This is part of a series catching up on 2013! See the other posts here:
Part 1 and
Part 2
SEPTEMBER
Cole doesn't start school on time. He is just too unstable. We see a Integrated Medicine doctor. An MD, that also practices natural medicine. She has a theory about my adrenal insufficiency. Cole finally makes it to school.
We LOVE his team! We totally know what it is like to not have a support system at school and consider ourselves so incredibly lucky to have the amazing people here. He really struggles and has to start wearing a bib in September that has to be changed constantly because of the drool.
I even send him to school in his wheelchair when he can not hold up his head or walk.
Has not been eating at all for a few months and has been solely tube fed. Sometimes it is nice to have breakfast where super hero gear is mandatory.
Made a custom letterpress invitation for Gourmet Club. Find out I need double knee replacements. Start 6 weeks of collagen injections under my kneecaps. I am a huge fan of Lidoderm patches, even if you run out of regular Co Flex and need the dinosaurs to keep them on ;)
We continue to explore treatments for Cole. He is really struggling.
Government Shutdown starts. Total Major Seizure Count: 273
OCTOBER
I am asked to give a class on Style for a group of young women.
I go to New York for a conference. We get adorable family pictures taken by my
talented friend. Celebrate Slugger's birthday with a trip to Cox Farms.
The light goes out of Cole's eyes and he is zoned out for over a week.
I host Eat, Drink and Be Scary! Had so much fun with my theme this year. Glowing green ice cubes, dry ice, all sorts of fun and fantastic food.
Cole pulls out his g-tube. That makes my heart race more than any seizure nowadays. Cole is on antibiotics. School is like a petri dish. I break my foot, nothing they can do about it. It's Diffendoofer Day at school. I take Cole to the zoo. Decide to take Cole off of all benzodiazepines. He is a full blown drug addict. His body constantly searches for the next "hit" and ends up having more seizures because of it. Long story short, rehab at home is not fun. Realization that the hospital just can not help us any more is difficult. I start seeing a doctor about losing my hearing and
Tinnitus. I will probably write more about that later, maybe...don't hold your breath :) We are Super Heroes for Halloween.
Meet Captain Canine, Super Cole, Tiger Mom and Dad...who doesn't need a secret identity. Total Major Seizure Count: 200
NOVEMBER
Fall weather is perfect. The leaves are amazing. Cole gets sick again. More antibiotics. We start dealing with thrush as a side effect of not eating and drinking by mouth. We go to the Newseum. Fall baking is in full force. Cole starts having cycles of "good days" and "bad days". 6-9 days that are almost seizure free, then 3-4 bad days where he can have 60+ major tonic clonic seizures in one day.
We are just grateful. Even though the bad days are really bad. The good days are good and he can recover. Before, he was having bad days, every day and was regressing because his brain and body never had a break. Cole stops having nocturnal seizures every night. Only when he is in "cycle". After 7 months of fighting with Medicaid, we get 16 hours a day of nursing. Totally changes our lives, since we can now have night nurses. We are getting to see glimpses of our little boy coming back.
Total Major Seizure Count: 257
DECEMBER
We have ice storms and more snow than we know what to do with. DC seems to panic and shut down every single time there is a storm. I get cortisone shots in both knees so I can play tourist with Grandma and Grandpa when they come for an early Christmas. We eat a lot.
Don't get to go home for Thanksgiving, Christmas, New Years, birthdays, baptisms or Grandma and Grandpa's
LDS mission farewell. However, Christmas Day is fantastic for Cole and it is the first holiday ever in 6 years that he has enjoyed and was able to participate in traditions. Best day EVER!
Mom gets hearing aids for Christmas. They are actually quite small and blend easily. You can see here where I have a top knot, you can still hardly tell they are there.
Again, I will probably, maybe write about the emotions connected to this. Total Major Seizure Count: 204
All in all, we had an absolute whirlwind year. This is the major Reader's Digest compact version, with a lot of holes. Sometimes it is amazing to take a step back and realize how much can change in twelve months. All that matters at the end of the day is we are trying our best. I still get to snuggle this little guy who is not so little any more! He is a true warrior and makes me want to keep fighting, even when it seems like I don't have the strength.
Niki, it was so good to see some updates :)!
ReplyDeleteYOU ARE AMAZING!!!
I can't imagine dealing with the severity of Cole's seizures and your own health issues on top of everything else.
And yet it looks like you are still able to have a little fun :)
I hope that things turn around for you guys soon. Sending prayers and love your way.
Always thinking about you and praying for you every day. Hope we get to see you soon! Love, Ashley
ReplyDeleteAm 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
ReplyDeleteWOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.
ReplyDeletemy 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 drwilliams098765@gmail.com.for advice and for his product THANKS TO YOU ONCE AGAIN DR WILLIAMS
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.
ReplyDeleteI 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
ReplyDeleteMy 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.
