Henna's Journey...: My Twinn Doll

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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Sunday, April 3, 2011

My Twinn Doll

Henna has never been interested in a doll but she saw me looking at one for Carter and wanted one. When Henna was just a baby and had been with us a short time she had a baby doll. One day I heard her making noise in her crib at nap time so I went upstairs and peeked in on her. She was reliving the horror of her abuse with the doll. She would place it face down on her mattress, holding her head against the sheet. She would then turn it over and look at it and do it again. She then put a pillow over her head. She would shake it, stop and look at it, and do it again. Then the finale is when she threw the doll out of her crib against the wall. Breaks my heart...

I saw this doll under the "adopt a friend" and thought it resembled Henna. What do you think? It was less expensive than the regular custom made dolls too. I think she'll like it! Her birthday is May 14th.

Henna worked on her addition with a calculator for over an hour! I have never seen her so focused. She was so proud of herself.

The cherry blossoms seem to be surviving our cold weather. They are truly a sight to see. We have a few in our yard and after the forsythia blooms into a yellow shock I know that the daffodils and cherry blossoms will follow. Spring is a sign of hope. New life all around and our troubles don't seem so heavy.

Henna was sitting at the computer with her hood on. She is tired today. Last Tuesday we increased her VNS but throughout the week she had so many seizures at school. She's also had many here at home. Last weekend when she was at Jill's House she had a Grand Mal early in the early morning. Leo ended up sleeping in her bed with her. I sure hope and pray the VNS will start working and eleviate some of this seizure activity. We have about 4 more times we can increase the current before we're at the maximum strength. Henna is scheduled to go to Jill's House again in May, June, and July.

We're slowly putting into place her EDCD Waiver attendants. Mica, my daughter, will be my primary helper. My neighbor and Henna's elementary school aide will also be helping. I still have to interview a few ladies to handle Leo if Henna goes to camp this summer. I'm trying to get help from people who can work with Henna and get her reading. She has a hard time listening to me. Isn't that how it is with our own kids? It is for me, anyway.

Time to watch a movie with Henna before she heads off to bed. I hope everyone had a blessed weekend.

Jan