we get no answers, so at least we can say well it's not _____. I have taken the test with a grain of salt, as I have seen so many parents hope that it would give answers and they were disappointed. I have also seen a few that did get answers from the test, so I still have hope for answers!  It would be a great benefit to have a name for this journey other than Cryptogenic Refractory Epilepsy. Even greater a benefit if we could know for future generations how likely it is that this will be passed on. Brett is still having a hard time,  

since the hospital admission he has not had cluster or big seizure freedom for more than a few days at a time. He seems to consistently do better after it gets dark until bedtime over the last several weeks. We have the Nasal Versed, Diastat and Ativan to use when they get out of hand. Fortunately, I find that the Ativan given soon enough can help him to not need the others. He is handling it well, and I know he is working at understanding his seizure disorder.  

He knows when his body needs rest and does not have to be told to sleep, he just lays down and sleeps when the "seizurish" feeling hits him. This is a wonderful accomplishment because resting is the first defence against clusters for him it seems. We purchased an awesome Purple Wheelchair for him from a kind seller on ebay. He let me trade a CARE bracelet I had for sale for the wheelchair and I paid the shipping. It is an Invacare Solara Tilt in Space model. It's a bit big for

Brett and we have no way at the moment of transporting it. The idea came about when Brett went into status at the physical therapy office and having the Tonic Clonic seizure in the standard chair we saw how dangerous that was. What we need is a chair that can be adjusted when seizures happen to lean him back and keep him safe. CRS referred us to Easter Seals, who is working with us for a solution. We will need a Hitch for the family vehicle, but the amazing sweet lady at Easter Seals decided that he really needs a smaller chair, with wheels that he can move himself when he is able. They possibly even have a lift available for us to use to attach to the back so that we can still access the hatchback. Blue will be home soon and we will  not have a lot of extra space in the family vehicle. We expect to have it for at least a few more years, so we have to adapt it to make it user-friendly as our needs change. We are looking forward to getting out the house and truly obtaining "Positive Seizure Management" when Blue gets HOME!  It sure will be wonderful to finally be able to do things in spite of the seizures. As a family, we need to learn to live life to the best of our ability, through the seizures! I find myself in a great amount of gratitude for those that have donated to make Blue possible. Her balance is down to $410 as of today. It is amazing that a few people, churches, and one business came together and got us this far. We all have great happy feelings knowing that people have seen the need, reached out and gave.

Here is a link to the Red Basket site set up for Brynn and Brett's Seizure Alert K9 Blue:

https://redbasket.org/320/bring-blue-home
All donations through Red Basket are tax deductible. We would like to thank Red Basket for their help in setting up the boys page. They are really great to work with and verify all askers, so you can feel good about donating to any cause on the site. 

I have been volunteering with National Seizure Disorders Foundation and hope to spend many years helping others achieve their goals! I really enjoy being the Treasurer and writing Caregivers Corner! We have some really great folks on the Board of Directors and I am blessed to have them in our lives. We would like to thank National Seizure Disorders Foundation for helping us to believe that Blue was possible and helping me not to loose faith or focus when people were not donating! 


Here is a link to the latest edition of Caregivers Corner:
http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner-by-denise-marsh-2/

   

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.

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...