ReplyDeleteI 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"With Dr Williams,herbal medicine I felt very empowered after my son started his medication and the results came very quickly I might add. Contrary to what my doctor had recommended for my son, (that epilepsy have no permanent cure) I have succeeded in less than 4 weeks to treat all the symptoms associated with my son epilepsy (including the anxiety , and the abnormal behavior ) and within 4 weeks, my son epilepsy was completely gone. Thank you so much for this terrific publication. I also my son have recently experienced a symptom-free of headache , which was nothing short of remarkable, considering the awful state my son was in before I was introduced to dr williams life changing medication,for more information on how to get his medicine you can email him in drwilliam098675@gmail.com
ReplyDeleteALL 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.
ReplyDeleteDr Williams,his medicine was extremely helpful to my daughter. I have had a daughter with epilepsy for 17 years now , and my doctor have prescribe me with different kinds of western drugs without no improvement in my daughter symptoms . I am so glad I have found Dr Williams medicine (as I was surfing the net for a solution and saw a recommendation for it on a women's health forum early this year). I have felt so empowered by the knowledge you have given me and I quickly self diagnosed the individual cause of my daughter epilepsy and armed with his clear instructions, I was finally able to beat this monster, in less than 4 weeks of using dr Williams medication on my daughter. she went for a checkup and it was clear that my daughter epilepsy were gone,you can also email him on drwilliams098675@gmail.com for help.
ReplyDeleteThank you, thank you , thank you. dr williams
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
ReplyDeleteCURE TO EPILEPSY WITHOUT ANY SIDE EFFECT: My son was diagnosed with epilepsy. My son epilepsy was something i don't understand he cry so bad that he was usually in bed for about 8 hours and soreness killers (even prescription strength) don't stop the crying (except taking him out) even if he take triple the dosage. my son symptoms was really so bad,that we have to make hospital our home, and all the doctors would do is monitor it, prescribe him countless of control pills and pain medication with no positive result. until recently I contacted a Doctor who put an end to this problem. If you are having same problem with epilepsy son contact Dr. William for advice and possible solution without any side effect (drwilliams098675@gmail.com
ReplyDeleteJust wanted to say a huge thank you to Dr Williams for everything he have done in my life. I have been in tears for so many years now, having found that my only son is suffering from seizure, lesion after some years of being under extreme stress., . I spent 24 hours freaking out and finally calmed down after reading some testimony on here about Dr Williams herbal medicine to seizure. The moment came and I mumbled out to my husband about Dr Williams product (with a few tears) and he was AMAZE – . He was just worried about our son been free from this disorder that was how will order for Dr Williams product on line , after my son finish taking Dr Williams medicine for just within a period of one month. Will went to the doc together who confirmed that he was seizure free.
ReplyDeleteThank you again for being upfront, truthful and taking this pain away from my family for more information about his product you can email him on drwilliams098675@gmail.com i hope you can also help other terrified people in a similar situation.
With Dr Williams herb i was completely free from epilepsy.You are an amazing doctor.Matching diagnosises aside, I just want to be your friend. Lol You inspire me on a feminist level. On an intelligence level. you are a good man doing so much for mankind, level.Thank you for being you.For keeping a lot of us . For reminding us that we aren’t a fucking statistic or a status, we are still PEOPLE. With brains and personalities and jobs and lives.I’ve been diagnosed for so many years now with epilepsy, and the roller coaster of emotions is all too real.I’m sure I speak for everyone here when I say thank you. From the deepest part of my soul. THANK YOU.You give us all an indescribable level of comfort and absurdness in sharing our diagnoses and, almost a green light to continue to celebrate our lives,for you always been there.For every jerk who throws you hate, there are hundreds of us thanking the universe for you.for more information about Dr Williams product to epilepsy you can email him on drwillliams098675@gmail.com
ReplyDeleteThanks to Dr Williams I am so happy today, my wife have been suffering from epilepsy for so many years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to get my wife out of this , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after she took his medication as instructed, my wife is now completely cure from epilepsy within one month of usage, i am so much happy, thanks to Dr Williams for helping me get my wife life back again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have someone with epilepsy you can email him on drwilliams098675@gmail.com for more information .
ReplyDeleteI 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
ReplyDeleteALL 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.
ReplyDeleteAm 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 was affecting his education and his life.i got the contact of doctor Williams 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 on drwilliams098675@gmail.com for more information.
ReplyDeleteI 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.
ReplyDeleteALL 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.
ReplyDeleteNATURAL & EFFECTIVE TREATMENT TO SEIZURE
ReplyDeleteI am happy today that my son have been cure from seizure, which he had for 10 years now, he do have the attack five to seven times a week, which affecting his educational system and his life. when i was going through the
internet i come across Owens post thanking Dr Lewis hill for curing his
seizure problem, and i got the contact of Dr Lewis hill i quickly contacted
him then he made me to know that the medication is 100% cure, and that was how i got the medicine which i used for my son, after which i took my son for medical test It worked! Over a year now, my son have not show any symptoms of seizure and I believe my son is cure if you need his help email him via whatsapp +2349052644543