Calm Amongst the Chaos

Oh my oh my. What a mess we are in. Sigh. I don’t know what happened, but Lily was no longer doing awesome on the combo I put her on. She started having tonic seizures where she just shakes and then screams and cries for a half hour later. Not a good thing. At least with the other GM she was having she would have it for a few seconds, then smile, then sleep. None of these are good and if I go on a tirade about my frustrations with this study I will waste energy so I am just going to stick to the facts.

I told study RN I put her on Vigabitrin. She said they need to see her ASAP. Lily’s neuro is out of town so we saw his partner on Monday. He is a real nice guy, I remember he was on call when Lily had her video EEG last summer and he remembered us. He said we need to take her off the V for the study sake. I said only because she is doing worse I will do that. This past weekend Lily was throwing these fits of rage and screaming for reasons we had no clue about. She was miserable and I saw that V was not the answer like I (dr. mom) thought. So I told the Dr. I am willing to try something different. He thought Keppra would be the safest bet. We tried this years ago, I am certain it will not help, but who knows. It has been well over three years since trying different meds, she might react different this time. Only negative side effect of Keppra is it can cause behavior issues. I asked for an example and he said “Well a totally normal kid tried to kill his family with a knife”. “Ok then” I said “What is an example of a kid like Lily having a behavioral issue?” and he said “Crying, you’ll know”. Phew…. although if Lily gets up out of her chair and walks over to me, even if it is to kill me, I will be a happy person.
So we had to wean the V which was easy she was only on it a week. We added the Keppra today and she is still on Topamax and the study drug. I am not a fan of three drugs and if the Keppra shows any improvement I am ready to show Topamax the door. She has been on that one FOREVER and it has never done much for her so it is time to hit the road. Of course we can’t make too many changes at once, so that is in the future.

So as of right now we are having a rough patch. Lily is upset. Seizures are a mess and I am as confused as ever. I wish I never told the Dr. she had drop seizures, none of this would have ever happened. The drops are easy to deal with. Much easier than all this bull. Sigh.

Good news is we are getting out of dodge. Ugh! It is so hot and nasty here. We are going up to my parents place in Greer, AZ. We aren’t staying at the house in the link, that is my dads rental property. We are staying with my parents in their house. The rental has a steep stair case that we can’t do with Lily. But that is to show what a getaway it is. We love Greer! Oh and the little girl in pink is Andi roasting a marshmallow!

We wish you all a very happy and safe 4th. Send us some good vibes and prayers Lily only gets better from here.

Oh and one more thing…. Lily and Andi are going to be big sisters! We are having one more baby! Our due date is Feb. 8th, 2009! Can you believe it! Wow!

