Seizures vs VNS (Vagus Nerve Stimulator)

I want to start blogging on a regular basis so I can remember how things are going with Dawson with the new VNS therapy.  I know, some of you are thinking what in the world is that?  I will backup and give you a little history.  So Dawson has been having seizures for two years now.  He had his first seizure in April of 2009.  We were going down Woodruff Road when we looked back and Dawson was blue and he was not breathing.  We stopped in the middle of the busy road to try and find out what was going on.  We called the ambulance to come get him.   When we arrived at the hospital, he seemed fine just really tired.  My friend Angela (her daughter Kaylen has been having seizures since she was three and she also has Trisomy 18) had told me that was how Kaylen's happened.  So after much testing it was determined that he had Partial Complex Seizures.  They happened the same way every time.  They would start with him staring and then his oxygen saturation would drop low (some times as low as 40%) and he would turn blue.  We would do vigorous stimulation and then eventually have to bag him with oxygen.  He would usually be out of them in less than a minute.  It was a very scary minute that seemed like an eternity.  So, we finally got him on a medicine regimen of Keppra, Topamax, and Kolonpin and it had them under control.  In fact he went from January 2010 to December of 2010 with none.  The only reason he had one in December was he had a really bad UTI.  So then in January 2011, he started having another kind of seizures.  The only way that we could explain what was going on was he was "flinching" and "yelling".  At first the neurologist thought it wasn't a seizure just because of the briefness of the episodes.  Well these "episodes" started happening more frequently.  We tried increasing medication and even changing medications.  Well the seizures where not phased and on one medication they even increased.  He was up to having anywhere from 5 to 20 a day.  So his neurologist put us in the hospital for a long-term EEG.  From that EEG, it was determined that these were a tonic seizure and some were even leading into one of the other type of seizures.  The next day when she came in to discuss the results, she mentioned this new treatment for seizures that was a little different.  It was a vagus nerve stimulator or a VNS.  This is basically a small generator very similar to a pacemaker that is inserted surgically right under the collar bone and has leads that attach to the vagus nerve.  It is called VNS Therapy and basically it gives stimuli to the left vagus nerve.  He gets 30 seconds of stimuli every 5 minutes to hopefully help the seizures decrease, stop, or cut down on the severity of them.  I started researching but I think it is still fairly new.  We met with the rep from Cybertronics and ask TONS of questions.  So after that we felt like it was what we needed to try for Dawson.

Well they did the surgery last Tuesday and they turned the generator on today.  I'm not going to lie, I was scared to death and excited all at the same time for them to turn it on.  It basically has to be titrated to the right setting for control of his seizures.  I have been praying since we decided to do it that God would stop the seizures.  Whether he healed him of it or He used the VNS to stop them.  I knew it was all in his plan because of the peace that we had.  I'm not going to lie, I was nervous for the surgery but not about the surgery.  This was his 9th surgery but they have all been nerve racking. (however I don't think that is a totally abnormal feeling when your child is going into surgery)  So back to the activation of the VNS.  Early this morning Dawson had 4 seizures.  They turned on the VNS at 10:30 am and he didn't have one seizure until tonight at about 10:30 pm and he was also very alert all day.  Amazing!  Keep in mind, he has been having anywhere from 6 to 20 a day.  I am not getting my hopes up yet because this is just a very low setting and it may take us time to get to the right dose but I know that he is at least responding to the magnet swipe.  (this is what gives and extra dose to stop the seizure)

I will keep everyone updated!  I am just praying that Day 2 goes as good as Day 1.

On a different note, DJ had a great day today.  He got to go play golf with Daddy in a tournament that benefits the Woodruff Football team.

GOD IS FAITHFUL and we can trust HIM!!

Refreshing Weekend

It has been over a month since my last post and I am have so much in my head that I need to journal.  So I thought to myself, why not just blog.  So here goes...

I got to get away this weekend to go to a women's retreat up in the mountains at The Cove.  It is so beautiful up here.  The retreat's theme was "Get away with God" so that is what I planned to do.  God has orchestrated every part of the weekend so the theme could not be more fitting. 

First of all, I had an amazing Godly lady pay for me to be able to come on the retreat.  You see as a new church planter you don't always have an extra $300 dollars laying around so I didn't even think that I would be able to come this year and then this amazing lady came and told my sister-in-law, Patti Jo, that she would love  to pay for me to be able to go on the retreat this year.  I am praying blessings down on this precious, precious lady for allowing God to use her to bless me.  I SO NEEDED THIS!!   

