So I am sort of freaking out!!

So, I don't have long to write but Kaitlyn has to go to St Louis tomorrow morning (for those who aren't familiar that's about an 8 hour drive from us). So we are going to leave in the middle of the night to get there in time for our 11:00 AM check in. She has been having a lot of weird behaviors lately and way to many seizures. She has tried her 8th medication and that didn't go over to well but since she is on so many different medicines now it's hard to tell. So hopefully this VEEG will show something that is helpful for us...

Well I suppose that I was a little angry yesterday when I was blogging and I didn't mean to make anyone upset by it or cause any problems but I just felt the need to voice how bummed I was with how the site has become and just the lack of support and I was thinking about what Jan said about maybe everyone else is just having a hard time and just can't help right now, which that's a good point.

Well it's been a long time since I've done a blog... I've just spent a while going through and reading everyone else's blogs/posts and what not.... and I have to say I am utterly disappointed with what this site has become. Granted most of you probably don't think of me as a regular but I have been on this site well over a year now and from what it was then to now, it's just down right depressing. I was seeing some posts/blogs with people begging for someone to reach out and not a SINGLE person has said anything to most of them.

Hey everyone! So it was brought to my attention that I have vanished without a trace... I am still here! Thanks for wondering about me! A lot has been going on here lately so catch up all of those who follow Kaitlyn and all of us...

So I haven't written on here in awhile because getting on the site and being able to do anything has been such a pain I log off when I get frustrated. Anyway...

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We got Kaitlyn's disability interview done yesterday. It wasn't as bad as what I thought it would be. The lady was impressed that I knew so many exact dates of things. What can I say, I have to know and remember everything otherwise it drives me nuts. Anyway, it's sort of a slap in the face back to reality when I am telling her everything about Kaitlyn, and then reading the fax that her doctor sent for the interview. Here is what it said: To Whom It May Concern:

So tis the season to appreciate the small things in life that we tend to overlook and really show one another that you love them. We have spent so much time the last 6 months or more wallowing in self pity for everything that was going on with Kaitlyn and feeling sorry for what life might have in store for her. And to add to all of it, Nic got hurt and hasn't been able to work, let alone bring in overtime and side job money and we were stressing out about it. Then all of the sudden, we realized just how much we were grateful.

I haven’t been able to get on here in forever so I figured that I am way overdue for a new blog. A lot has been going on lately and it seems like it’s never going to end or calm down.

So it's only Tuesday and I am ready for Friday, well not really... but still. Nic had his wisdom teeth pulled today, so he's out of commission. Poor guy. Anyway, Kaitlyn's been having a wild amount of seizures everyday. So after...

So Kaitlyn has been sick for over 2 weeks now with RSV, a double ear infection, a UTI, and a yeast infection from the antibiotics to treat her double ear infection. Before she started to get sick her seizures had started to increase...

So this is the first month of RSV season and Kaitlyn and Chris both have it. Kaitlyn has it horrible. We are thinking about taking her back to the hospital because she is getting worse as the days go on. Not good, not good at all....

I've been on here but not really active the last few weeks. I don't know what is going on. I'm just sort of out of it right now. I miss all of you and all of the chatting though so I am going to try and be around more. Kaitlyn...

So alot has been going on and it just keeps adding on. Christopher had his 24 hour VEEG done on Monday morning and let me say, it was a JOY. Seriously though it was the most piss poor hospital stay/staff I have ever seen and I have...

I 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...

I don't know what it is about the way that Kaitlyn looks but it's not right. She started Depakote on Thursday, it was a double dose to bump her levels up but I am really wanting this to be the medicine that works. These "episodes"...

Today has just been dragging on, it seems like an eternity when in reality it's only 4:00 PM. Kaitlyn has been so upset lately, not herself and flying into rages out of no where. For months now I have convinced myself that she doesn't...

So Christopher saw a new neurologist that we haven't seen before and she was impressive. She was very nice, helpful and reassuring. I really liked her. I was thinking about having Kaitlyn see her but I am worried that she might...

It is 9:00 PM and both of my kids are asleep!! I am loving it. They normally don't go to bed until 11:00 PM or so. We can try to get them to bed before but they never fall asleep and it's a huge battle. This is so nice. To have...

Sometimes I wonder why one person or one family can get bombared with so many bad things and there are families who aren't even touched with stress or pain. How does "the man" decide who gets dealt the shitty hand and who gets...

