Madisen's Share Site

Welcome to our site where you can stay updated on how Madisen is doing. We will try to update weekly. We have been on this recent journey with Madisen since December 2nd. It's been a tough ride, but we are blessed to still have her with us today. "Thy will be done." Our journey began when Madisen came home from school on Dec 2nd sharing she had a bad headache, dizziness and was very tired. We later learned this had been going on all day at school. She wanted to take a nap at school rather than go out for recess. This was not the Madisen we knew and loved! A visit to the ER on the 3rd sent us home with a diagnosis of "it's probably viral. Wait it out." Her symptoms stayed consistent until early Monday when she had a Grand Mal seizure. She was transported by ambulance to the hospital where she was put on Phenobarb to calm her brain and hopefully get the seizure to stop. After 4 days we were transferred to Sacred Heart Medical Center where they put her into a drug induced coma. This was done for 12 weeks with 3 attempts to wake her up, all resulting in seizures as the level of drugs were reduced. An incredible list of drugs were used during this journey to control the seizures. Some unusual drugs were used with mixed results. We are now in our 20th week and she is awake, alert, but with many challenges ahead. We just found out last week the seizures caused significant brain damage in the short term memory, language acquisition, emotional & behavorial categories. We are working hard on rehab to get her physically back in shape as well as the cognitive issues she faces. We have been in great hands with the professionals helping Madisen get better. Still no diagnosis to this day as to the cause. We are blessed to be home in Spokane with family, dear friends, and many we don't even know supporting our family. Thanks for all your caring, support, and prayers.

Journal

Monday, January 5, 2009 10:32 PM CST

Happy 14th Birthday sweet Madisen! We send TONS of hugs, love, and kisses to heaven for you!

Today Mark, Amanda, Cassie, and I went outside with 14 helium filled balloons to be released in celebration of Maddie's birthday. Only problem was I had them filled last night since we set the time for release at 7:00 am - Cassie had to be dropped for babysitting at 7:30 and Mark & I would be off to work thereafter. (School was cancelled today due to the incredible amount of snow we have and no sidewalks are exposed, leaving people standing in the street waiting for buses and kids walking in the streets to get to school. CRAZY winter!)

We woke up this morning and only 1 1/2 balloons were even still floating. The only 12 were half deflated. We all laughed at what to do to get them to float to heaven. We decided to still write our personal messages on the balloons and give it a shot. We stepped out of the garage and into todays snowstorm (every other day occurence lately). The first ribbon was snipped and off the balloon went to about 8 ft off the ground, gently floated over to the neighbors and just hung there. The next 12, one by one, ribbons were snipped and they plummeted to the snow covered ground. Finally the last one, the strong yellow one was released and headed off to greet Maddie in heaven. Happy Birthday precious girl!!

I took a picture of the girls with the 12 balloons laying on the snow. Cassie tried to give them a little help with her snowboot and get them into the air, but it was a 'no-go'. They were destined to stay with us and create a fun memory on a emotional day.

My heart was deeply touched with the news of Jett Travolta's death this weekend. (John Travolta & Kelly Preston's 16 yr old son) Because he died of a seizure and had almost lost his life at 2 years old, I felt such a strong connection with the Travolta family. We both had gone through near-tragedy when our precious babies were very little and yet were blessed to have them with us for many more years. Years filled with incredible memories that will hold us strong for the rest of our lives. We are forever better people for having had them in our lives.

Both kids (Jett and Maddie) were special needs kids. Whether it be deaf, autistic, seizures...it doesn't matter - they drill their way into your hearts to forever leave their mark. I feel that both of our families were given a second chance with our children, blessed to have many more years of laughter and memory making. There is talk of the Travolta's not giving him seizure meds due to their Scientology beliefs, but I will tell you we gave Maddie all the meds that were available to beat this nasty disease (epilepsy) and yet she is gone from us, just the same as Jett. We all have a time when we will leave this Earth, we don't know when, we don't know how...but it is up to us to decide how we will live this life. Let's live it to the fullest!!

Live, Laugh, Love

Hugs and blessings to all!
Kim, Mark, Amanda, Cassie (angel Maddie sends hugs too!)

E-mail Author: kimarks2@comcast.net

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