Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

Manic Monday

Kim Nothdurft

1 comment

April 16, 2008

I remember driving around with my mom and sister and on the radio is blaring “Just another Manic Monday” and my sister and I are singing our hearts out. I didn’t get it. Sunday was not a fun day, that was church day. Saturday was my fun day. I didn’t realize however just how true that song would ring to me, what 20 years later. Mondays are manic.
Lily did well in OT and Speech. She did great in Hippo, but it is already getting too hot and we will have to move Hippo (Horse) from Monday at 11am to Mondays at 7 am (!). She did great in music therapy as well. After Music we had to go to the hospital for the study. Thank God though it was (finally) a quick one. Blood pressure, weight check and give them the old meds and journals and got new ones. Quick but still annoying.
Tuesday both girls had a dental apt. It was Andi’s first and Lily’s second cleaning. Lily did awesome, just like last time. We were complimented on her great teeth and I take 100% credit for that one. She did great and loved it. She loves that little suction thing. She is so cute. Everyone there loved her shoes and kept telling me how beautiful she is.
We go to the best dental office. It is for kids only and man are they good. I just wish everywhere we went Lily was treated like that.
Andi was adorable and of course had everyone laughing. She is quite the character. They said her teeth are all in and perfect. Her next appointment she will get a cleaning.

**I was just at lunch and left this post open to finish when I came back. While at lunch I got a phone call from Lily’s teacher. Lily had a 5 minute grand mal. I’m pretty upset. A lot upset. I have yet to see that big of a seizure in quite sometime. I knew they were creeping up on us. Little 15-30 second ones, one to two times a day. But not a 5 minute one. Things have been going so great. So smooth. I am sick to my stomach that stopping Vigabitrine, getting on this study has been a horrible idea. A horrendous idea. I could be getting ahead of myself. I am not sure. I will see if this happens again, but I am just sick about this. **

Being Thankful

Kim Nothdurft

1 comment

April 11, 2008

So many times I hear, I bet you are so grateful for Andi after having Lily and I think to myself, no I am thankful for Lily after having Andi.
This was me trying to shop at Ikea with Andi yesterday. She was mad that I took away a yellow dolly from her that she was using to tote around a little pink hippo.

Annoyance

Kim Nothdurft

2 comments

April 10, 2008

I am a little annoyed right now about the whole fact of this study. Lily had a seizure this morning before she got on the school bus and it made her tired and spacey. She didn’t have those until we weaned her from the Vigabitrine and I don’t think her being on Topamax only is a good drug therapy for her. It really upsets me.
This is my reason for being pissed. Her Dr. really swayed us in the direction towards this study, swearing this med will help Lily. No mentions of a placebo option until we were already balls deep in paperwork and a commitment had been made. The Dr. is the head of the study so really this is for him. We could have easily gotten the drug from Canada as we got the Vigabitrine, and tried it and seen if it worked. But he said we would all be helping each other out if we did the study. The drug would be free, which honestly is a big draw, meds out of the country, not covered by insurance, obviously. And we would be getting a drug kids need FDA approved AND Lily would get better. But no one said, well if she gets the placebo, you are wasting your freaking time. And that is bull to me.
Now I am having to go to Phoenix every other Monday or Tuesday, Lily has to sit on a toilet for hours to get some pee out of her, it leaves her bum red and sore and me annoyed. She has to have her blood drawn every two weeks. She is off a med that helped her and now suffering from new seizures. It all seems wrong. I get placebo in adults, but freaking non verbal kids who are as I am told severely mentally retarded. Like Lily can pretend to not have a seizure or pretend to have one b/c her mind thinks she is on a med or not. Bull.
This is all bull and I am getting more pissed as time goes on. Time wasted.
Plus the contract I signed said we will be paid $35 a visit for our “time” more like for the ridiculous amount of gas I am wasting. But whatever. Monday will be our 9th visit with out one dollar to show for it.
I am calling bull and you better believe I will make my feelings known this coming Monday. You better believe it.
I love it when they say, is she better, same or worse. Worse biotch… this study sucks. And they look at me and say, tell me how you really feel.
Sigh…. just so annoying. I think we need to do a count down for this damn thing.

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