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TAKE CONTROL TODAYI am not sure where else to post this but it has been one really devastating night.... seriously, one of the worst by far I think in my life... I am sure that will change in years to come but this is just heartwrenching. To give some information on yesterday (and the previous week) until now, this minute. Kaitlyn has been having a hard time, having alot of seizures... she's on Depakote now which scares the hell out of me but I finally got tired of watching her day after day have more seizures than the day before. I called the neuro back today to find out what to do and to let her know how the Depakote was, well it's working I think but not as well as it should. She is still having multiple seizures a day, mulitple ones a hour... so the neuro said that she needs to be admitted to the hospital tonight or first thing tomorrow morning... well that shouldn't be a big deal except that, that is in St Louis, we live outside of Omaha.... over 8 hrs away, and she has to be admitted until she is only havin 2 or less a day... Well, my husband is out of time off, so that would mean I would have to take both kids to St Louis and I don't know how to make that work, so I was sitting there stressing out about that, the doctor says we need to add another medication... Topomax. Grr.... Well anyway.... last night my dad's step dad passed away, I didn't know him but he's family one way or another... Then tonight as I am sitting there stressing out about Kaitlyn, money.... the $54 we have in our account until NEXT Friday.... and how on earth I can afford to get Kaitlyn to St Louis for the medical care that she needs, my mom sends me a text to call her at the hotel, she is in Indiana trying to get my dad on their transplant list because there is no way he can make it a year without a new liver.... well that's still not it.... I call her, but we are eating dinner so I told her I would call her back. I tried for awhile but the phone was busy. A hour or so passes, I finally get through and it's my dad crying.... more background info (I have these uncles that live in California, they are my saviors... I was in an abusive relationship and my parents were living in Iowa at the time, they came and picked me up from work one day, and said that they were saving my life if I wanted it or not, they took me to their house for the night, cooked me dinner and cried with me about what I had been through, they then took me to the airport and sent me to Omaha to meet my parents there... if it wasn't for them, I probably wouldn't be alive today.... with my wonderful family/life... well my uncles..... Lance is my uncle by blood, his partner Lee.... yes... yes.. partner.... well, he's always been around, he's been the voice of reason for my whole life... they are great, they both have AIDS and are aging... Lee had to retire and go on disability just a year ago this month....they send me jewelry whenever the going gets tough, Lee just had Lance buy me these 3 carate earrings for me because I was going through it with Kaitlyn... ) well anyway... back to my crying dad.... he tells me something bad has happened... that Lee died...... I am just broken.... I don't know what to do. Lance is there in California with no one now, his whole world is gone.... Lance's birthday was yesterday, Lee died yesterday but Lance couldn't bring himself to tell anyone or call anyone to come and get Lee. So up until this evening he had been laying there with Lee all night last night and all day today... I am just devastated..... I can feel his pain and there is nothing I can do to make it right..... I am worried about Lance, he said that he was supposed to die first, and that he won't take his anti-virals anymore. I am terrified that he is going to give up now. They were going through alot, they had a foreclosure on their house this year and are having a major struggle..... I just have a pit in my stomach and am really hurting......

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Thank you everyone for the prayers and thoughts and well wishes. It has been such a tough week or so for me and the family. Sorry I haven't responded. Kaitlyn is doing alot better right now, she hasn't had any seizures for I think 2 days or so. She is sick with a cold and is really run down right now but hopefully all that goes away quickly. Thank you again everyone.
dannyboy
Hi..I am so sorry to hear all of this that you are going threw. But i am sure you will make it threw. I will be praying for you and yours with all of my heart and things will turn out well for you and your daughter. Since she is having sz at a very young age and the doctors are finding a meds to help control the sz better she will most certainly grow out of it. Stay strong and remember you have friends who are praying for you and yours.
hxhxhxhxhx...dannyboy
emily, my heart goes out to you sweetie. i am so sorry about your loos of lee and I do pray that your uncle Lance will slowly heal with God's help. the passing of a loved one is so hard and stressful. everyone reacts different.
as for sweet little kaitlyn, i agree with jean, take her to the local hospital in omaha and have your doctor in st louis transfer her to st louis. do you have any relatives or friends that could take care of christopher while you are gone or would you need to take him with you?
let us know whats going em.
luv and big hugs,
sylvia
my heart breaks for you and your family. it is just too much at once.
i think jean's idea is a good one, to have kaitlyn transferred to the st.louis hospital. They may even be able to assist you in getting to st. louis, you and your son. is there a charitable group in your town, like Elks, Moose, some lodge of that sort, they are good people to help in an emergency when you just don't have the funds...
i am so very sorry for your uncles' loss..and yours. they sound like wonderful, caring people. i am sure he will be greatly missed. i hope you are able to find a solution that will work for you to get little kaitlyn the care she needs..
take care of yourself too.
you are in my thoughts,
kathy
I know that your first choice would be the St. Louis hospital but would your epi specialist allow you to admit her in your hometown and then give orders to have her taken by ambulance up to St. Louis? This is what we had to do with our daughter. Admitted here in Topeka and the driven up to Kansas City. (Which I know is a much shorter distance than what you are dealing with.) Maybe then someone could watch your son and you could ride up with your daughter in the ambulance? I know it is crazy, just an idea. Depends on insurance too I am sure.
You have too much to handle right now. Please make sure to take sure to try to take of yourself too.
Jean
Your plate is too full, my dear.
Hope you find peace, tranquility, and a whole lot of love NOW.
Hugs to you and your supportive family.
Missy, mom to Kevin
10 Years old,
Doose or MAE Myoclonic Astatic Epilepsy