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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Tuesday, November 29, 2011

Holiday Update



Thanksgiving was a quiet time for the Sotos.  With all the kids spread out we had a small gathering.  Fran and her 4 kids were here, Henna, Mica and Carter, and Darrell.  The food was delicious and we still have leftovers.  I started some split pea soup with the leftover ham bone today.

Henna is going to start therapeutic horse back riding lessons in Feb.   She will ride at the Rainbow Center in  Haymarket.  www.rainbowriding.org  We've decided to put her in a group, total 3 riders, so she can have the social interaction with kids her own age.  I know she's going to love it!

Yesterday Henna had a physical and she was not a happy camper.  They checked her blood with a finger prick, gave her flu nasal spray, she had her last Hep A shot, and also her meningitis shot.  There were a few tears but she went to school in a good mood.

We increased Henna's medications and we've seen a little improvement with the intensity of her seizures.  Leo has done a great job alerting.  The other day Henna and Carter were taking a bath and I got Carter out first.  Henna got out and I wrapped her in a towel, turned my head for a split second, and she fell into the wall.  I felt horrible!!!  Her tooth went through her lip and she scraped her nose and chin.  We both hugged and cried.

Henna got her retainer and has done a great job wearing it.  She has been so responsible.  She chose a navy blue color with a ladybug sealed in the plastic.  The space between her front teeth has closed already.  We weren't sure if she would be able to handle the impression for the retainer without gagging but she was a champ.  She surprises us everyday!

A few weeks ago I went to the annual ARC conference for the disabled.  I had been trying to get there for years.  I was so encouraged with all the services Prince William County has that will benefit Henna later on in her life.  Especially the attitude and philosophy of the independent living program.  Henna would definitely thrive in a group home setting later on in life.  She is always asking when she can get her own home. 
We want to protect our children and keep them close and safe but with some kids it would be a disservice to not allow them to go out into the world and experience life as we do.  The one thing that resonates in my mind that I took away from the conference was,
"It's not what you do but who shows up".  These special people need to know they belong and that means the people who care about them need to be involved in their everyday lives.

Have a blessed Christmas!
Jan
Posted by Jan at 4:38 AM

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