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, February 25, 2013

Recap on school happenings...

  • Last year Henna had a great teacher and her first service dog, Leo the Labradoodle, attended school with her. The middle school hired an additional aide who's additional responsibilities would be to handle Leo. Henna has seizures from a TBI and is in a moderate ID classroom. The aide was not 1:1 so Leo didn't get the discipline he needed and did what he wanted. The real problem with Leo was he became protective of the classroom and would bark and growl at anyone who entered the room. We retired him in 2010 and waited 2 years before we got Snoball in July 2012. Enter high school...The school seems to be excited to have Sno and I thought things would go like they did in middle school because we were in the same school county. I couldn't have been more wrong! We had written in Henna's dog into the IEP as a medical piece of equipment and she had goals pertaining to her dog. The high school said the dog could attend school, by ADA law, but they weren't responsible for having her aide handle the dog. We also wrote in a 1:1 dedicated aide that we had to fight to get. They finally saw the liability of Henna having 20+ seizures a day and granted a 1:1 aide.
  • Flash, another 4 Paws dog was turned away from Henna's school because they said he was too hyper. So against the law. So I've been going to school to handle Sno since Sept. and I have seen horrific things in the special ed program that affects Henna.
  • When I started to question things about the special education program the school started to retaliate. Fast forward to present. We hired an advocate attorney who took our case pro bono and we filed a complaint with the state. We thought because the dog was written into the IEP we had somewhat of a case. The state found the school in compliance and does not have to provide the aide to handle the dog. We're working on this still. I talked with the DOJ and an attorney is going to call me. The school doesn't feel Henna needs her dog to get FAPE (Free and Appropriate Education). Sno has been so good in school. Alerting to seizures and doing her job. Great ambassador. We have decided to get a good IEP in place and change schools. Who knows what the new school will say about Snoball. Like most, we didn't have a problem getting the dog into school. We are trying to get the aide to handle the dog which is another issue. Never before has it been addressed in the courts so we're treading on unpaved territory.
  • Sno has been going crazy for 4 days because she's been at home. They kicked me out of school saying I was disrupting the class. The teacher didn't like it that I asked her a question and I challenged her answer. She told the Vice Principal that I was disrupting the class, taking pictures in class, and swearing in the hall. They kicked me out and didn't even talk with me to hear my side. If we don't get resolution and Henna back in class today my attorney is filing a complaint with the Office of Civil Rights (OCR). They did allow me to attend the IEP meeting last Friday but didn't mention anything about Henna getting back to school. They said Henna can come back but we stand strong that she cannot attend school without her dog and I handle the dog. They don't want me watching them in school. They know their program is a babysitting service.
  • Hopefully Henna will be back in school tomorrow and we'll work on the dog issue as we go. First thing is getting Henna a good strong IEP and then placement in a new school. 

Posted by Jan at 5:15 AM

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