Heather | CaringBridge

Heather’s Story
Heather Riley has Lennox Gastaut Syndrome.  Sometimes she is a zebra other times a horse with stripes. Heather Riley is beating the odds. With a positive attitude and a family that would go to the ends of this earth if need be. 

http://www.youtube.com/watch?v=-VXU9dn3uvk (http://www.youtube.com/watch?v=-VXU9dn3uvk)

Gods grace and mercy are great..

Heather Riley has many smaller diagnosis that make up the big picture. Some are little things that we have found out along the way and others are little bits we may never fully understand.

She has two genetic abnormalities her geneticist has found over the years - not much is known or understood about either of them.

 she has a microduplication on Xp22.31
and an inversion of the 9th chromosome.
separately they may mean nothing, but together it is unknown how much damage they can cause. Xp22.31 is known to cause many of the problems that Heather has even though a certain percent of people have this duplication and have no problems. The inversion is unknown.

It has been theorized that Heather could have a mitochondrial disorder but it is unknown, she has been tested for many known mitochondrial and metabolic disorders. They are treated symptomatically and since we are very proactive- until a time comes that more definitive testing for something new we will continue with the supplements she is on and be happy she doesn't have any of the known diseases.

Newest Update

Journal entry by Denae A

October came and went without an update. There were several reasons for this. I needed to take some personal time to emotionally process everything that took place. Some good, some tragic.

Lets start with tragic.

Losing a child, no matter how that loss happens is always hard.
When Kimmie came to live with us we all knew the risks, I knew her diagnosis and the extreme challenges those entailed. I prepared myself and Heather for the fact that Kimmie may eventually run away. The situation is too frustrating and painful to go into detail, but that is exactly what happened. We do know where she is, we are able to keep a check on her along with other groups that work on the streets in our town. This is an illustration of so many system failures. It makes me so very angry every time I see her, not angry with her, but angry with the system who's cracks she fell through. She is in Gods hands now, I pray every night that the broken system somehow can finally do right by her as an army of people keep the fire burning to make sure Kimmie isn't lost in the shuffle.

In the middle of that crisis we celebrated a very joyful event. Heathers oldest sister, Victoria got married. Heather got to be a brides maid for the first time and she loved it. Toria chose her grandmothers house as her wedding venue which turned out to be perfect and even better-Toria looked beautiful!

For Halloween this year Heather wanted to dress up and trick or treat. She had a quite terrifying clown costume and enjoyed wearing it. Andrew and I took she and a friend from school. The girls laughed and giggled all night long as they went door to door asking for treats. Their joy over "big" candy bars was the best. Heather still has a rather large bag full of candy.

In early November Heather worked with Each Life Has a Place on a big project we had. Heather dedicated an entire saturday to cleaning up some of the local homeless camps. Heather alongside several other volunteers picked up two truckloads of garbage from these camps. She did so without complaining at all, she rested as she needed to without making a big deal about it, and then came right back to the task at hand. She really showed a lot of growth that day. I was and am very impressed with her ability to remain focused and do hard, unpleasant work.

Earlier this summer Heather was part of a rescue operation with a kitten from one of the homeless camps. We spent weeks providing food and soon realized that no one was living at that camp an the kitten needed a home. With the help of other advocates arrangements were made for the kitten to be vetted and fostered. Heather Riley and I picked him up and transported him to his new home. During the drive Heather Riley was petting the kitten and seemed to enjoy the interaction. Up until that point I had not considered allowing her to have a pet. In early November the opportunity presented its self for us to bring a kitten home. Heather Riley and I now have a sweet little kitten, Heather has proclaimed her name to be Tinker Belle. Tinker Belle has become the house princess. She is a very well behaved kitty and loves attention. Tonight Heather Ri is sleeping on the sofa and Tink is curled up beside her on the pillow. Tinks second favorite place to be is in a box we saved and have beside the sofa, not in the cute kitty bed, or even the cat tower Heather picked out, but instead a small plain box. Go figure.

Now, on to the big health issues.

I received a text message from her neurologist over a month ago, letting me know that Epidiolex was going to be available the next day for prescribing. Was I interested? ha ha! Of course. I certainly wish it had been that easy. Nothing is ever so simple. It took pulling strings after discovering several things had been done incorrectly, and having her neurologist make calls himself to get it personally handled, to finally get the medication in our hands. Delivery is finally expected for Friday morning.

With this new CBD oil I am not sure what to expect, it is more than twice as strong as what she takes currently. The problem with this is that CBD, for Heather, increases myoclonic seizures. While this may instantly seem bad, it isn't. CBD almost totally stopped her Tonic seizures, and significantly decreased her absences seizures as well as her tonic clonic seizures. Her complex partial seizures have been eliminated totally. The second oil we started her on has been instrumental in controlling the myoclonic seizures that were increased by the CBD oil. There has been a delicate balance for the last three years with that she takes. Heather Riley is going and doing better than anyone ever predicted she would so tampering with any of her delicate stability makes me nervous. This is an ongoing conversation with her neurologist, both in and out of the office. 

One thing I never do is take a day for granted. I am reminded by Dr.A that each day of good health is a gift and one day everything is likely to change. I am very well aware of this. Each time she has a tonic clonic seizure in her sleep, or when she wakes up I have a moment of panic that this is "the one" that changes our lives. That this is the moment life as we know it has come to a halt, that we will be back to living moment to moment. Then I realize I need to stop and put my faith back in God and trust her life to Him. To go back to believing that He has her life in His hands and I have to walk by faith just like I have in the past. We need to concern ourselves with the moment and not worry for the future. Just as scripture says, today has enough trouble of its own.

The Christmas holiday is coming up soon which means a couple of weeks home from school. Heather is excited, so am I. We have lots of stuff planned, some work, some just fun. We will also be taking it one day at a time as she starts the new medication this coming Friday.
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