So I want to start off by saying this is going to be an all out post about my feelings, etc. It's probably not going to be pleasant but I can't say for sure where this is going to go. I know that I have many thoughts in my head and I need to let them out. So I am just going to type and we will see where we end up.
So first I am going to go back to Jan of 2010 after Lily had her second seizure. It was then emerging that her December seizure was not just a one time deal. These two seizures both happened at night. Well I have always been a heavy sleeper, so this obviously terrified me. So the three of us began sleeping in the living room. On the floor. I felt that this way I would be far to uncomfortable to sleep to deeply. It didn't work. When she had her seizure in April, Tracy was the one who woke up. This is a guilt that eats me up, never mind that she was on his pillow with her face pressed right up against his. Never mind the fact that as soon as he said my name I was up and running. he has told me numerous times that he thinks I was waking up when he called my name. Some things as parents we cannot forgive ourselves from doing. That is mine.
So now we will jump back to the present. After Lily's last seizure with the time change, we are once again in the living room. Not on the floor this time. Tracy and Lily are sleeping on our sofa bed and I am sleeping in the chair next to them. Once again my theory is that if I am uncomfortable I will not get in a deep sleep. And so far it is working. I wake up about once every hour (I can see the clock from my chair) and check on her.
However, I can't sleep. Not until late. I believe I have been averaging about 3-5 hours of broken sleep every night. So every day I am never getting things I need to get done, done. I have appointments for both the kids I need to make, paper work I need to finish filling out, a non-profit org that is in the making that needs my attention, etc, etc. Oh and don't get me started on the laundry! Now we all do get fed, so do the animals, etc, etc, but then I feel bad because I am not getting my other things done. I know I am not Super Woman, but the guilt likes to grab me and hold me tight sometimes.
You would think that after waking to Lily having a perfectly silent seizure I would be more confident that I will wake when she has the next one. But I think that one in April really knocked me for a loop. I know that I am just human but when it comes to my kids "being human" isn't an option.
I tell you a little secret, when I think back to any of Lily's seizures I see her eyes as blue. For those of you who have never had the pleasure of meeting my wonderful girl, Lily's eyes are brown. The only reason I can come up with is (and this is from my two semesters of psychology lol) that I am trying to disassociate the seizures from Lily. but why blue? Why not green or hazel? Blue is my favorite color so I really don't get it!
Any little movement she makes and my heart starts to race, only very late at night. And that my friends, is very silly. Lily rarely moves during her seizures. Number one reason I HATE when she sleeps on her back. She can be very stubborn when she is asleep. I move her onto her side and pretty soon she is back on her back again. C'mon kid, work with me! lol
I am so afraid for my little girl. And mad. No I am pissed! Why do things like this happen to our blessed little children who have never hurt a soul in their lives yet crazy pure evil people walk among us totally unscathed. And before anyone says life isn't fair, lemme tell you that phrase doesn't even begin to cover it. I don't however, blame God or a higher power. There is no blame here. I guess that makes it even harder to deal with the anger. Where do you go with it?
Tonight I will probably join them on the sofa bed but I will stay sitting up, my hands clinging to my daughter's chest. My own type of oxygen monitoring.
There are times that I feel that I am going to drowned in a pool of what if's. People say you can't think that way. Unless you are in this position you don't understand that you can't escape it. The what if's creep out of the deepest recesses of your mind and plant themselves firmly in the forefront before you even know what is happening. While it is a heavy burden to bare the what if's can at times help you prepare for things. But there are what if's that are just so terrible you can't even stand to face them, even in the darkness of your own mind.
So there it is, my thoughts and emotions laid raw before you. These are my thoughts at night when I am alone. During the day I do have these feelings but once that sun sets I get those butterflies in my stomach and it is all downhill from there. Thank God it's summer and the days are so much longer!
Thank you for reading.
Wednesday, June 22, 2011
Friday, June 17, 2011
A hated new twist or damn you Epilepsy, damn you!
