Henna's Journey...: September 2010

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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Saturday, September 25, 2010

A Very Relaxing Weekend

We have NOTHING planned this weekend. Henna has watched movies, played on the computer, run around outside, and had fun playing with Carter. She hasn't had too many seizures. It has been cooler today which helps. Heat triggers Henna's seizures.

Yesterday was very hot and even our pet toad, he lives on our deck, resorted to a cooler place.

Denesha Skyped Henna today and they talked for a long time. She misses Denesha! Denesha is in Florida playing soccer with her college team.

Tomorrow we are going to give Jonas a bath if it's warm enough. He just had surgery so we have to be careful.

Tuesday, September 21, 2010

VNS...Vagus Nerve Stimulator

We met with an Epilepsy specialist and he believes Henna would benefit by a VNS made by Cyberonics. Please read more :
http://us.cyberonics.com/en/vns-therapy-for-epilepsy/patients-and-families

He meets with other doctors and the surgeon on Thursday to discuss her case. He also said that if this wasn't beneficial he thinks she's a great candidate for a Corpus Callostomy. When performing a corpus callosotomy, the surgeon cuts the corpus callosum, the large fiber bundle that connects the two sides of the brain. In contrast with a lobectomy, corpus callosotomy does not involve removing any brain tissue. Instead, it usually involves cutting the front two-thirds of this bundle (a procedure called a "partial callosotomy") in the hope that the operation will markedly reduce the seizure frequency. Sometimes the other one-third is cut later ("complete callosotomy").

Corpus callosotomy is most effective for atonic seizures ("drop attacks"), tonic-clonic seizures, and tonic seizures. Seizure frequency is reduced by an average of 70% to 80% after partial callosotomy and 80% to 90% after complete callosotomy.

Hopefully we won't have to resort to surgery but we will do whatever it takes to lessen Henna's seizures.

Today we went to the orthodontist for a check up and she was so good he was able to get bottom braces on. We didn't think we were going to be able to get her to tolerate them. She did great!

Tuesday, September 14, 2010

Last weekend we went down to see Denesha at Lenoir-Rhyne University for family weekend. We watched her soccer game in the rain.

CJ and Emmanuel came from 4 hours away and surprised Denesha.

DJ was with us too and was a big help with Henna. We didn't get to visit much with Denesha but did go out to dinner at a Mexican restaurant.

It was a long drive home but Henna was good and watched movies. When we got home Henna's spiderman shirt had arrived and she was so excited. She wore it to school on Monday. Jonas was happy to see us too and was doing well.

Thursday, September 9, 2010

Off to a good start...

We visited National Harbor before school started and enjoyed the water, boats, and all of the new establishments going up in the area.

These eagles were made of metal and were very detailed.

Inside the Gaylord National Hotel

Henna has started school and everyday gets better. Her first day of school was tough. She was fussy and very sassy. She has become obsessed with Spiderman and all she wanted me to do was call him. She goes in phases of which super hero she wants to identify with. It was hard to convince her that I couldn't call him. I told her we would visit him at Disney World soon. Here she is shooting a web. I've ordered Spiderman shirts off ebay so Ironman will have to take a rest in her closet.

Henna's Journey...