Finally seeing some light at the end of the tunnel.

Well friends I'm happy to report that I'm finally seeing some light at the end of a very long dark tunnel.It may be a small patch of light and it may be for only a few fleeting moments,but it is light none the less.


Ariel has a wonderful pediatric high risk case manager,for complicated kids with many medical needs.She has gone to many battles for us and we feel very blessed to have her.

She got us in with the wonderful Urologist for Monday.His wait list was tremendously long,like 6 months out.I'm praying he can help her resolve these issues she still has going on.We also saw her wonderful Epileptologist yesterday.She just couldn't believe all the incompetence going on.

We had a long discussion on what are our options should she not be able to continue on the Topamax,unfortunately our options are few.Especially with all of Ariel's med allergies.Felbatol is one,we don't want to do that,especially after seeing how it affected Daniel or Sabril.The eye issues with that one bother me.


So she has to do the Citra k 3 times a day to hopefully change the acidity in her body so it doesn't make stones.If that doesn't work,then we will have to cross the bridge of a new med for her.


She also increased her VNS.Right now everytime it goes off she chokes a bit and gags,but I'm sure she will get used to the new setting in time.

Yesterday was the first fairly decent day she's had in a very long time.Things were well enough that Gilbert and I were able to go to the movies.lately we've been like ships that pass in the night.I'm always in the hospital,at the E.R. or in Ariel's room comforting her.It was a nice time.

Today is my oldest son's birthday.We will celebrate with a little party tomorrow.Ariel has a friend coming over and the following day after church.She and I are going to a Broadway play in Seattle ,that is if she's well enough.

This is not my favorite musical,but I thought it would be fun for Ariel and I to have a girls day out.

I want to thank you all for the love and support you've shown to us during this time when Ariel's been so very sick.You will just never know how much a guestbook signature a kind word and e-card or phone call will do to brighten someones spirits.


Ariel has certainly felt loved.I thank you all for that.

God bless,Linn

What in the world is a Vagus Nerve Stimulator? Only 1 day left until surgery.

Hello friends,Well we are getting down to the wire.Only 1 more day.Tomorrow we check into our wonderful hotel at SeaTac,provided to us by,

The Chelsea Hutchison Foundation

It will be such a blessing to be only 10-15 minutes away.
I thought I would give you all a little bit of info on the VNS.

The size of the VNS is about the size of a silver dollar,just a bit thicker.   

VNS Therapy device

VNS Therapy is used in addition to medications to help improve seizure control. The vagus nerve is one of the primary communication pathways between the body and the brain. VNS Therapy is delivered by a device (generator) similar to a pacemaker and a thin, flexible wire (lead) that sends mild stimulation to the left vagus nerve. VNS Therapy is not a drug and, therefore, does not have the same side effects and does not interact with other medications. The vagus nerve delivers these periodic stimulations to the brain and helps to prevent electrical irregularities that cause seizures. Treatment is automatically delivered at regular intervals all day, every day so that you do not have to worry about missing a dose.

3 months old post op scars (neck)

VNS Therapy is not brain surgery. VNS Therapy involves a minimally invasive procedure, which is typically performed under general anesthesia by a surgeon. The procedure takes approximately 1 hour and patients usually go home the same day. Typically, two small incisions are made—one in a natural crease on the left side of the neck and one in the left chest area, below the collarbone. The generator is typically placed under the skin in the left chest area. A thin, flexible wire connects the generator to the left vagus nerve in the neck. The small scars from the two incisions typically fade over time and become minimally noticeable for many people. Another procedure is required to replace the generator once the battery is depleted. This procedure requires only one incision and usually takes less than an hour. The VNS Therapy procedure is completely reversible.

Ariel will be staying in the hospital overnight,due to her complex medical history and having a bad history of med reactions and allergies.

The VNS Therapy magnet

The VNS Therapy magnet may provide additional benefits for some people, but it is not necessary to use it for your regular stimulation. By swiping the magnet over the generator when you feel a seizure coming on or during a seizure, you or your caregiver will be able to stop the seizure, shorten the seizure, decrease the intensity of the seizure, and improve the recovery period following the seizure. You can also fix or hold the magnet over the generator to temporarily stop stimulation during certain situations or activities when even mild side effects are troublesome, for example, public speaking, singing, exercising or other strenuous activity. The magnet can be applied by any person or caregiver trained in how to use it. If you experience troublesome side effects for an extended period of time, contact your physician.

  When we did testing at Harborview we found out that Daniel,Michael and Ariel all have a Genetic Epileptic Syndrome and that Ariel was having seizure activity every 2-3 minutes.

We are praying that the VNS will help to control Ariel's seizures better.

Thank you for praying with us and believing for some improvement for her.God bless,Linn



Information from Cyberonics.