So come travel back with me to the morning of Thursday, June 16th. I wake up in bed with my arm around Lily. I notice next o her it's wet. Well that's odd, I think. She has only had maybe one or two accidents in the past year. So I glace at her and see that she is holding the headboard (we have a metal sleigh bed frame), so I think ok she's awake. I pop up to say hi to her and what do I find? Her other hand is frozen halfway to the headboard and her eyes are wide open and unblinking. Yeah, she was having a seizure! I called her name twice to be sure (yeah I know, but you gotta understand she has only ever had seizures at night, within an hour of falling asleep. NEVER EVER any other time, so I was in a bit of shock and disbelief.) So of course I don't have a phone upstairs with me because that would just make waaaaaaay to much sense. So I dash downstairs, grab the phone and dash back up. I guess. I can't remember seeing the kitchen (where the phone lives) or the steps, etc. I just remember being gone from the room for a moment and then being back with the phone. Funny what your brain does in an emergency situation. So I call 911 while peeling her tightly gripped fingers off the headboard. I carried her downstairs (no easy task, her body was stiff as a board! Something else that was new!). I put her on the floor and yelled to CJ to hold her on her side. He couldn't understand why. lol Poor kid had been asleep and had no idea what was going on. So I said she is having a seizures and dashed into the kitchen to get her Diastat. I gave her the Diastat and just a pair of minute later our wonderful guys (the Green Emt's) walked in. 20 seconds after that Lily's seizure ended. About 5 minutes if I did indeed wake up when it first started. Unfortunately we will never know. I can only hope that I did.
So what's this all mean? Well, first Lily has never ever had a seizure in the morning. 2. What's up with this stiffness? That has never ever happened. Not constant. I mean she has had one or two seizures that she has gone stiff for a few secs and then back to limp but never for the whole thing. So ok we got new stuff. So the good points, no vomiting, no hyperventilating, she breathed fine through the whole thing (I bet a whole bunch better than I did!!).
So what's the same? Still was a partial complex seizure and was still related to sleeping, in one form or another.
So here's the deal.....I want her to have another EEG. I understand that they are the same type of seizures and still related to sleep but but but the presentation was different as was the timing. So something is changing. Why am I telling you this?? Because her Neuro doesn't feel it is necessary at this time. It has been over a year since her one and only EEG. Things do seem to be changing and guess what?? I want another one.
So here's how its going to roll. On July 11th, Lily has an appointment with her Neuro. If she will not give Lily an EEG then I am sure the Cleveland Clinic will be more than happy to. End of story. And if the EEG comes back and nothing has changed, then her Neuro is more than welcome to dance around and sing I was right, I was right. lol
And Lily? Well she is good now. She actually had been doing really good in the ER after a few hours of sleep. She was finally up, talking, we all had her laughing, then her hands started to tremble. They were just getting ready to send us home too. But at that point they said let's keep her overnight. So we stayed and she did fine. We are home today and she is back to her normal self.
Tracy and I? Yeah, we are jumpy as all get out. With this new timing twist, well it's gonna be ugly for awhile. September cannot get her soon enough to get her seizure alert dog!! If she continues to follow her breakthrough pattern, the dog should be here with us at least a month before the next one. But epilepsy is a fickle disease and it is very rarely predictable. So we will just have to keep our fingers crossed and live without a lot of sleep!
Thank you for reading!!
So what's this all mean? Well, first Lily has never ever had a seizure in the morning. 2. What's up with this stiffness? That has never ever happened. Not constant. I mean she has had one or two seizures that she has gone stiff for a few secs and then back to limp but never for the whole thing. So ok we got new stuff. So the good points, no vomiting, no hyperventilating, she breathed fine through the whole thing (I bet a whole bunch better than I did!!).
So what's the same? Still was a partial complex seizure and was still related to sleeping, in one form or another.
So here's the deal.....I want her to have another EEG. I understand that they are the same type of seizures and still related to sleep but but but the presentation was different as was the timing. So something is changing. Why am I telling you this?? Because her Neuro doesn't feel it is necessary at this time. It has been over a year since her one and only EEG. Things do seem to be changing and guess what?? I want another one.
So here's how its going to roll. On July 11th, Lily has an appointment with her Neuro. If she will not give Lily an EEG then I am sure the Cleveland Clinic will be more than happy to. End of story. And if the EEG comes back and nothing has changed, then her Neuro is more than welcome to dance around and sing I was right, I was right. lol
And Lily? Well she is good now. She actually had been doing really good in the ER after a few hours of sleep. She was finally up, talking, we all had her laughing, then her hands started to tremble. They were just getting ready to send us home too. But at that point they said let's keep her overnight. So we stayed and she did fine. We are home today and she is back to her normal self.
Tracy and I? Yeah, we are jumpy as all get out. With this new timing twist, well it's gonna be ugly for awhile. September cannot get her soon enough to get her seizure alert dog!! If she continues to follow her breakthrough pattern, the dog should be here with us at least a month before the next one. But epilepsy is a fickle disease and it is very rarely predictable. So we will just have to keep our fingers crossed and live without a lot of sleep!
Thank you for reading!!
Wednesday, June 8, 2011
You CAN fall in love in three days time!
Oh yes you can. Now you may wonder why I say that. Well, this is most likely going to be my longest (and most typo-riddled) blog post ever! So grab some snacks, smoke 'em if you got 'em and get ready to do some serious reading!!
