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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Wednesday, February 16, 2011

VNS is turned on!

I spoke with the Vice Principal the other day and told him we were working on Leo's barking and growling.  We are going to socialize him more and use more diversions when there is something or someone he barks at.
We went to the doctor on Tues. and they turned on Henna's VNS.  They swiped a wand over her implant and all the implant info came up on a Dell palm-like handheld.  It is set at a low setting sending an electrical impulse to her brain every five minutes for 30 seconds.  We go back weekly for eight weeks where they will increase the current.  We have to watch for any prolonged drooling, coughing, or choking during those 30 seconds when the signal is being sent to Henna's brain.  She had over 20 seizures yesterday.  She had one in the doctor's office and I caught her before she fell.  Leo came around to the front of her and balanced her.
I took Henna to school after the appt. and she continued to have seizures.  I tried to get Leo to lay in his place but he wouldn't.  Henna's teacher said she is finding that BEFORE Henna has a seizure Leo will get up and have a lot of anxiety.  I asked her to chart it because that may be the way Leo alerts.
This morning Henna fell off the stool, I caught her going down, and Leo comes bolting from the other room to check on her.  He started licking her mouth and wouldn't leave her.  He barked at another seizure.  I was very happy he responded.
Leo and Henna got home from school and Leo was without his harness.  His teacher said he had chewed it AGAIN!!!  What's a mother to do?
Henna has been confirmed for respite on Feb. 25th for the weekend.  Chris and I are going to his annual AF Academy reunion dinner.  The theme is the early 70's.  Can anyone give me any help as to what clothing was being worn back then?  I was in middle school and still dressed like a tomboy.  LOL.  Thanks!
Off to church for Wed. dinner.
Jan

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