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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Thursday, September 20, 2012

School news.

Henna is adjusting well in school. She had her first high school picture taken yesterday and it was so cute! She wore her hair down with a headband. Sno had her picture taken too! She'll be in the yearbook. Sno kept going
into a "down" when I tried to get her to sit and pose for the picture. She's so used to being in a down that she assumes that position automatically.

So the latest on the designated aide saga. The county has FINALLY approved a designated aide for Henna. This has taken only 3 months, 2 doctor's letters, and me being in Henna's classroom with her and Sno for the last 3 weeks. Unbelievable! Apparently their budget is more important than Henna's safety. Henna is still having seizures. We were told that the school was ok with the aide handling Sno but now the Principal wants the approval of the Dept. of Special Education. What next?? We have informed the school if Sno can't be handled by the aide we will pull Henna from school and request a home bound teacher. Sno is a piece of medical equipment in Henna's IEP. Just like a child with a wheelchair. You wouldn't take the chair from that student and Sno shouldn't be separated from Henna. I have been so frustrated!

In school I am having Sno "check" Henna 2-3 times a day. She goes up to hear a smells her mouth. If Sno detects a seizure she licks Henna's mouth and doesn't stop. Every time she has checked Henna she has alerted. Henna's seizures are so short now they are hard to detect and catch. I believe she is having more than we see. I have seen about 6 daily at school and more at home. At least she isn't dropping which was what we were hoping the surgery would take care of of and it has so far.

Chris and I have Sno today and we are off to a CFC Charity Fair where we wl represent 4 Paws for Ability at the National Oceanic and Atmospheric Administration. This is Sno's first event. Leo has attended a few. When Henna got on the bus Sno was very confused as to why she wasn't going with her.

Have a great weekend. Fall is here!

Blessings,
Jan
Posted by Jan at 5:42 AM

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