You can fall in love in the span of three short days....I know because I did. Madly, deeply, crazily in love. My love spans this country and the globe! I looked into many eyes this weekend and I will tell you what I saw......intelligence, understanding, love, and many bright beautiful spirits! Tell me, if you tomorrow awoke to find that you had lost the ability to speak, to move your arms and legs, etc. would you still be able to communicate? I think not. But I found this past weekend the children with canavan can still communicate! They do so with their eyes and they touch your soul! If you ever get the chance to meet a child with canavan then I implore you to do so. I think you would be amazed at these wonderful children.
Ok so now we are going to take a trip in the time machine to Saturday May 28th. Around five o'clock that evening Lily developed a fever of 100.6. Not too high, but any fever is too high when you have epilepsy. So I gave her something for the fever and it went back down. However, soon she started complaining that her ear hurt. So I called the nurse and she told me to take her in to be seen. So I did and she was diagnosed with an ear infection. We were given an Rx and off we went. We filled the rx and came home. Lily fell asleep on the ride and I noticed when I put her on the couch that she felt really hot again, so I took her temp again. 102.4 under the arm and I was not supposed to give her anything again for the fever for another 45 minutes. So another call to the nurses (love being able to call them!). Once the nurse learned that Lily had Epilepsy she said to give her the meds now so I did. It didn't matter however. One hour later Lily had her first Febrile seizure. It lasted somewhere between 14 seconds-1 minute (long story over why it's so hard to tell and since this post is going to be really long anyway I am just going to leave it out). She was taken back to the hospital by our buddies from the fire station (who Lily had just visited that day!) and was released shortly there after. The fever disappeared after the seizure and never returned.
Jump ahead now to that Tuesday, May 31. Lily awoke with a rash all over her legs. It's not unusual for either one of my kids to break out in a rash but this was not a kind of rash I had seen. So I couldn't take her to school until I got it looked at and made sure it was something contagious, so back off to the ER again! Three times in three days! Poor kid! But Lily LOVES the hospital, thank goodness! Anyway, long story short they told me that Lily had Hand-Foot-and-Mouth disease and that she could not be around other children for two weeks! Oh no, what about our trip?!? Tracy didn't buy it especially since Lily's rash looked like it was disappearing (with HFM disease the rash stays around for 7-10 days, not hours!), so he called a couple of her different Dr's and they said that it didn't sound like that at all, to try and see if she could see her Ped that day. Well her Ped was full and unable to see her so Tracy took Lily to StatCare (for those of you outside our area, it is one of those Urgent Care places). The StatCare in Jackson twpship has never steered us wrong so I was totally ok with this. Lily got seen by one of our favorite Dr.'s there, Lisa Vaughn. She took one look at Lily's throat and said we need to do a strep test. And yeah it came back positive. She never had HFM disease or an ear infection! Her ears were clear and the rash was almost completely gone. I had changed laundry soaps over the weekend and yes they did know that at the ER. Anyway, because Lily had been on antibiotics since that Saturday, she was not longer contagious and we could still go to NY. So we did!
The Conference was amazing! The hotel was beautiful, the food was great, the rooms were beautiful and comfortable! Our schedule for the weekend was great too! They were somethings schedule to do but there was a lot of time for the families to spend time together, getting to know each other, etc. On Sunday we got sometime to spend with the researchers which was very nice. Many of the researchers were very warm and outgoing. Honestly I really did except some stuffy old men in white lab coats (I know shame on me for generalizing) and I was pleasantly surprised that there were NO stuffy old man there in white lab coats.
Lily was a big hit with everyone, she is so outgoing and very much her father's daughter. She was of a great interest to many of the researchers. Several of the researchers I spoke with feel that Lily's Epilepsy and the Canavan are NOT related due to my husbands family history of Epilepsy. If that is the case (and there is no way to know for sure) then Lily would be totally symptom free. Many also told me that they feel Lily is the key to better treatment and if not outright curing the disease. We are gearing up for some lab work here.
Now we are home and I am more determined than ever to raise awareness and help these amazing kids.
So I will let you in on a little not-so secret, lol. I am now working on creating the Fight For Lily's Future Foundation! This may be a slow process because I don't want to mess anything up, but I got a lot of great help in my court (Thank you Sarah and Michelle!!) as well as Akron Legal Aid (Thank you whoever decided to included non-profits at Legal Aid!!), so we will begin to slowly creep forward in this endeavor.
And in other news we also have one more fund raiser coming up! It's a poker run and you can see all the details at http://www.facebook.com/home.php#!/event.php?eid=125880944161730
Ok well this wasn't nearly as long as I thought it was going to be. I have to be up early tomorrow and am running outta steam. So good night!!
As always, thank you so much for reading!!