So Lily and I headed to SLC on Sunday afternoon. We arrived at 7:30pm, got in a cab and got to the hospital after 8pm. We arrived hungry, but the cafeteria was closed. They did have a parent room and I found a yogurt, pudding and milk for Lily. I had a microwavable burrito and then we went to our room. It was pretty decent considering it was free. Two twin beds, a big handicapped bathroom, blinds that wouldn’t close and thank God a TV, with no remote, but there was a TV.
I knew Lily wouldn’t be able to sleep on a twin bed with no rails so I put her mattress in the middle of the bedspring of her bed and my bed; she slept really well and safe that way.
Monday we got up went to the cafeteria and ate. The staff there was very friendly; we ate well and headed over to wheelchair clinic. I met two very nice men, one in charge of wheelchairs and the other the PT. After over looking her chair they recommended that we kept her frame another year and we just “extreme makeover” it. They said if we go up in size it will be large and much heavier and will last her 5 years. I agreed that I like the weight of her frame while trying other chairs and agreed to fix up her chair. And by doing that we were able to leave by Wednesday instead of Friday.
So after a long and very throughout fitting we left Lily’s chair in their hands and borrowed a little Pixi chair far too small for her. The rest of the day was eating in the cafeteria, trying to go for a walk, but it was really hard since the hospital is on a steep hill. I knew I would never make it back up, so we went back to our room. They had a large play room, but there wasn’t much for Lily to do. I felt bad, but we spent a lot of time holed up in our room.
By late Tuesday afternoon we got her chair. It looked great. She actually looked small in it. Before she looked like the hulk in it. We have hopefully another year to go, unless she has a huge growth spurt, highly possible, but we should have another year to go in the chair. They really cleaned it up. It looks great.
We headed home Wednesday, the flight there went so smooth. I was nervous to travel alone with Lily, but everyone was so helpful, I had no problems. My luggage was there when we made it down to the baggage claim and it was just a smooth transaction. Unfortunately the way back wasn’t as smooth. I had helpful people and I was grateful, but the plane of late, baggage was late, etc. It was a crazier security situation in SLC and I was a little stressed, but we survived and her chair made it on and off the plane twice with no harm done. Andrew and Andi were waiting for us when we got off the plane that was fun!
Lily and I got a bad cold over there and we have been nursing our colds at home since. I don’t know where we got it, but with the 112 degrees outside and bad cold, life isn’t a blast.
Today Lily and I are home alone. Andi went to school, Andrew is at work and we are bumming. I am catching up on my blogging, laundry, and rest. It is nice. We may go into the pool a little later; it would probably do us some good to get outside.
So that was our trip.
Now about this study, I did something I wasn’t supposed to do, but you know what. I don’t care! I was wrong about thinking the increase was helping. She had about up to 3-4 grand mals (tonic/clonic) a day. She was having a seizure sleeping, waking and sleeping. Reminded me a whole lot of where we were before brain surgery and I AM NOT going down that road again. Lily needed to be back on Vigabitrine and I don’t give a flying F what anyone says about the study. Guess what; one day on Vigabitrine, the GM’s were gone. She needs that med. She should have never been taken off that med and I am mad we went that long screwing around with that other med. It made her seizures worse.
So I got a call today from the study RN. I was waiting until next week before calling her. I wasn’t in the mood to plead my case quite yet, but since she called, I spilled. She seemed a little frustrated, but I said sorry I am done watching her suffer, watch her regress in therapy and just done watching her seize when I knew she didn’t have to. I’m so glad we had a whole box of that left. Study RN said she’d look into some stuff and call me back. I don’t care; we fulfilled our agreement to this thing. The paperwork I signed says I can back out AT ANY TIME, so there. Done! If they can keep us with her taking Vigabitrine, fine, but I don’t care if they can’t. By the way, I wouldn’t have done that if I didn’t feel it was absolutely necessary. Her neuro said to up it twice and if that doesn’t work than we gave it a chance. He is now out of town now and I didn’t want to deal with one of his colleagues that don’t know Lily. I know what works and what doesn’t.
So I will let you know what happens from here. I feel like I completed my end of the bargain and Lily deserves more.
I have a tough day ahead tomorrow. I will help mourn my friends lost daughter. I am so sad for her loss and am not sure what to say. I just pray I can just be there and listen. It is just not fair. Send prayers to her for comfort.

So it happens. It happens when I am not expecting it. I really hate when it happens, but I also know that is what makes me “normal”.
I get hit by the mack truck of “what if”. Or what “should” be. I try to duck and cover from it, but sometimes, just out of the blue I am knocked on my ass.
Andi does this annoying thing where she asks us many times a day when our birthday is. She knows all our birthdays. Month and day. I wouldn’t be surprised if she knew the year. She asks me my birthday and I say “February 4” and she says, “No December 19th” then she goes on to say that “Daddy’s is February 26th”. It is actually rather freakishly and I am not going as far as to call her smart because the child still can’t pick out an A out of a line up. But she can tell you the minute my toe nail polish color changes and if my outfit is new.
Anyway, yesterday she was asking me the infamous, when is my birthday question, and I said it fast to get the conversation over with and I just thought for a second, what would Lily say at the 100th time she had to answer August 28th. What would be a reply of a 5 and a half year old responding to her annoying little sister be? And just as I thought that, I felt a dagger cut through me. Something as simple and a thought, a wonder, knocked me down.
I want to see Lily react to her sister. I want to see her tell her sister where to go with her questions. I want to see them bicker. I want to see them play. Sometimes I say and I do feel that we got the best of both worlds with both our girls, but sometimes I can’t help but to selfishly want Lily to just snap out of it and act like she should. I love to cuddle her in the rocking chair, but what I wouldn’t do for her to tell me that she doesn’t want to sit in the chair with me. What I wouldn’t do for her to want to play dress up with her sister. What I wouldn’t do to see her not struggle with every single thing she tries to do that just comes to all of us so naturally.
Sigh.
I know all this wanting gets me nowhere and sets me back further than where I was just the day before, but what can I do? It is human nature to want normalcy. And not normalcy in what our family now considers normal.
This whole process of having a special needs child is so Paula Abdul circa mid 1980’s “two steps forward, one step back”.