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Saturday, November 17, 2012

Dealing with the Present and the Past... 21 Years is too long...


We made the trip to New Orleans to have the settings set higher on Brynnons VNS Implant. I really wanted to visit with my Dad, who is now 78. I didn't get to meet him until 1995 in person, while expecting Brandon just before we moved to MS. As a youngster, I passed notes and to him through a cousin I went to school with. I even mailed letters and pictures through an Aunt I found by looking in the phone book and calling everyone with my "old" last name. I wanted to see him, he is not getting any younger and every time we talk he says it's been 5 years since he saw the children. So we went the night before Brynn's appointment on Monday night November 12th. We got a bite to eat, checked in to the Hotel, brought our bags up to the room and left to go to Dad's. I had a hard time getting around trying to remember how to get there... My mind was frazzled and forgetful. Too much to think about I suppose. Everything reminded me about Momma and riding around with her to and from the office. There we were, passing the very building she was murdered in, on the exact day she was murdered 21 years later. I thought it appropriate to take a photo of the moment, I do not think I have ever been at that building on the very day in all the 21 years. So hard to believe that she has been gone that long... Even harder to believe that all of us who loved her have not done anything to make the truth known about her murder. That is exactly what I intend on doing. If any of those that she loved would have been brutally murdered like she was, she would not have let 21 years pass without making sure everyone knew exactly Who did it and Why. So many unanswered questions, and those responsible never had to answer for their part in her murder.  It's just been swept under the rug... in hopes that no one would ever pick it up and start sorting through the details. As I stood there at that building I wondered what keys it still holds to this day. Is there DNA evidence still there? Do the guilty still live in the area? How much of what the Police told us is actually true? Why did they not do anything, why did they fight so hard to let the guilty walk? Who really knows the truth and why after all these years have they not talked? There were a million memories and a million questions fighting for my time in the moments that I stood at the very door.. I remembered being there with Momma when we highlighted my hair... and I remembered going to pick her up and going to the thrift shop for something to do. I thought about the talks we had, the laughs and the serious talks about God and life. I also thought about all those unanswered questions and I thought about what she would look like now, what she would sound like and even what she would smell like now. When I think of her laughing, I can hear her... When I think of our talks, I can hear her voice as if she is right here. She had this way about her of telling you exactly like it was. She didn't bite her tongue, but she wasn't rude or cruel either. I laugh sometimes when I wonder what she would say about something... knowing full well she wouldn't approve and would tell me so. I wish I could remember every talk we ever had and I wish I could remember every detail about her case. I wish too that it never happened and I could share my life with her. I wish I could walk in the door of that old house and see her standing ironing clothes while MASH or Perry Mason plays on the TV. I hate that I have to remember that she was taken like she was. That a human being was so full of hate and rage that they were able to stab a beautiful, loving, unselfish, dedicated Woman and Mother like her 21 times. I hate that we had that uneasy time of separation and rebellion in my older teenage years as I became a woman and stretched my wings and left the nest. I am so thankful that we were able to repair our relationship and build many happy memories before her murder. We will never have the ability to undo what was done, but it is our responsibility as those she loved and cherished to at the very least, let her memory remain alive and a blessing always. Her memory is a blessing in my life, I just wish I had more of them. I guess I will always feel like we had so many more moments to share...
    The next morning we got up, got ready... ate I Hop for breakfast and went to Children's Hospital.
Brynnons VNS settings were upped, but his Neuro decided we will have to take his adjustments a bit slower than usual. He seems to be extra sensitive to it. He coughed when the magnet was used before the settings were raised and said he felt like he would throw up. Now that he has gotten use to it, he doesn't feel sick anymore. When the VNS comes on he says Ahhhhhh, as it makes his voice sound like a robot. He did this the first day every 5 minutes when it came on. Now it's getting further and further apart as he adjust to having it happen. Sometimes he talks through it now and doesn;t pause and say Ahhhh... I have talked with a few people who say that it feels like a tickle or a choking sensation when it comes on. He is doing much better with it now! We will return in December to have it adjusted higher again, unless his seizures surpass his baseline again and we can go in sooner if that happens. Yes, he is back at his baseline again! The Zonegran increase does seem to be holding on and doing it's job... So thankful! We talked about Brynn needing to learn to swallow a pill. His Neuro decided that instead of weaning Depakene he would like to try him on Depakote ER (Depakene is the liquid form). He says that the Extended Release may work better and his dose could possibly be lower. It could explain why he has breakthroughs because the liquids of these drugs tend to work in waves, whereas the ER would stay constant. Seems to make sense to me and I am all for it. Told Brynnon I will give him $5 if he can swallow an M&M and $1 for a Skittle. Cognitively he has made some progress with the Zonegran as well. His processing speed has gained enough to make a noticeable difference when he is talking sometimes. The Neuro feels this is due to the decrease in the little seizures that we cannot see. I will be anxious to see another EEG report with the VNS to see what the difference is once the settings are where they need to be. I wish we could just get a 24 hour Video EEG once a month! That would make it so much easier to know where we are and where we are going! The Neurosurgeon says his incisions look great! They are healing very nicely and are just about completely closed now. The nurse told him the VNS is part of your body now. You need to know where it is and get familiar with it. It's okay to touch it and feel it, it is part of you! Brynn seemed to like this idea and has been very interested in it since she told him that. He asked me what if the battery needs changed and I explained that they will have to do surgery again, but this time they will only replace the part in your chest. He asked if they will connect the wires to the new one, and I said yeah... cool huh? Then he asked what if we change our mind, what if I don't want it anymore. I told him that they can turn it off but they usually will leave it in. He seemed disturbed by this. He asked why, so I told him they can take out the part in your chest, but the wires will always be there. We hope that this is the answer for Brynn and that some day SOON he will be sEiZuRe FrEe!!! 


REMEMBER...
~ November is Epilepsy Awareness Month!! ~

Thursday, November 1, 2012

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...