A MIRACLE!

Henna was 2 years old when she was admitted to the hospital with a traumatic brain injury. She had been thrown against a concrete wall by her biological father for crying too long. She had two depressed skull fractures, old blood on the brain from previous abuse, a lacerated liver, collapsed lung, suspected sexual abuse, and shaken baby syndrome. Henna coded while on the way to the hospital via helicopter and was brought back to life only to go into surgery to relieve pressure on her brain. She was not expected to live through the night. Henna was in a coma for one month hanging on to life. Then the miracle happened! Henna woke up and was able to move all her limbs and speak, shocking all of the medical professionals. We took Henna into our home and shortly after her arrival she started having seizures.

Henna's journey continues as we try to control her seizures. She received the Vagus Nerve Stimulator (VNS) on Feb. 4, 2011 at Children's Hospital in Washington, DC. The VNS will send an electrical impulse to Henna's brain every 3 minutes for 30 seconds to interrupt her seizures. Over two months we have increased the electrical current and we have seen no change in her seizure activity. It looks as though Henna is in the third of children who receive a VNS that sees no relief from the VNS. We are very disappointed! We have started her on a new medication in addition to her current medications. Maybe it will help.

On August 6th, 2012, Henna had a full corpus callosotomy. This surgery is for people who have generalized seizures with no focal point. The corpus callosum is a band of nerve fibers located deep in the brain that connects the two halves (hemispheres) of the brain. It helps the hemispheres share information, but it also contributes to the spread of seizure impulses from one side of the brain to the other. A corpus callosotomy is an operation that severs (cuts) the corpus callosum, interrupting the spread of seizures from hemisphere to hemisphere. Seizures generally do not completely stop after this procedure (they continue on the side of the brain in which they originate). However, the seizures usually become less severe, as they cannot spread to the opposite side of the brain.

Henna received a white Labradoodle, Leo, from 4 Paws for Ability in Oct. 2010. We sent 4 Paws 2 shirts a week to help train her dog. One shirt was when Henna had a seizure and they used it for her dog to smell the chemical change during her seizure. The other shirt was when Henna had NOT had a seizure. This helped her dog differentiate between the two scents. It's a fascinating process. We trained for 10 day in Ohio with Leo and a trainer before bringing Leo home.

Leo had been going to school with Henna but started to bark and growl at different people when they came into her classroom. We worked with Leo's barking and growling when people would knock on the door and for a while he seemed better. He is very protective at home also. He then barked and growled at some boys who came into Henna's classroom and had to be removed from school. The trainer at 4 Paws said that some dogs bond so closely with their child that they become protective. Leo took on Henna's classroom as another home and felt he had to protect her. Sadly, because of his aggressive behavior, Leo can no longer be a service dog. The trainer said Leo would behave lthat way with any child he bonded to. Just his nature. We will keep Leo as a pet. Leo LOVES being just a pet. He still alerts to Henna's seizures and lives to get his hot dog reward!

Henna now has Snoball, a beautiful Golden Retriever. Snoball was born June 3, 2011. She is so sweet and a bundle of energy! Sno is doing an excellent job alerting to Henna's seizures BEFORE she has them! She is alerting up to one hour before Henna has a seizure. Sno goes to school with Henna and proudly wears her school ID badge. Snoball will be a great seizure alert dog and will serve Henna well.

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Monday, April 11, 2011

Henna sings with VNS (Stop the Playlist song before playing the video)

Henna's doctor said there are few kids that can talk who have the VNS implant and asked me to video Henna while the VNS was operating.  They have little info from VNS recipients between the age of 13-15 on how it feels and sounds.  This video is of the electrical current going up the Vagal Nerve to the brain while Henna sings the ABC's.  Henna sounds like Chewbacca!  You can actually hear it stop after the 30 seconds.  Dr. Pearl is the chief of General Child Neurology, as well as program director in Neurology at Children’s National Medical Center.  Henna had her VNS increased again today and there is only one more time to increase it until it's at it's maximum current amount.  So far we have seen little relief.  Dr. Pearl said we will wait 6 months and adjust the current flow and see what happens.  If it doesn't start decreasing her seizures Henna is an excellent candidate for the Corpus Callosotomy.  This is when they surgically separate the 2 hemispheres of the brain so the seizures can't cross from hemisphere to the other.  This is supposed to take care of the drop seizures but can increase other types of seizures, such as partial seizures.  Henna does not have this type.  It's scary to think this is the last option we have for her to get rid of her drop seizures.  If she were to get the surgery she could still have the other 3 kind of seizures she experiences now.  The drop seizures are very dangerous because she can fall and hit her head or body.  Please pray that the VNS kicks in and starts doing it's job.


 Sunday after church we went to a small lake and fed this lonely duck.  We were hoping to see a gaggle of geese along with a bunch of ducks but this guy was enjoying himself on the lake alone.  We had cleaned out our pantry and had a huge bag of crackers, croutons, and misc. items to offer any animal who wanted them.
 Carter and Henna littered the lake with the crumbs.
 This turtle peeked out at us and had a few bites of a cracker.
 There were many Coy fish that were over 2 feet long.  We saw a few jumping out of the water but they didn't surface for our goodies.
 After our adventure we went and got some icecream.
Here is Henna with her new "Chucks".  She wanted red but settled for black.  It was another warm day in Woodbridge but I heard there is rain coming tonight.
All of my tulips are up and are so beautiful.  The leaves are starting to come out and before we know it we'll be in shorts and flip flops.
Have a blessed week and don't forget that smile and kind word to someone who needs a lift.
Jan
Posted by Jan at 3:46 PM

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