The only other way that I could come was if someone could watch my kids.  Josh usually hangs out with them when I need to be gone, but we only had one problem...he was out of town this weekend too.  So my precious family stepped in to help.  My amazing mom, my wonderful mother-in-law, my grandmother, my dad, Libby, and my amazing nurse took wonderful care of them this weekend.  I'm not sure that DJ has even missed me because he has had so many people to play with and Dawson probably has had so many kisses that his cheeks are rosy red.

Well the next thing God had planned for me was to be able to be "filled up".  You see, normally when I come on this retreat I am ministering to others by being on the worship team helping to lead worship.  This time I couldn't make all of the practices with everything that was going on with Element, DJ's adoption, and Dawson's health issues so I had to not be apart of the worship team.  Well I have really enjoyed just getting to sit back and soak up our amazing speaker Brenda Blankenship.  That is another God orchestrated thing because guess what she is...a church planters wife and get this, in Spartanburg.  God is just so cool like that!  Well our first session was "When the Gangway becomes a Gangplank"(Trusting God on the Journey)  All of these emotions came rushing in with her first point...God doesn't call us to easy.  Hello, that was the very excuse that I used with God when he told us to plant, "God can i just have something easy?"  She told us that some legs of the journey are sunshine yellow (like a job with an established church and an established congregation), some are midnight blue (Infertility, Dawson's health  issues) (they also come on suddenly and come in bunches), and some are multi-hued (like various trials, all different).  I felt as if she was speaking right to me and then she came with the refreshing words straight out of God's word in John 16:33, "I have told you these things, so that in me you may have peace.  In this world you will have trouble. But take heart!  I have overcome the world."  WOW!!

During this session I had so many things go through my mind.  I am going to split this into two because this one is getting long but I will tell you this, during this session God gave me some very specific things that I needed and gave me something for a couple of our Element ladies.  I can't wait to get back to share with them.  I MISS YOU ALL MY SWEET FRIENDS!!  I truly love where God has brought us and I know this is exactly where God called us.  I love our city of Woodruff, the people of Woodruff, the people of Element Church, and I can't wait to see what God has in store for us as a church in the city of Woodruff.  God is faithful and I Trust Him!!

To Be Continued...

In the Beginning...

Well, I have been inspired to try the whole “blog” thing again.  I have blogged several times on my old blog but I have decided to start fresh and new.  What inspired me is a sweet friend of mine that has had to walk through some pretty tough times and is still trying to help others by sharing her story.  Maybe God could use some of the things I have walked through to help someone else.  I want to be real and helpful with everything that I say.  I hope my blog will always be encouraging, helpful, and  let you know that you can trust God NO MATTER WHAT!!

With this first post I want to tell you a little about the start to my sweet family.  I will start out by saying I have the most amazing family every!!  My family began when my husband, Josh, and I got married in 1997.  He is a truly amazing man of God that I am so glad and blessed to be doing life with. (LOVE YOU BABY!) We had a beautiful wedding, had an amazing honeymoon in the Bahamas, moved into our first home, had amazing jobs, and decided we would go ahead and start having children.   Well God had a different plan for us.  We tried for about a year on our own and then decided to talk to a doctor about the problems we were having.  The job that Josh had at the time would pay for all “infertility testing” but not “infertility treatment”.  So we decided to get tested and we found that I had PCOS (polycystic ovarian syndrome).  Then it took Josh getting laid off from that job to send us to the next job where his insurance only paid for “infertility treatments” and not the testing.  (sound like a God thing to you?) Well the doctors told us that we could still get pregnant it would probably just take a little help to get things started.  So we did the 4 rounds of Clomid, the Ultrasounds every couple of days, the bloodwork every couple of days, 3 rounds of shots, and finally an IUI.   We never got a positive “your pregnant”, and the closest we came was a false negative. (I thought that didn’t happen)  After the IUI, we ask a lot of questions to the doctor and God kept telling us in His time.  So, we decided to let God just do what He knew was the plan for our lives.  Even in this experience with infertility, God was preparing us for what was to come.  He was teaching us how to Trust Him in everything and to live a life of faith when it doesn’t even make sense.

In the upcoming post I will let you know what I mean by that last comment.  God has told us to do some crazy things since he started our family in 1997, but He has always been faithful to take care of us. 

God you are faithful and we Trust You!

To be continued…