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, April 11, 2013

A little late but here's Easter!


Henna helped me make this dessert on Easter.  It went fast!



Henna got the Grinch dog Max in her Easter basket.

                                                                Fran got Henna a new shirt.
Henna and the kids dying eggs.


My thugish grandkids...they all got glasses.

I want to update everyone on our school situation.  We had our mediation with the county and we came to an agreement.  I can't discuss it but it's not exactly the route I wanted to take.  I wanted to fight the fight all the way.  Believe me!  The school is not being held responsible and they put the trouble we had back on me for disrupting the class.  Without going into detail, we realized the fight was going to hurt Henna more than help.  Our goal was to get her back in school.  We are getting a new school placement for Henna which hopefully will mean a new start for everyone.  We still have to write her IEP and we'll do that at the next school.  Henna will also get evaluated again.  This will be good because we will have a baseline. The school wants to blame Henna's regression on her brain surgery.  
Henna has learned so much being home schooled that if the next school doesn't follow her IEP and can't meet her needs we will home school her next year.  Again the school will get off but they won't get that chunk of money they get for a special needs child who attends their school!
As for Snoball, the state already saw in favor of the school and does not require the school to provide an aide to handle the dog or even allow the aide to handle a service animal.  I will have to provide a handler or go to school  with Snoball.  
We are going to go to Henna's new school with a good attitude and keep the line of communication open. It has to be all about Henna and what's best for her.  I'm so thankful that she has such a gentle spirit and doesn't comprehend what's been going on.  She does what we tell her and she does it with a smile.What a blessing she is!
Please continue to keep us in your prayers as we start a new journey into the unknown.  God is good and will provide all we need.  Thank you all of your love and support.  It means a lot.

Blessings,
Jan


Posted by Jan at 5:08 PM

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