Dental Appointment

Symone did her yearly dental appointment yesterday.  She goes to the Ford Clinic in Duncanville, TX.  They specialized in special needs dentistry.  And, because she won't sit and let them clean her teeth; she has to be sedated.  Her appointment was at 7:30am and we were out of there by 9:30am.  We got home she went to sleep and didn't get up until 8:30pm.  Then, I couldn't get her to eat or drink much at all so in walked the seizures.  We were putting out seizures "fires" all day long.  I was exhausted!  And, so was she.  We stayed home from work today.  I got out of bed at 10am (only because of the phone).  Symone didn't get up until 11:30am (only because I insisted).  The Ford Clinic is a caring place.

A Loving Friendship

In my last "Neuro Feedback" post I talked about how the feedback has helped Symone with the inappropriate hugging she's done for years.  But, let me also add that she has the most amazing friend, Katie.  Katie fell in love with Symone as a "Friend of the Soaring Eagles."  Friend of the Soaring Eagles is a group of young adult volunteers that are willing to spend one-on-one time with Symone and her friends at the Center or away on outing or at their home.  Katie is a college student and wanted to volunteer her time but, she has since sign on to for respite.    Katie is a Godsend for Symone!  Symone loves Katie and looks forward to their time together.  When they first started going out on Thursdays; Symone would come home and before long she would go into an acute repetitive seizures.  It took me three outing to realize the seizures were coming because Katie was taking her too fast.  They would go to four or five different places with lots of people around.  Symone enjoyed it but, it was still to much for her.  So, Katie and I talked and decided to scale back a bit; that she would take her to only one or two places.  And, it worked.   The seizures stopped and Symone is stepping out of her comfort zone.  Katie will let her pump gas; pay for her own items, help wash the car, and a host of things that I've since stopped doing.  Katie loves to laugh and so does Symone.  They go to the library, the park, the car wash, shopping, Katie's home, the movies and so many other places.  They read books, do puzzles, bake cookies and so much more.  So, in addition to the feedback; Katie is also helping Symone move forward.  I am so happy for Symone!  She has a true friend.  And, we have wonderful addition to our family...Katie.

Neuro-Feedback

I've heard only good things about neuro-feedback.  So, we decide to go that route instead on medicine for "undiagnosed" social anxiety for Symone.  When I look back the anxiety started for her as a toddler.  And, grew as she grew.  Then when she hit puberty it went viral.  And, at the same time (puberty) the seizures grew worse.  So, we focused more on the seizures.  We chose neuro-feedback instead of medication because of the med side effects.  Well, she is six weeks into the feedback and I can see a very slight change.  Symone has always wanted to hug, hug, hug; especially at work.  Whenever someone would turn the corner she would overtake them with a hug.  She would get so far up into their "space" it made me step back.  But, I couldn't get her to stop or understand other people space issues.  But, now she's not hugging!!  This is very big for us.  I just realized it today...she is not hugging.  And, she has the most amazing, gentle, authentic doctor.  Dr. Jason Mishanlanie...I just love him!!  I would like to hear from you.  If you know someone or has had experience with neuro-feedback.  Please give me your feedback on the subject.  And remember no matter what you're going through, at this time, it will get better.

One Thing I know For Sure

My job puts me face to face with the community everyday.  I meet so many interesting, authentic, and loving people.  I feel blessed to be there.  And, many of the people are caregiver of one kind or another.  They could be Boomers taking care of an aging parent, a wife taking care of her husband who has been fighting cancer for the past 5 years, or a brother trying to find a place in the community for his  mentally disabled sister, and so on.  Well, last week one of our regulars came in to shop for books.  We've talked so many times before.  But, this time I could tell that something was weighing her down.  She told me that she has just retired and will be taking care of her 7 year old grandson while school is out for the summer.  She believe he is autistic and don't know where to turn.  She was in tears. I could see the fear on her face.  She is a loving grandmother and wants only the best life for her grandson.  I can remember that feeling of isolation and disbelief when my beautiful baby girl was diagnosed with moderate mental retardation.  So, I shared with her the one thing I know for sure; "no matter what you're feeling right now it will get better."

Never Give Up

So, it's been over two years and my daughter is 21 years old and has graduated from school.  The past two plus years have been a bit rocky for her.  The seizure activity increased and the type of seizure also increased.  She went from absent seizure to absent, myoclonic, acute repetitive, and grand mal.  She ended up in the emergency room several times because of acute repetitive seizures.  We put a baby monitor in her room so that we could "hopefully" hear when she was having a seizure (lots of sleepless nights).  We had to be do something.  So, against my better judgement we enrolled her in a drug study program using the drug Vimpat.  She has a history of  picking of the worst side effects from most medication she's taken and, this was no exception.  After several weeks on Vimpat the seizures were out of control.  She went to bed with them and woke up with them.  It was horrible!  We were having to rescue her (from seizures) six to eight times a month.  It was a very scary time for us.  So, needless to say we withdrew from the study.  But, we did find a great doctor in the process.   Thank you Dr. Le Roy!  Then, in December 2010 we started her on the all natural wholefood base program Juice Plus+; along with diet changes as well.  Juice Plus+ is 17 different fruit, vegetables, and whole grain that comes in capsule and chewable forms.  And, amazingly eight months after starting Juice Plus+ the seizures are 90% better.  We now rescue 0-2 times a month.  Can you believe it?!  We are soooo grateful!!  No matter how bad it seems...never give up.

I'm Back...

WOW...I can't believe it has been over two years since I've posted!  Well, during that time I was diagnosed with a chonic illness.  And, now, two years later the illness is in remission (Thank You, Lord!).  I needed some time to take care of myself.  You know how we do it...we take care of everything and everybody, except for ourselves.  But, that's a completely different blog (to come later).

Why Me?

Today is a chilled rainy day. But, it has been a good day for Symone and I. We went to the beauty salon this morning. After the salon we stopped by Applebee's for lunch. But, I can clearly remember when things were not so concise for us. Symone hopped from one daycare to another here in De Soto. We couldn't go to church as a family. We had to take turns. One Sunday I would go and the next Sunday my husband would go. But, I remember what her elementary school teacher told me. She said, "I know it's hard, but don't always leave her at home. Take her out with you as often as possible. And, don't be embarrassed if people stare when she acts up. Things will get better." One of the worst days of my life came when we got the grim diagnosis (Moderate Mental Retardation with a seizure disorder). Oh!...I was devastated. Though, somewhere deep inside, I already knew it. "A soft voice" spoke it to me many months earlier. But, this time someone said it out loud. I didn't even have the strength to go back to work. My ride home was a blur. I went to my room and cried myself to sleep. I didn't understand...why me?