Monday, March 3, 2014

Year In Review Part 2

This is part of a series covering 2013!  See Part One here

MAY
Went on the Embassy Tours.  One of the coolest things I have ever done!
Cole is super sick.  Attended two Derby parties, hooray for hats!  End up in the PICU.
Find out that one of our Dravet friends that we know personally earned her wings.
Did a lot of Zumba with friends. Got a chunk surgically taken out of my scalp.
End up in the PICU, again and then again.  We were basically in the hospital for three weeks in a row with only a few days break in between admits.  Total Major Seizure Count: 54

JUNE
Went downtown with some great friends.  Started a major obsession with the Library of Congress.  Found out I don't have Lupus, I have Fibromyalgia and Osteoarthritis.  Say good-bye to some of our dear friends when they move.  Why does everyone around here move constantly?!  Seizure control is null and void.  Having up to 16 to 20 TC's a day.
 Get pretty desperate and almost Life Flight Cole to Miami.  Instead, we take a risk, drug him up, pack our bags and drive to Florida.
 Stay inpatient for a week and do a major wean of Phenobarbitol while we are there.
 Total Major Seizure Count: 95

JULY
By divine intervention, Brian and Niki get to make it to Hawaii on a trip that has been planned for 6 months with her family.
There is a ratio of 3 adults to 1 Cole while we are gone.  7 Nurses switching off around the clock and help from friends who are salt of the earth.  It was Brian's first trip and Niki's return to "Home" where she used to live while going to school.  We jump off a 45 foot waterfall and try to have a good time even though we are thoroughly burned out.  Niki got a baseline EEG since it had been 8 years.
Slugger goes to 4 Paws for Ability for some refresher training.  We ended up in the PICU, again, while he is gone.  Had a 2 hour status seizure.  We start importing Stiripentol from France since we have tried just about every thing else under the sun.  See the list.  Total Major Seizure Count: 244

AUGUST
We take Cole to Seattle Children's Hospital.
 He has 6 TC's before we leave, 1 at the gate, 10 in the air, 2 at the airport after we deplane and multiple after we left baggage claim.  One of the most stressful days of my life.  He has muscle biopsy surgery to determine he has a Mitochondrial disorder on top of Dravet Syndrome.
 Our summer vacation was flying across the country, having 9 Dr. appointments and 1 surgery in 4 different locations in 5 days.  We even have sleep studies in two different facilities on the same night.
Cole is so drugged from the Stiripentol that he is Zombie-like and he doesn't have a nocturnal seizure, like we had been experiencing every night for almost a year.  It always happens that way :)  My sleep study shows I am sleep deprived.  I paid money for that?!  LOL
 Have a pistachio macaron at Pikes Market that I will remember forever.  Get to see some of our great Dravet friends.  Cole is having 30 to 40 big tc's every day.  Went on a night tour of the monuments.  It was perfect, highly suggest it.  Had an overwhelming display of love from family with "Cole Is My Super Hero" as the theme for our annual reunion.  Total Major Seizure Count: 176


7 comments:

  1. Am One of the happiest woman on earth since my son was cured from the problem of seizure,which he has been having for eight years now,he do have the attack two to three times a week,which is affecting is education and his life.i got the contact of a doctor from the post of one Mr paul thanking him for curing his seizure problem,i got the contact and contacted him then he made me to know that the medication is a permanent cure, and that was how i got the medication which i used on my son,and for six month now there have been no sign of seizure in him again.any one with such problem can contact him on his email drwilliams098765@gmail.com

    ReplyDelete
  2. WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.
    my son have been a patient of epilepsy . I had tried a lot of anti viral med prescribed to me by doctors over how many years now but I could not see any improvements in my son symptoms. One day while going through the internet , i got to know about this great Herbal Dr who uses his herbal remedies in curing people from epilepsy,quickly i contacted him and he prepared a herbal medication for my son which i received and he used it as instructed by dr williams. After few weeks the improvement were very visible. the sleepiness and the abnormal behavior stooped ,on thing now he is so full of life. I would recommend this to all my friends,families,around the globe suffering from epilepsy.you can contact him through his email on drwilliams098675@gmail.com.for advice and for his product THANKS TO YOU ONCE AGAIN DR WILLIAMS

    ReplyDelete
  3. Am One of the happiest woman on earth since my son was cured from the problem of seizure,which he has been having for eight years now,he do have the attack two to three times a week,which is affecting is education and his life.i got the contact of a doctor from the post of one Mr paul thanking him for curing his seizure problem,i got the contact and contacted him then he made me to know that the medication is a permanent cure, and that was how i got the medication which i used on my son,and for six month now there have been no sign of seizure in him again.any one with such problem can contact him on his email drwilliams098675@gmail.com

    ReplyDelete
  4. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DON FOR MY FAMILY.This information will be useful for Epilepsy patients who is willing to use herbal medicine. My daughter had temporal lobe epilepsy, She had seizure and had a grand mal with rage episode. Our daughter's seizure is constant throughout the day. We had used several medicine which include: Epilim and Keppra, experience seizure control at the cost of serious debilitating side effects. It was during a casual conversation with a friend that I learned about herbal Dr. William,who uses herbal medicine in curing people from epilepsy,i was so glad to contact him on his email and make an order for his medication, it does not have any side effect. I am so glad to say that she has been seizure-free since July 2015 after taking William medicine. this a miracle cure?contact him for more detail (drwilliams098675@gmail.com) thanks once again admin for such an informative blog.

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  5. I am Sophie from Canada, I once suffered from a terrible and Chronic epilepsy ,since i was bone , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this illness was really terrible especially when am going out with my friends, i have this constant disorder for about 31 years, this was really a terrible illness ,on thin one day that i was going through the internet,and i came across a post of Mrs Kate on how his son was been cured from epilepsy through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine i used it for 4 weeks as prescribed and i was totally cured of epilepsy within those week of usage,on thin now i have not experience any sign of seizure.if you need his help you can Contact this herbal doctor via his email drwilliams098675@gmail.com for help

    ReplyDelete
  6. My son started having seizures he had his first seizure at 6 year within 12 hours We spent 6 days in the hospital where different doctors looking at different things couldn’t agree on why he suffered a seizure… He has had genetic tests including a muscle biopsy. I used to wonder why my son were getting so many vaccinations shots at such a young age, Still the doctors wouldn’t admit it was the vaccination shots. After his 2nd seizure I wouldn’t allow my son to be vaccinated anymore but I believe the damage is done. It was during a casual conversation with a friend that I learned about Doctor Lawson Bryan i was so glad to know him on how his herbal product work, I contacted Lawson and explain everything to him and make purchase of his product. few days later i received the herbal medicine my son used it for 3 mouths i notice improvement in less than a month my son was totally cured of seizure now he have not experience any sign of seizure. Contact doctor Lawson Bryan on this + 1 (979) 475-5130 or e-mail dr.lawson52@gmail.com.

    ReplyDelete
  7. I am Shelley from Los Angeles,California, I want to testify on how i got cured from seizure, I have suffered from seizure since the year 2011 with so mush anxiety ,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the fainting and muscle spasms , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including seizure, at first i doubted if it we be able to cure my Generalised tonic-clonic seizure , but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from seizure just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from seizure you can contact him through his email on drwilliams098675@gmail.com for help.

    ReplyDelete

 
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