You can fall in love in the span of three short days....I know because I did. Madly, deeply, crazily in love. My love spans this country and the globe! I looked into many eyes this weekend and I will tell you what I saw......intelligence, understanding, love, and many bright beautiful spirits! Tell me, if you tomorrow awoke to find that you had lost the ability to speak, to move your arms and legs, etc. would you still be able to communicate? I think not. But I found this past weekend the children with canavan can still communicate! They do so with their eyes and they touch your soul! If you ever get the chance to meet a child with canavan then I implore you to do so. I think you would be amazed at these wonderful children.
Ok so now we are going to take a trip in the time machine to Saturday May 28th. Around five o'clock that evening Lily developed a fever of 100.6. Not too high, but any fever is too high when you have epilepsy. So I gave her something for the fever and it went back down. However, soon she started complaining that her ear hurt. So I called the nurse and she told me to take her in to be seen. So I did and she was diagnosed with an ear infection. We were given an Rx and off we went. We filled the rx and came home. Lily fell asleep on the ride and I noticed when I put her on the couch that she felt really hot again, so I took her temp again. 102.4 under the arm and I was not supposed to give her anything again for the fever for another 45 minutes. So another call to the nurses (love being able to call them!). Once the nurse learned that Lily had Epilepsy she said to give her the meds now so I did. It didn't matter however. One hour later Lily had her first Febrile seizure. It lasted somewhere between 14 seconds-1 minute (long story over why it's so hard to tell and since this post is going to be really long anyway I am just going to leave it out). She was taken back to the hospital by our buddies from the fire station (who Lily had just visited that day!) and was released shortly there after. The fever disappeared after the seizure and never returned.
Jump ahead now to that Tuesday, May 31. Lily awoke with a rash all over her legs. It's not unusual for either one of my kids to break out in a rash but this was not a kind of rash I had seen. So I couldn't take her to school until I got it looked at and made sure it was something contagious, so back off to the ER again! Three times in three days! Poor kid! But Lily LOVES the hospital, thank goodness! Anyway, long story short they told me that Lily had Hand-Foot-and-Mouth disease and that she could not be around other children for two weeks! Oh no, what about our trip?!? Tracy didn't buy it especially since Lily's rash looked like it was disappearing (with HFM disease the rash stays around for 7-10 days, not hours!), so he called a couple of her different Dr's and they said that it didn't sound like that at all, to try and see if she could see her Ped that day. Well her Ped was full and unable to see her so Tracy took Lily to StatCare (for those of you outside our area, it is one of those Urgent Care places). The StatCare in Jackson twpship has never steered us wrong so I was totally ok with this. Lily got seen by one of our favorite Dr.'s there, Lisa Vaughn. She took one look at Lily's throat and said we need to do a strep test. And yeah it came back positive. She never had HFM disease or an ear infection! Her ears were clear and the rash was almost completely gone. I had changed laundry soaps over the weekend and yes they did know that at the ER. Anyway, because Lily had been on antibiotics since that Saturday, she was not longer contagious and we could still go to NY. So we did!
The Conference was amazing! The hotel was beautiful, the food was great, the rooms were beautiful and comfortable! Our schedule for the weekend was great too! They were somethings schedule to do but there was a lot of time for the families to spend time together, getting to know each other, etc. On Sunday we got sometime to spend with the researchers which was very nice. Many of the researchers were very warm and outgoing. Honestly I really did except some stuffy old men in white lab coats (I know shame on me for generalizing) and I was pleasantly surprised that there were NO stuffy old man there in white lab coats.
Lily was a big hit with everyone, she is so outgoing and very much her father's daughter. She was of a great interest to many of the researchers. Several of the researchers I spoke with feel that Lily's Epilepsy and the Canavan are NOT related due to my husbands family history of Epilepsy. If that is the case (and there is no way to know for sure) then Lily would be totally symptom free. Many also told me that they feel Lily is the key to better treatment and if not outright curing the disease. We are gearing up for some lab work here.
Now we are home and I am more determined than ever to raise awareness and help these amazing kids.
So I will let you in on a little not-so secret, lol. I am now working on creating the Fight For Lily's Future Foundation! This may be a slow process because I don't want to mess anything up, but I got a lot of great help in my court (Thank you Sarah and Michelle!!) as well as Akron Legal Aid (Thank you whoever decided to included non-profits at Legal Aid!!), so we will begin to slowly creep forward in this endeavor.
And in other news we also have one more fund raiser coming up! It's a poker run and you can see all the details at http://www.facebook.com/home.php#!/event.php?eid=125880944161730
Ok well this wasn't nearly as long as I thought it was going to be. I have to be up early tomorrow and am running outta steam. So good night!!
As always, thank you so much for reading!!
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