I am really depressed today, this week....everyday. I have been calling Kaitlyn's neuro for 2 weeks a few days now. He finally called me back about the side effects that she had been having from the Trileptal. He wants us to stop...

So Christopher had his EEG yesterday. The same ladies that did Kaitlyn's 24hr EEG did his sleep deprived one. They are really great there. They remembered us and remembered Kaitlyn. They seem to care which is alot. The place...

I can't remember the last time that I posted on here, I don't remember if it was after we found out a solid diagnosis for Kaitlyn. (Well as solid as they get). If not, I will post that too. We found out on 7/31 that Kaitlyn is...

Today was the first day that I cried for Kaitlyn and the diagnosis of Epilepsy. Today was the first day that it all hit me. I have been online everyday looking up information on Epilepsy and learning everything that I could. I have...

So we took Kaitlyn to a new neurologist on Friday the 6th, and he was goofy looking and different but a great doctor. I really liked him. He was very reassuring and really seemed to know what he was talking about. During the time...

So Kaitlyn started the Zonegran on June 14th, for the most part there weren't any side effects that we couldn't deal with until the rash started on her legs. We stopped the medicine cold turkey on June 24th and she has been having...

So I spoke with Kaitlyn's doctor on Friday, late afternoon and she said that she doesn't think that the Keppra is working and that her bad attitude if from the Keppra, not the terrible two's. If it was the terrible two's it wouldn't...

So I think I spoke too soon about how good she had been acting. We have had two horrible days in a row now. I mean these days are bad, nothing we have experienced yet with her. All yesterday she was grouchy and just out of sorts....

Today was the first day that we have had a good day with Kaitlyn since March. At the end of the night I just realized how good of a day it was. Ever since the first seizure she has been upset and just hard to console and today she...

Some days it all get's to be too much. I have been reading a little bit to much lately it seems. I don't know if I should take a break from figuring this all out or if I am on to something. When I spoke with the E Specialist last...

So on Friday at 9:00 PM we started the Keppra again. We started with a smaller dose then last time, but I think that she could handle the larger dose, oh well the doctor knows best. So far so good, she has been having some behavior...

Half way through the day I decided that I would call the Neurologist back because Kaitlyn was having a rather rough day. She woke up at 5:00 am and was screaming and upset, pretty sure that she had another seizure. The rest of the...

So we have had 2 of the worst weeks with the kids this past 2 weeks. Last week starting on Monday Kaitlyn started running a fever, I was constantly hoovering over her to assure that she wouldn't have a seizure and if she did I would...

So Kaitlyn had another seizure today, I was really thinking that maybe just maybe she wouldn't have anymore and that when we went to see the E Specialist she would say that it was an isolated incident and that she would be fine. ...

I haven't writting on here for awhile, not much has changed. Kaitlyn hasn't had any big seizures, she's had a few space out episodes and I think that she is having some in the car. Not sure though. I am hoping that this doctor...

I'm so happy, I don't have much time to write but we got in at St. Louis. May 17th!! I can't believe it, I feel so much better to know that Kaitlyn will be in better care now! I'm relieved! ...

So I am very relieved that we got the refferal to get the second opinion for Kaitlyn, but now our neurologist here still hasn't faxed the paperwork to the new one in St. Louis. I don't know why they would take so long, they just...

I don't know what it was with today, maybe that I am feeling like I am running out of options and am failing her. Or it's that she's having a bad day and that's just making me think of everything that's going on with her, in...

So we got the results from Kaitlyn's MRI, everything appeared to be normal. So all of the tests are coming back normal which is good but in a way upsetting. We just want some answers and need to know what we are dealing with. I...

Well today Kaitlyn got the MRI done, we are waiting for the results now. Imagine that, ever since her first seizure it seems like we have done nothing but wait! Well the MRI went ok, the sedation wasn't so pleasant for my...

So I am just waiting for Kaitlyn to get her MRI on Thursday at 6:15 AM! Geeze, it's early but hopefully she will handle it well. I am so nervous, I just want to find out what is causing the seizures. We haven't had any for a week,...

So I am trying to get Kaitlyn seen by another neurologist but I am having no luck. For some reason I can't get her seen by any other hospital here, the nurse told me that they don't take referrals from our ped's because the neuro...

So just a little bit about me, I am a 22 year old stay at home of 2 kids under 2. My oldest Kaitlyn will be 2 in May and my youngest Christopher is 7 months old. I stay home because Kaitlyn was always getting sick when she was in...