|Posted by Haley's mom on March 19, 2011 at 3:34 PM||comments (0)|
Haley's school physical therapist has given Haley this bike "on loan" to try for awhile. Yesterday was her first time out. She did so good, with the exception of heading for drainage ditches on occasion. But her face shows her happiness beaming, ear to ear! I apologize for th...Read Full Post »
|Posted by Haley's mom on March 18, 2011 at 8:44 PM||comments (4)|
After years of talking about the elusive drug, Stiripentol (Diacomit), we finally have it in our possession!! It has been a long and involved process to secure the drug and have it fully funded for Haley. We pray that it will give Haley some relief from the almost daily generalized tonic clonics that she has been experiencing lately.
We...Read Full Post »
|Posted by Haley's mom on March 18, 2011 at 8:30 PM||comments (1)|
The Lancaster School SCA presented Haley with a check for $800.00 in her honor. The SCA hosted a "Social" for their classmates with the Haley Smith Fund as the charity of choice for this year. Mrs. Tara Booth stated that in her nineteen years of holding a fund raiser of this sort, this is the largest amount they have eve...Read Full Post »
|Posted by Haley's mom on March 10, 2011 at 7:03 PM||comments (1)|
Everyone's journey is different with this syndrome. We traveled a long road full of hope that Haley would out grow her seizures and be a "normal" child. "If only we could get the right mix of medicines then the seizures would be less,...then for sure she would be 'normal'", is what we thought. That is what I can remember from the good days when Haley was young and we had no official diagnosis.
I know some of my family members were upset that the diagnosis for Hal...Read Full Post »
|Posted by Haley's mom on March 9, 2011 at 4:22 PM||comments (0)|
I am constantly humbled by the members of our community that want to reach out and help Haley. Today a friend shared a website that they created to help us reach our goal of $30,000 for Haley's research goal. The website is called "Miracles Happen" and the link is www.cafepress.com/jesusfulmiracles
Please check out the link and see all the goodies that you can purchase to Help Haley's cause!Read Full Post »
|Posted by Haley's mom on August 20, 2010 at 8:40 AM||comments (1)|
When you were born, Haley, I had dreams of my life with my little girl. However, those dreams were soon shattered and replaced with new visions and dreams that were never on my radar screen. I mourn the loss of those dreams, hopes and wishes, but through the mourning I have found strength. In the past decade I have complained to the “powers-that-be” on occasion that THIS was NOT part of my “Mommy contract”, but my cries have fallen on deaf ears. But now reflecting back...Read Full Post »
|Posted by Haley's mom on March 6, 2010 at 12:30 PM||comments (2)|
We are in the process...or should I say, we have always in the process of remodeling here. Such is the life of being married to a builder. Like the cobblers children, we are the last on the list to get our work done. Anyways, we are getting ready to do a major rooms change. Haley's brothers, Peyton and Parker, are going to move into Haley's room and Haley is getting a new room. (Hopefully we can add some theraputic element to it)
Today I ...Read Full Post »
|Posted by Haley's mom on January 20, 2010 at 9:57 PM||comments (2)|
Well the last post on December 2, 2009, we had gone those five days without a seizure. I don't think it was more than an hour after I finished typing, I was sitting in the glider rocker waiting and boom, there is was the seizure we were expecting. Since then we are lucky if we have gone more than one day without a seizure.
We went to the neurologist on Dec. 15th and it was decided to do nothing at this time. We looked into Vimpat, another new seizure...Read Full Post »
|Posted by Haley's mom on January 20, 2010 at 9:37 PM||comments (1)|
We have been so blessed by our community's support and generosity over the years that we have decided to start a research fund in Haley's name. In the last two years since we went public with our family's struggle with Dravet syndrome we have received a great outpouring from so many individuals. Initially it was David Nova and Team Marlin Maniac who put Haley's picture and the IDEA League logo on the side of his Fountain Boat. He has been so generous with a donation of a por...Read Full Post »
|Posted by Haley's mom on December 2, 2009 at 8:23 PM||comments (0)|
Wow, I am on pins and needles waiting for the next seizure. It is awful to say, I know, but when they have been coming with some regularity, it is hard not to expect one. It has been five days since her last seizure. She had two on the Friday after Thanksgiving. Now here we are Wednesday and no seizure activity.
What has changed? We finally finished the wean off the Banzel. Monday night was her last 50 mg dose. We thought that...Read Full Post »